Skippy has passed; 12 y/o Yorkie with likely pituitary tumor (Trilostane)

[Carole Alexander]

Hello to all and thank you for this forum; I am exceedingly grateful for your knowledge and counsel on behalf of those of us who are struggling to understand this devastating disease. My dog Skippy, a nearly twelve year old Yorkie, has been diagnosed with Cushings. He is symptomatic, i.e., PU/PD, aggressive eating, significant lethargy, the classic pot belly and some weakness in his rear legs. Skippy's blood chemistry is "normal", and an ultra sound of his adrenals revealed one adrenal is enlarged with an adrenal tumor and the other is "slightly smaller". The ACTH failed to confirm whether the Cushings is pituitary or adrenal related. I believe his numbers were 4.6,5.4 at 4 hours and 3.6 at 8 hours. My vet has ruled out diabetes and renal failure. While I have read an exhausting number of articles, I am uncertain as to what I should do next and still don't know what I don't know. My options appear to be to start him on Vectoryl/Trilostane to see if the drug "works" or take him to Purdue University for a second workup and MRI? (The initial cost is estimated at approximately $1,500). (Purdue is a vet teaching hospital but they do not specialize in endocrinology as far as I can determine.) I don't know if he is a candidate for surgical removal of the adrenal gland and/or if I would subject him to surgery despite the cost.

I would appreciate any feedback that you all can offer. Should I ask the vet to perform the LDDST? I don't believe he has hypertension or proteinuria, but I will double check.

Thank you for any advice that you might offer.

[labblab]

Hello Carole, and welcome to you and Skippy. As you'll see, I'be moved your reply so as to create a thread that is your very own. This way, it will be easier for our members to reply to you directly. ;)

First of all, it appears that Skippy's diagnostic blood test was actually the LDDS and not an ACTH. The LDDS involves a baseline blood draw and then subsequent draws at the 4 and 8-hour marks. The results you report for Skippy are consistent with both the LDDS protocol and also with a dog who suffers from an adrenal tumor as indicated by the ultrasound imaging. So it would seem to me as though you do have the diagnosis in place, unless your vet is somehow questioning the accuracy of the ultrasound.

It is rare, but possible, for a dog to suffer from both a pituitary and adrenal tumor. When you speak about the $1500 estimate for an MRI, is that referring to imaging of the head to establish whether or not there is also a pituitary tumor? Or are you seeking more detailed imaging of the adrenals? I would not think that additional abdominal imaging would be that expensive, and in honesty, I believe I'd choose to invest my money in additional adrenal diagnostics since a tumor is known to be there. Depending upon the clarity of the initial imaging, you may want to seek another view along with the advice of a board-certified surgeon. Adrenal surgery is always a very serious undertaking, but the exact size and location of the tumor can greatly affect the risks and time frame for intervention.

There's much more we can talk about, but I'll quit for now and await your reply. Once again, welcome!

Marianne

[Carole Alexander]

Marianne, thanks for your quick reply. My vet is scheduled to call me at noon today. I will seek answers to the issues you raised and clarify the testing issues. I presume that if he had the LDDST as you stated, there is no reason to perform the cortisol test. I will reply with additional info about the proposed MRI shortly. Also, Skippy, a Yorkie mix is 12 not 15.
Thank you again for your help.

Carole

[labblab]

Whoops, so sorry about prematurely aging Skippy!! I've now edited his age so it should be correct.

And yes, given a "positive" result on an LDDS in conjunction with an adrenal tumor viewed on ultrasound, I don't think I'd spring for an ACTH right now unless it was desired in order to provide a baseline cortisol reading prior to beginning Cushing's medication. In terms of diagnostics, the ACTH often provides a "false negative" result when adrenal tumors are involved. In other words, the ACTH will fall within normal range even though an adrenal tumor may be causing hormonal abnormalities. So the LDDS is actually the better diagnostic blood test when an adrenal tumor is suspected. However, regardless of tumor type (pituitary or adrenal), the ACTH is the blood test that is used for subsequent monitoring of medication's effect on lowering cortisol levels. So for that reason, some vets prefer to document a baseline ACTH level before treatment begins, in addition to the LDDS.

Marianne

[Carole Alexander]

Thanks again Marianne for your reply. I spoke with Skippy's vet yesterday and ultimately I decided to proceed with an MRI of Skippy's adrenals before trying medication. The vet thinks Skippy is in excellent health and that he is very "early" onset Cushings. His enlarged adrenal is.9.7 centimeters; the other plump adrenal is .7 (If I recorded her statement correctly.) She said the tumor has not invaded Skippy's vessels and the tumor itself may be hyperplastic. She believes that further imaging of the adrenals will clarify treatment options so off to Purdue he goes as soon as I can secure an appointment.

If they recommend surgery and pursue that course of action, would it mean that Skippy will be on cortisone for the remainder of his life?

Skippy does not appear to be in pain; he is more like a chubby lump, very lethargic and disinterested in life beyond drinking, eating and peeing. The change is shocking as previously he was hyperactive, constantly playing and wanted to be outside every hour of the day.

I will update this post when I learn more. Thank you.

[Carole Alexander]

Skippy is scheduled for a consultation next Monday. I will post again when I know something more.

[labblab]

Carole, I'm hoping you'll gain some really valuable information from the consultation. One of our members has compiled a very helpful list of questions to ask when considering adrenal surgery -- I can't seem to find it right now :o, so I'm hoping one of other staffers will add it here for you, or else I will hunt again a little later on. Either way, we'll make sure you see the list before Monday.

Also, most dogs do not need steroid supplementation long-term after successful adrenal surgery. The remaining adrenal gland typically ends up being capable of producing sufficient hormonal reserves all on its own.

Marianne

[Carole Alexander]

I searched under "adrenal tumor" and found the article you referenced. It is indeed very helpful. Thank you and I will post the link when I have a second.

[molly muffin]

Hi Carole and welcome to you and Skippy.

I believe this is the list of questions that Marianne was referring to and you probably found. I'll post it here so it is easy for you or someone else to find


Part I - Questions to ask when considering if surgery is an option for your dog’s adrenal tumour:
1. What type of tumour do you suspect, ?functional, ?non-functional, pheochromocytoma, benign, metastatic
2. Expected life span for my dog in a normal situation. If your dog is close to, at or past his expected lifespan for his breed is surgery going to be of any benefit?
3. Prognosis for my dog if we treated medically i.e. with Cushings medications. AND if we do not proceed with surgery how long do you think it would be before the tumour started adversely affecting his quality of life?
4. If he is miserable now, does the benefit of potentially risky surgery outweigh his current quality of life?
5. Are there any other health problems that could impact on a positive surgical outcome, for example: if your dog is overweight or has heart, BP, liver, kidney or lung conditions
6. Is there any sign of tumour spread – imaging should be done, including ultrasound and on advice of specialists either CT or MRI to check whether there is local invasion around the tumour, into blood vessels including vena cava or spread further away in the body to lungs etc
7. Surgeon recommendations – would he/she do it for their own dog?
8. Psychological impact for the owner: It is important to understand this is risky surgery, sadly current guidelines indicate 1:5 dogs do not make it, and some recommendations are not even that high. Can you accept it if your dogs dies during or in the postoperative recovery period surgery? This is where it is important to weigh up whether the benefit of your dog being fully cured is worth the risk of possibly losing him.
9. Financially – can you afford it? Find out estimate of costs.
10. Hopefully this will not happen, but if your dog collapses, e.g his heart stops either during his surgery or afterwards what emergency measures should be undertaken, do you want your dog to have CPR, how far are you (the owner) willing to go for your dog to be saved in such circumstances

Part II - Surgery has been recommended as treatment for your dogs adrenal tumour, here are a few suggestions on what questions you should ask your surgeon:
1. Are you board certified? How many operations of this type have you done? What complications have you experienced? What were the outcomes?
2. Please explain to me how you will do the surgery, which part would likely give you the most trouble? Will you be doing the actual surgery or a resident in a teaching situation? If so, is their close supervision?
3. Will there be a specialist anaesthetist available for the surgery?
4. If it hasn’t been done, do we need a CT/MRI scan to look at the tumour more closely to check for vena cava involvement or any other tumour spread?
5. What are the risks associated with this surgery, including
• Bleeding (including trauma to blood vessels or other organs during surgery)
• clots
• Blood pressure or heart problems such as arrhythmias
• pancreatitis
• pneumonia
• kidney failure
• infection
• wound problems
• bowel problems
• anaesthetic risks
• adrenal insufficiency or electrolyte abnormalities
• death (sorry but you have to ask that risk too)
6. If we proceed with surgery does my dog need preoperative treatment with Cushing’s meds, antihypertensive if high blood pressure is a problem – phenoxybenzamine recommended preoperatively for dogs with pheochromocytoma, anticoagulants or anything else?
7. How will you treat to prevent clots postoperatively?
8. What would you do if you found anything else during the surgery i.e. nodules in other organs e.g. spleen, opposite adrenal, liver, kidney. Would you remove them and what are the risks associated when doing additional abdominal surgery together with adrenalectomy
9. How long will it take and when will you contact me so I know all is OK, when can I visit after surgery?
10. How will the postoperative period go, how long would you anticipate he would need to stay in hospital? How will we manage pain?
11. What monitoring would be needed, e.g. heart monitoring, oxygen levels in the postoperative period
12. If your dog has an adrenocortical tumour affecting cortisol production will he need to be on steroids following surgery and for how long?
13. If there are problems when I take him home, who do I contact? Hopefully the surgical team until all is stable.

I think you'll know more after the consult at Purdue. Surgery is always a risk, so any information is always helpful in making a decision on what step to take.

As Marianne stated quite often after having an adrenal gland removed, the other one kicks in and no further medication is needed long term.

[Carole Alexander]

I am posting a follow-up to my earlier posts with the hope that some may find it helpful.

On 12/4 Skippy had a complete work up at Purdue (excluding neurological). They kept him overnight and did a second ultrasound and an additional test similar to the ACTH stimulation. They did not believe that the adrenal gland was tumorous and diagnosed pituitary cushing's.

Skippy has been on a regimen of 10 mg Trilostane twice daily since 12/6. On 12/19 they reevaluated and tested ACTH levels. I can't remember the pre test number but the post test was 7. something. (I will secure a copy of his test results and post them.) Purdue sustained the dosage at 10 mg twice daily.

The vets at Purdue seemed most concerned about clinical symptoms of peeing, drinking and eating. Clearly there has been a significant reduction in the first two. Not so much on the eating front as he had gained a pound between visits. I am concerned that I am seeing very little improvement in other quality of life and physical appearance symptoms. Skippy's belly remains very bloated, skin and fur still thin and his hair is not growing back. He is very lethargic, has muscle weakness in rear legs, a sore on his shoulder and an external tumor on his anus that bleeds and collects feces. (They aspirated the tumor and think it is probably benign; they speculated that it may be caused by Cushing's and will diminish in size with treatment.) Skippy will take short walks and yesterday was willing to play with a toy for a couple of minutes. However, he is now shaking when I put him in the car or try to bathe him. (The shaking first started right before diagnosis and has continued.) His legs shake when he squats to poop.

So, I am pretty disheartened after 25 days of treatment. Skippy will be retested on 1/23. Purdue did not do an MRI as they felt confident in their diagnosis. I will post his numbers when I secure a copy and provide updates as it seems appropriate. I know that reduction in symptoms takes time but I am so concerned that his quality of life sucks and will not improve.

But, tomorrow is a new year and hope springs eternal.

Best,

Carole

[labblab]

Welcome back, Carole, and thanks so much for this update. I'm glad to know that you are seeing improvement in Skippy's thirst and urination. Unfortunately, improvements in some of the other symptoms such as skin, coat, muscle weakness, etc. usually take a significantly longer time, even when cortisol levels are optimal. I tell you this, actually in the hope of offering encouragement. I know how upsetting and frustrating it is to await positive changes, but I want to reassure you that it is not abnormal to have to await some of these improvements. It doesn't mean the medication is not working, just that it will take some time.

Having said that, I am thinking you could ask to push up the date of Skippy's next monitoring ACTH if you are feeling really impatient about his results. It looks as though Purdue is waiting for a full 30 days after the first monitoring test (which was done at the two-week mark). Perhaps they feel this will give Skippy a better chance to stabilize on his current dose before assessing the need for a dosing change. But many clinicians follow Dechra's published recommendation to retest when the first 30 days of treatment has been completed. So that would be in just one more week for Skippy.

Personally, I might go ahead and wait until the 23rd myself, especially since you are indeed seeing some outward improvements. But I just wanted to mention retesting sooner as an option for you to consider if you become too worried about some of Skippy's symptoms.

Either way, we'll remain anxious to read your updates!
Marianne

P.S. You'll see I've edited your thread title to reflect Purdue's revised diagnosis and Skippy's treatment. ;)

[Carole Alexander]

Thanks Marianne, I am going to wait until the 23rd for the second ACTH test. I just read some research out ofa Davis study that said they used a standard of a 5 or less cortisol level as their standard for effective treatment' I think waiting longer will secure a more accurate assessment of how Skippy is responding to the 20 mg Trilostane.

I am concerned about the tumor on his anus as it began bleeding again last night. I have been treating it as if it is a wound but it does not seem to be healing. (Maybe the Cushings is causing slow healing.) He really, really doesn't want me to touch it so I'm spraying with a medication that is supposed to be healing and non-stinging. If anyone else has experienced the anal tumor condition, that was determined to be Cushings related, I would welcome hearing more about your experience. Purdue said that external anal tumors are common in non castrated males, but Skippy is castrated. They suggested that treating the Cushings might shrink the tumor.

Anyway, again and simply, thank you for sharing your knowledge, experience and support.

[molly muffin]

Hello Carole. high cortisol can cause healing to be slower. I don't know that I've ever heard of a tumor shrinking as cortisol gets to more optimal levels. What it does do is make it better for surgery to remove the tumor, which is probably what will need to happen. This is just a guess on my part and is something that you should probably discuss with the vet. Any risks to having it removed, etc. Did they biopsy it to confirm it is benign? I think I would want to know for sure.
I think that we are thinking the same thing, that bleeding tumors are not good and cannot be comfortable and there is a high risk of infection due to the location and fecal matter getting into the tumor.

[Carole Alexander]

In reading through the threads I observed that many of us are struggling with the lack of improvement in symptoms after beginning Trilostane treatment. After 35 days of twice daily treatment with 20mg of the drug, Skippy continues to show minimal improvement. While peeing/drinking are reduced, all of the other symptoms, lethargy, bloating, trembling, hair loss, weakness in his back legs are unchanged. It would be wonderful to hear from others of you whose dogs have responded/or not to treatment. When did you begin to see changes? Are some of the symptoms permanent? What kind of quality of life does/did your dog have? I feel like I am torturing Skippy right now. This drug must work for some dogs or everyone would not continue to subject their dogs to it. Thanks in advance for your feedback.

[randomguy]

Hello! :) My dog has probably been on vetoryl for 5-6 months. I have not noticed much change at all in his belly, but one doctor told me in his experience their bellies dont reduce in size much, if at all, and another told me it takes time and is different with each dog. He has continued to lose hair. He is pretty lethargic as well. His legs will sometimes tremble as well and there does seem to be muscle loss. At times, I wonder what I'm spending so much money on medicine and testing for...however, I know it's the right thing to do. He's had very good ACTH numbers so he is responding to the medicine well. It's just kind of disheartening. I know I should probably get diabetes and thyroid testing (but those were fine when we last got him tested for it), but I don't have the money.

I want to add that hes either 14 or 15+. I think a lot of this has to do with age. Probably slower recovery just like a person since he's older and also just general decline in health. Not to say that he's not happy; I truly believe he is. He plays and eats and drinks and does all the stuff he is supposed to do, but I sometimes have to remind myself he is a very old dog and it can't all be because of the Cushings. Sorry for the disjointed thoughts! I just wanted to chime in because you asked and give my perspective. It's a long, weird, uncertain journey, but you've taken the right steps and are doing everything you can. I'm praying for you and your dog and hoping for the best! :)

[molly muffin]

My dog never lost her belly, she always had a round, rubbably belly. Her rear leg weakness never really got better either, but we adjusted by putting doggie steps up to the window seat and lifting her to the couch when she wanted up and she'd bark if she needed a lift down. If she didn't feel up to a step, she'd stop in front of it and wait for her "lift" (yes she got to know that word well) and if she felt good, she bounce right up the stairs no problem.

I think that the adjustments we made for her gave her a good life for several more years and that the medication (she was on trilostane) helped too in that her liver didn't get worse. She managed to rule out world like the diva she was with no problem till the very end.

[Carole Alexander]

Hi Sharlene,
Thanks for replying to my questions. I posted in response to Jane and Jess and will post Skippy's numbers from the ACTH tests tomorrow. Purdue aspirated Skippy's perianal tumor in December - no biopsy. They suggested I just remove the thing then as it is likely benign. Today, they were suggesting that I consider Mitotane instead of Trilostane as it might "shrink" it. Also, the Resident was going to consult with their expert in-house at Purdue as she had not seen this problem. Their estimated fee for removal is a hefty $1,500 and the Resident said that if it were her dog she would want a Board Certified Surgeon to do the surgery. I must be brain dead as I had not considered the possibility of infection, duh! I will follow-up tomorrow. Thanks so much, Carole

[Carole Alexander]

Hi RandomGuy,
Your reply is very helpful to me and I thank you. Skippy just turned 12 and before diagnosis was very active, if not wild. I too wonder how much is age, maybe some neurological changes, etc. The suddenness of the changes in his personality and physical condition are startling and saddening. But at least you help me undestand what I may be up against. Thanks again, Carole

[molly muffin]

I would Only ever want a board certified surgeon, as there are risks with any surgery so anything that can lower the risks is good.

[Carole Alexander]

Skippy was seen on 1/23 and I finally received the results today. Also, I secured a copy of his 12/19 results. Here's the update:

12/19/16
Pre Test Cortisol - 2.2 (Reference range 1.0- 6.0) Marked Lipemia
Cortisol (1hr post) - 10.8 (Reference range 7.0 - 17) Moderate Lipemia, Slight Hemolysis

1/23/17
Pre Test Cortisol - 6.3
Cortisol (1hr post) - 16

I haven't actually spoken with the Dr.; the student relayed this info and as I expected they want to increase the Trilostane dose from 10mg morning and evening to 15mg morning and 10 in the evening. Additionally, we discussed the perianal adenoma at length. They think Skippy may have Atypical Cushings in addition to Pituitary Cushings and are offering to run a panel to assess. I have stated pretty firmly that I'm not prepared to switch Skippy to Mitotane at this point. So I asked if there are other treatments (in addition to surgery, which may lead to the return of the tumor) to address the Atypical symptoms. The student didn't know. In respect to the tumor bleeding and the possibility of infection, the best she could offer was that it is not currently infected. I did ask about supplementing Skippy with Lignans and Melatonin but she didn't know about that either.

Clinically, Skippy is barely improved by my assessment and greatly improved by theirs, mostly because of the reduction in PU/PD. He continues to be extremely lethargic, barely interacts and this morning refused to walk and ran back home in fear. Yesterday and several other times he turns around and falls down; he stares off in space sometimes like he is disoriented. Except for his ravenous appetite I could be a lamp post or fire hydrant.

I will schedule the surgery because I am terrified that the tumor will become infected. However, I feel that my interaction with the staff at Purdue is troubling. On Monday, I waited four hours to complete the Stem test; the vet was to call me yesterday with results, but no call; I called them at noon today and was told the vet would call me back shortly but that Skippy was "fine" . I called again late this afternoon and spoke with the student who couldn't answer many of my questions. They were supposed to have a surgeon look at Skippy's tumor on Monday; it didn't happen. I am losing confidence that they are sufficiently professional and knowledgeable about Cushings to appropriately treat Skippy and he continues to suffer. I know that they have senior staff there who are endocrinology experts but I don't know how to get to them. So frustrating and scary.

Molly, I get it about the Board Certified Surgeon. Skippy has enough problems! Thank you.

[Carole Alexander]

I spoke with the student at Purdue again today and she tried to answer my questions. She said that they recommended the Atypical Cushings test; they could offer no opinion as to whether the tumor will or will not return when removed but the cost is now 1 to 3,500k and that they hope the increased dosage to 15/10 will improve Skippy's response. They had no opinion on herbal treatments and no idea of what other conditions might arise if Skippy has Atypical Cushings and Cushing's. Just shoot me.

[labblab]

Omigoodness Carole, I feel your pain! I wish I had more time to post right now, but I'll have to wait and come back at a later time to add some thoughts. Hang in there, but I totally get your frustration. :o :(

Marianne

[Carole Alexander]

Skippy continues on the Cushings Merry go round; today I took him back to the local vet for a consultation and a look at the adenoma on his butt. The vet is of the opinion that the Trilostane dosage is still too low at 15/10 for the past four days; she said to at least increase to 15/15 which would be in accord with the current Drecha guidelines as Skippy remains at 29lbs. So today I will up the dosage. Overall, she would be inclined to increase the dose even more. The vet did not think Skippy needs a sex steroids test - yet. And, she thought we should try to get the Cortisol under control before addressing the adenoma. I feel a little like I am vet opinion shopping right now and I don't mean to do that. But, I am looking for some symptomatic relief for Skippy. After nearly two months, Skippy's cortisol on the 1/23 stim test was higher than the two week stim test (pre 2.2 and post 10.8), i.e., pre - 6.3 and post - 16. He remains quite shaky,belly still bloated, no hair growth, lethargic, does not want to be outside, runs back in after pooping, no interest in playing, appears fearful and is still ravenous. I did order Melatonin and Flax and will start that soon but his butt problem aside, I am at a loss. Oh, yes peeing and drinking has lessened. Please let me know if you think I'm being too demanding or unrealistic. Thanks everyone.

[molly muffin]

Of course you are not being too demanding or unrealistic. You are trying to find answers. With the post number continuing to increase, the increase in medication seems to be warranted.
I do wish that he seemed to be feeling more like his usual self. Maybe the melatonin and flax will help.

[Carole Alexander]

Four days ago, we upped Skippy's Vectoryl from 15/10 to 15/15. Today for the first time in over four months, Skippy is beginning to return to his previous self. He is alert, interacting and sleeping less. No, no hair regrowth; yes, he's still very hungry, but the trembling is mostly gone and he's a little sphinx arising from his own ashes. I am so relieved and very happy that he may actually live with this awful disease. I thought that such a day would never come and I have learned so much from all of your experience, experiences and knowledge and am truly grateful.

[molly muffin]

Wow, cross fingers that this is the right dose and Skippy continues to get better and better.

[Carole Alexander]

Sharlene,
I should have know better than to speak too soon; Skippy had a diarrhea attack on his walk this morning - not a horrible one but definitely very soft stool. Called the vet who said that she couldn't imagine that a 5mg bump caused this. She put him on Imodium 3X a day and a bland diet for the week end. He seems to feel fine and I just took him for a good walk but no poops. I hope this is the right decision as I really don't want to stop the Vectoryl after he's finally responding. I will watch him like a hawk. This vet's opinion of dosing is much more risk taking than Purdue (She told me that their practice just put a 12lb dog on 30mg of Vectoryl.) I'm not sure that is a good thing after all I've read on here about low and slow. But, if I can't get the diarrhea stopped soon, I will stop the drug. Anyway Skippy will be ACTH tested next Wednesday.

The final thing: Skippy's high numbers on the last test on 1/23 (pre - 6.3 & post -16) may be incorrect since Purdue told me to fast him for the test. I challenged that and they said to just feed him enough to ingest the Vectoryl. I fed him a little more than that because I didn't know any better. But, now I wonder if the drug was absorbed? Maybe you all could put together the latest research, Drecha's new recommendations, etc. and we all could start leaving the info with vets as we come into contact with them. Or you could get a grant and create an e-book! Just a thought and thanks again.

[DoxieMama]

Hi Carole,

First of all, you absolutely need to feed Skippy a full meal when you give him his Vetoryl. This includes the day of the ACTH test. You also want to be consistent about the timing of the test, so you can compare apples to apples so to speak. Do you know how many hours after you gave Skippy his Vetoryl they started each of the tests?

Shana


After nearly two months, Skippy's cortisol on the 1/23 stim test was higher than the two week stim test (pre 2.2 and post 10.8), i.e., pre - 6.3 and post - 16.


The final thing: Skippy's high numbers on the last test on 1/23 (pre - 6.3 & post -16) may be incorrect since Purdue told me to fast him for the test. I challenged that and they said to just feed him enough to ingest the Vectoryl. I fed him a little more than that because I didn't know any better. But, now I wonder if the drug was absorbed?

[Harley PoMMom]

As Shana has mentioned, it is critical that the Vetoryl be given with a meal to be properly absorbed.

We have a wealth of information regarding Cushing's; the medications used and the treatment protocols, that can be found in our Helpful Resource Forum and it also includes articles written by some of the most renown veterinarians that specialize in endocrinology such as David Bruyette, Mark Peterson, and Edward Feldman. In this forum you will find a thread that pertains to Vetoryl/Trilostane so please utilize it and if you have any questions do not hesitate to ask them. ;)

Here's a link to our Helpful Resource Forum Helpful Resources for Owners of Cushing's Dogs (http://www.k9cushings.com/forum/forumdisplay.php?f=10)

And to the Vetoryl/Trilostane thread: Trilostane/Vetoryl Information and Resources (http://www.k9cushings.com/forum/showthread.php?t=185)

Hugs, Lori

[Carole Alexander]

Shana, I believe that Skippy was tested (at least he was taken back) approximately 4 1/2 hours after I fed and gave him the Vectoryl dose. The food was a big bite of chicken breast with the pill enclosed and a very small handful of kibble. If the Vectoryl wasn't properly absorbed, am I correct in thinking that his cortisol level would be higher (as it was)? In our two visits to Purdue he has been tested, as Drecha and researchers recommend, at 4 to 6 hours after dosing. The mistake was in telling me explicitly not to feed.

Lori, I agree that there is a wealth of information on this web site and I applaud you all for bundling the research. Certainly, I could have done more reading at the outset, but I am not the doctor. And, the devil is in the details. For example, I read that there are two different products used for ACTH testing. I recall that one is a synthetic liquid and the other a gel. Should a dog be tested with the same product each time? Does it matter? If I take him to my local vet for testing, will they use the same product as Purdue? Another example, Purdue thinks Skippy's sex steroids should be tested; the local vet says not to bother. I ask each one "why" but got no answers. I could offer additional examples but my point in my earlier post was that vets and their staff need to be better informed about Cushing's and best practices in diagnosis, treatment and testing. Recommendations from the researchers seem to be clear, compelling and most importantly, evidence-based. And yet...

[DoxieMama]

Shana, I believe that Skippy was tested (at least he was taken back) approximately 4 1/2 hours after I fed and gave him the Vectoryl dose. The food was a big bite of chicken breast with the pill enclosed and a very small handful of kibble. If the Vectoryl wasn't properly absorbed, am I correct in thinking that his cortisol level would be higher (as it was)? In our two visits to Purdue he has been tested, as Drecha and researchers recommend, at 4 to 6 hours after dosing. The mistake was in telling me explicitly not to feed.

You've got it right. If it wasn't properly absorbed, then the cortisol may be higher. The risk then of course would be to assume that Skippy needs a higher dose when he really doesn't... and to push his cortisol too low on those days when he gets it with a normal meal.

I mentioned the timing just to be sure that was done correctly, and it was. You want to be consistent with that so you're not testing it one time at 4 hours after dosing and the next at 6 hours. My vet and I made sure we were always at nearly the exact same time every time we tested.

As for the synthetic vs the gel... I'll leave that to someone more knowledgeable, as I'm not sure if it matters to use the same one each time. I'd think so, but that's only a guess.

[Carole Alexander]

Thanks Shana, I appreciate your response and feedback. Skippy is doing okay, not my old new dog, but okay. No diarrhea and a little more energy but I will see with the ACTH test next week.

[Harley PoMMom]

I recall that one is a synthetic liquid and the other a gel. Should a dog be tested with the same product each time? Does it matter? If I take him to my local vet for testing, will they use the same product as Purdue?

Cortrosyn is the preferred stimulating agent, Acthar gel has fallen out of favor because of its cost and the compounded version may not yield reliable results, according to Dr. Mark Peterson.

One other difference between these two stimulating agents is the wait time for the post blood draw; with Cortrosyn only 1 hour is needed but when Acthar gel is used a 2 hours wait time is required.

The same stimulating agent should be used for all ACTH stimulation tests, and as Shana mentioned, the timing of these tests should be consistent so one can compare the results as equally as possible.


Another example, Purdue thinks Skippy's sex steroids should be tested; the local vet says not to bother. I ask each one "why" but got no answers.

I see no benefit in testing the sex hormones in a dog with conventional Cushing's because if cortisol is high the sex hormones are most likely to be too.

Hugs, Lori

[Carole Alexander]

Lori and Shana,

Thanks to you both for this info. It is helpful and I probably should be reading more. Tonight Purdue called to remind me of Skippy's appointment on Wednesday at noon. Again, the caller advised me that I was to fast Skippy after 10pm tomorrow. I politely told her that her directions were incorrect and that Skip needed to eat breakfast with Vectoryl. She then said that she was just reading the info on her sheet of paper. I ask her to check with their docs - not for me but for other Cushings dogs that are being tested. She said that she would check but I will insistently raise this on Wednesday when Skippy is tested. BTW, Skippy is slightly improved on most symptoms but he is still not slaying his dragons.

[Carole Alexander]

One more question if anyone can help: Tomorrow Skippy is scheduled for another ACTH test tomorrow. Should I delay this test for another week or proceed since he has had two dosage increases since the last test.
His tests so far:
12/6 - confirmed Cushing's and started Vetoryl at 10/10 BID (Purdue)

12/20 - Pre 2.2 and post 10.8. Dosage sustained at 10/10 (Purdue)

1/23 tested, no results until 1/25 - Pre 6.3 and post 16. Dosage increased to 15/10. (Lightly fed for this test.) (Purdue)

1/30 - Consult with local vet re: continuing clinical symptoms and adenoma; she recommended and I agreed to increase dose to 15/15 BID

2/8 Scheduled at Purdue for 3rd stim test.

Aside from a little diarrhea that has cleared, Skippy has had no adverse reaction to dosage increases. He remains very slightly improved in respect to many of the usual symptoms. My fear is that the dose is still too low and waiting just delays getting the dosage correct. But, I am aware that he may not yet be responding to increases. Tomorrow is the tenth day since last increase. Thanks

[Harley PoMMom]

If this were me, I would proceed with the ACTH test tomorrow especially knowing that the previous ACTH stimulation tests were not performed according to the Vetoryl/Trilostane monitoring protocol that is published. I am including articles that state that Vetory/Trilostane must be given with a meal, this first one is the "Vetoryl Client Brochure" which Dechra publishes, (Dechra is the maker of Vetoryl):

Vetoryl Client Brochure (http://www.animalhealthinternational.com/animalhealthinternational.com/media/Animal-Health-International/Training/Dechra/VetorylClientBrochureSpreads4_20HighRes.pdf)

On page 6 of that brochure:
How do I give VETORYL Capsules to my dog?

Give VETORYL Capsules with a meal in the morning so they can be effectively absorbed. Administration in the morning is critical so your veterinarian can perform the monitoring test at the appropriate time after dosing.

This second excerpt is from an article on Dr. Mark Peterson's blog (Dr. Peterson frequently contributes to Dechra's online continuing education for veterinarians) and is titled: What's the Best Protocol for ACTH Stimulation Testing in Dogs and Cats?


Remember that the ACTH stimulation test is the most useful test for monitoring dogs being treated with trilostane (Vetoryl) or mitotane (Lysodren) see my blog entitled, Diagnosing Cushing's disease: Should the ACTH stimulation test ever be used? Both medications are fat-soluble drugs and must be given at time of meals, or the drugs will not be well absorbed.

With trilostane, it’s extremely important to give the morning medication with food, and then start the ACTH stimulation test 3 to 4 hours later.

Fasting these dogs on the morning in which the ACTH stimulation test is scheduled should be avoided since it invalidates the test results.

http://www.endocrinevet.info/2011/03/whats-best-protocol-for-acth.html

You can print these articles for reference to prove to the vet and staff that they are wrong in directing pet parents to fast their dog when monitoring Trilostane with the ACTH stimulation test.

Hugs, Lori

[molly muffin]

I do think in this case that I would get the test done as scheduled. Especially if for some reason he hasn't responded to the increase as hoped and that post number is still real high.

[Carole Alexander]

Thanks so much to you both. We will go as scheduled along with Dr. Peterson's protocol. You all are the best!

[Carole Alexander]

The update on Skippy is a continuing slog on a very slow and costly testing treadmill. Here's where we are:

12/6 - confirmed Cushing's and started Vetoryl at 10/10 BID (Purdue)

12/20 - Pre 2.2 and post 10.8. Dosage sustained at 10/10 (Purdue)

1/23 tested, no results until 1/25 - Pre 6.3 and post 16. Dosage increased to 15/10. (Lightly fed for this test.) (Purdue)

1/30 - Consult with local vet re: continuing clinical symptoms and adenoma; she recommended and I agreed to increase dose to 15/15 BID

2/8 - Third Stim test after 10 days at 15/15 BID. They just called with results:
Pre - 6.8
Post - 12.0
Purdue student said I should increase Skippy (27.5 lbs) to 15/15 BID; I reminded her that we were already at that dose for the past 12 days with no change in level of hunger, lethargy, fear, unwillingness to walk, etc. (When they examined Skippy and I mentioned these issues again, they suggested an orthopedic work-up.) But, with his cortisol still so high couldn't the cause of these symptoms be Cushing's? We discussed the twice daily dosing again and the student said that in their experience they have had greater success with that approach. (And, I have no objection.) So, the upshot was that the student was going back to confer with the internal medicine vet regarding what to do next, if anything, and would call me back. Skippy only has been on the new 15/15 dose for 12 days so his cortisol could go lower in time. But, he is still so high that I think they should increase the dose somehow even if he needs to be tested in two more weeks. Please let me know of your experience or opinion regarding this problem. And, as always, thank you.

[Carole Alexander]

I spoke with Purdue again and they want to increase the dose to 20/20 BID starting tomorrow and do another Stim test in two weeks. BTW I ask that they look at his adenoma during last visit but their surgeons were too busy with emergencies. It has healed over and I have no plan to do surgery until or unless I get Skippy's cortisol under control. Is it possible that Vectoryl just won't work?
Purdue has raised the issue of switching him to Mitotane a couple of times and always puts the idea in their written report. (Likely because it could perhaps "shrink" the adenoma and reduce the level of sex steroids.) But it's also clear that Purdue and my local vet strongly prefer Vectoryl - as do I. I know that Skippy is not nearly as sick, yet, as many of the dogs on this forum, but the thought of starting over takes me to a very dark place. And continuing to watch him languish breaks my heart. Thank you,

[Harley PoMMom]

Unfortunately a small number of our members have had their dog`s system be resistant to the effects of Vetoryl, but I really don't think you're at that point right now.

Increasing the dose to 20 in the morning/20 in the evening sounds reasonable to me. Having Skippy's cortisol checked in 2 weeks is a great idea and that falls within Dechra`s guidelines.

I know this journey has been so frustrating for you so I'm sending some huge comforting hugs.....keep your chin up! ;)

Hugs, Lori

[Carole Alexander]

Thanks Lori,
I will stop whining - now. I know Skippy and I are very fortunate and the situation could be much worse. I appreciate your kind words.

[Harley PoMMom]

I made a mistake regarding Judy's Abbie being resistant to Vetoryl when actually Abbie started out with Lysodren and when that became ineffective in controlling her cortisol Abbie was switched to Vetoryl, (Thank you Judy for correcting me). I am so sorry for that inaccurate statement. :o:o

Please do not ever feel that you are whining, our hope is that this forum is a place where our members are comfortable enough to share whatever is troubling them, ok? ;)

Hugs, Lori

[molly muffin]

Hmm, so it's still elevated enough that if you wanted to increase the dosage you could. You could even do a 20/15.

Pffft whine away. (I just call it good old fashion worry and concern) :) still if not here then where else could you get it all out and know those reading understand, exactly, what you mean. :)

HUGS

[Carole Alexander]

Lori and Sharlene,
Thank you for your support. My comment about stopping whining was simply to say, perhaps to myself, buck-up and remember how fortunate both you and Skippy are at this point in time. Many dogs and their owners on this forum have lost the battle or are suffering grievously. Skippy does not appear to be in pain, he is tolerating the dose increase to 20/20 that we began on Saturday and while there is no observable improvement in clinical/behavioral signs, he is no worse. My fear is that I am missing something and that Skippy is dying by inches. But ultimately we all die by inches; I understand that and just want to make sure I am doing all that I can to ensure that he lives his remaining inches with the best quality of life possible. Never one to simply accept and endure, I'm going to secure a new blood panel when he has the next stim test in tenish days (he hasn't had one since he was diagnosed in November), an orthopedic evaluation and hydrotherapy (since he won't or can't walk), if it is available at Purdue. Maybe I'm simply reinforcing my own denial but to do nothing and watch him slip gently into the night is completely unacceptable until I have exhausted the possible remedies. If there are other things that I should pursue, I would be grateful for your thoughts or ideas. Thank you again.

[Harley PoMMom]

I think you are doing an exceptional job advocating for Skippy and you are looking into and doing every possible course of action in order to help your sweet boy.

Regarding his dose of Trilostane, Dr Peterson replied to one person on his blog that
smaller dogs tend to require larger amounts of the drug. So it is entirely possible that Skippy's dose just needs more tweaking in order to get his cortisol controlled and see improvements in his remaining symptoms.

We certainly understand how worried you are about your precious boy, so just to reinforce...You are doing an excellent job!!! ;)

Hugs, Lori

Link to Dr. Peterson's quote: http://www.endocrinevet.info/2012/12/low-dose-twice-daily-trilostane.html You'll need to scroll down to May 7, 2015 at 11:29 PM for his response.

[Carole Alexander]

Just a brief update on Skippy:

Skippy had his fourth Stim Test in three months on Thursday. We have now increased the dosage five times, mostly by increments of five since beginning this saga in December. On his current dose of 20/20 (29lbs) his cortisol increased to pre 5.6 and post 13.1. (His last post was 10.) Clearly, Skippy is going in the wrong direction. While his clinical signs continue to improve slightly, many of the behavioral issues remain, e.g., trembling a lot, often trots home after poops instead of going for a walk, is fearful, ravenous and sometimes anxious, sleeps a lot on the wood floor, no interest in play and little interest in being petted or cuddled. Local vet added Xanax and an NSAID to his pill repertoire a week ago. Purdue wants to wait a week on current dose and see if there is improvement in clinical symptoms. If not, they will then retest and run a blood chemistry panel. They kept emphasizing that it's not the numbers but the clinical signs. In Skippy's world, neither are great. The adenoma on his butt is not growing but now the new Purdue vet thinks I should have a biopsy. (The prior vet said leave it alone until cortisol is under control.) My question is whether others have had experience with cortisol levels going up with treatment? Does this suggest that Skippy has a macro tumor? (This vet mentioned the possibility but thought that Skip did't "look like" he had one.) Thanks in advance for any input as I am at a loss.

[Carole Alexander]

I just reread some threads and read a few others related to dosing with Vetoryl and I am still uncertain. Two days ago, I sent the local vet a lengthy email summarizing Skippy's history of dosing and Stim tests and ask to see her. She responded that she didn't need to see him but wants me to increase the Vetoryl dose to 30/30 and Stim again in two weeks. I picked up the 30mg. box last night and gave him the first dose this morning. But, I am very worried that this is too big of an increase. Here's the history:
12/6 79.2 (Began dosing 2 BID with Vetoryl 10ml)

12/20 Pre - 2.2 (Marked Lipemia) Post – 10.8 (Moderate Lipemia, Slight Hemolysis)

1/23 Pre – 6.3 Post – 16
Purdue increased dosage to 15/10 BID

1/30 Consultation with local vet and that day we increased the dose to 15/15 BID

2/10 Pre – 6.8 Post – 12.0
Purdue increased dosage to 20/20 BID

2/23 Pre – 5.6 Post – 13.1
Purdue kept dose the same 20/20 and wants to Stim again in a week.

3/1 Local vet increased dose to 30/30 and I gave one dose this morning.

Is this too big of an increase? I would feel more comfortable going 30/20 but I know the local vet believes that Skippy (29 lbs.) is being seriously underdosed in light of his continuing clinical signs and symptoms. Finally, I emailed Dr. Feldman and he suggested that I discuss switching to Lysodren with the vets.

[Carole Alexander]

Good morning and I hope someone can please help. I increased 29lb Skippy's vetoryl two days ago to 30/30 as directed by his local vet; the IMS said leave to old dose, 20/20 alone and Stim again in a week or ten days. He has been very restless in general at night but was far worse last night. He is trembling, even while sleeping and last night for an hour or so, he was trembling so hard that I thought he was having a seizure. I have watched him all night and he is now sleeping but trembling slightly. Also, he is reluctant to eat and his perianal adenoma has started bleeding but perhaps the bleeding is coincidental. Should I withhold the Vetoryl; the local vet is off today. I could call Purdue and see if they could Stim him again today. Am I overreacting; I am so afraid of overdosing him on this drug. Thanks so much for any help.

[DoxieMama]

Hi Carole,

It seems curious to me that you are getting recommendations from both Purdue and your local vet.. and possibly another vet via email. I would personally choose one vet's recommendations to follow, or at the very least, have them consult with each other and all agree on what to do. As it is now, you've got one telling you to increase, one to stay the same and another to possibly switch meds entirely. I'd be completely confused and uncertain what to do!

If it were me, at this point I think I'd call Purdue and schedule the test they asked for... tell them about the increase and then follow their recommendations.

[labblab]

Dear Carole,

I'm so sorry for you both that Skippy is having these worsening problems. Given his pattern of ACTH results, I actually can't argue with your local vet's recommendation re: the dosage increase and it would seem surprising to me for his cortisol to plummet to a level that is too low within only two days time. But having said that, no matter what the reason, clearly Skippy is not in a good place right now. Whenever a dog won't eat and/or appears unwell, our general advice around here is to temporarily withhold trilostane dosing until things improve. If Skippy was my own dog, that's probably what I would do right now -- hold the trilostane altogether for the moment and see what effect that has. I don't know that an ACTH is urgently necessary because, as I say, it's hard for me to imagine that his cortisol is really too low. But if he doesn't bounce back to his previous baseline behavior by Monday, you'll need to consult with your vet as to next steps.

Honestly, I cannot disagree with Dr. Feldman' recommendation to switch to Lysodren in this situation. The trilostane has not been as effective for Skippy as is typically the case, and he may be suffering medication side effects in addition. Has Lysodren been mentioned as a possibility by any of your vets? If not, I would definitely discuss that option next week. If you did indeed make the switch, Skippy would need to be off the trilostane for around a month, anyway. So giving him a medication break this weekend wouldn't interfere with that game plan.

If Skippy worsens even more today, then certainly you'll want to consult with Purdue before the weekend sets in. But I'm hoping maybe he'll rebound a bit on his own today. Definitely keep us updated, OK?

Marianne

[Carole Alexander]

Hi Shana,
Thanks so much for your feedback and suggestion. I know it may seem like I am vet "shopping" but I was referred to Purdue by my local vet and they are supposed to be collaborating. (I am not so sure that is happening as I think they may disagree philosophically about dosing.) The problem is further complicated by the fact that Skippy's Stim tests keep going up in spite of increasing the dosage. Neither Purdue or the local vet seem to have a clue as to why that is happening. My question to the online expert was to try to answer the "why" of Vetoryl failing to reduce his cortisol and symptoms. But now I perhaps have a new problem and I will call and see if they will Stim him today.
Thank you again so much for your thoughts and recommendations. I have been up all night watching Skippy and am pretty stretched out with this. (He is sleeping and slightly trembling.)

[labblab]

I see that you, Shana, and I were all typing at around the same time, so I'll add this additional P.S. to what I wrote above. If it is not a problem for you to take Skippy in today for the ACTH and Purdue thinks it's a good idea, then yes, you can certainly do that. I would also have them check his electrolytes, as well. And then we can all go from there.

[Carole Alexander]

Marianne and Shana,
Thank you again so much for your counsel. I am especially grateful that you think it is unlikely that his cortisol has gone too low. He is up, quiet but all of his parts seem to be working okay and he is not begging for food. Checking his electrolytes is a great idea and I will call now and see what is possible regarding testing. Thank you again, you guys are incredibly knowledgeable and caring and I am so grateful.

[Carole Alexander]

I forgot to mention that yes, Purdue raised lysodren as a possibility early on after the adenoma appeared on his butt. They prefer trilostane and I have been reluctant to change until we exhaust vetoryl treatment and I have been plain scared of lysodren. I will begin reading as soon as I get thru today!

[Carole Alexander]

Update: I spoke with Skippy's local vet since she had prescribed the increased dose. She said to stop the Vetoryl for the weekend. She didn't think his cortisol was too low given how high it had been last week and the increase in Vetoryl was for only two days. She also didn't think that tremors were suggestive of low cortisol. (I told her that Drecha mentions tremors as one of the symptoms of low cortisol in their monitoring guidelines.) She did not think it was necessary to Stim Skippy today. She speculated that perhaps Skippy has been misdiagnosed and may have an adrenal or macro pituitary tumor (He's had two adrenal US's.) She also mentioned switching him to lysodren. I asked about checking electrolytes and she said that lethargy was the usual symptom, not tremors. (I reminded her that he was lethargic.) In the meantime, Skippy continues to lightly tremor, is very lethargic and will barely eat anything this morning. If Skippy appears to be getting worse, I will call her or Purdue and try to secure a Stim test. Again, thank you so much for your support and advice.

[labblab]

Carole, thanks for these updates. As I had written initially, I doubt that Skippy's cortisol is too low, either. But whether his blood chemistries may be off, I do not know. If he doesn't rally, that would actually be the blood testing I would be more anxious to perform, rather than an ACTH. In addition to his sodium and potassium levels (electrolytes), I would want to check his kidney, liver, and blood glucose values. All of those will be on a standard panel of blood chemistries. The importance of the blood glucose check is because dogs with consistently elevated cortisol levels are vulnerable to developing diabetes, and the onset can be quite rapid.

From what you are describing behaviorally, unfortunately I do think an enlarging pituitary macrotumor may be a possibility. Imaging of the head to evaluate the size of a pituitary tumor is something I'm certain that Purdue can do, but the downside is that a CT or MRI of the head is usually quite expensive. So if it hasn't been done recently, I do think the first place I'd look right now is a basic blood panel including both chemistries and also complete cell counts ("CBC").

Marianne

[molly muffin]

How is Skippy doing off the vetroyl this weekend? Has the tremors stopped?

Hmm, seems to be that Shana's furbaby Visuddha had his cortisol be within normal range but his electrolytes still became elevated so it is possible for electrolytes to be out of whack even if the cortisol is high or in range.

[DoxieMama]

Yes all of Visuddha's ACTH results were within range (5.2, 3.4 and 4.3) but his Potassium was elevated (high normal to high) and Na/K ratio was low, so his dosage was repeatedly lowered.

How's Skippy doing today?

[Carole Alexander]

First, Skippy did rally on Friday after sleeping deeply but tremoring slightly for half of the day; he has done extremely well all weekend after stopping the Vetoryl on Thursday. He is eating and drinking normally for him - peeing and requests to go out are no more or less than on the Vetoryl regardless of dose. No tremors whatsoever; no sudden jumping around at night and inability to settle; no picking at the butt adenoma. Skip was willing to take three long walks on Friday, Saturday and Sunday afternoon, but he’s still doing that weird thing in the morning where he poops and refuses to walk further. He is still lethargic but was a little more interactive than earlier in the week.
Here’s the update on the medical front:
• Two calls from Purdue student, Jessica: On Saturday morning she called to check in on Skippy. I filled her in on the dose increase, severe tremors and withholding Vetoryl. After speaking with the resident IMS, Jessica called me back and said to put Skippy back on a dose of 20/20 for at least three or four weeks; she said that there are research studies that document that some dogs need a much longer time on Vetoryl in order to lower their cortisol to a therapeutic range. I asked her to email the studies and she said she would. She would not speculate on the cause of the tremors but said that perhaps the increased dose was too much. I asked about securing a blood panel and CBC but she said they don’t think that further testing is warranted at this time. They also think that getting cortisol under control is top priority versus addressing the adenoma.
• Local vet (whose vet training was at Purdue) called this morning as promised. She does not think Skippy has a macro tumor either but she’s never seen a dog react with severe tremors and lethargy when his cortisol is too high. She speculated that perhaps Skippy cannot tolerate Vetoryl and raised the idea of switching him to Lidoderm but stated that she had not used it “in years”. She thought because Skippy’s cortisol is down to 13, we could induct him beginning in a week or so, which I questioned. Regardless, I said I wasn’t ready yet to go that route and we finally agreed to start him back on 20/20. I inquired about diabetes or other sick conditions that might be affecting his behavior or cortisol. She responded that Skippy would be unwell, not eating, vomiting, lethargy, etc. She did agree to review the December bloodwork from Purdue. Perhaps best of all, she agreed to call the head of Purdue’s vet clinic, Dr. Scott-Moncrieff who has done extensive endocrine and Cushing’s research, to discuss and perhaps review Skippy’s medical history. Dr. Scott-Moncrieff supervised this local vet during clinical training and although there is a potentially awkward situation of going over the heads of other vets there, she is willing to do it.
• In the meantime, I spent my weekend digging through your archives and learned a tremendous amount and felt incredible sadness, awe and respect for all of you and your dogs who have struggled bravely and are still struggling with this vile disease. I learned, among other things:
A number of other dogs here have had severe tremors and lethargy. Can I call it The I Want My Dog Back Syndrome? I didn’t find anything about the cortisol too high after three months on Vetoryl.
That Carprofen is Rimadyl by another name; I threw the bottle away.
That Drecha had (has) a vet who sometimes will consult on dog’s responses to this drug.
I am considering insisting that someone run blood tests and CBC.
After medicating Skippy this morning, he is a little jumpy but no tremoring. Also, local vet office just called back to say that Scott-Moncrieff is not in “Clinic” this week and normally doesn’t do telephone consultations. But they will send his file to her and request a consultation. Sorry this is so long and my thanks, you are the best!

[Carole Alexander]

Just received a call from Purdue: Dr. Scott-Moncrieff, the head of Purdue's clinic and an endocrine researcher-practitioner will see Skippy on March 21st! My local vet made this happen! I am in disbelief but very grateful.

[Harley PoMMom]

I'm glad to hear the local vet was able to arrange that office visit with Dr. Scott-Moncrieff! And will be waiting, anxiously, for his/her opinion. You're doing a really great job and I pray that you will find the answers that will help sweet Skippy.

Hugs, Lori

[lulusmom]

Lori, Dr. Scott-Moncrief is a female. Her full name is J. Catharine Scott-Moncrieff and she is a super star who wrote the entire chapter on the Thyroid Gland in my Fourth Edition Canine & Feline Endocrinology textbook. Congrats, Carole, for having a vet with connections. I'll be very interested in hearing all about your consult.

Glynda

[molly muffin]

This is awesome news!!!! Hopefully some answers will be forth coming now with this specialist.

Very impressive credentials

[LaurieS]

Carole i just read through your whole thread and i feel you pain and frustration. But its great news that Skippy is now scheduled to see this specialist who sounds awesome so i look forward to hearing what she has to say. Ill be sending positive thoughts and prayers your way!

Laurie

[Carole Alexander]

Laurie,
Thanks for your kind words of support. I am trying not to approach the future with raised expectations of anyone. I know now there there are no miracles but I'm determined to give Skippy the best shot that I can afford to give him, as you are doing with Charlotte. This disease is all consuming.
Glynda and Sharlene, thanks for your endorsement of Dr. Scott-Moncrieff; the appointment has risen to the level of notice of the IMS who saw Skippy last week. He called last night very concerned that Skippy is now Addison's and when I told him of the appointment on the 21st, he was adamant that Skippy couldn't wait until then. He asked me to bring him in at noon today for a look and a baseline blood draw. Then he said he wanted to do another Stim. I agreed in the vain of caution I guess. Skippy is the same but not willing to eat unless food is richly doctored. Thanks everyone...

[molly muffin]

Oh gads, I hope he isn't Addisons. When do you get the results?

[Carole Alexander]

Hi Everyone,
Skippy spent his afternoon at Purdue yesterday. They called today:
- Stim post test: 10.2 No Addisons! The Stim was after 4 days back on Vetoryl.
- They found swollen glands in Skippy's shoulders; no lymphoma but they want to check further for underlying disease especially they want to look for melanoma in his lumps and especially in his mouth!
- Blood panel and CBC okay except that his liver enzymes were a little more elevated than in December.
- The IMS who saw Skippy consulted with Dr. Scott-Moncrieff who will review Skippy's tests, ultra sound and history before she sees him. She (Scott-Moncrieff) said if the trilostane wasn't working then stop the drug and they will evaluate further.
- THEN TODAY - Skippy has taken three long walks without resistance or turning around; tonight he actually ran for a ball, jumped around at length for a chew treat and has significant glimmers of the Skippy of old. I have taken him off all meds except the Vetoryl but will keep him on it for the next two weeks (they didn't change the dose from 20/20). He is reluctant to eat without significant enrichment of his food, but only in the morning and has lost a couple of pounds. (Good if no malignancies)
Is it possible that the Vetoryl is working after all this time??? I have a glimmer of hope at least for a moment. I will get copies of his tests and post shortly. Thanks,

[Carole Alexander]

Tremoring has subsided except in bath and car to Purdue, but not on return. Tiny tremors sometimes during the day.

[LaurieS]

Awesome news! So happy to hear no Addisons! Its also great to hear his tremoring is subsiding. I think thats what bothers me most about Charlotte, sometimes the tremoring is so bad and she looks so pathetic. But it sounds like overall he is feeling much better and that is so great!

Laurie

[Carole Alexander]

Live in hope, die in despair or whatever one does. Skippy's engagement in life was brief to say the least. Now we are back to sleeping, little appetite, starts to walk and then heads for home, more staring, lethargy, no playing and little interaction. He is tolerating the Vetoryl and has no tremors. I've read all that I can find on here about macrotumors, including Kathy and Laurie's threads. I am now considering an MRI or CT scan if I can swing the cost. I found cost estimates on the University of Illinois website and they estimated an MRI with contrast at $1,200. Do you all know if that is a lowball estimate? If it is a macro, I don't know if I could afford or he would be a candidate for radiation. But right now we are in limbo with little prospect for future improvement. I would appreciate your thoughts or feedback. Thank you

[Carole Alexander]

Also, continuing to test Skip for various diseases, i.e., lymphoma, melanoma, changing medication, taking him off Vetoryl, etc., is feeling like a magical mystery tour through the process of elimination. Patience is truly a virtue but doing the same thing over and over and expecting a different outcome is contributing to my insanity! :)

[Squirt's Mom]

Before I went to the expense of looking for a macro, I would make sure I was willing and able to pursue treatment should one be found or should something else be found. Otherwise it is a waste of money and unnecessary stress for Skipper. ;) So for me, that is always the first thing I have to decide when faced with testing of any kind...will I and can I do anything about what is found? Next is - are there any options available that I can afford and would ask of my baby?

[molly muffin]

Well drat. yes $1200 is about on target for an MRI or CT scan. Leslie makes a good point of if it would change your current path or not based on what is found.

Did they take biopsies to test for any kind of lymphoma? What do they recommend doing (Purdue)

[Carole Alexander]

Leslie and Sharlene,
In response to your questions and comments: My thinking about an MRI is this: if Skippy has a macro tumor (and he has many of the symptoms) we need to know whether or not it is too large to treat. Yes, I would potentially treat but he may be beyond that. Re: lymphoma, no biopsies but they did extract fluid or tissue from each gland (I know there is a medical term for this) and saw no evidence of lymphoma. I'm not sure where the melanoma question came from except that he has three or four lumps on various parts of his body in addition to the adenoma on his butt. (He had a number of lumps removed last May but I don't think they were biopsied.) Scott-Moncrieff was reviewing Skippy's history and said, via the IMS, to stop the Vetoryl if it's not working; Skippy will see her on the 21st. I have continued the Vetoryl with the hope of lowering the cortisol.
However, this morning we are back to mild tremoring and diarrhea and he has been reluctant to eat and only eating small portions the past few days. So we are taking a Vetoryl break and I'll see how he does for a few days. I guess I need to see what Dr. Scott-Moncrieff recommends next week before making any decisions about an MRI. Finally, I called the local vet last week about securing a biopsy with sedation of the adenoma tomorrow, so as to rule out a malignancy before next week's appointment. Meanwhile, Skippy is pretty miserable. Thank you for your feedback.

[LaurieS]

I feel for you Carole, it sounds exactly what we have been going through with Charlotte, good days can turn to bad days very quickly. My husband has even used the insanity quote. Unfortunately we can't afford a CT scan or MRI (UC Davis quoted us $1600-$2000 for the CT and said it would be over $2000 for the MRI) and like Leslie said, if we can't follow through on the treatment once the diagnosis has been made then it really is just wasted money and unnecessary stress to the dog. But I sure do wish we knew for sure what we are dealing with!

The quote you got from the University of Illinois sounds good and if you would be able to treat, if he is a candidate, then it would be so helpful for you to know what is going on with him. I wish you and Skippy all the best, whatever you decide!

Laurie

[Carole Alexander]

Thanks Laurie and I posted a note on your thread regarding Charlotte's great and I hope long lasting progress.

[Carole Alexander]

Skippy took himself off Vetoryl yesterday as he stopped eating. And, he was supposed to have a biopsy of his tumor on his butt this morning, but I cancelled as he has diarrhea and seems weak. He continues to sleep this morning and I am still trying to figure out what to do next. If he is drinking, the answer is likely nothing.

[Whiskey's Mom]

Hi, Hoping things turn around for poor Skippy and it's just a bad day. I'm in a sad place right now with our boy, so I really do feel for you.
Annie and Whiskey

[LaurieS]

I'm so sorry Carole, poor little Skippy. Is he doing any better today?

Laurie

[Squirt's Mom]

I hope Skippy is feeling better this morning!

[Carole Alexander]

My thanks to all of you for your concern about Skippy; he is a little better as he has returned to eating with the offer of very enticing food and stopping the Vetoryl. All of his behavioral (neurological?) signs continue but slightly different from when he's on Vetoryl. Purdue called yesterday to check-in; IMS agreed with stopping Vetoryl until he's seen next week. Purdue does have an MRI clinical trial underway but don't know if Skippy would be eligible. Finally, I contacted Holly on this forum as she is the one owner who I could find whose dog underwent radiation successfully. She said she is travelling and will respond this week end but that Skippy's symptoms were "remarkedly similar". And, of course there is the possibility that he has a malignancy in some other part of his body.

I wish I had clearly understood three months ago what a good response to Vetoryl looked like. But that's my bad and we are where we are. I pushed as hard as I thought I could, but...Thank you again and I'll post when I know more.

[judymaggie]

Carole -- so glad that Skippy has decided to eat again. I hope that the IMS has good insight into Skippy's issues.

[molly muffin]

It doesn't hurt to ask about the MRI clinical trial. All they can say is no.

Well if we all knew what we needed to know at the beginning of this journey, it would have been easier for sure. Even reading what it Should look like or what one hopes it will be, then has to be applied to what is and that can be darn difficult.

You are doing a great job with the hand that has been dealt and that is all you can do. One day at a time.
Hugs!

[Carole Alexander]

Thanks Sharlene, I wonder how many times in our lives that we wish we were smarter, more knowledgeable, wiser and sooner. Such is life. But I am so thankful to all of you on this forum for your wisdom, support and experience. You all have helped to advance my knowledge light years. While I know that the next chapter in Skippy's life is likely to be the last one, I have learned so much and on his behalf, I am grateful beyond words.

[LaurieS]

Hi Carole, you and Skippy have been on my mind. How did the appointment with the specialist go yesterday?

Laurie

[molly muffin]

Hey there, checking in on your and Skippy!!! hows it going?

[Carole Alexander]

Hi Laurie,
Thanks for asking about Skippy and I’m truly sorry that you can’t find a pred dose to help make Charlotte more comfortable; I so appreciate and share your struggle about what to do next. What follows is a lengthy Skippy update:
Relative to last week when Skippy wouldn’t eat and looked as if he was dying, he is vastly improved. The tremoring has nearly stopped; he is walking again, interacting more and is willing to engage a bit. Also, Purdue thinks the adenoma on his butt is actually smaller. Go figure. But, lest anyone think this is a radical transformation, Skippy is far, far from my dog of six or eight months ago in respect to his cognitive and behavioral functioning. And, of course, off Vetoryl, the eating, drinking and peeing are back to square one…
Dr. Scott-Moncrieff saw Skippy and she had carefully reviewed his history, ultra sounds, etc. She had told me last week to stop the Vetoryl and Tuesday she said that Skippy clearly cannot tolerate the drug at any dose. At this point she does not think he has a macro tumor based on his symptoms. (He is eating, no head hanging, circling or going into corners.) But now no barking, lots of lethargy and I still see some staring. He is still mostly distant but is willing to be petted. I ask about senility but got no real answer. Scott-Moncrieff said that 40 to 50% of all dogs with a pituitary tumor will develop a macro.

They examined Skippy for several hours: measured his lymph nodes in six areas as there is some suspicion of lymphoma and they may want to biopsy; they measured the adenoma again, looked at his gait, looked at his belly and the pot has decreased slightly. They took a urine sample and want to secure a baseline cortisol next week. His BP has jumped from 150 to 220 in the last two weeks; they will test again Friday and if still high they will medicate; his heart has a small murmur but otherwise his liver, kidneys and pancreas are okay. Finally, they dilated his eyes and said there was no retinal detachment.
Scott-Moncrieff's recommendation was to try Skippy on Lysodren or to not treat at all if I can endure the Cushing's symptoms. She said that if it were her dog she would not do an MRI yet and she committed to following Skippy and managing the induction if I decided to try Lysodren. I failed to ask whether she thought that Lysodren, if successful, would improve energy, alertness and cognitive functioning or just the PU/PD.

I will watch Skippy carefully for the next three weeks and see how he is cognitively as I really don't know what I will do next. I am tempted to try Lysodren now that Scott-Moncrieff has agreed to follow Skippy. But, I still suspect he has a macro and I'm just fattening frogs for snakes with further chemical treatment. I can live with the PU/PD and I will provide palliative care to Skippy if this is as good as it gets.

Finally, I need to think about whether I request an MRI and would pursue radiation if he has a treatable macro. Last week I was sure. Now, I'm not so sure after doing more reading and my very helpful correspondence with Holly B. (Holly said she would post here, but until she does and in brief summary: after her dog, Nola underwent successful radiation and was great for some months, the Cushing's and new behavioral symptoms have come roaring back-now sadly, Holly is providing palliative care.) Also, for Skippy, the lymphoma must be ruled out but Purdue is doubtful that he has lymphoma.

Emotionally, I have moved from frantic efforts to save Skippy to being stoically determined to learn whether he even can be saved. I am deeply troubled that four different vets strung me along for nearly six months without ever telling me that there was a forty to fifty percent chance my dog has a macro tumor and that chemical treatment would not control his symptoms. An MRI in November or December would have cost little more than the thousands I have spent on Vetoryl and the fistfuls of diagnostic and near weekly stim tests. Because most pet owners will do everything within their capacity to help their Cushing's dog, veterinarians have an ethical responsibility to be honest and clear about the complexity of Cushing's, the limited research, the odds that a pituitary tumor will or has grown, and their own often limited understanding of treatment protocols that may result in harm or the death of someone's pet. I know that pets are merely property in the United States, maybe in other countries too. And, the standards of care are much lower for animals than for people, but in the US alone, we spend nearly 60 billion on pets annually, an estimated 15 to 20 billion goes for veterinary services. I know that veterinary practice is a challenging profession. However, collectively we have tremendous power to demand ethical, skilled and informed care. Whatever Skippy’s future holds, I have now become a highly discerning consumer and fierce advocate. I will not give up without answers and accountability. And, I hope you all won’t either.

[molly muffin]

I know you will never give up, but that you will make the decisions that are best for Skippy, whatever that might be, pallitive, further testing, treatment, whatever.
I don't think I ever heard that 40 - 50% will have macros. That seems very high. I don't think we've seen that sort of ratio here on the forum, based on the number of members we get, although we have seen a lot, they tend to in general be with the short nosed breeds like boxer, boston, bulldog, etc. As far as an in general statement goes.

You will likely be able to make a decision about lysodren once you know what the cortisol levels are now.

[Whiskey's Mom]

Dear Carole,
Wow, poor Skippy had quite a day! You are an amazing dog mommy and have done so much to help him. How stressful and frustrating for both of you. Since I've joined here, It's just really hard to believe that so many vets have gone through all the years of schooling and experience in their offices and still don't have a clue about Cushing's and the proper dosing protocols. I do believe that Whiskey was misdiagnosed, and somehow survived being on Vetoryl all those months. I hate to think about the small fortune I spent on ACTH tests & the pills, just greatful he survived & that I found this forum which gave me the knowledge to see the signs & stop the drug on my own. I don't even like thinking about it or admitting it, but its true.
Please know that I think about Skippy and you often and wish you both all the best. Sending huge hugs to both of you, Annie & Whiskey

[LaurieS]

Hi Carole, thanks so much for sharing all the info you have learned from Dr Scott-Moncrieff. I too feel like i would have probably saved money by having a MRI early on rather than spending so much money on meds and ACTH Stim tests. But then nobody ever told me a macro couldnt be controlled with the meds. And honestly, when this all started at Davis, they didnt think we were dealing with a macro. She showed no neurological signs, except for the tremors and nobody could tell me what was causing those. But after reading so many threads here it seems that most of the dogs with tremors are dogs with macros, or suspected macros. I feel like if i knew for sure i would have approached things differently but i trusted the vets at Davis and they were most likely wrong.

Im shocked to hear that Dr Scott-Moncrieff feels that such a high number of pituitary cushings cases will become macros. I was led to believe it was a small percentage (10-15%). And from what im learning, dogs with macros should most likely be treated differently than the ones with micros. For instance, these herbs i was giving Charlotte are for a dog with typical cushings symptoms, and may be helpful for those, but Charlotte is no longer eating well, no pu/pd so they may actually be causing her more harm than good. But yet the pred doesnt seem to be helping much either. Im with you in wanting to know more. I feel so many here on this forum are advocates and its sad but it seems there is more info here than we are getting from even the specialists.

Laurie

[Carole Alexander]

Dear Laurie,
I agree that the revelations come by the day, the week and sometimes by the hour. I will ask Dr. Scott-Moncrieff for a cite to support her statement regarding macros. But, I wonder if it is her personal experience and observation. If accurate and I more and more believe it may be, it's scary and raises a host of other questions about diagnosis, treatment and prognosis for our dogs. There are a significant number of dogs on this forum whose response to chemical treatment is questionable. And, the investment they have made, like you and me, in trying to save their dogs, is astronomical. I'm not complaining, I would do it again (with far greater critical questioning),But, I believe that the ignorance regarding this disease is rampant among vets. I took skippy for a BP measure today and vet # 3 (at the local clinic) seemed dumb as dirt about Cushing's. Clearly she was following Scott-Moncrieff's direction as to testing and treating.

I had another conversation later today with the Purdue, fourth year vet student that I will share later. It was equally strange and uninformed.

[LaurieS]

I mentioned this over on Charlotte's thread but i wanted to respond here too. It seems like dealing with a pit macro is so different than dealing with cushings in general. The more i learn and the more symptoms i see im thinking we have to take a different approach. For us radiation isnt an option but then its not a guarantee anyway. And the drugs can be so harsh and cause even more problems. But its sad that so many vets are so in the dark about all of this. Im still going to research some alternative treatments for Charlotte but of course i understand it may just be for a short time to give her quality of life for the time she has left.

I hope you and Skippy are having a good weekend!

Laurie

[Carole Alexander]

Hi Laurie,
I posted an article I found about milk thistle on your thread; I sent an email to the doctor about his research and will let you know if I hear anything.

Skippy remains a lethargic puddle; sleeping or laying prone about 23 hours a day. Last Friday I started him on Benazepril as BP is well over 200. He is eating some but has mostly stopped walking, maybe caused by the current bout of diarrhea. I called the vet for meds as the Imodium isn't cutting it.

Purdue called last Friday and they (and I) are very concerned about the new BP problem. The student mentioned Lysodren again and I asked her to talk with Scott-Moncrieff about the MRI clinical trial. I haven't heard back. Local vet will check BP again this Thursday; I am going to ask them to bring their machine and take the BP in the car. These vet visits are waaay too stressful.

I now have no idea of what's next or why. I have another appointment with Scott-Moncrieff on April 4. I guess they will check his lymph nodes and baseline cortisol and ask me about Lysodren. I have no answer today and I'm not sure I'll have one then.

[LaurieS]

Thanks for the article on milk thistle Carole, very interesting! I'm so sorry to hear about Skippy. I'm glad he is still eating, and I assume he is drinking. Charlotte won't drink so I have been putting small amounts of water down her via syringe.

Charlotte had a very bad night last night and at 3am I had pretty much decided to call the vet in the morning and arrange to end this for her. However, i got a message this morning from the Bowen therapist and she wanted me to know she had a supplement at the pharmacy waiting for me to pick up. She also moved our Wednesday appointment up to tomorrow morning so I'm going to see what happens over the next few days. The supplement she ordered for me is turmeric which I was well aware of. I had made a golden paste for Charlotte a month or so ago but I couldn't get down her since she wouldn't eat anything added to her food. These are capsules and the vet this therapist works closely with highly recommends them. Here is a link to an article he sent me:

http://www.turmericforhealth.com/turmeric-for-pets/6-ways-turmeric-aids-in-dog-brain-tumor

I would also like to try the milk thistle but I'm only going to add one thing at a time. I'm headed over to pick up the capsules now and I'm hoping I will see some improvement with them and the treatment tomorrow morning. Charlotte is sleeping peacefully right now after having a fairly high dose of pred and tramadol early this morning. I will keep you posted on our progress.

Laurie

[Carole Alexander]

Laurie, I hope these holistic folks can help you with Charlotte's symptoms. I do understand how painful and frustrating it is to watch your dog suffer, alone and stumbling along to try to figure out what to do next, more pred, no wean her off the pred, end the madness, and then there is the CC and the symptoms. Sometimes, I just want to run away as it all seems so futile.

Skippy's vets are now actually collaborating. I received a call yesterday from the local vet, Dr. Timmons, to ask if Purdue has called with Skippy's urine creatinine results. No, they hadn't. The issue is that Skippy now has proteinuria, but still at a low level that is caused by the extremely high blood pressure that is caused by the Cushing's. Timmons called Scott-Moncrieff and they discussed upping/changing Skippy's BP meds to a stronger drug; they decided not to because the boy is so sensitive to meds that Scott-Moncrieff felt it would bring his BP down too fast. This all occurred in the past two weeks. Perhaps the five days of BP meds and now a round of Flagyl are helping some. He has moved from puddle status to ambulatory, walking and pooping are now slow normal. Eating is back to killer hunger, drinking buckets of water and peeing like a drunken sailor.

And, not to minimize the fact that these new problems are not potentially lethal or disabling, I continue to struggle to figure out the behavioral/cognitive problem. I have researched macros, senility and canine cognitive dysfunction until my eyes have glazed over. Skippy doesn't fit any of the profiles though he does have some symptoms, i.e., greatly reduced interaction, no playing, now occasionally staring and sometimes slow walking. But these are sometimes Cushing's symptoms and now the high BP, which likely gives him a massive headache. I want a psychiatric referral, first for me and then for Skippy.

I'm down to two choices (doing nothing is not a choice). Try the Lysodren after he is medically stable and see if it will work or an MRI and if it is a macro I won't have to put him through the Lysodren protocol. I would love for Dr. Scott-Moncrieff to take Skippy home overnight and observe him, but, since that ain't gonna happen... I will ask if the "behavioral" or is it the neurology people at Purdue could have a gander at him and share their impressions. If any of you happen to read this post and have any ideas or thoughts, I would greatly appreciate your feedback.

Oh, Laurie I ordered some so called "pharma grade" milk thistle from Amazon. If it doesn't help Skippy, who now has his own cabinet full of unused meds, I will take it alongside whatever strong liquor I plan to resort to next! Thank you,

[LaurieS]

Oh Carole, I can so relate with everything you said! Doing nothing was not an option for me either. I'm exhausted from research and the care (not complaining) and the mental stress of not knowing what to do.

I just got back from Charlotte's appointment with the Bowen practitioner and will be posting about it on Charlotte's thread.

You and Skippy are in my thoughts and prayers!

Laurie

[liltara]

Carole - I took some time to read this thread and although I've connected with you on the thread for my Mojo figured I would chime in here too.

Mojo has the exact same cognitive issues as Skippy and as you know, we are also likely dealing with a macro. I find some comfort in knowing that there is someone else dealing with these behavior/cognitive issues along with me - at least I am not sitting on this bus to actual insanity alone!

Please keep this forum posted if you have a breakthrough and I will do the same.

[Harley PoMMom]

Hi Carole,

I just wonder if taking a video of Skippy would help the vets see a better picture of what is going on?

[Carole Alexander]

Thank you, a video is a good idea if I can get him to do something besides sleep, eat and pee. Skippy went to the local vet this am for a BP check; it's even higher by another 10 points. Without further consultation, Dr. Timmons added 2.5 ml of Amlodipine to Skippy's meds to try to bring BP down. She said that without question, Skippy now feels like crap and we can't really assess what's going on. She did say that Lysodren would bring down his cortisol along with his blood pressure regardless of whether his pituitary tumor is growing or not. Is that the experience of other folks?

[LaurieS]

How is Skippy doing? Have you started him on the milk thistle yet? If so, how much are you giving him? I'm hesitant to say this but after 3 days on it I think I see a difference in Charlotte. She still doesn't eat or drink on her own but she is sleeping better and more alert and interested in things. Also less tremoring. In general, it seems like she feels better. Keep us posted.

Laurie

[Carole Alexander]

Laurie, I can't say whether the 360 mg daily of milk thistle is making any difference after 3 days. (I decided on that dose because the manufacturer recommended 3 capsules x 360 mg for adults.) I would guess that Charlotte could take two capsules of that dose but I would ask someone more knowledgeable than me. I am glad to hear that Charlotte is doing a little better. Will she eat or drink on her own yet? There is a person, westcoastflea1, who began posting last April and posted here this week stating that she was treating her dog with Cabergoline for the last 3mos. and he is now symptom free. Her posts raise a ton of questions but I did research Cabergoline; studies suggest it works with 20 to 30% of dogs with a particular type of tumor. These dopamine drugs came up when I last saw Scott-Moncrieff and she was dismissive of their potential to help but I'll raise it again.

I am compiling a list of questions for the IMS visit on Tuesday as continuing to allow Skippy to languish without trying to secure an accurate diagnosis (whether or not he can be treated) seems like the only option for me. He now has new sores near his butt and on his foot. He chewed the foot one until bleeding. I treated with Stat, a doggie wound care product, gauze and green painter's tape and so far he is leaving it alone. I have no clue whether it is CC. BP meds were increased last Thursday and he seems a little more comfortable; he is eating and drinking with gusto and belly is quite bloated although he has lost a few lbs. Lethargy is constant but if he has canine cognitive dysfunction or a macro, I see no change in the past month. I'll update when or if I learn more. Take care of you and Charlotte.

[LaurieS]

Thanks for turning me on to Declan's thread and the use of cabergoline. I have read through it and i think i will ask Charlotte's vet about it tomorrow. Seems it couldnt hurt to try it. We are day to day with her and id like to feel like we have given her every chance.

My milk thistles capsules are 175mg and ive been giving her 3 daily. She could probably take more than that. According to one article i read it said sick animals could take up to 200mg per 10 pounds of body weight. This is her 4th day on it but the second day she didnt get her full dose as i found one capsule on the floor the next morning. Last night was rough, lots of tremoring and she couldnt get comfortable. She is weak this morning but did eat some. Not sure if we have time for anything to work. It would be nice to know how quickly Declan responded to the cabergoline.

Laurie

[Carole Alexander]

The Milk Thistle dosage is helpful to know; I found a couple of articles on Cabergoline that I will post on your thread. Wrote a long email with all my questions to Dr. Scott-Moncrieff this afternoon. Hang in there.

[Carole Alexander]

Skippy has a macro tumor, between 10 & 11 cm as diagnosed with an MRI today; I will meet with Purdue staff next week to assess next steps, if any. Currently he has very high BP and massive diarrhea and I am treating for both. Such a long and painful journey. I don't know what the future holds. I only wish I had had the MRI done six months ago. Neither Vetoryl nor Mitotane will help him. Purdue's radiation treatment seems antiquated on first blush; they are starting a new surgery pituitary surgery program, but it's all way too much for mind. Thanks so much to all of you for your kindness and support. I will let you know when I can of the outcome of Skippy's journey.

[Whiskey's Mom]

Oh no!!! Oh I'm so sorry. Poor little Skippy. I will be thinking of you both & I send you love and hugs.
Annie.

[LaurieS]

Im so sorry Carole! I know you suspected this but not what you wanted to hear. I also wish i would have been told the importance of diagnosing a macro early on, before i spent thousands on other diagnostics and meds. My thoughts and prayers go out to you and Skippy!

Laurie

[Squirt's Mom]

I am so sorry to hear this, Carol. Both drugs would allow the tumor to grow more rapidly by reducing the cortisol so in cases like this letting it run high is probably a good thing.

Please know we are here anytime you need to talk, vent, cry, whatever. And as you are able we would love to know how you and your baby are doing.

Hugs,
Leslie and the gang

[molly muffin]

We are with you Carole, whatever comes your and Skippy's way. I really had hoped that the MRI wouldn't show anything. I don't know what Purdue does, but I know University of Davis now has radiation treatment to shrink the tumors that only require at most 1 or 2 doses. If Purdue still uses the 12 dose standard, maybe you could ask them about the lesser dose strategy that Davis is using and they can reach out to Davis.

[molly muffin]

Hi Carole, just popping in to see how you and Skippy are doing and say I'm thinking of you both.

[Carole Alexander]

I am hesitant to post anything as I really know little more than I did last week after Skippy's macro was confirmed. What I have done, besides cry and rage at the unfairness of it all, is:

Search the internet in fifty different keywords or phrases for information on radiation equipment, outcomes of radiation, life expectancy, short and long term radiation effects and best radiation programs in the USA.

Search the internet for pituitary macro surgery, outcomes, life expectancy, complications, competence of the surgeon and so on.

I have also searched medical therapies that researchers have tried on people and pups with very mixed results. BTW, most medications are way too expensive or have too many side effects. For example, pasireotide (Signifor) is between $1,500 and $2,500 an injection monthly.

I have had several email exchanges with Dr. Scott-Moncrieff and because Purdue will launch a surgical program for pituitary macro tumors soon, So, next week they have coordinated a consult to discuss surgery, radiation and from my perspective, doing nothing. Regarding surgery, I have at least 1,000 questions. Radiation at Purdue is a huge question as their equipment appears to be less sophisticated than Wisconsin, Colorado U, Texas, FL and U of Washington. Don't know about their radiologists.

Skippy's BP is sky high still; yesterday it was down to 190 from 220 to 230. I don't think the BP drugs will bring it much lower as his cortisol is so high. Otherwise, he is the same, eating, drinking, peeing and sleeping. Oh, and his eyes are not bleeding.

Maybe you all know this: Is Skippy's 11 or 12mm macro tumor huge? Many researchers say below 10mm is a micro. All of the research says the bigger the tumor and the more neurological symptoms, the poorer the prognosis for all forms of treatment. Scott-Moncrieff characterized his symptoms as "mild". There is also a question of tumor size in proportion to head cavity - something called B/P. Of course, I will ask Purdue folks.

In the meantime I am leaving now to pick up a month's supply of Cabergoline for $268.00. I know that Dr. Scott-Moncrieff is skeptical and I have NO EXPECTATIONS. But right now Rome is burning and I have an empty fire extinguisher.

Thank you everyone for your support and kind words; it means a great deal to me.

[Budsters Mom]

Yes Carole, this is a huge part of being in the "macro club". A club where many of us have ended up and reluctantly been forced to join. :o:(. Cry and rage as much as you need to, but try to put on a happy face in front of Skippy. It is very hard to do! He takes his cues from you and loves you sooo much. Make every moment count! Buddy was the center of my universe. He knew that above all else. None of this is easy. It mega sucks!!! There is no gentle way to put it. Take pictures, videos, etc. Most of all, spend as much quality time together as possible. I wish now that I had been better at taking my own advice.:o You are not alone. There are many of us in that dreaded club. Far too many.

Hugs,
Kathy


What I have done, besides cry and rage at the unfairness of it all

[westcoastflea1]

what mg of cabergoline per day? check this link out as well://www.ncbi.nlm.nih.gov/pubmed/16740975 retinoic acid maybe even try both at once there a few comments being made by reseachers that combining may produce a synergistic effect
EXCERPT FROM THE LINK IS AS FOLLOWS: We recorded a significant reduction in plasma ACTH and alpha-MSH, and also in the cortisol/creatinine urine ratio, of the dogs treated with retinoic acid. Pituitary adenoma size was also significantly reduced at the end of retinoic acid treatment. Survival time and all the clinical signs evaluated showed an improvement in the retinoic-acid-treated dogs. No adverse events or signs of hepatotoxicity were observed, suggesting that the drug is not only effective but also safe. Retinoic acid treatment controls ACTH and cortisol hyperactivity and tumor size in dogs with ACTH-secreting tumors, leading to resolution of the clinical phenotype. ALSO CHECK OUT THIS AS WELLwww.ncbi.nlm.nih.gov/pubmed/16740975 THIS IS AN EXCERPT " The somatostatin analogue pasireotide and the dopamine agonist cabergoline, as well as their combination, show some therapeutic promise in the medical therapy of Cushing's disease. Other treatments such as retinoic acid analogues look promising and may be a possible option for further investigation. No other medical therapies seem to be reliably effective currently.

[Squirt's Mom]

Please note - that study was done in 2006. Vetoryl was being studied in test subjects in the UK at that time and subsequently released in the US in 2009. ;)

[Carole Alexander]

I gave Skippy 2.5ml (half of a 5 ml.) about five hours ago. His only response is to refuse to eat. This dose is to be given every other day as it has a long half life. As for the other dopamine drugs that Westcoastflea1 mentioned, there is little info on the availability and cost. But, one that I did find was around 2k per monthly injection. Also, several researchers have mentioned the prohibitive costs of the Retinoic drug regardless of its efficacy. I am trying this only because I don't think it will harm Skippy and if it acts, it acts directly on the pituitary. I am a little concerned about his high BP and cabergoline and I am clueless as to the finer points of location or type of pituitary tumor.

Thanks everyone.

[Carole Alexander]

Day 2 on Cabergoline - no change to speak of except Skippy continues to decline dog food in all forms, with chicken, with broth, and with super duper canned dog food. Finally this morning I got him to eat a little canned tuna here in the cafeteria. Tonight he had a few bites of chicken, some mashed potatoes and a few bites of beef. He is drinking and walking about the same. Until the first pill yesterday, he was eating like a horse. I am not giving up, yet. He may be nauseous, a common side effect of this drug. But, it's curious that he will eat the good people food. Since I have no clue what to anticipate on this drug I guess there is nothing to see here.

[molly muffin]

Didn't they say that cabergoline might take time to shrink the tumors and for changes to be noted? Hang in there. I'm hoping you'll see improvements as time goes forward. Would Pepcid held to settle the stomach if the meds are making him nauseous?

Nothing to see here, is probably good, as not worse. I'm hopeful, that this will help.

[LaurieS]

Dear Carole,

I'm thinking of you and Skippy everyday. This is my first day back to the forum since Charlotte passed, I just couldn't see though my tears to read and type. I am very anxious to hear your reports on the cabergoline. I hope Skippy's appetite has returned by now. The fact that the drug can cause nausea makes sense that he may be fairly finicky when first starting out on it. Cerenia helped Charlotte some when she seemed to be nauseous and it has anti-inflammatory properties as well, which can't hurt under the circumstances. I wish we had had time to try the cabergoline with Charlotte but we were just too late.

Hugs to you both!

Laurie

[Whiskey's Mom]

Hi Carole,
Please know that I've been thinking of you & Skippy, wondering how things were. It's so hard isn't it, this watching, waiting and obsessing.
Take care, both of you.

[Carole Alexander]

Hello to everyone and thank you for your kind and caring thoughts. I can still barely write about Skippy dying, which I know he is, by inches. So instead both Skippy and I will carry on until the fat lady sings, since both of us are stubborn by temperament. The tome that follows focuses on treatment options that were detailed in my consultation with Purdue yesterday.

I met with Purdue's doctors, their chief surgeon, chief radiologist and Dr. Scott-Moncrieff. Many questions were answered regarding treatment options.

Surgery: Dr. Tim Bentley, the surgeon, was trained by Washington State but he has not yet performed the pituitary surgery on a living dog. Skippy would be the first if I would agree to surgery. He said that Skippy's tumor is larger than would be ideal for their "first" case. (Ideally, it would be a dog that has a tumor just slightly larger than a micro.) The biggest surgery risk is in the precise cutting so as not to cut a blood vessel and cause a dog to die of hemorrhaging. If the surgery is successful there are significant risks in post op, e.g., pneumonia, increase in neurological symptoms, etc. Purdue has developed an exhaustive protocol for the surgery, moving the dog under anesthetic from the operating room to the MRI chamber, etc. It’s a lengthy surgery (four to six hours). Utrecht in the Netherlands, who now have performed hundreds of pituitary surgery’s, report the obvious, the more experience the surgeon has in performing this surgery, the better the outcomes in respect to mortality and quality of life. Also, the bigger the tumor the poorer the prognosis. Purdue is willing to cost share if I agree for Skippy to be their first canine subject. Likely it would reduce the cost to something in the range of 3 to 5k.
Radiation: The radiologist said they could utilize the shorter protocol, three fractions of intense radiation, without significant risk of late radiation effects. The longer protocol of many weeks involves much smaller fractions 3 times a week and further reduces the late effects risk but the risk of anesthesia related problems or death go way up especially with Skippy’s Cushing’s hypertension. Median survival is two years but I have found no dog on this forum that lived more than six months symptom free after radiation. Skippy would likely need to be treated for Cushing's for the rest of his life. They estimated the cost to be 3k to 3,500k for radiation.

Cabergoline: Dr. Scott-Moncrieff has not utilized Cabergoline previously and I neglected to ask what kind of macro Skippy has, if they can tell from the MRI. (Dr. Bruyette states that Cabergoline works on some dogs whose macro is located in the pars intermedia.) No studies except the mysterious Castillo one report the effectiveness of Cabergoline in dogs; other studies purport its effectiveness in human CD and it did work on a percentage of ACTH secreting tumors in both. Dr. Scott-Moncrieff thinks that it will take at least a month to see if it has any effect. This drug works and is regularly prescribed for tumors secreting prolactin which is the most common type of pituitary tumor. I have no idea how they test for that or if his tumor could be secreting both prolactin and ACTH. I did find this study this morning from Utrecht in the Netherlands: https://dspace.library.uu.nl/bitstream/handle/1874/40123/Verslag%20OZ%20stage%20Van%20der%20Duijn%20Schoute n.pdf? sequence=1
The researchers administered Cabergoline to some of their dogs after first giving them three or six monthly injections of Lanreotide, a drug that costs at least $70 for 1 mg. They were injecting the dogs in the study with 30 to 60 mg monthly for six months! Results were mixed for a variety of reasons and clearly this is not an affordable option.

All at Purdue agreed that clients should be apprised of the possibility of a macro and an MRI should be recommended at the outset of treatment, especially if the dog is displaying even subtle neurological symptoms. But the reality is that many of us can barely afford the diagnostic tests and treat the Cushing’s symptoms, let alone secure an MRI or further treatment if their dog has a macro. After talking with them I felt as if I was an odd or challenging client in raising so many issues. They did say that knowing of the macro in November would likely have made little difference in Skippy’s treatment options as the tumor is so slow growing.

As for Skippy, he is still with me. Two nights ago I came home after being gone several hours; Skippy flew out the door and walked further than he has in days. He even sniffed at a ball. In general, he looks better, brighter, and more alert, but overall his lethargy and dullness prevail. Maybe the BP meds are helping a little. He is eating again but still has diarrhea that I’m treating. Drinking is the same but peeing has improved during the overnight; he can now make it midnight to 6am. Dr. Bentley said that the tiniest shrinkage of the tumor would change the ball game; I presume the tiniest tumor growth will do the same since his macro is relatively large. If the Cabergoline leads to any sustained improvement, I’ll keep him on it. If not, I have no idea what I’ll do next or more likely his next medical crisis will be a determining factor. Sorry this is so long, again. I hope it will be useful to some.

[Whiskey's Mom]

Not too long at all, you've really learned so much that needs to be shared. Very interesting and informative.
I'm with you at the matter of the next medical crisis:mad::(. Such a sad reality for us but you're doing such a great job & leaving no stone unturned for your Skippy.
Sniff that ball and fly out the door little guy-every day! Make your mamma smile! We're rooting for you!

[Carole Alexander]

I don't know where exactly to post information so I will stick it here:
Cabergoline, a dopamine agonist which might or might not help shrink a pituitary tumor and lower cortisol seemed rare and exotic last week when Purdue provided it to me, 8 pills cut in half equals 16 doses for $263.00. More reading and a little checking and I've learned, not so much.

Using Blink Health an online drug buying service where you pay them and take your script to the pharmacy, I can buy Cabergoline at the local Kroger, in stock, same quantity and strength for $101.00. Typically Purdue was cheaper for Vetoryl, for this drug NO. Now I'm wondering if all the other drugs they keep prescribing for Skippy can be purchased for cheaper at the pharmacy, if they are for human use as well. It's not enough that we and our dogs have to experience Cushing's and the damage it does to them. We have to be gouged too? Nah!

[Carole Alexander]

WestcoastFlea1, as far as I can find retinonic acid, pasireotide and lanreotide are either unavailable commercially or extraordinary expensive, i.e., thousands of dollars a dose. Have you learned anything differently? Thanks

[Budsters Mom]

Yes, this is the perfect place to post that information. Thank you.:)

I typed a very long post explaining Buddy's (also a yorkie) experience with a probable enlarging macro tumor. I choose to delete it because this is Skippy's and your jouney, not ours.

Know that you are not alone. Many of us have been through this. It is still hell, but you will get through. There will be some bumps, bruises and tears along the way, but you will get through this.

Hugs,
Kathy

[Carole Alexander]

Kathy, thank you and thanks for your kind post earlier. Intellectually, I know you are right but I appreciate you repeating it. I will read your thread, should have done so earlier. Skippy is a yorkie mix but since he came from a puppy mill, the owners gave the pet store where he was sold, AKC papers verifying his heritage. Only when his legs began to grow very long did his owners dump him when he was a year old. Puppy mills, don't get me started.

[Harley PoMMom]

Good RX is another option, one of our members brought it to our attention: https://www.goodrx.com/?utm_source=google&utm_medium=cpc&utm_term=good.rx&utm_campaign=GoodRx%20Brand&utm_content=Ad-Group_GoodRx&gclid=CKbQqozWtdMCFZmCswodfQwFYQ

After typing in Cabergoline in their search engine it came back with Walmart selling "8 tablets of cabergoline 0.5mg" for $77.24

[Carole Alexander]

In case it hasn't already been posted, here is the original text of Castillo's study on Retinoic Acid. I know others have explored the availability of this drug without success. I saw a few studies suggesting it may have efficacy with humans as well.

https://academic.oup.com/endo/article-lookup/doi/10.1210/en.2006-0414


Here is an overview of drugs that are being tested.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2840568/

One more study on retinoic acid which is also called Isotretinoin and is available commercially for approximately $280.00 a month or less depending on strength. This study mentions the Castillo study.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4789464/

I wish I had medical education or this stuff was less technical!

[LaurieS]

"All at Purdue agreed that clients should be apprised of the possibility of a macro and an MRI should be recommended at the outset of treatment, especially if the dog is displaying even subtle neurological symptoms. But the reality is that many of us can barely afford the diagnostic tests and treat the Cushing’s symptoms, let alone secure an MRI or further treatment if their dog has a macro. After talking with them I felt as if I was an odd or challenging client in raising so many issues. They did say that knowing of the macro in November would likely have made little difference in Skippy’s treatment options as the tumor is so slow growing."

Thanks so much for the detailed information Carole. It's all very good to know but I wanted to comment particularly on what you said in the quote above. I wish more vets knew the importance of determining whether or not the tumor is a macro once the dog is diagnosed with pituitary cushings. Not once were we told that trilostane would actually make the tumor worse and never did the vets tell us that the tremoring she was experiencing could be signs of a macro. Why didn't they know this? Charlotte was being treated at UC Davis for heavens sake! Only after she almost died from the Vetoryl did they suggest we see a neurologist and have a MRI. I had no idea we were speeding up her death by giving her those drugs! And in the end I look back and see I spent more money on the drugs and continued diagnostics than I would have paid to have a CT Scan or MRI to determine what the proper course of action should be. I'm very angry.

It's still hard to come here regularly as the loss of Charlotte is still so fresh but I will keep checking in on you and Skippy and please know you are in my thoughts and prayers.

Hugs,
Laurie

[Carole Alexander]

Laurie, I share your anger but I am trying to let go of it as I know it generates a lot of negative energy and doesn't help me accept what is. But, I do understand the difference, Charlotte is gone and Skippy is still alive.
Speaking of Skippy, he is holding his own as far as I can observe. Still eating & drinking buckets; he sleeps a lot but is now willing to walk a few blocks. No increase in macro related behaviors, but still stares & still fast walks back home. It's all pretty subtle & most would think he is just an old dog. Back tomorrow for BP& eye check. Does anyone know if I should take in a couple of urine samples to test cortisol in his urine? I am going to ask Dr. Scott- Moncrieff about increasing the dosage since he is tolerating the Cabergoline well. I'll post again when I know more.

[LaurieS]

Thanks for the update Carole, I hope that the cabergoline is working. And I totally agree with you about letting the anger go, that isn't going to help you or Skippy. Dogs feel what we are feeling and you need to be as positive around him as possible. I guess the anger keeps me wanting to make a difference now that Charlotte is gone. But wasn't productive while she was still here with me.

Hugs,
Laurie

[Carole Alexander]

Laurie, I agree with you; even if Skippy can't survive this, we have both learned a great deal and I hope that I too can pay it forward if the opportunity arises. The general lack of knowledge about pituitary tumors, the different kinds and efforts to create medical therapies especially for dogs, surprises me. But the condition is so rare in humans and so relatively common in dogs, little research is being done. I guess we should be glad that this is a human condition too or there would be no research.

I do have a small bit of good news: took Skippy for a BP check this morning and his BP is down to 166 from 220 at the clinic. Maybe the meds, maybe the Cabergoline, maybe both, who knows! Also, he is a little more alert, responsive and interactive, probably due to lower BP. He continues to eat, drink and pee heartily and is reluctantly taking walks. I sent both Dr. Scott-Moncrieff and Dr. Bruyette an email earlier and tried succinctly (I heard you Kathy)to ask questions about continuing treatment with Cabergoline and especially about Bruyette's experience in treating with it. BTW, Dr. Bruyette has opened a diagnostic and consultation practice, https://www.veterinarydiagnosticinvestigation.com so I don't know if he will respond without a fee for consultation. We'll see and I did mention this forum.

I cannot get Skippy's diarrhea under control if I take him off the "M" drug. Local vet handed me an expensive bag of kibble to try him on.

Purdue told local vet that Skippy was a perfect candidate for their first surgery; yeah, old, high BP, a huge macro with neurological symptoms- yeah, he's perfect! Think I'll wait for Godot for the time being.

[molly muffin]

That is excellent that Skippys BP is coming down and I hope that it continues to come down even more. I'm sure he feels better when it is lower.

As time goes on, we learn more and more about the different cushings and especially macros. That there is even a possibility of something shrinking a macro would be excellent news and I think that is what Dr. Bruyette has focused on trying find. I seem to remember that from somewhere, maybe it was Kathy and her Buddy who inquired about that with him. (my memory could be faulty) but I am hopefully and I do wonder if Cabergoline will do that.

[Carole Alexander]

More on macro tumor/adenoma:
I had one email exchange with Dr. Bruyette yesterday; he responded immediately to my litany of questions about Cabergoline. He offered to look at Skippy's MRI and offer his opinion regarding the question of efficacy of Cabergoline for his ACTH secreting tumor and/or the appropriateness of surgery for Skippy’s macro. (I requested Skip's MRI yesterday and Purdue said they would send it immediately but I haven't received it.) Dr. Bruyette stated emphatically that the best shot for long term survival is surgery and radiation. He said that Castillo's dogs, treated with Cabergoline, had "small" tumors. Don't know but I suspect he means micro tumors. Further, he said that it is often very difficult to discern from the MRI, exactly where the tumor is located in relation to the pituitary but that he would take a look. (Dr. Scott-Moncrieff's response to this question was similar.) Multiple research studies report that Cabergoline, a dopamine agonist, works effectively to reduce the size of functional Prolactin secreting tumors in humans. Dr. Bruyette stated that Cabergoline is effective in about 20% of dogs. (I don’t know what “effective” means.) I ask Dr. Bruyette about increasing the dose; he responded that I could if it doesn’t cause gastrointestinal distress. (Skippy has been treated for diarrhea for the past month.) For info on Cabergoline in treating Prolactin secreting tumors see: http://www.vivo.colostate.edu/hbooks/pathphys/endocrine/hypopit/prolactin.html Also, this study, https://www.ncbi.nlm.nih.gov/pubmed/1352243 states that in humans, “ In contrast to macroprolactinomas, other functioning pituitary tumors (GH-, TSH-, and ACTH-secreting) rarely shrink during dopamine agonist therapy, although the number of tumors studied is small.” However, some other studies report that prolactin is abundant in the tissue of ACTH-secreting tumors, so the effectiveness of this drug in people, let alone dogs, in shrinking ACTH secreting tumors is a major question. One article that I read, says that in humans, if Cabergoline acts to shrink the tumor, it will do so within three months of initiating treatment. Finally, another article on treatment with Cabergoline in humans, states that Cabergoline treatment must be sustained for life, otherwise the tumor will grow back.
Neither Dr. Bruyette nor Dr. Scott-Moncrieff offered any insight into the meaning of the term, “slow-growing” in describing the progression of a macro. Thus, I presume it is based on clinical signs.

I have begun to research the various approaches to radiation for pituitary tumors. There are major risks to each approach including late radiation effects, tumor regrowth, radiating good tissue, blindness, and intolerance of anesthesia, to mention a few. I will post more if I can succinctly summarize as I read more.

Surgery is an entirely different question that I have barely begun to research. Already, I have a passel of questions. One of my questions that the specialists can answer is whether the macro has invaded other parts of his brain outside the pituitary gland. Again this article is in regard to humans but presumably would apply to dogs. http://www.cancernetwork.com/review-article/aggressive-pituitary-tumors

If I could get to the Netherlands and Utrecht’s surgeons thought Skippy was a good candidate - and, assuming I could afford it, I would go for it. But, that’s not the hand I’ve been dealt.

Skippy will see Dr. Scott-Moncrieff in a couple of weeks if he maintains his current functioning. She will do another stim test. I will send the MRI off to Dr. Bruyette. And watch and wait.

BTW, the link listed in my last post is to Dr. Bruyette's new consulting service nationally and presumably internationally that he is offering to vets regarding internal medicine and surgery for various endocrinology related conditions. He is also offering continuing educations courses on a host of medical conditions affecting dogs and cats. (All of the courses are offered in wonderful fun places!) I think the vet consultation service is terrific and the cost is reasonable, especially if the appalling lack of knowledge about Cushing's is indicative of the sorry state of too many vet's level of knowledge in general.

Most of our Cushing's dogs are older as are some of their owners, including me. To that end, here is my final link for the weekend written by Dave Bruyette, https://media.wix.com/ugd/38e433_6df5bd5939134fe1924dcd67672e512c.pdf and addresses the aging pet. :)

[labblab]

Hey Carole, once you get the imaging to him, I think Dr. B's opinion re: Skippy's suitability as a surgical candidate will be invaluable. Just wanted to make sure you're aware that he has pioneered surgical intervention himself, at U.C.L.A. His first patient, Lucy, was a treasured member here:

http://dogaware.com/articles/newscushingssurgery.html

Lucy's mom hasn't posted for several years, but she might respond to a PM if you wanted more info about their surgical experience. Here's her profile page:

http://www.k9cushings.com/forum/member.php?u=35

Marianne

[Carole Alexander]

Thank you Marianne, I have heard plenty of mentions about Lucy Goo but have not looked up her thread. I will do so. I don't think Dr. Bruyette is still practicing but I could be wrong. Also, I'm aware that he was trained by or trained with neurosurgeons. Dr. Bentley at Purdue has a fine reputation locally and was trained by Washington State but he has never performed the surgery. Utrecht folk clearly state that the experience of their surgeons over time (since 1983 ) has made a significant statistical difference in survival rates of their dogs, although with the introduction of Vetoryl, they are now seeing more dogs referred with large macros for whom the prognosis is not nearly as good.

[Carole Alexander]

Skippy Update: I haven't posted an update for awhile as I often find myself at a loss for words regarding Skippy's condition. But some folks may be interested in the boy's response to Cabergoline. Overall, and after a month, I would describe him as modestly improved relative to his condition back in March and early April when he was diagnosed with the macro and I stopped the Vetoryl. The research suggests that Cabergoline may work on tumors that secrete cortisol AND prolactin. Dr. Bruyette reviewed Skippy's MRI and stated that he thinks that Skippy's tumor "is coming from the pars distalis and not the pars intermedia given the vasopressin signal seen on the sagittal T1 images so I don't know if Cabergoline will be of much help." He did say that he thought Skip was a good candidate for surgery or radiation as the tumor has "minimal expression caudally past the dorsum sella."

Skippy is walking more, has picked up a ball a time or two, is ravenous, peeing and drinking in full Cushing's mode, is still lethargic though less so. Tremoring is greatly diminished although still present when stressed and many things stress him. He is having balance problems and back leg weakness continues to progress. His skin remains crepey but his hair has grown back; he has new lumps monthly but the adenoma on his butt doesn't appear to be growing. He is more interactive but not nearly where he was before Vetoryl. I will have his BP checked this week. I cannot get the soft stool to diarrhea under control and Dr. Bruyette mentioned gastrointestinal issues as a side effect of the Cabergoline. Once, I accidently gave him a full tablet of the stuff and he reacted with severe tremoring for a couple of days so I won't be increasing his dose.

Skippy sees Dr. Scott-Moncrieff on May 23rd; she wants a Stim test and I guess it is my call as to whether or where we go next. I have taken a break from researching radiation as the technical complexities of different equipment, protocols for dosage and number of treatments are well beyond my pay grade. (There is an entire website devoted to the different types of radiation equipment available at different vet schools throughout the US.) I am inclined to talk to U of Wisconsin where they utilize Tomotherapy, because of geographic access and their equipment is state of the art; and the MRI is attached to their radiation equipment. I have ruled out surgery for Skippy; his tumor is too big, symptoms are too severe and last but not least, Purdue's surgeon has never removed a pituitary tumor. I have not ruled out keeping him on the Cabergoline and doing nothing more depending on his test results. But honestly, I am worn down with Skippy's maintenance, treatment, research, watching, worrying over every symptom and obsessing over what to do next. Wondering if he will die or I will need to put him down if he has a crisis, I am somewhat numbed by the experience at this point. I love this little guy dearly and I will do all that I can to improve his quality of life or walk the road with him to wherever it ends.

[Budsters Mom]

This is overall a very encouraging report. Thanks so much for updating.:o

Hang in there Skippy! We re pulling for you! I love to see positive results, particularly when a macro is involved.

Kathy

[liltara]

Hi Carole,

I am glad to read this update. Seems Skippy's quality of life is improved some and that is all we can hope for.

I relate to the exhaustion of this condition - it is literally consuming all of my time. I am so grateful I have the time and resources to care for my Mojo, but to be honest this is wearing me down. Everyday is an emotional roller-coaster. I find myself wondering at least a few times a day if it is just more humane to let him go ... but his eyes are clear, he is full of love, and can still do most "dog" things albeit in different ways then when he was healthy.

I pray I will know when the time is right - I've put down a few dogs in my time and always known when enough was enough. I am not a selfish pet owner and always put their needs and comfort ahead of my own and I don't keep them here when they are suffering. But with this illness, it is just enough suffering to make us all miserable but not enough to give me that moment of clarity when I know it is time.

I am truly prepared for what is to come - but I just wish I had a more clear path. The constant emotional upheaval is not good for either of us.

Hang in there - I pray for you, me and all the Cushing's parents out there. It is not an easy road we walk ...

ETA: that is my little man in my avatar. I finally figured out how to post it.

[Whiskey's Mom]

Having just been in the watching, waiting, worrying mode myself I can understand how you feel. It's all consuming and tears you apart inside. I tried my best to prepare myself for the inevitable but it's still so hard. It's out of our hands, so you just keep doing what you're doing-love them, hug them and make them happy. They know, they feel our love. All the best to you and Skippy.

[molly muffin]

I'm really glad to hear that Skippy is appearing to be a bit happier these days, even if sometimes lethargic.
It IS all consuming. No doubt about it and the worst the issue you are dealing with and the symptoms, the more complicated, the more consuming it is.
Skippy sure fits all that.

[Carole Alexander]

Skippy update again - The good news is that his BP is now in the normal 150's and in many respects he is stable - for Skippy. But I continue to see neurological deficits intensifying, e.g., he no longer wags his tail, smiles, can't sit and shake without losing his balance, can't kick his back feet and has given up trying to jump on anything. There are a dozen other tiny changes that I won't bother describing. The local vet thinks his front legs are beginning to buckle. Externally his Cushing's symptoms have not increased although his hair is thin and he is developing new tiny adenomas on his feet and butt. Except, and a big one, for diarrhea, he is tolerating the Cabergoline.

Next Monday, I guess I will agree to a Stim test if Scott-Moncrieff thinks it is appropriate. Otherwise, I am moving on - to radiation. He will need Prednisone for a month and I want to thoroughly understand the proposed protocol. I also will contact Wisconsin and see if they will look at his MRI and tell me what they would propose and the cost. The research on radiation, various protocols and equipment is slim and mixed. If he survives the radiation and still has Cushing's, which is likely, I do wonder about treating with Vetoryl as reportedly it makes macro tumors grow. I will ask Dr. Scott-Moncrieff but if anyone knows anything or has had experience with this issue, I would appreciate your feedback. So, nine months, and many thousand dollars, I'm grateful and lucky that he has survived this long. And, I know how fortunate I am to be financially able to take the next step; I only hope he survives and radiation gives him his quality of life back, at least for awhile. Thanks again for everyone's kind thoughts and support.

[molly muffin]

Well dang, I'm sorry to hear that the neurological symptoms are increasing.

Find out if any place has the radiation treatment that only requires two doses (as used by UC Davis) rather than the 10 - 12 that many use. It is much easier on the dog with less risk from what I heard from those that used it at Davis.

I think worry about treatment for cushings later if necessary. One step at a time.

[Carole Alexander]

Lengthy trip to Purdue today for Skippy. They did another blood panel, a Stim Test, a Shirmer's tear test (normal) to check his eyes, and I'll drop off a fecal sample tomorrow. I met with the radiologist for nearly an hour. In summary of all issues:

Blood panel compared to 3/9, most high numbers are higher but they forgot to give me the 3/9 numbers. Here are the highs:

Total Protein (plasma) 8.5 (Ref. range 6.0 -8.0)
Hemoglobin 18.8 (Ref. range 12.0 - 18.0)
Blood Urea Nitrogen 56 (Ref. range 7-32)
Anion Gap 20.4(Ref. range 9 -18)
Alkaline Phosphatase 808 (Ref.range 20 -157)
ALT 288 (Ref. range 3-69)
GGT 146 (Ref. range 5-16)
Cholesterol 413 (Ref. range 125 - 301)
Lipase 6042 (Ref. range 104 -1753)

BP is 150 after an hour wait to be seen.

Big concern of the moment is diarrhea. They think the Cabergoline may be causing it so I am stopping it today at least for awhile; they will also look for parasites. Long term use (since April 4) of the Metronidazole can cause neurologic symptoms, something that he already has a boat load of!

The radiologist said that they have radiated four or five dogs with pituitary tumors. They each survived a year or a little more without new symptoms. One received a second treatment that extended his life by four or five months. Most had dramatic improvement in neurologic symptoms. He thought the highest risk for long term radiation effect was loss of vision because the optic nerve is directly in front of the pituitary He explained the difference between IMRT and Tomotherapy. The latter offers 3D radiation capacity, the former is only 2D but he explained their efforts to offset Purdue's more limited capacity to view the brain. (That, I didn't fully understand but it seems to relate to how they position and "block" the animal on the table.) A second difference is that Tomo has an MRI attached to the radiating machine.) He lamented the lack of research on Cushing's and pituitary tumors and said the reality is that their is a massive lack of research across the whole of veterinary medicine. He said that Docs like him are generalist specialists in that they radiate tumors/cancer wherever they are on an animal's body. They are not researchers per se and there is so little money available for research. Sigh... I am pretty discouraged by this info and I am going to send Skippy's MRI to U of Wisconsin and see if they will offer a consult regarding radiation without seeing him. Purdue proposes to administer three treatments in one week but they have not developed a radiation plan. They could start next week or the following week if we can clear up the diarrhea and I agree to go forward.

Dr. Scott-Moncrieff explained that Vetoryl does not cause a macro to grow, rather because Vetoryl reduces cortisol levels, it also allows the the tumor to expand. Maybe semantics but here is this: "Because most chemotherapeutic agents have no effect on the pituitary itself, they do not inhibit ACTH secretion, which may actually increase with therapy. This phenomenon, known as Nelson's syndrome, has been well documented in humans with pituitary tumors treated with bilateral adrenalectomy. Nelson's syndrome refers to rapid enlargement of a pituitary mass that occurs after loss of negative feedback from adrenal cortisol production, which has an inhibitory effect on ACTH release. While this phenomenon has been suggested to occur in dogs, studies have shown no correlation between treatment with mitotane and pituitary size or rate of pituitary tumor growth. However, because the exact mechanism behind the development of Nelson's syndrome is not completely understood, the potential for tumor expansion as a result of adrenal corticolysis or decreased cortisol production seems plausible." (http://www.vetfolio.com/neurology/canine-pituitary-macrotumors)

While I am very discouraged about Purdue's experience with radiation treatment, I appreciate their honesty and liked the radiologist. Ultimately I guess it will be a question of trade offs. Purdue's experience with Skippy in general versus their not so great radiation outcomes with pituitary tumors. Although, I don't know any details regarding the other dogs and there could be other extenuating factors. And, I don't know the radiation outcomes for any other vet hospitals either. The reported research consensus seems to be nearly two years. But hey, I don't even know if he will survive radiation.

Thanks everyone for enduring my too lengthy reports and diatribes; this is so exhausting. Another time I will write about Purdue faculty's concern about their lack of bereavement and end of life counseling for their clients; it was an extended and troubling conversation. I would appreciate any feedback regarding radiology programs and will again search this site for other's experiences.

[labblab]

Hi Carole,

You are certainly leaving no stone unturned in what has got to be an exhausting process for you. You are doing a super job of researching these treatment options for Skippy!

Just to expand the discussion a bit further re: Nelson's Syndrome, the 2008 article you cited said that no correlation had yet been established at that time with treatment by mitotane (Lysodren), even though it seemed reasonable that the potential for that treatment effect does exist. However, here's a 2009 article that does offer credibility to a linkage between trilostane and this effect:

http://www.ncbi.nlm.nih.gov/pubmed/19041802


Trilostane-induced inhibition of cortisol secretion results in reduced negative feedback at the hypothalamic-pituitary axis
Domest Anim Endocrinol. 2009 Jan;36(1):32-44. Epub 2008 Nov 11.
Teshima T, Hara Y, Takekoshi S, Nezu Y, Harada Y, Yogo T, Teramoto A, Osamura RY, Tagawa M.
Division of Veterinary Surgery, Department of Veterinary Science, Faculty of Veterinary Medicine, Nippon Veterinary and Life Science University, 1-7-1 Kyonan-cho, Musashino-shi, Tokyo 180-8602, Japan

Cushing's disease caused by pituitary corticotroph adenoma in dogs is usually treated by medical treatment, and the efficacy of this treatment has been reported. However, controversy remains as to whether reduced negative feedback through the inhibition of cortisol secretion, similar to Nelson's syndrome, may appear as an adverse effect.

The purpose of this study was to investigate the effect of reduced negative feedback through the inhibition of cortisol secretion by daily trilostane administration on the pituitary-adrenal axis in clinically normal dogs.

Dogs were administered 5mg/kg trilostane twice a day every day for 8 weeks (n=8) or 16 weeks (n=3). After the initiation of trilostane administration, plasma adrenocorticotropic hormone (ACTH) concentrations were increased remarkably.

As assessed by magnetic resonance imaging (MRI) during administration, the pituitary became enlarged. After trilostane administration, the cytoplasmic areas of the pituitary corticotrophs were increased and the ratio of pituitary corticotrophs to all cells in the anterior lobe was greater in the trilostane-treated dogs than that in untreated animals.

In addition, histological examinations revealed bilateral adrenal cortical hyperplasia. Using real-time PCR quantification, the expression of proopiomelanocortin (POMC) mRNA in the pituitary and ACTH receptor (ACTH-R) mRNA in the adrenal gland was greater in the dogs treated with trilostane than in untreated dogs.

These results indicate that reduced negative feedback induced hyperfunction of the pituitary corticotrophs and pituitary enlargement in healthy dogs. These changes suggest that the inhibition of cortisol secretion by trilostane may increase the risk for accelerating the growth of corticotroph adenomas in dogs with Cushing's disease.

Once again, it would be great if additional research could further illuminate this effect, but I don't know whether any more exists. Anyway, just wanted to share these study results with you.

I really wish I could offer some words of wisdom to you re: the path forward. Over a decade ago when we were considering radiation for our Cushpup, our IMS also said that he'd seen dramatic improvement in neurological symptoms that lasted for about a year, as well. However, a huge barrier for us was not wanting to subject our boy to the dozen general anesthetics that would have been required at that time. I'm an anesthesiologist's daughter, so I don't take those risks lightly :o. Had we been able to consider a protocol involving fewer treatments, our decision might have been different. But I just could not see putting him through that many procedures when there was no way for him to understand how and why it was happening. Plus, his traditional Cushing's symptoms were quite disabling, and we had no guarantee that they would abate post-treatment.

My intention in telling you all this is not designed to discourage you from moving forward if you decide that is what is in Skippy's best interest. But rather to let you know that I surely realize it's not an easy decision to make. Please continue to update us as you gather more info, and as you weigh the pros and cons.

Marianne

[liltara]

Carole - continued wishes for good luck and outcomes with Skippy's treatment, whatever you decide is the path forward.

It does seem that a lack of research and funding is affecting the way decisions are made and that is concerning with the number of Cushing's dogs out there ... I do hope this will change over time.

One thing you mentioned was the Purdue faculty's disappointment with the end of life and bereavement care for their clients .. I would like to hear more about this. I could have used some clear guidance and support while Mojo experienced his last few weeks of life and decline. Feel free to send me a private message for more focused convo ...

Please know that I think of you often and pray for you and Skippy. I know there is a good answer out there for you and I am in awe of your dedication to informed decision making. It is truly inspiring and I know that so many will be helped simply by reading your reports. Sharing your research is so important and thank you for doing so.

[Whiskey's Mom]

Carole, you are a wonderful mom to Skippy and your dedication and expertise in navigating through the complicated medical terms is amazing. Trying to keep it all straight in your head plus dealing with the emotional side of all of this must be exhausting. Please take care of yourself too! I also am interested in the end of life & bereavement care info, when you have time. Makes me wonder if there was something else I could have done for Whiskey in these last months. Again, please take care. Hugs to you and sweet boy Skippy.
Annie

[molly muffin]

I think all around that more research is needed into cushings, medications, cause and effect, macro, adrenal. There are tons and tons of areas that need more research and just not enough research dollars to go around. :(

You are doing an excellent job Carole and probably know as much and/or more about macros now than most people will ever want to know.

[Carole Alexander]

Please allow me to move past all of the other issues that I have raised on my thread and you all have responded to so thoughtfully. I will return to them. Right now I am furious and really don't know what to do next. Yesterday I sent a carefully worded email to Wisconsin's head radiologist providing Skippy's brief history, medical situation and MRI. I stated clearly that I had met with Purdue radiology and that their radiologist stated that he felt that Purdue could compensate for the limitations in their radiation equipment although I didn't understand how. I inquired about and requested that Wisconsin consider him for their Tomotherapy, a version of cyber knife. I get an email back just now, at 10pm saying "You are in good hands with the radiation oncology team at Purdue...Their equipment is very similar to our TomoTherapy system. Their system can treat Skippy's tumor and spare normal tissue. Skippy will get excellent care at Purdue."

Is this a freakin secret club of professionals who choose not to step on one another's toes out of professional courtesy? Who cares who gets my money; I just want Skippy to have the best shot! I am beyond livid. I live on the east coast. Should I explore vet hospitals out there? Penn, NYC or should I just surrender and put him down?

[labblab]

Carole, I surely understand your frustration. However, I am guessing the Wisconsin team's email may relect their honest opinion. Having worked in a hospital setting for several years, I acknowledge having witnessed professional courtesy "after the fact" (docs not wanting to be openly critical of previous actions taken by others). However, when it comes to promoting their own abilities or treatment advantages in advance, they are seldom shy :rolleyes:. So for whatever reason, they may not believe their own system offers enough advantages in Skippy's situation to make the travel worth it.

From what you have told us about Purdue, I guess my greatest worry would be the fact that they have performed the procedure on only 4-5 dogs. That seems very strange to me that a university vet school would have treated so few macros over the course of years. Across the board with any type of procedure, it is generally thought that programs that do higher volumes will be more adept. I think Purdue's results, however, pretty accurately reflect the experience we've seen here with dogs who have been treated via radiation, regardless of modality. One year of symptom-free life seems to be the norm, with longer time being the frosting on the cake.

As I wrote earlier, one big concern I have had about traditional radiation programs is the number of procedures/anesthetics required. But is Purdue capable of completing the treatment in only three sessions, regardless of their less sophisticated equipment?

I know you have a lot to think over, and for your own peace of mind, you may still want to contact some additional programs that offer the cutting-edge technology, in order to get their opinions as well. I'm surely sorry there are so many hard decisions involved!

Marianne

[Carole Alexander]

Hi Marianne,
Thank you for responding to my dilemma. Even after sleep I am still shaking with anger. I am deeply concerned that Purdue has only treated four or five dogs. I am concerned about their lack of experience with radiating macros and I am concerned about their equipment. I nicely ask Wisconsin all of those questions and got the blow off response. In answer to your question regarding number of treatments, yes, Purdue has said from the outset that he would receive three treatments, a Monday, Wednesday, Friday. In April I met with a group of Purdue folk, surgeon, radiologist and internal medicine and a bevy of students. I ask about short and long term radiation effects with the three treatment approach there. A different radiologist acknowledged that yes, three treatments with a larger dose of radiation (with their equipment) increases the probability of long term radiation effects, i.e., dead dog walking. The first radiologist also said the median survival after treatment at Purdue is TWO years, not one. (I think she meant for all radiated dogs, not just dogs with macro tumors, but I was too dumb or too in shock to ask the question properly.)

You likely are correct that the outcomes of radiation with Tomo or Cyberknife are not necessarily better for many dogs, especially for those whose macros are large with severe neurologic symptoms. All the more reason that one might want a program with the best equipment and most experience. Lack of experience was why I
wouldn't consider surgery although Purdue was willing to pitch in big bucks for Skippy to launch their program.

I tried to draft a response to Wisconsin last night but I know in reality I need not bother. I also believe that the private hospitals in NYC, PA and Virginia are going to charge a larger fortune than I have remaining to invest in this endeavor. Colorado State has the most experience and high end equipment but I don't see how that is feasible. But, I don't know until I try and thanks again for your feedback; it really is helpful.

[Harley PoMMom]

I took my Harley to Matthew J Ryan University of Pennsylvania Veterinary hospital for consults and was very pleased with their service, I believe a call to them just to see what they could offer is definitely a good idea.

Another vet. hospital my GP referred me to was the Chesapeake Veterinary Referral Center, they have 3 locations in Maryland; Annapolis, Towson, and Columbia. I went to the facility in Towson and was happy with their service too. The main reason for bringing them up is a long while ago a member posted that a Dr. Jay McDonnell (Veterinary Neurologist) trained in the Netherlands with a physician that has been doing pituitary surgery for 15 years, Dr McDonnell has an office in Annapolis:

Quoted from his bio:
Since moving to Maryland, Dr. McDonnell has become well-known for his work in the definitive treatment of brain tumors and spinal cord tumors, foramen magnum decompression/dorsal laminectomies and Wobbler's disease. He has lectured nationally, internationally and regionally, and has published more than 20 journal articles, reviews and book chapters.

"Teaching continues to be important to me. I'm an assistant clinical professor at Tufts University and a consultant in Neurology at the University of Pennsylvania College of Veterinary Medicine. I think having a balance of the academia and private practice enables me to keep at the forefront of veterinary neurology."

Most recently, Dr. McDonnell has been exploring the use of pituitary surgery to treat Canine Cushing's Disease here in the U.S.

"Surgery for pituitary macroadenomas in dogs and cats has been pioneered by Dr. Bjorn Meij of the University of Utrecht in the Netherlands. Despite his work and the proven success of the technique over other treatments such as radiation and chemotherapy, the surgery has failed to be widely adopted here as a viable treatment option. The procedure is technically challenging and has a very steep learning curve, so I went to the Netherlands in the spring of 2010 to study with Dr. Meij;and I also arranged a special seminar with Dr. Meij at the University of Pennsylvania College of Veterinary Medicine. Currently no one east of the Mississippi is offering this treatment option, so it's exciting to be able to offer this."

There are thousands of cases of Canine Cushing's Disease in the U.S. each year, but the current medical treatment is medication given daily or several times per week that treats the symptoms. "With this surgery, we finally have a treatment option that corrects the disease."

http://www.vetneurochesapeake.com/our-doctors/

email addy: info@vetneurochesapeake.com

Address: Veterinary Neurology of the Chesapeake
808 Bestgate Road, Annapolis, MD 21401

Phone: (410) 224-0121 - ext 5

Edited to add: I'm not even sure Dr. McDonell is even still looking into this type of pituitary surgery, I just thought that contacting his office may lead into finding additional information regarding pituitary tumor treatments.

[Carole Alexander]

Marianne and Sharlene,
Thank you for your support and your counsel. Marianne, my one year versus two year survival after radiation confusion probably arose out of reading too much research where theoretically they reported up to to a two year survival and this was reinforced by my selective hearing in talking with the Purdue radiologist. I trust the experience of people here and if that is that it's one year if he is very lucky. But, I would still like another option with more experience.

Sharlene, TY so much for the Maryland information. I have emailed a friend in Baltimore who is significantly affluent and loves dogs as much as me. If anyone knows Dr. Jay McDonnell at Chesapeake, she will. Otherwise, they require a vet referral to speak to me about Skippy and that could be tricky with Purdue. I will explore the Penn possibility on Tuesday. Skippy does have a vet in Baltimore but he knows nothing of Skippy's Cushing's, macro, etc.

In the meantime, yesterday's crisis, was that Skippy started crying and I looked down to see him laying down with his foot straight up in the air. I thought he was having a stroke but no, his toenail had become entangled in the long hair on his ear and his toe was bleeding
from his efforts to free himself. I untangled him but had to laugh at him and my reaction. I don't know which of us I feel sorrier for; Skippy losing his mind or me losing mine. Have a great holiday and long weekend everyone.

[labblab]

Hey Carole, I definitely don't mean for you to discount the research predictions. My comments only relect my personal (and sometimes faulty!) memory. Plus, as the technology advances, perhaps the remission time increases. Or then again..maybe not, since presumably all the tumors start regrowing again upon completion of treatment. Perhaps the greatest benefit of the newer techniques is instead more precise targeting and the lessening of adverse effects.

Poor little Skippy and his toe! That was a genuine "hang-nail," for sure!! ;)

Hoping you guys can take a day off, yourselves, and savor some down time over the holiday.

Marianne

[Budsters Mom]

Hi Carole,
I haven't chimed in lately, but have been reading along. I applaud your determination and perseverance.

Buddy flew almost 4 years ago. At the time they were even less options for treating pituitary macro-tumors in dogs. I was advised by a veterinary neurosurgeon and her team. They said the once neuro signs appear, the tumor is usually too large to do much in the way of treament. Smaller dogs have less room for the tumor to go when it grows. Surgery was only starting to be an option in some cases. It was expensive and only a few surgeons in the country were doing it. The smaller the tumor, generally better the outcome. Radiation treatments were being done to shrink the tumor, allowing more time. After treatment, the tumor continues to grow and eventually take over.

Buddy's neuro signs were already severe by the time he was evaluated by the neuro team. I asked the surgeon if she would go through with any further diagnostics and radiation treatment if he were her heart dog. She looked me in the eye and said that she wouldn't put her best friend through any more pain and suffering, just to buy time. She would make him as comfortable as possible, for as long as she could, then painfully let him go. That way it would be her pain and not his. She then said, that it was my call. That was very interesting being heard from a surgeon who cuts for a living. She cared. She even kissed Buddy on the head when we left. She managed his care through our regular vet until it was time to release him.

I am not advising you as to what is best for you and Skippy. There are more options available now, than four years ago. I'll be following along and hoping that Skippy does well for many months/years to come.

Kathy

[Squirt's Mom]

Hey Carol,

You are doing a great job of researching and finding all the info you can in order to make the best decision for your sweet baby. The main factor, tho, is Skippy. Not us, not a vet, not you, not by comparing to other dogs in similar, SIMILAR, circumstances....but just Skippy. You know your baby best of all and by listening to him and following your gut you will make the right choice. He knows that as do most of us here. You are never alone on this journey even tho we may not all respond often...trust that we are here by your side.

Hugs,
Leslie and the gang

[Whiskey's Mom]

Carole please know that I think of you and Skippy every day, and am
Hoping for the best. Your love for Skippy and perseverance to help him is so inspiring and heartwarming.
Annie

[molly muffin]

How is Skippy doing? Time for an update :)

[Carole Alexander]

Kathy, Leslie, Annie and Sharlene,
Thank you so much for your sharing your thoughts and experience. It is very helpful to me. This has been an agonizing week as I've gone down the road of pursuing radiation options for Skippy. I'll try to share briefly as perhaps it will help others.

I contacted my affluent friend in Baltimore who has had 14 rescues and 4 who developed Cushing's over the years. She knows Dr. McDonnell as he did disc surgery on one dog; a 10k intervention. She does not believe that he is still performing pituitary surgery. She also had a dog treated at VCA in Springfield, VA. Her opinion is that the VCA practice has become quite corporate, with all of the meanings that have come to surround that term. They have invested heavily in diagnostic equipment and their fees, but not their service, now reflect that decision.

I also contacted Penn with an inquiry similar to my letter to Wisconsin. They politely referred me back to Purdue. Yesterday, I emailed Dr. Bruyette and briefly asked if he thought there were other options that I could or should pursue for radiation. He responded that he thought that I definitely should pursue radiation at Purdue and that they would do an excellent job. As a side note, my friend's daughter did move her dog's surgery from Tufts in Boston to the Angel Clinic, a private speciality clinic there.

What I have learned is subject to interpretation, but obviously there is a very small and close knit group of professionals in the US and probably internationally who are involved in research and treatment of oncology and endocrine disorders. They seem to exercise absolute professional courtesy across the university systems and even those who have gone into some form of private speciality practice were previously affiliated with a university. Second, regardless of any action on my part, Skippy has a soon life ending condition so he would never be anyone's success story. Third, I now suspect that with a macro as large as Skippy's, equipment and maybe experience with this type of tumor doesn't matter much given the state of the art.

Skippy is scheduled for a CT scan next Tuesday at Purdue; he is relatively stable and still ravenous, chubby, pot belly and food driven. He has increasing muscle weakness in both his front and back legs and has the old dog look in his eyes. He remains responsive to commands, a little slower though. His butt adenoma bled some after Purdue's rectal exam but seems to have healed over. He actually runs occasionally and barks (with his little bark) at the dog next door. No tremors, lots of sleeping. He's still on BP meds, nothing else; drinking lakes and peeing excessively; his cortisol was 36 last week when they stimmed him. He doesn't have a parasite but does continue to have modest diarrhea even after being off the Cabergoline for nearly two weeks.

I have agonized over the decision of whether and where to radiate. I am now resolved that radiation gives him the best shot at an improved quality of his remaining life; the matter of where has been mostly decided for me and perhaps that's just as well as it certainly will be easier.

I do think that university based vet schools (funded by state dollars and their clients) should publish their outcomes of treatment regarding various medical conditions, especially life threatening ones, to enable owners to make informed decisions on their pet's behalf. As you all know, this is such an expensive and emotional roller coaster, information to decide on treatment (or not) should not be an added treasure hunt. (Angel Clinic and Washington State have begun to do this.) While I agree that all dogs and their conditions are unique, it would be helpful information in making an informed decision.

Thank you again for all of your thoughtful and kind words and I will post more when I know more - soon.

[Budsters Mom]

We are pulling for you and Skippy.

These decisions are heartwrenching. Knowing that whatever we decide, we can't fix them and that's all we want to do.:o You are not alone Carole. There are many of us here who have had to face the toughest news possible. I will admit now to having been envious of other members's pups. Some joined the forum around the same time as I did. Buddy had to be the one with a macro. The others were responding to treatment and doing very well. I wanted their pups to do well. I really did, but why wasn't mine too? Yes, heartwrenching. :o

After exhaustive effort, you have decided to go forth with the treatment you feel will give Skippy the best shot. That's all anyone can do.

Please keep us posted,
Kathy

[liltara]

Carole,

What a relief to finally have a course of treatment after all of your research. I am glad you have made a decision in what you know are Skippy's best interests.

I am hopeful that the radiation gives him a wonderful quality of life and anxiously await your news on his progress once treatment is started.

I am rooting for Skippy and think of you often. You are making the best decisions you can for your companion and he is lucky to have such a caring and loving parent.

[molly muffin]

It is always good to have a plan and it does sound like you have one now for Skippy. The research portion is usually the most exhausting nad nerve wrecking.

Let us know what the ct scan shows and when they can expect to start radiation and how many radiation treatments there will be.

[Carole Alexander]

Hello everyone and thanks again for your kind words. I met the fourth person in Purdue's oncology department today while leaving Skippy for his CT. She asked that they also do a CT of his abdomen, otherwise they would have to do an ultrasound of it before radiation. They will not likely be able to tell if his macro is larger unless it is much larger as the CT cannot differentiate so accurately between swelling around the tumor and pituitary and the tumor itself. (At least I think that is what she said.) They do use the MRI and somehow integrate it with the CT for developing the radiation plan. It takes a week or more to develop the plan that will involve three treatments, likely next week. I quizzed her again about three versus ????. Again she mentioned his BP but then said that they are confident that they can get a good result with the three treatments. The conversation was a little like debating in English when all you speak is Spanish. Besides, at this point, I have surrendered in respect to recommended treatment. I simply don't know enough to have an informed opinion. I even said DNR regarding the anesthetic.

I can only hope that this experience is less grueling for Skippy than it is for me. My cortisol has skyrocketed. More soon.

[DoxieMama]

I can only hope that this experience is less grueling for Skippy than it is for me. My cortisol has skyrocketed. More soon.

Hugs. Remember to breathe.

[Whiskey's Mom]

Hugs from me too. With you in spirit. I'll be praying for both of you.

[Carole Alexander]

Four hours, $480, and an xray of Skippy's lungs; he has pneumonia! No CT. Thank you Cushing's. Purdue put him on Clavamox for two weeks. Then recheck, then a CT if he is okay, all stretched out for three more weeks. Cushing's is truly the gift that keeps on giving. The good news until this morning is he has been asymptomatic, no coughing, fever, vomiting, and diarrhea (thought to be caused by the Cabergoline). A few hours ago he declined chicken and kibble, became very agitated and has been panting and trembling. He may be nauseous as he can only settle for ten minutes at a time. Maybe the macro, the pneumonia? I think I need to call Purdue.

[Budsters Mom]

Sorry but I only have a second to post right now, so this will have to be short.

Unfortunately, all of the symptoms you describe below are common with a macro. When our pups are unable to settle, pain is often involved.

I am so very sorry.
Kathy


, became very agitated and has been panting and trembling. He may be nauseous as he can only settle for ten minutes at a time.

[Carole Alexander]

Called Purdue radiology who said dogs with aspiration pneumonia can deteriorate rapidly but I would have to take him in thru emergency medicine. Called local vet who is in surgery; left a message for a call back. Radiology suggested that I watch him today "for awhile". yKathy,
I know that it may be the macro as Clavamox does not have these side effects but I appreciate your feedback. Skippy has stopped pacing, trembling for the time being. I will watch and wait.

[liltara]

Oh my, poor Skippy :(

My dog, Cassidy (Mojo's sister) has a back condition and when it flares up she won't settle. It is so unsettling for me ...

I totally understand how you feel right now - prayers going out to you and Skippy for a pain-free day and some answers.

Please keep us posted.

[Carole Alexander]

Thank you Kathy. Skippy has quieted and trembling has stopped. I do fear it is the macro and I may have waited too long.

[Carole Alexander]

Thank you Liltara for your kind words. Unless it is a reaction to the anesthesia yesterday, it must be the macro. I'm not sure what I gain from taking him to a vet today. He is drinking, ate a little chicken and took his meds. Trembling and pacing has stopped. Wait and see.

[judymaggie]

Carole -- I am so sorry that Skippy has to deal with pneumonia on top of everything else. My Abbie recently finished six weeks of amoxicillin after being diagnosed with pneumonia. We went in to the vet every week for the first four weeks for repeat x-rays. Abbie was very lethargic for the first couple of weeks and gradually had more energy. I am glad that the symptoms you were seeing have subsided -- hugs to both of you!

[Carole Alexander]

Judy, thanks for sharing your experience; it is helpful. Skippy ate a little but he is continuing to tremor lightly even when lying quietly. He has stopped pacing and panting. I will have him seen tomorrow at local vet who can at least check his BP and temp. I don't really know what else to do but it so hard to watch him trembling and feel this helpless. The Purdue IMS that he sees is on vacation this week and they have no appointments this week in internal medicine, period.

[Budsters Mom]

Do you have any tramadol that you could give Skippy for pain? That might help with the trembling.

[Carole Alexander]

Kathy, no Tramadol among my multitude of meds for him. I just spoke with local vet; she thinks he is reacting very badly to the Clavamox; she said they rarely use it because it can be so harsh and cause massive pain and digestive upset. I called Purdue back to confirm their diagnosis of aspiration pneumonia; they couldn't confirm, only that he has pneumonia. They then agreed that it could be a bad reaction to the drug and offered to change it immediately. Local vet said to give him a baby aspirin and I'll take him in first thing tomorrow and ask local vet to call radiology regarding the diagnosis. I am incredibly relieved that his condition is not likely macro related. But nothing should be this hard, as someone said. Another day of worry for me and pain for him that we won't get back. I will ask local vet for Tramadol.

[judymaggie]

Carole -- my vet had me give Abbie two different antacids along with the amoxicillin. In the evening I gave her omeprazole (got best price from California Pet Pharmacy) and famotidine in the mornings. He is actually having me continue the omeprazole for a month after the amoxicillin was finished.

[Carole Alexander]

Judy, thank you, thank you. I will ask about these drugs in the morning. I think local vet is inclined to switch antibiotics but may want to talk to Purdue first. Why didn't Purdue mention the Clavamox reaction possibility at 8 am this morning? The answer I think is because radiology is not internal medicine and they didn't want to speculate about what was happening. It is beyond enraging.

[molly muffin]

oh my gosh, pneumonia! Poor Skippy and you, just can't catch a break it seems.

Hopefully a quick recovery from this and just a minor setback on the journey.

yay Judy for knowing exactly what might help!!

[Carole Alexander]

No, no breaks for Skippy, Sharlene. He was seen this morning at local vet. He is weak, lethargic, panting and still trembling at times. He is eating and drinking again. The vet thinks that he has soreness in his disc and panting and trembling are indicative of pain. Now, she does not believe that he is reacting to the Clavamox as that generally results in diarrhea and vomiting. She did not prescribe antacids, instead she put him on Carprofen and gave me some Tramadol. The vet said that Purdue now thinks it branchial pneumonia and only one lobe and/or a tiny part therein is affected. She does not believe that his symptoms are related to his Macro. The good news is that his BP is still lower at about 130, that's about a 100 point drop since April. Don't know what more to say except thank you to everyone; I so appreciate your support.

[judymaggie]

Carole -- another caution from me based on Abbie's recent history. She has IVDD (interverbral disc disease) and had frequent back leg collapses and a lot of pain upon stimulation of her lower back. I had been giving her tramadol but she was still in pain so the vet started her on Deramaxx. At that point she was only eating a small amount of food -- then, about three weeks after treatment with the Deramaxx started, she stopped eating, stopped walking, was very lethargic and had black, tarry stools. The vet determined that she had an ulcer from the Deramaxx (also an NSAID like Carprofen is). We immediately stopped the Deramaxx, she had two sub-q fluid treatments and tried to get her to eat some easily digestible food. Her stools gradually improved and she gradually gained back some energy.

With Skippy not eating regularly, I am concerned that the Carprofen (on top of taking the Clavamox) will be too harsh on her stomach, especially without having antacids on board. I regret giving you one more thing to worry about but, if me, I would rather be informed.

[liltara]

Oh Carole, I don't have many words.

Hang in there and I pray that Skippy's pain subsides.

Both of my dogs had pneumonia when they were puppies and made full recoveries if that is any consolation.

Please keep us posted.

[Carole Alexander]

Skippy ate yesterday with great encouragement and this morning with less; I am continuing to give him the Clavamox and last night I gave him half a Tramadol. He is very lethargic and quiet but he will walk out to pee - no tremoring or panting. Judy, I hear you on the Clavamox and Carprofen. I am really reluctant to give him the Rimadyl and when the vet tried to give me more, I declined. I actually think I threw the last bottle away. Also, I am not so sure about the disc problem being the source of his pain although it was noted on the MRI and they could have pulled something during x ray. I could continue him on the baby aspirin and see if that helps at all. He is such sick boy; I no longer know whether or what to treat. Thanks Liltara for sharing your experience. The vet said that the pneumonia should clear with one round of the Clavamox. We'll see.

[Budsters Mom]

Your GP vet does not think that Skippy's pain/tremoring is due to his macro. All of the symptoms that you described previously, are Symptoms of an enlarging macro tumor. Yes, a disk problems can cause similar symptoms, but I would be reluctant to rule out the macro as the source of Skippy's pain. I am glad that the Tramadol seems to be helping.

Kathy

[Carole Alexander]

Kathy, I too think his macro could be the source of his pain. The only thing that is suspicious is that the pain began immediately after his trip to Purdue and starting the Clavamox, within ten hours. It would be a remarkable coincidence of timing. Vet was able to elicit a reaction in disc upon physical exam but it was not pronounced. So, we have the Macro, the Clavamox, the potential disc, the pneumonia and Cushing's. If it is the Macro causing the pain, do you know or have an opinion about whether he is still a candidate for radiation? I do know the larger the tumor and the more symptoms it is less likely that radiation will lead to an improved quality of life. And, Purdue may decline radiation and I will have my answer. Thank you for your thoughts.

Carole

[Budsters Mom]

Hi Carole,

I am sorry. I cannot answer your radiation question because I am not a vet. I do know that the neurosurgeon that was overseeing buddy's case advised me against radiation. His symptoms were advanced and she didn't feel he was strong enough and that it wouldn't buy him much time. That's really something you need to ask Skippy's vet because each of our fur babies are different.

[Carole Alexander]

Thank you Kathy and I will ask radiologists and IMS when I take him in for x rays next week. He is weak after the Wednesday/Thursday episode, but is beginning to return to the old/new normal. I just don't know what to think. Macro, pneumonia, disc, Clavamox, Cushing's or all of the above. He reluctantly walked for a few blocks tonight and is back to ravenous in general. I am not giving him Tramadol or Rimadyl for the time being as he does not appear to be in pain currently.

[molly muffin]

I remember Buttercup has horrible headaches from her macro tumor and they did the 3 treatment radiation at Davis. (I just reviewed her thread earlier and came across that) It didn't prevent the radiation from being done.

Poor Skippy hopefully he can get over these other issues so the main macro issue an be treated and he will feel better

[Carole Alexander]

Thanks Sharlene for reminding me about Buttercup. I too read his thread recently. Skippy goes back for another round of x rays on the 15th. Last night he was panting and restless and while it is hot here, he is in air conditioning. I gave him a Tramadol and he was able to settle. I have an appointment tomorrow with Dr. Scott-Moncrieff, his IMS. I doubt that she can offer any meaningful assessment until after they clear up the pneumonia and he has the CT scan. However, I do want to discuss the incident last week and the question of whether he is currently in pain with the panting and pacing. Thanks for offering a little hope.

[liltara]

Carole -

My dog Cassidy (Mojo's sister) has back disc issues and when she slips one her pain manifests as panting, shaking and inability to lay down and settle. The disc slipping for a dog is very painful and it is always frightening to see her like that.

Her eyes also tell me the story of her pain - glassy.

I hope this helps in some way as you try to assess if Skippy is in terrible pain - each dog is different, and it is so hard with a macro to deal with too, so follow your instincts. You know Skippy better than any vet or person here on this forum.

It would be so much easier if they could just talk to us, eh?

Wishing you and Skippy good luck today and positive outcomes.

[Carole Alexander]

Hi Liltara, such a thoughtful and sensitive comment, thank you. Skippy's IMS thinks the pain last week was due to radiology staffr twisting his body during radiographs. (This was also the opinion of the local vet.) Whether they are right or wrong, time will tell. The IMS doesn't feel that Skippy's condition has changed much although the crisis of yesterday was a student finding another nodule in his back leg. They have aspirated Skippy's nodules for Lymphoma several times previously and the findings were negative. However, it continues to be a question and that would mean "game over". While aspiration yesterday was not conclusive, it was not positive. Just too much blood in the draw and not enough fluid to accurately evaluate. Skippy goes again tomorrow for radiographs of lungs to see if we have cured bronchial pneumonia and another aspiration of the nodule. I did state that we must resolve the Lymphoma question before we proceed with CT and they agreed. Skippy and I are both worn down from this journey, the heat, the escalating expense and the uncertainty of it all. But we will both soldier forward. In for a dime, in for a dollar. He is weak and very Cushing's but quite the trooper.

[Whiskey's Mom]

I really don't know what to say, other than repeating myself by saying that I'm thinking & worrying about you & Skippy. You're doing everything you possibly can to help him and he loves you for it!

[Harley PoMMom]

I have no wisdom to share either, I just wanted you to know that you both are in my thoughts and prayers. (((((Hugs)))))

[Carole Alexander]

Annie and Lori, I am pretty much without words too so I will just keep putting my bank card and one foot in front of another, although at times it is feeling like a B movie version of a Bataan Death March. Skippy had more x rays this morning and his nodule aspirated again. He remains on Clavamox as the pneumonia has not completely cleared. Again, the nodule bled and while three vets who examined the discharge could not completely rule out lymphoma, they are fairly certain that it's not. Because they feel that he is clinically stable (relatively speaking) we will proceed with the CT Scan next Monday. They will thoroughly scan his abdomen and lower body to search for lymphoma or anything else. If they find nothing, they will proceed with radiation the following week.

Except for the incident after x rays last week, Skippy is tolerating all of these vet trips incredibly well. I just gave him fresh chicken and meds including Tramadol to try to head off another event. I am so grateful that he is eating. He rides in my lap to and from Purdue which I know is illegal and now my driver's license just expired and I can't renew until I get back to Maryland. But if this is as close as we get to living on the edge, no worries. Thanks for your support.

[Carole Alexander]

In spite of my worst fears, Skippy tolerated the CT scan well today, although, it was a long recovery which they say is typical with Macro's. They scanned his abdomen and then did an ultrasound to check his liver, which is enlarged from the Cushing's. They will compare the ultrasound with the one done in December 2016 but they are not alarmed. Radiation will begin next Monday. No Lymphoma on CT or ultrasound. All of this is a gift, for a moment - to Skippy and me...

[liltara]

Carole,

This is wonderful news - so happy to hear that Skippy's CT did not show anything alarming.

These doggies are such troopers ... looking back now, I am amazed at how brave and strong my Mojo was while battling this awful disease. He just took it all in stride as much as he could and with the exception of being totally obstinate when I gave him pills he was a perfect patient.

This is truly a gift we are given when we get a reprieve from all of the bad news that comes with this illness. Enjoy the next few days with Skippy doing all the things you love to do together!

Sending positive thoughts for radiation on Monday and praying it brings some much needed relief to both you and Skippy.

[Squirt's Mom]

Oh I am so glad nothing untoward was found on the US! Now all you have to do is hold on til Monday. Do that one breath at a time if need be and love on that sweet boy every second you can. We are here anytime you need or want to chat but we also understand Skippy is your priority right now...as he should be. ;)

Hugs,
Leslie and the gang

[labblab]

Beaming all my positive thoughts and well wishes your way, too! Skippy is such a trooper and you have been working tirelessly, Carole, to grant him the best possible care. I surely will be hoping for the best possible result on Monday!

Sending gentle hugs to you both,
Marianne

[Carole Alexander]

Liltara, Leslie and Marianne, thank you for posting, your comments are so kind, supportive and thoughtful. I have avoided this site all week as I've been trying to stay focused on the task ahead and not be emotional about it all. Skippy remains stable, but weak, mostly quiet and very much into himself. His appetite is steady and all of his Cushing's symptoms are in full flower. He now has his own personal small floor fan that he parks himself in front of. His belly is gnormous and I think he has gained three or more lbs. in the past several months, either bloat or food.

If I understand what Purdue vet is saying, there hope is that radiation will at least sustain the tumor at its current size, possibly shrink it and reduce the swelling around the tumor so as to diminish the neurological symptoms, until it starts to grow again. Mostly, I'm pretty stoic at this point as it is his only viable shot for an improved quality of life. I don't know how I'll feel if he doesn't survive this or if it has no effect but I'm trying hard to move to a point of acceptance. While I have often called Skippy "Flower" over the years because he has such fine features and at times appears so delicate, in reality he was a very tough boy. I hope that toughness is still in there somewhere. I'll let folks know how he does and thanks again for your many kind and helpful thoughts.

Carole

[Whiskey's Mom]

I can't help it- I'm laughing out loud at the thought of Skippy in front of his fan. So so cute, I can just picture it. Such a little trooper he is. Thinking of you & sending hugs.

[Carole Alexander]

Thanks Annie and I hope you are doing okay and getting ready for Italy. If I can figure it out, I'll post a photo of Skippy with his chubby belly and his fan. He is a sight!

[liltara]

Carole - oh, my heart is breaking for you. I felt the same during Mojo's journey and it is soul crushing.

They are so much stronger than we ever think - Skippy is a little warrior and I wish you both the best outcome possible from his radiation treatment. I hope it brings him some much needed relief.

You are in my thoughts.

[Carole Alexander]

Liltara, what a sweet and thoughtful post. Thank you for thinking of us and worrying about how this will turn out. Of course, I hope for the best and sometimes fear for the worst. I know that I will have to accept the outcome regardless and am trying to get my head in that place. Meantime, Skippy is having a bath next and a blow dry. My crazy theory is that they will treat him better, more carefully, with more tenderness, whatever, if he is sparkling clean. A little streak of neurosis I guess. Best to you and I hope you are staying above water in the grieving process behind Mojo and your friend. Hugs,
Carole

[Carole Alexander]

Skippy's all day event at Purdue today was in vain. The machine "broke" as the vet said, while they were radiating another dog. (They said the dog is fine.) Skippy goes back on Wednesday morning. Yet another I don't know what to say moment except my confidence in these folks, that was already shaky, has taken a serious hit. But, I am out of options.

BTW, in case anyone is interested, the cost is up to 4,400k to 4,800 for this phase, plus the 1k for pneumonia meds and x rays. I haven't bothered to add up the costs prior to this. This is still a lot less than either east or west coast costs. A woman on FB contacted me this morning; she lives in NY and they estimated the cost to radiate her dog at 8k. I just hope this isn't a case of you get what you pay for.
To be continued...

[DoxieMama]

Oh Carole, I'm so sorry for the delay. I can only imagine how you're feeling about it all, but we'll keep hanging in here with you while we wait.

[Carole Alexander]

Skippy had radiation therapy this morning. He was out by 1pm. So far, so good. He just ate a small amount of food along with his meds. He is drinking and drinking. He is a little groggy and confused but otherwise okay. Round 2 is Friday. They are still concerned about a lymph node in his rear leg but haven't tried to aspirate it again; I'm going to ice it. They gave him an injection of prednisone and he starts the tablets tomorrow. On Monday, Purdue did a neurological evaluation and concluded that he is in relatively good shape for having a macro and being 12.

Skippy is now on the porch barking at something outdoors. However, I do understand that there likely will be many tough days ahead.

Thanks again everyone again for your kind words and support.

[DoxieMama]

Go, Skippy, Go!

[liltara]

YAY SKIPPY! What a little trooper he is ...

So glad it went as well as can be expected. Hoping that you see some good results very soon.

[molly muffin]

Yay, so glad he did well with the first radiation treatment.
bummer about that machine breaking right when trying to get everything together and sorted to start this. Not the way to start out this sort of journey for sure

You're doing great. I know it is nerve wrecking and at times even nauseating with all the worry, but you are doing fine. :)

[Carole Alexander]

Round 2 is in the bank; he is better today after treatment, not confused or lethargic and very hungry. Must all be the prednisone. The radiologist said that likely it will be at least a month before he responds to potential tumor shrinkage. Purdue is very pleased with how well Skippy is tolerating the anaesthetic. Obviously me too.:)

[molly muffin]

This is awesome news!!! Go Skippy!!

[DoxieMama]

Woo hoo!! Such great news!

[Joan2517]

Great news, Carole!

[Carole Alexander]

Skippy graduated from radiation today complete with a Purdue Radiation Scarf and a certificate that included his photo. He is fine and the same. Still on Clavamox, BP meds, Pred and Denamarin. He goes back for Neurological exam in ten days to create a baseline. They expect no change in functioning for a month or more. Purdue radiology was very, very good in spite of all my reservations. He was radiated with 8Gy X 3 on three different days in a one week. He has had no side effects so far.

I have no idea if this will help him but time will tell. I'm very grateful this part is over for him and for me. Thanks again everyone and I will post on the next chapters. :)

[labblab]

Congratulations to both you and Skippy, Carole! I think you are both very brave :o :o, and I'll be so anxious to hear about every single step further down the road.

Sending healing wishes to Skippy and a big hug to you, ;) :)
Marianne

[DoxieMama]

Woo hoo! That's awesome. Lots of healing energy for Skippy and love for the both of you.

[molly muffin]

Oh my gosh that is wonderful to hear Carole. We look forward to the next chapter on yours and skippys journeys and remain hopefully optimistic. :)

yay for purdue.

[Squirt's Mom]

Oh I am so glad this is behind you and Skippy, Carole! I am also glad this was a much better experience than you had feared...and me too. ;)

I choose to believe that you will start to see things improving soon...small, teeny things at first that make you wonder if you are seeing things or maybe losing your mind hoping so hard. But soon you realize those things were real and were the foundation of a new life for Skippy!

Hugs,
Leslie and the gang

[Carole Alexander]

Hi everyone and thanks yet again for your support. Leslie, I am watching Skippy with a magnifier, butthe radiologist was nearly emphatic that the earliest that I might see any change is a month. She thinks any improvements I'm seeing now are prednisone related. He is more alert, more ravenous if that's possible, but refused to walk last night in the heat and fireworks melee. (Although he's not reactive to loud noise.) He looks more alive and is a bit more responsive to commands, more willing to be petted, brushed or messed with. But truly, no one but me would see a speck of difference and I may be imagining it. I am trying very hard to have no expectations of the radiation but of course that is hard. I waant to get him up and take to the streets. But truly I know that it just may not work. I now am not so convinced that it matters whether the radiation is Cyberknife, Tomotherapy or plain old SRT that he just had. His tumor was relatively large but his symptoms were not extreme relative to other dogs described here. The total cost of this phase of the boy's treatment was $4,200. I do not regret for a second spending the money and am glad that I was able to do it regardless of the outcome. I know nothing about his Cushing's except that his liver is enlarged, belly is enlarged and he drinks and pees a lot so I presume he remains full blown on the Cushing's front. They have poked the lymph node on his rear leg four times total now and they suspect that he has an old dog growth on top of that node as it consistently produces blood. They feel highly confident that it's not lymphoma. He's still on Clavamox for the pneumonia and they will x ray him again next week to see if it has cleared. Unattended is the adenoma on his butt that remains stable.

Reading all of this I realize what a sick little guy Skippy is or at least was. If he comes out on the better end he truly is a miracle of modern medicine and his positive attitude that there is nothing wrong with me that my mom can't fix! I wish it were so.

Carole

[liltara]

Carole,
I am so happy to hear of this progress - Skippy is seriously a warrior.

With all that is ailing him, he still fights and he now has an even better chance at improved quality of life because of you.

It is all we can do to give them the best care we can and make decisions based on the information we have. I am so glad that you and Skippy continue to have time together to love and cherish each other.

I do hope that you see improvements from the radiation - had I known in the beginning of Mojo's journey (before trilostane and all of that drama) what I know now, I would have tried radiation. Lessons learned ...

Keep us posted and know you are in all of our thoughts as you and Skippy fight the good fight :)

[Whiskey's Mom]

Carole,
Happy to hear your little trooper is fighting onward with his awesome Mom beside him. I can't beleive all you two have been through, together. Sending hugs to both of you!
Annie

[Carole Alexander]

Liltara and Annie,

My thanks to you for continuing to follow Skippy's progress and for your kind words and thoughts. It's hard for me to believe that the radiation is behind us by a week now. It was all so scary especially after the pneumonia. While Skippy has not been transformed into Super Dog, he has no visible short term effects from the radiation. He still moves rather slowly but he is moving and clearly is gaining more strength. Two days ago, he jumped out of the front seat of the car when I ran back in to get something. Yesterday, he jumped out of the bath tub when I went to get an extra towel. He will now walk, albeit slowly. His bark is stronger and he seems a little more interested in life around him. He is starting to become very suspicious of all the meds and yesterday turned down one wrapped in ham! So, I am hopeful that the radiation is working but maybe it is just the prednisone. As Leslie said, looking for teeny tiny changes. Wednesday is the neurological evaluation and x ray of his chest and I want a BP check. I read that Doc, the dog radiated at U of FL had a subsequent MRI or maybe a CT two or three months after radiation. At this point I am not inclined to do that. Either this works and it works for how ever long or it doesn't. Maybe I will feel differently in the future as I never thought four months ago that I would permit him to receive radiation.

On the Cushing's front, Skippy's ravenous hunger has diminished but not the drinking and peeing, although the frequency of peeing has lessened. His coat and belly seem about the same to me. Of course I won't know about his liver until after the x rays. More to come...and again, thanks everyone for your support even when you likely questioned my sanity. There have been times in the last months when I have questioned it myself! :p

[Joan2517]

Sounds good so far, Carole! Little improvements that make us feel good.

[molly muffin]

Oh great to read this. Skippy seems to be doing very good compared to where he was before the radiation. Hopefully the improvements keep on coming!

[Carole Alexander]

Hi Everyone,
I am actually grateful that Skippy and I have been bumped off of page one and that folks who have dogs in crisis have filled the space and can get support that they desperately need.

So here is the Skippy update for those who are interested: Skippy is doing very well thank you. We are 15 days out from the last radiation treatment. He is showing a number of small signs of renewed interest in life:
He wags his tail again in a tiny wag.
He tells me, mostly with his presence and his eyes that he wants to go to the bathroom.
He is much more interactive; barks (in his little bark) to be let in, responds to petting and tummy rubs, follows me to the door if I'm leaving, sits and stares at me for meals.

His walks remain short, he sleeps a lot, he still has the occasional accident in the house on the papers, and he remains far far from the Skippy of old. But he does not appear to be in pain, confused or bewildered by his world, but his world remains pretty small.

He has not been stimmed again for Cushing's although I fully expect that his cortisol will be high and we will be back down the Vetoryl trail soon. But that may be a good thing for him and ultimately for me.

Skippy's radiographs on July 12 were identical to ones in June, meaning that medically he still looks as if he has bronchial pneumonia. He has never had one clinical symptom of pneumonia. While they think there could be a more serious underlying condition
they felt that a CT scan of his chest would be for their benefit, not Skippy's.

We are weaning off the prednisone and are nearly done with the last round of antibiotics. Skippy's heart murmur was undetectable by four vets in radiology; his swollen gland in his leg is as far as they can tell, negative for lymphoma and his chest was clear on x rays and CT scan. His liver was still swollen and he will remain on the Denamarin for the foreseeable future. After the next Stim test I plan to have the adenoma on his butt removed. So, nine months later, we are back to probably plain ole Cushing's. What a journey, what a relief in many ways. Even if I see no improvement in his quality of life beyond where he is today and knowing that it won't last oh so long, I am grateful that I could give him a shot at a better life for awhile. Indeed, we are both so fortunate! Thanks everyone for your hundreds of kind words, expert advice and support through the crises, chaos, and calamities. You all are the best! And, I will send more Skippy reports - the good, but no bad or ugly we hope.

Carole

[Budsters Mom]

Hi Carole. Happy to hear that Skippy is holding his own and does not seem to be in pain.

I do have a few thoughts... Prednisone does help reduce the swelling around the tumor. It can temporarily improve neuro symptoms. That could also account the inprovement in symptoms that you are seeing.

Also, Radiation therapy has been done in an attempt to shrink Skippy's macro-tumor. Vetoryl has been linked with causing macros to grow. You mentioned possibly starting Vetoryl again if Skippy's cortisol is high after testing. In this case, I probably wouldn't restart the Vetoryl. I would deal with the symtoms of his higher cortisol.


He has not been stimmed again for Cushing's although I fully expect that his cortisol will be high and we will be back down the Vetoryl trail soon.

[Carole Alexander]

Kathy, you raise a really important issue that I thought about a great deal after Skippy's MRI and the macro diagnosis. The evidence that Vetoryl causes the pituitary tumor to grow seems very solid. I have just begun to try to research this question and ran upon a couple of articles.
http://www.vetfolio.com/neurology/canine-pituitary-macrotumors
http://www.dvm360storage.com/cvc/proceedings/sd/Endocrinology/Lathan/Lathan,%20Patty_Treating_hyperadrenocorticism.pdf. Neither fully address the question: should Vetoryl be used after radiation?

I think that Dr. Scott-Moncrieff at Purdue believes that the answer is yes. (She stated in June that Skippy would likely need to be put back on Vetoryl after radiation because radiation is unlikely to control his Cushing's.) My current thinking regarding these treatments for macros, i.e., radiation, surgery and Cushing's or Addison's meds after is that animals are often outliving the knowledge and expertise of veterinary medicine. This is a prime example that so far I can't find addressed in the internet literature. Neither radiology or internal medicine at Purdue think Skippy will not live longer than a year after radiation, so in reality does it matter whether I treat the Cushing's or not? I really don't know whether it would improve his quality of life or just further shorten his life.

Regarding the prednisone, yes I agree I may be seeing temporary neurological improvements. I am weaning him off the pred now but he won't be finished for another three weeks. This week I have observed some loss of hearing. This may be a short term side effect of the radiation but I just don't know. While I am certain I could call and ask questions, I likely only would get generic answers. Purdue radiology said that they have "done all that they can do for Skippy". He did have a neurological exam about a week after radiation and his condition then was unchanged from prior to treatment. I have no clue as to why they did the exam so quickly after and didn't have the presence of mind to ask.

Thanks Kathy for raising the issue and I appreciate your recommendation that I not put him back on Vetoryl. I am trying to research L-Deprenyl but that drug is full with controversy as well.

Carole

[Budsters Mom]

Carole,
I am not a doctor, nor claim to be. I have lived the suspected Macro route with my little Buddy. From my pet parent perspective, which is all I have, I wouldn't restart the Vetoryl. Higher cortisol actually masks other symptoms such as arthritis and allergies, acting like a natural bandaid of sorts. It is possible that Skippy might actually feel a little better with a higher cortisol level. Yes, uncontrolled Cushings has it's own risks. Skippy is a very ill little boy. Uncontrolled Cushings may be preferable to restarting Vetoryl, leaving the tumor unchecked. It's a really tough decision to make. Quality of life trumps everything in my opinion. It's not about buying extra time. It's about helping Skippy be the Skippy you know and love, for as long as he's happy and comfortable.

Macro's SUCK! There are no cures. The tumor will continue to grow and eventually take over. Hopefully the radiation treatments will buy him more time. There is no cure for Cushings either, but I am confident that there will be someday. This is what makes it all so very hard. You are Skippy's best advocate. Do what you ultimately feel is best for him because no one knows him as well as you do. This is not meant to scare you and I apologize if it does.

Kathy

[liltara]

Carole,

I only have a minute but I wanted to support the idea of not putting Skippy back on trilo.

With Mojo, it is very clear to me that his tumor grew swiftly (more swiftly than it would have) because of the trilo. I have my own pet parent experience and the opinions of the experts I consulted during his treatment (Dechra and local vet).

With all that you have done, valiantly, to improve Skippy's quality of life it seems counter-intuituve to put him back on medicine that will likely make him feel worse as the tumor grows.

I concur that the higher cortisol is preferable to the terrible side effects of trilo and a macro.

Please keep us posted - you are the best decision maker for your dear boy and we chime in just to help you weigh all options.

Wishing Skippy continued improvement and stability :)

[labblab]

Carole, I know you will make whatever decision is best for Skippy and his unique set of circumstances. I decided to add a note here, though, really for the benefit of readers who may just be starting out on the Cushing's diagnostic journey and are becoming fearful about ever starting medication treatment due to a worry that treatment might hasten growth of a pituitary tumor. Until an actual cure for pituitary Cushing's is developed, I'm afraid that treatment decisions are always going to come down to judgements about quality of life. What may be best for one dog may not be best for another. My own thought is that lengthening a lifespan may not necessarily be a fair tradeoff for a more compromised lifespan. So, for instance, even if treating with Vetoryl may be associated with quicker tumor growth in some dogs, the tradeoff may be worth it if the quality of life is improved even for a shorter term.

I now suspect that my own Cushpup, a Lab, was suffering from a larger pituitary tumor long before he was officially diagnosed with the disease at all. After several months of trilostane treatment, he did end up with neurological issues that were characteristic of a macro. However, long before that, he exhibited classic Cushing's symptoms that were totally robbing him of his quality of life. By the time we started him on trilo, he spent his days and night either swilling water, peeing, starving, or panting on a small patch of our main floor that had hardwood instead of carpet. He could no longer jump on the couch, climb the stairs to our/his bedroom, jump in the car, chase a ball, or negotiate steps into his beloved backyard. He was living a shell of a life. Trilostane was an experimental med at that time, and I must tell you, I cried tears of joy when our first dose arrived in the mail and I could finally treat him. I do believe we would have released him at that time had the treatment not helped.

As it turned out, the trilo DID help with those symptoms, and we had about six months of improvement until the neurological problems emerged. For reasons that I've talked over with you elsewhere, we did not opt for radiation and we lost him. However, had radiation been an option for us, I have no doubt but that we would have resumed the trilo again had his typical Cushing's symptoms remained or reemerged. Regardless of whether or not it would have hastened tumor regrowth, his immediate quality of life would have trumped all else.

Once again, I am not writing this to advise you as to what is best for Skippy. But instead, I just want folks to know that there is really no cookie cutter approach to all this. Every dog's lifestyle and symptom profile has to be taken into account when making these types of decisions. But if classic Cushing's symptoms are making a dog miserable, I hope our readers won't discard consideration of treatment simply out of the fear that tumor growth may ultimately somehow be affected. Thank you for letting me hijack your thread, and I continue to wish you and Skippy my very best!

Marianne

[molly muffin]

I don't think there are any easy answers, if dealing with a macro. Most dogs don't have a macro, the tumor never grows (when I say most, i'm referring to the ratio of dogs on this forum that do have macros/neurological symptoms vs those that don't and our facebook page, where the ratio of most being small pituitary tumors vs those having neuro symptoms symptomatic of a macro) but for those that do and even go through radiation, it often seems that the tumors grow. I'm not sure about after radiation. I think Dawn had a year or two with Buttercup after her radiation treatment at Davis. She was I think put on vetroyl about 6 months after the radiation treatment. (I'm going by memory here) as I haven't looked that the thread for awhile.

It seems to me that if a tumor becomes a macro then it just wants to grow, so there could be a risk if that is true and that is just a guess/observation on my part. There really isn't enough research and documentation regarding the after radiation treatment options.

[Carole Alexander]

My thanks to each of you for responding to my dillema with Skippy. I think your comments are valid on both sides of this argument. Kathy, I agree that Skippy is a very sick boy and that a macro and Cushing's suck. I also agree with Liltara's comments about Mojo; I believe that Vetoryl sped up the growth of Skippy's macro although I have no proof of that. (Except that his deteioration began in November with Vetoryl treatment and continued to advance untill I stopped Vetoryl in late March.) It's also curious that between his MRI in early April and radiation planning in late June involving a CT scan there was no growth in the size or height of his tumor according to Purdue Radiology.

Marianne, I don't feel as if you hijacked anything. Many times knowing what we don't know is the most important thing. And, we all agree that quality of life is the only factor in this decision. Because his symptoms, i.e., weakness, pu/pd, lethargy, dullness, hunger, hair loss, etc., are and always have been nearly identical to many dogs with severe Cushing's, I still don't know what I'm looking at. I'm currently treating his liver, BP, kidneys and he just finished another round of Clavamox for his lung condition. To be clear, I'm saying that I don't know if these symptoms, especially the lethargy, weakness and dullness, are caused by Cushing's, by the macro or both.

Yesterday I sent an email to Dr. Scott-Moncrieff but haven't heard back, expressing my concerns about restarting Vetoryl and asking whether, short of Vetoryl, there was anything else medically that I could try to help Skippy. Or, if medically we are at the end of the road except to see if he survives and whether the radiation helps him over the next several months. I have again begun to research some of the other Cushing's drugs and most or all have been deemed effective with only specific tumor types, e.g., L-Deprenyl, or are simply unaffordable. So, as usual, I am stuck but I'm not giving up - yet. I will send Dr. Bruyette an email and seek his opinion again. I really appreciate everyone's feedback as your experiences and knowlege are incredibly valuable to me.

Carole

[Budsters Mom]

Hi Carole,

It is true that the majority of pituitary tumors stay small and do not grow into a macro. At least not big enough to cause neurological deficit's. I am not against treating Cushing's with medications such as Vetoryl (trilo) or Lysodren. These drugs can/do manage Cushings symptoms well for many of our pups.

My concern is with restarting Vetoryl after radiation, when a macro-tumor is already present. Radiation is tried with no guarantee that it will do anything. It is hopeful that it will somewhat stall the tumor's growth, possibly even shrink it to some degree, relieving some neuro signs temporaily. All in hope to buy a little more quality time. I understand Marianne's thought regarding this and she does make a point. It is all about quality of life. However, it seems counterproductive to restart a drug to reduce cortisol, leaving the tumor unchecked to grow. Radiation has been done to help shrink the tumor in hope to relieve neuro symptoms. Mega $$$$ have been spent to do this. Restarting Vetoryl in this circumstance just doesn't make sense to me.:confused::confused:

Skippy reminds me of my own little yorkie Buddy. All of this is heartbreaking. Watching Buddy slip farther and farther away and not being able to stop it tore my heart out. It still hurts over fours years later. So much that I still come here to help when I can. I do this as a pay it forward, so to speak for all the help and support that I received during Buddy's journey. That support was unwavering and literally kept me from going totally insane. We are here for you and Skippy and will remain here for you always.

You are a fighter Carole! Skippy is blessed to have you in his corner. :)

Kathy

[labblab]

Carole, I know that Skippy has been so unwell for quite a long time. Did you feel as though you were seeing any improvement at all in his conventional (non-neurological) Cushing's symptoms while he was taking the Vetoryl?

Marianne

[Carole Alexander]

Kathy, thank you so much for your kind words. I too appreciate your support and that of so many others on this forum, more than words can say. I have read your thread describing Buddy's deteioration and it is heartbreaking to watch our dogs slip away with this lousy macro.

I clearly understand that restarting Vetoryl is likely a high risk proposition. What I don't know is did the radiation reduce the swelling and perhaps will it shrink the tumor. In spite of reading about other dogs who saw immediate improvement, Skippy is not among them. Radiology was quite emphatic that if I saw improvement, it would be month, more like several, before there was improvement. And, I still don't know the quality of the radiation protocol or their equipment compared with other facilities.

Marianne, I can't recall what Skippy's cortisol level was at the beginning of December. I want to say he was in the 30's but I'll check. At the point of the last Stim he was down to 9 then back up to 11 but still with clinical symptoms. I did see modest improvement on the low Vectoryl dose, 10, 15 even 20. When we increased to 30, he became very ill, refusing to eat, tremors and severe lethargy and we stopped the Vetoryl in late March. I have never know from the outset which of his symptoms were caused by cushing's and, in retrospect, which were caused by the macro. Initially, five different IMS and the local vet all thought that his symptoms, lethargy, distancing, limited interaction and general dullness were all Cushing's related, until the MRI. He has consistently displayed the same symptoms but now intensified since last November. Both with Vetoryl and initially Cabergoline, he showed modest improvement. Cabergoline caused digestive distress consistently.

No word back from Dr. Scott-Moncrieff @ Purdue. I guess I could take him back to Purdue and get another Stim test and blood work to see how his liver, kidneys, BP etc., are doing. Clinically, he seems quiet, subdued and fragile. He walks slowly, doesn't want to be outside except to lay on the porch, doesn't bark much, never cries, doesn't respond to petting and is like a stealth dog. He can hear but I don't know how much. Pred tapering continues for three more weeks.

Or, I can just watch and wait and see. Thanks again so much for the feedback and questions.

Carole

[Carole Alexander]

I made an appt. for Skippy to be seen by Dr. Scott-Moncrieff on 8/8. That will be six weeks after radiation.

Carole

[Carole Alexander]

Dr. Scott-Moncrieff's reply to my email. Not sure what I think except there is no plan for follow-up imaging.

"Thanks for your email. I am glad that Skippy’s neuro signs are slightly improved. We will have to see how he does as you taper the prednisone.
Regarding the Cushing’s signs I would not expect any improvement until you have discontinued the prednisone and as we discussed even then his signs are likely to persist because the radiation is much better at managing the neuro signs than the endocrine signs. The concern about the tumor growing with medical treatment is something that we worry about prior to radiation therapy rather than afterwards. If the tumor responds appropriately then it is absolutely appropriate to treat medically and we could use either mitotane or trilostane. I would recommend that you make an appointment to see me after Skippy has been off the prednisone for at least 2 weeks. Then we can assess where things stand endocrinologically.
Of course I am happy to see him earlier if you would like me to. When do the radiation oncologists want to see him again? When are they planning follow up imaging?
Best Wishes
Catharine"

[labblab]

I do understand the concerns expressed by folks here, but from our experience on the forum over the years, it is not unusual for clinicians to resume treatment with either trilostane or Lysodren subsequent to radiation treatment. I cannot say whether this is because they are less concerned about hastening regrowth once the tumor size has been significantly reduced, or whether it's because there simply are no other good options for controlling reemergent conventional symptoms.

[molly muffin]

I notice what he said about the predinsone and it's true that it will cause all the same symptoms as cushings because that is it's nature, so maybe they think that is the cause of some of the symptoms.

[molly muffin]

Hi Carole!!! So how is Skippy doing? I had to go looking but found you on page 2! LOL

[Carole Alexander]

Sharlene, thanks for inquiring about Skippy. I wrote a post a couple of days ago and decided not to post it as I felt that I was being too negative about his situation or better put, mine.

Skippy's pred taper concluded last Friday. He is scheduled to see Dr. Scott-Moncrieff on the 29th; her students have called a couple of times for updates on Skippy since I cancelled his appointment on the 9th of August. There is no plan for follow-up with radiology at Purdue as they have "done what they can do".

Physically, Skippy is the same, i.e., lethargic and mostly sleeping, very hungry, drinking rivers, wobbly and weak in his back legs and refusing to walk except to go out to the bathroom. He continues to sleep on the wood floor in front of a fan even in air conditioning. He is a stealth dog now, does not cry, occasionaly barks and comes to find me if he wants out or fed. He can hear but has lost significant hearing. His nuero functioning is slightly better; he appears to be more present when awake but doesn't seek interaction. He will sit outside and watch the world go by but he no longer jumps, runs, plays or seeks out anything much except food. In reality, except for now being "more present", nothing much has changed since last November.

I have accepted that what is, is. I have no confidence that Purdue has much to offer except Vetoryl and I remain undecided in that regard. I will address removal of the adenoma on his butt as there have been three episodes of bleeding in the past couple of weeks although it doesn't seem to bother him in the slightest. Also, I will explore whether Purdue's water therapy program may be an option to pursue.

I have no regrets about radiation; it was/is his only shot. Maybe a different radiation program or protocol would have led to a better outcome but that's a moot point now. And, as we all know, radiation is not a miracle and Skippy has many issues and illnesses. I am disappointed that Purdue radiology has no interest in Skippy's response (or lack therein) to their treatment protocol. But I guess it is just all in a day's work.

I'll update again after our next journey to Purdue as that may well be our last one.

Carole

[molly muffin]

It's hard not to have those down times, and I hope that you know it's okay to feel frustrated sometimes and you are welcome to talk about those frustrations here among others who can understand how difficult this journey has been.

I wish he was more engaged and I'm not sure how to help that or if it can be helped. At least he isn't going backwards and that is something good.

I wish Purdue was more interested in follow up too, at the very least so they can gauge treatment for all dogs who might be a candidate for radiation. How do you know if something is successful if you don't have an interest in after care results. *sigh*

Carole, you do what you can and hope that it all works out. It is all any of us can do. In this case, Skippy is still there, and while he might never be the skippy of old, it is more than might have been without the radiation. I know you don't regret having radiation done, but I just want to lend you my support.

HUGS

[liltara]

Oh Carole, I am sad to hear that Skippy continues to suffer so greatly.

I have not much more to offer other than comfort and supportive thoughts as you both continue to fight the good fight.

May all of the doggie angels above shine healing light down on you both as you travel this difficult road :( it really does break your heart being with them as they suffer and improve, suffer and improve, suffer and improve - what a roller coaster this terrible disease is.

You are in my thoughts.

[Carole Alexander]

I took Skippy for his follow-up visit at Purdue today. His IMS, Dr. Scott Moncrieff said that essentially I need to come to terms with what I can live with in terms of his quality of life. She feels certain that his lethargy, unwillingness to walk, interact much, play, etc., is related to his Cushing's. But, even with treatment with Vetoryl, this could be the best that he will be. She does think, and I agreed, that it's worth a shot to try him on a low dose (10 mg. BID) to see if it will improve his muscle atrophy, lethargy and unwillingness to interact that are my major concerns. I can live with the PU/PD, thin hair, bloated belly, etc. And, I'm grateful that he has not developed the bevy of other diseases associated with Cushing's. I did raise the issue of putting Skippy down and we had an extended conversation about "the end" for Cushing's dogs with a macro. She said that most often it's an owner decision because of nuerological issues and/or Cushing's related disorders, e.g., pancreatistis, liver or kidney failure, etc.

Skippy was not stimmed today and she doesn't plan to stim him again in a few weeks. We know he has Cushing's and her goal is not to get his cortisol under control but to see if we can improve his quality of life with a very small dose of Vetoryl. (Remember Skippy couldn't tolerate Vetoryl last winter.) Purdue did run a chem test to check his kidney values as the number was 100 in June, but I don't have the results.

I bathed Skippy before taking him to Purdue today and the adenoma on his butt bled again and continued to bleed modestly through our visit. They cleaned the adenoma and Dr. Scott-Moncrieff thought I should wait to see whether the Vetoryl might reduce the tumor, sex hormone related, before taking any further action. Her concern about the local vet removing it is that a slip of the knife by a less skilled doctor could leave Skippy incontinent.

How do I feel about all of this? Not great. I was on the edge of or in tears for most of his time there. I do understand that I need to come to terms with what I can live with. Skippy is not in pain and he doesn't have a vast array of Cushing's related issues that so many others struggle with. His nuerological symptoms are improved. Maybe he and I are fortunate. While at Purdue today, three or four people commented, in passing, about how cute he is. From a distance, he does look quite normal.

A funny final note. After Skippy let loose with pee along Purdue's hall way at the end of our visit, Dr. Scott-Moncrieff came strolling by. I asked her about water therapy for Skippy. She initially thought I was asking about water torture. I said "no" that's for me to alter my current state of mind. She suggested that I take him to the river since he used to love to swim. She thought a change of scenery would be good for both of us. To be continued...

[DoxieMama]

Hugs for you and ear scritches for your cute little guy.

[molly muffin]

Big hugs! I had a laugh about the water torture comment.

The river might be a good idea, you'd be right with him, as not sure how strong he is and wouldn't want him to get into trouble with swimming. Would he engage with a puppy pool in the yard? (kid pool basically) He's small enough he might be able to try to swim in it.

It isn't easy going through this and you've been such a trooper, you and skippy both.

I think quality of life is most important, so maybe it would help to try a small dose of vetroyl. But I would want to know what his stim is first, that's just me, I like to know the numbers so I can see what the changes are numerically in addition to what I see happening, as for myself, I was always too close to mollys issues to feel like I could determine things by sight alone. I think that might have just been me though.

[Carole Alexander]

I am very appreciative of everyone's support regarding Skippy's saga. Your kindness is touching and I'm grateful.

While I still don’t have the numbers, the student intern did call with a Skippy follow-up:
• Liver: okay, no dramatic change. Keep him on the Denamarin.
• Kidneys: Proteinuria improved from June.
• Aspirated nodule on rear leg for the third time. They are not concerned about lymphoma any longer. Too many red blood cells in the draw but Skippy is not anemic.

On the 29th I started Skippy on a Vetoryl dose of 10mg. BID. Dr. Scott-Moncrieff’s thinking is as follows: Skippy clearly continues to have Cushing’s. He has multiple symptoms. I will not see any improvement in his quality of life unless I treat. Yes, it is standard protocol to treat Cushing’s after radiation with Vetoryl or Lysodren. The reason for the low dose is his intolerance of the drug before radiation. If I understand, her goal is not to necessarily lower Skippy’s cortisol so that he is under control in accord with the Drecha protocol, but rather to see if lowering his cortisol will improve his quality of life if he can tolerate it. Thus, no stim test on the 29th and no two week stim. He goes back to Purdue on September 26th and they will decide whether to stim him then, unless he show’s intolerance before that. If so, I will stop the Vetoryl.

After five days on Vetoryl, he has improved, in some respects. He is brighter, much more alert and is now willing to take short walks. He has become a little picky about his food, declines treats and sometimes kibble, but generally is eating well and he could sure afford to lose a few lbs. I believe that his hearing is improving but that is likely coincidental. His stool is now soft and today I saw a little tremoring in his rear end. His hind legs are still pretty weak and he struggles to get up and often thumps down. He sleeps well, no panting and a little less PU/PD although his urine remains clear.

From a practical standpoint, the biggest problem of the week is Skippy is experiencing spontaneous bleeding from the perianal adenoma. It’s not profuse bleeding but continuing intermittently after Purdue cleansed it on Tuesday. It’s a mess and I’m applying triple antibiotic cream but it’s not doing much. Dr. Scott-Moncrieff said let’s wait and see if the Vetoryl might shrink the tumor. But I suspect she may have said let’s wait and see because the surgery is expensive and I expressed reservations about affording it in light of Skippy's tenuous hold on life. And, he’s had the adenoma since last December. I asked her about the local vet removing it and she was not in favor of that strategy. I sent her an email today saying that unless she has some confidence that Vetoryl could shrink the thing, Purdue needs to remove it. (I read somewhere that Lysodren might shrink it, but I can’t find anything to suggest that Vetoryl would.)

Either because of my emotional state about Skippy or because Dr. Scott-Moncrieff thinks his death is imminent, Purdue comped my last visit and his meds, including Vetoryl. While I am embarrassed to be such a wimp, this has become a long slog indeed. I am very grateful to Dr. Scott-Moncrieff for her compassion, skill and knowedge.

If anyone has heard of Vetoryl shrinking a perianal adenoma, please let me know. I have not searched this forum but I will. For anyone wondering, this is a relatively rare tumor near the anus, usually benign, that is caused by overproduction of sex hormones. Most often it afflicts intact dogs; Skippy is castrated.

[flynnandian]

my intact cush dog flynn [border collie] had one. it was bleeding on and off indeed.
i had the adenoma removed.
it is not a difficult operation and it was inexpensive.
vetoryl did not shrink it. and cream didn't help either
flynn was long haired, so it was a real mess.
my local vet did the surgery using local anaestetic and a seditive.
no big deal at all. keep the stool a bit softer for a few days.
don't let purdue talk you into expensive surgery.
skippy will feel a lot better after removing the adenoma.

[Carole Alexander]

Thanks so much for the feedback on the perianal tumor. My local vet felt confident that she could remove it for a fourth of the cost of Purdue surgeon and that it is not a big deal. I haven't heard back from Purdue but the tumor remains a mess. I wonder if they don't want to mess with it since he just started Vetoryl ten days ago.

This round, and for however long, Vetoryl is definitely helping Skippy. PU/PD is hugely better; appetite has diminished but no discernible change in belly, hair, etc. The change that I care most about is Skippy is beginning to show signs that he wants to live. He is walking much more, actually trotted yesterday. A tiny bit of tremoring but his rear legs are stronger. I know he will never be the Skippy of even a year ago. I'm still not seeing a wagging tail and he remains somewhat aloof but attentive. My decision to put him back on Vetoryl was yet again made out of no good options. Skippy has no long haul so whatever I can do now to try to help him will have to be good enough.

I will have a stim test done when he goes back to Purdue at the end of the month. Next week, I am flying to Maryland for ten days and Skippy will remain here in Indiana but I will check on him daily. I will deal with the butt tumor upon return. In the meantime and on behalf of my friend with whom we are living, I have another question. Skippy has horrible, stinky gas, frequently. I did change his food to low fat Wellness Core kibble about ten days ago when he started the Vetoryl. My friend's dog is eating the identical diet with no gas. Skippy usually gets chicken breast or beef mixed in with his kibble. If others have experienced this problem or have a clue what I can do, please let me know. His stool is soft but not diarrhea. Thanks so much.

Carole

[Joan2517]

Lena had terrible gas, Carole. You could hear and feel it, not to mention the smell! I couldn't figure out if it was the Vetoryl or the soft dog food I was giving her to make sure the pill was fully absorbed since she wouldn't eat the kibble anymore.

We got used to it!

[Carole Alexander]

Thanks Joan, just another example of your enduring love for Lena. I may be able to tolerate it; not so sure about my friend who will be his caretaker for ten days! This may have started before he went back on Vetoryl but clearly it is worse now. Maybe more frequent trips to the bathroom will help. Best,
Carole

[DoxieMama]

I am glad that Skippy is doing okay on the Vetoryl! I hope he continues to... poor little guy has been through so much. Unfortunately I don't have any suggestions for the gas, though feel for you (and your friend). I have a rather pathetic olfactory system so those things don't usually bother me... but my husband must bear it and I hear about it!