Macroadenomas

[ktzndgs]

My most important point here is that the longer you wait to diagnose a macroadenoma, the less likely you are to be to be able to treat it. My goal here is to encourage you to get a full diagnosis before you go too far. Cushing's and macro's can be managed if you treat the right problem at the right time.

When Macy was sick I tried so hard to track down information about Cushings and macroadenomas but this tumor causes so much stress to us as owners I just couldn't read through everything to find the pertinent info. I finally found there is a place on this site with some macroadenoma information . Here's the link....

http://www.k9cushings.com/forum/showthread.php?t=229

Vets will tell you that a pituitary tumor isn't a macroadenoma until it reaches 1 cm but one of the doctors I've read recently said that a dog's tumor should be considered a macroadenoma when it can be seen on ct scan or mri or when it's 8mm. That's very important because a dog's head is so much smaller than a human's head. In the past a dog's tumor wasn't considered macro until it reached the size of a human macroadenoma - 1cm. They suspect that up to 75% of dogs with a tumor that can be see on ct or mri will end up with macroadenoma's so early screening once the dog is diagnosed with Cushing's is incredibly important. Based on the size of Macy's macroadenoma it was already a macroadenoma when she was diagnosed with cushings! It sounds to me as though the reason they're not caught is that the dogs normally get this later in life and the symptoms are mistaken for dementia among other things. I was told Macy was developing dementia even though she was just 7 years old at the time. :(

Another pet owner with a dog who had Dr. Bruyette's surgery said Dr. Bruyette recommends an mri as soon as a dog is diagnosed with Cushing's in order to check the size of the tumor. Apparently early mri's are also done in some areas in Europe. Doing an early mri would have saved me a lot of money and I really wish it had been done for Macy. I can't help thinking that we would have done radiation immediately and Macy might still be with us. I also would not have spent so much money on vet visits and unnecessary tests and medication while we chased after the symptoms nobody seemed to recognize.

One of the first threads I finally found was by Gina about her dog LucyGoo. I wish I'd found them sooner as they shared some of the same weird symptoms and would have pointed me in a direction. I'm learning there are symptoms are common to macroadenomas.

Macy experienced the following......
- diagnosis with Cushing's took almost a year and symptoms included panting, extreme water consumption, inappropriate urination, hair loss, dull coat, mental dullness, increased appetite
- even before the Cushing's diagnosis she stopped eating favorite foods
- UTI's
- choleseterol went up
- white count went off

After Cushing's diagnosis but before macroadenoma diagnosis.....
- trilostane only worked *well* when the dose was kept low.
- she lost the ability to perform previously well executed tasks
- personality changed in barely perceptible ways
- developed muscle twitching
- repeated vaginitis
- lost interest in things she loved
- developed the tendency to arch her back "like a cat" as Gina described Lucy did.
- stopped lifting her head
- paced (or circled as some call it) relentlessly
- periodic foot drag
- intermittent neck involvement
- became anorexic
- trilostane/Vetoryl eventually caused vomiting
- displayed weakness in all four legs

When Macy became anorexic 9 months after being diagnosed with and treated for Cushing's I finally stopped giving it to her. That's when her general practice vet and I decided it was time to have an mri done to determine whether the stiffness we were seeing was her spine or caused by her illness. We also decided at that time to forego the full spine mri and look only at her neck and brain in order to see the tumor. I had finally reached the point where I had to see the tumor and know how big it was.

The first feedback I got about the tumor was that is was so small they could barely see it. A few weeks later my husband insisted on seeing the full report so I picked it up at the vet's office and was horrified. It clearly said Macy had a large tumor. The short story is that Macy's tumor was so large it was referred to as "giant". One option was radiation which would reduce the tumor by 30% and give us maybe another year with her. At a 30% reduction it would still have been a macroadenoma which means she would still feel sick. Eventually we stumbled on the surgical option.

At first I thought they did the same surgery on Lucygoo & Macy but Lucygoo's surgery was VITOM while Macy's surgery was done by the veterinarian from Holland who goes in through the roof of the mouth. While Lucy survived Macy only survived the surgery. She was allowed to return home too soon and the stress of that was too much for her and she died the day she came home.

Macy's surgery was Tuesday, she was released to wards on Thursday and released from the hospital Friday. Friday was the first time I'd spent any significant time with her and it was absolutely horrible. Her stress level was thru the roof. I'd never seen her walk before and as I recall she had a once sided shuffle indicating to me that she'd had a stroke but I thought I'd get time at home to see the real Macy. She didn't live long enough. We were sent home with her for a drive of several hours. She was so stressed by the time we got home she never recovered.

I've spoken to the vets about allowing owners to spend as many hours as possible with the dogs IN THE HOSPITAL to see what they're dealing with and learn how to cope after such huge surgeries. What's normal???? Also, it's very feasible to skype (or something) so that the vets can see what's going on at home at 10pm when you call them. We should have done that. Finally, Macy should not have been released to me on Friday. She just was not ready. At best I should have stayed near the hospital with her rather than bringing her home but hindsight is 20/20. I was not familiar with her new stress reaction to life. I was not able to comfort her. She barely knew I existed. I didn't realize how little she ate in the hospital. She did not have a normal appetite at all.

The surgery that was done to Macy caused a very raspy throat. I don't know if VITOM surgery does the same. I'd love to know how long most dogs who have VITOM surgery are hospitalized after surgery. I do know that in comparing notes with Gina she definitely said Lucy was in the hospital a lot longer than Macy so the price tag on the surgery had to be quite a bit higher than the $9k we were billed. Then again, with all of Lucy's hospitalization she also survived.

At one point I really wanted this surgery to work but now I know it's more important for owners to understand early diagnosis is key! I also want owners to be very aware of the symptoms of the tumor and not put off an mri. A small tumor is much easier to remove than a large one and an mri to confirm a problem is a lot less expensive than treating for a wide variety of symptoms.

At this point I won't be returning to the the k9 Cushings group very often as it's still emotionally very draining for me and this post covers most of what I have to offer. I do hope other's with macro dogs will join in and provide information about the symptoms their dog showed. It might help someone else.

Kathy

[EmCHammer]

Hello there

My 5 year old staffie x was diagnsed with a macroadenoma in December last year. He did not have any signs of cushings and the 3 vets he is under the care of now (normal vets, spinal vets and oncology vets) all believe he hasn't got cushings.

In September last year my mum who doesn't see him that often noticed him often sitting and starign off into space. Her 11 year old arthritic dog often seemed more energetic too.

When I got back the staring became more apparent and he seemed to become very lethargic and loose his zest for life. He also started to have a problem climbing the stairs. On walks he would often stop and refuse to walk and want to take the shortest route home although he was always keen to go out. He also stopped playing with my other dog, they used to wrestle for hours. He had been slightly dog aggressive before (ok if left alone or with sensible dogs) but he became very good with other dogs, which improved after hsi treatment.

I took him to the vets; he used to be a typical bouncy nutty staffy type and they instantly could see how subdued he was - they know him as he is regularly there due to an accident he had before.

He has brain lesions and nerve damage from a serious accident he had when he was younger so wasnt' sure how much was from that .... was always advised he may have problems in the future from these.

He has always had a slight tremour in his back leg at times and scuffing/ weakness of paws/legs on left side for years.

The vets said they would try the simple things first, so he had a course of painkillers, a course of vivitonin to see if it was senile related from his earlier accident, and full bloods.

He then had x-rays of all his spine and head, which showed nothing and then MRI.

He had the MRI in december.... his diagnosis was quite quick I think having head and spine injuries made the vets take it seriously.

In the week before his x-rays he went down hill alot, became very weak and would lean on me and fall over if I moved, had problems standing, refused to walk and try to run home and a couple of times I found him stuck in a corner in the spare room crying.

He went onto steriods which made an amazing difference until he could start his treatment.

HIs adenoma was 1.5cm; also at the time the mri showed he had had a spinal mini-stroke at the same time which really wasn't helping matters either and making him be all weak and wobbly.

They don't do surgery in this country; so radiation was the only option which they said was pallative rather than curative; would shrink the tumour rather than completely 'kill it'.

They didn't say what it would shrink back to; and that a year is agood result after radiotherapy and 15 months is excellent (its been 8 months) ; I spoke to someone else whose dog had the same and they said dogs had lived for much longer afterwards; my regime was once a week for 5 weeks, theres was the dog went in and stayed at the vets hosptial for a shorter more intense period.

He as been fine since, had a funny turn about 2 months ago went very drunk and wobbly couldn't stand up was staggering about, was with it ... vets recon some kind of mini stroke or mini fit.

He is like a different dog now, very quiet and mature and he isn't nutty like he was before. He used to be ball mad but likes carrying round cuddly toys now, he never plays really with our other dog they would wrestle for hours and he used tobe slightly dog aggressive and he isn't at all now. (Alot of this started before the radiotherapy) He is still really food obsessed which he was before but is much worse now.

On a walk there is a part of the walk where there is often dropped food and he refuses to walk in any other direction apart from where this part of the park is, if you get in the park and try to turn right he refuses to walk etc.

We were going to mri him again when he had the turn, but he was better the next day so we are going to wait to see if happens again and then do it.

I am in england btw.

[ChristyA]

My boxer, Dexter, passed due to complications from a macroadenoma. I told the vet he had it after doing research and observing his symptoms. He was diagnosed with Cushing's and it was under control. Dogs with a brachycephalic head are more prone to develop this condition faster than non-brachycephalic headed dogs,,if that makes sense. Boxers, staffys, Lhasas, Bostons, Frenchies = brachycephalic. They don't have as much room in their heads due to the shape than say a shepherd, lab, dobe, etc..
Christy

[ktzndgs]

Hi Christy. So sorry to hear about Dexter. Can you tell us exactly what the symptoms were that you saw? I found it really difficult to get my vets to pay attention to Macy's symptoms and connect them with the macro. I hope to help other dog owners if we can help them be aware of what symptoms we all saw.

Kathy

[frijole]

Kathy, I am sorry about the problems you had. While my dog didn't have a macro, she has a pheo (adrenal tumor) and I too had problems illustrating/conveying what was going on with my vet. I ended up videoing the episodes. That helped a great deal. Hugs, Kim

[ktzndgs]

Video is a great idea! Thanks!

Given the numbers of vets who saw Macy it amazes me that they never connected the dots. She had a long list of unexplained symptoms but nobody else ever looked at the items on the list as being related.

Kathy

[labblab]

Kathy, I applaud your effort to provide information to our members about macroadenomas! Like you, I suspect that they may actually be more common than was previously thought. I know you have been interested in hearing more about my own Cushpup, Barkis, who we assume had developed a macrotumor at the time that we lost him. However, his pituitary gland was never imaged so I cannot tell you with certainty that an enlarging tumor was the cause of his problems. However, I am very willing to share our experience, regardless.

Barkis was diagnosed with Cushing's eight years ago at the age of nine. Like many dogs, he had slowly exhibited an increasing set of symptoms over time that finally "came together" in support of a classic profile: hair loss on his haunches and sides, panting, increased thirst/urination, ravenous appetite, hindleg muscle wasting, low T-4 and elevated liver enzymes. In conjunction with the symptom profile, he was diagnosed on the basis of a "positive" ACTH and bilaterally enlarged adrenal glands on ultrasound.

At the time of diagnosis, trilostane was just being introduced in the U.S. I had already heard about it through the original EZBoard Cushing's forum that preceded k9cushings.com. My IMS had attended international conferences in which it was being discussed, and he was interested in trying it. I jumped on board and we agreed that Barkis would be his first trilostane patient. At that time, there was still a lot of uncertainty and variation in dosing protocols. Barkis started out and also ended up on a much higher dose of trilostane than would be currently advised. But for approx. six months, he generally did well on the trilostane and we saw a great deal of improvement. In fact, we saw improvement in his thirst and hunger within just a couple of days of starting treatment. However, even on the high doses of trilostane, his post-ACTH results were never lower than around 6.0 ug/dl or so.

I say that "generally" he did well. There was one significant exception. Even prior to beginning the trilostane, I noticed some odd tremoring episodes. Sometimes when I held him, it seemed as though he was shivering across his shoulders. It wasn't constant, just once in a great while. Within a couple of weeks after starting the trilostane, the tremoring episodes became much more frequent and much more pronounced. They happened most often when he was at rest -- laying down or even asleep. They didn't seem to bother him at all, but they totally freaked me out. A basic neurological exam didn't reveal any explanation, and we didn't get the chance to videotape them before they stopped just about as abruptly as they had begun. To this day, I do not know what caused them or whether or not they were related to his pituitary tumor.

Everything proceeded well for a few more months. But I started noticing some subtle changes and some not-so-subtle changes. He just seemed a bit "off" and not as perky. More importantly, he started to lose his appetite. Unfortunately, these changes occured while he and I were out-of-state, away from home and staying with my mom in the aftermath of her having suffered a major heart attack. So I was very stressed and my attention was divided between the two of them. During the month that I was away from home, we stopped Barkis' trilostane and then restarted it at a lower dosage. He seemed a bit better, but I still knew that something was wrong. By the time we returned home, I knew something was VERY wrong. His ACTH was fine, however, as was all his other labwork. So my IMS suggested that an enlarging tumor might be the source of the problems, and that a CT or MRI would be required in order to know for certain. If we were to go that route, we wanted to take him to the Auburn vet school because they had a fine reputation re: radiation therapy. But that meant driving him to Alabama. While we were debating the imaging, Barkis went into a swift decline:

Acted distant and dazed, as though "he" was leaving us;
Was very restless;
Started pacing endlessly through the house;
Started relieving himself in the house and in the car;
Lost his balance and coordination.

The crisis came suddenly when he stopped eating and drinking entirely. We had stopped the trilostane by that time, and again his cortisol level/labwork was fine. The hardest part was that he acted thirsty and would walk over to his bowl and lower his head and try to lap up water. But his tongue just wouldn't make contact with the bowl -- it was as though he had lost the ability to understand how to coordinate his mouth. It was awful, and that was when we said, no more. Our IMS thought it still might be possible to buy him some quality time with radiation therapy. But for a variety of reasons, we decided against it. At that time, the only option was a month-long course of twelve treatments all requiring general anesthesia. We instead made the decision to release him from his tired, sick body.

Without the imaging, I will always be left with questions. And that part is hard. Even though all his symptoms pointed in that direction, we do not know for certain that his tumor was enlarging. However, since we decided we were not going to opt for radiation therapy regardless, at the time there seemed little point in subjecting him to imaging precedures at a great expense on so many levels.

And even now, I cannot say that I, personally, would go so far as to recommend initial CT or MRI screening for all dogs who are diagnosed with pituitary Cushing's. For an owner who would have the means and ability to pursue treatment for a macroadenoma (either radiation or surgery), then a screening image could be very helpful. But for many folks, finding the money for the basic diagnostic tests and medication is such a stretch in and of itself. And if the pet parent feels as though they would not be able to pursue treatment in the event that a macrotumor is identified, then the imaging may not be serving a useful purpose unless the dog develops symptoms that make a macrotumor seem likely and the owners decide they want confirmation of the problem. But that is just my personal opinion, and of course I am influenced by the decisions that we made about Barkis.

Kathy, I see that I have written a book here -- probably more than you ever wanted to know! But I do want to tell you that my heart resonates with you over your loss of Macy. And I think you are doing her a grand honor by wanting to help other dogs and parents who may be facing a macrotumor. In this way, you are continuing to celebrate her spirit and her bravery ~ today and everyday.

Marianne

[Roxee's Dad]

Kathy and Marianne, Thank you so much for posting this.

That pretty much describes what we went through with Roxee. The lack of muscle control in her hind legs, it was as if she knew there was something wrong. She would use her nose to try to lift her hind legs. She lost her sight, her hearing, and in the end she could not find her water or food although they were put right under her nose. Hand feeding became the only way we could sustain her.

Roxee was on Trilostane and was well controlled symptom wise. (Appetite, thirst, and her hair was growing back )

Without the CT scan, we also will never know for sure but all the vets we have seen pretty much all agreed that it was neuro related and most probably due to her pit based cushings. It started about a year earlier when a vet discovered she has lost feeling and control of a part of her mouth. We knew she was tired of fighting the fight, and the weekly vet visits.... In the end we had to make that decision. I do hope someday soon that pituitary tumor removal will become a readily available safe and viable option.

[ktzndgs]

Hi Marianne.

Thanks for posting. It sounds like you guys really went thru a lot before the final decision to release Barkis from his pain. How I wish none of them ever had to experience that.

I appreciate all you posted. I think outlining your experience the way you did will be very helpful to others who read it. I just hope we can help other dogs early in the disease.

Were the tremor episodes you saw confined to a limb or did they involve his torso as well? Macy developed leg tremors and I think I recall Gina saying Lucy also had tremors. I discussed that with the vets but they didn't relate them to the tumor or Cushings. As a matter of fact, I discussed them with my regular vet who said he had a client who spent hundreds of dollars seeking a reason for tremors but gave up and the neurologist I took Macy to who helped us find surgery also said he had no idea why those tremors happen. They have to be related to something!

To explain why I support the idea of early MRI.... We were completely backed into a corner when Macy was diagnosed with the macroadenoma. Surgery was our only real option because her tumor was diagnosed so late even though she had been under the care of vets for problems that were related her Cushings for well over a year. Probably more like 18 months of constant vet visits. From the time problems started showing up until we drove her to the hospital for surgery our guess is that we spent over $10,000. That money went out a bit at a time as the hole was dug. $100 here $500 there and the hole kept getting deeper. It took awhile to see what was happening though and before we realized it we were in really deep. If we had seen a specialist earlier and had an MRI the cost would have been about $2,000 to maybe $2,200 (and we're in an expensive part of the country from the costs of vet services I've heard others relate). The specialist plus ultrasound was about $800. The follow up radiation would have been about $3,000 so total expense would have been about $5,000 and Macy would probably still be here because they would have been a lot more successful with reducing the size of her tumor. Even if we had decided not to go forward with radiation we could have made more informed decisions about her care and we would not have pursued treatments for things that didn't exist or continue to search for answers about why things were happening.

With all of that said, I have to point out that we do carry health insurance on our dogs for situations like this. The coverage for Macy still didn't go high enough but it did make a difference in how we moved forward so we weren't in the awful position of every decision being based on what things cost.

Macy had a lot of very good doctors along the way. Even Dr. Oliver tried to help! But everyone was operating in the dark until we did the mri.

You brought up the CT scan and I have a question. I asked about doing a CT scan vs MRI as a diagnostic but the vets didn't seem to like that option. Do you have any idea why? Are veterinary CT Scan facilities hard to find? They did two CT scans in the hospital on Macy. One was done before the surgery and one after so I know they clearly do show the tumor. I would think that if a tumor is suspected CT Scan would be more appropriate. I know there's a worry about the exposure of humans to xray radiation from it but I don't know anything about how that exposure relates to the life expectancy of a dog.

I have to check but I think Dr. McDonnell has done one or two pituitary tumor removals. I'll ask. I can't imagine what it would cost though. I also hope these surgeries will one day be possible *and affordable*!

Kathy

[labblab]

Were the tremor episodes you saw confined to a limb or did they involve his torso as well? Macy developed leg tremors and I think I recall Gina saying Lucy also had tremors. I discussed that with the vets but they didn't relate them to the tumor or Cushings. As a matter of fact, I discussed them with my regular vet who said he had a client who spent hundreds of dollars seeking a reason for tremors but gave up and the neurologist I took Macy to who helped us find surgery also said he had no idea why those tremors happen. They have to be related to something!

Kathy, Barkis' strange tremors were limited to his torso -- he appeared to be "shivering" across his shoulder blades. Prior to treatment, he did have muscle wasting in his rear end which also caused some trembling in his hind legs when he tried to jump or climb stairs. But that looked pretty clearly like muscle weakness and resolved once he had been stabilized on the trilostane. The shoulder tremors were very different and very odd. Especially because they happened most often when he was relaxed or even sleeping (and they weren't the typical twitching that goes along with dreaming).


You brought up the CT scan and I have a question. I asked about doing a CT scan vs MRI as a diagnostic but the vets didn't seem to like that option. Do you have any idea why? Are veterinary CT Scan facilities hard to find? They did two CT scans in the hospital on Macy. One was done before the surgery and one after so I know they clearly do show the tumor. I would think that if a tumor is suspected CT Scan would be more appropriate. I know there's a worry about the exposure of humans to xray radiation from it but I don't know anything about how that exposure relates to the life expectancy of a dog.
I may be wrong about this, so take what I say with a grain of salt. But my understanding at the time was that both a CT scan or MRI would likely have the capacity to reveal the general appearance of the tumor. So if we had only wanted to perform the diagnostic for purposes of confirmation of an enlarged tumor, either image would provide that and a CT would have been cheaper. However, if we wanted to consider radiation therapy, the MRI would have been the preferred imaging process for purposes of visualizing and marking the exact parameters of the tumor for the radiation treatment. The MRI provides a different type of image that is more useful in that regard. And we were told that the vets who would be performing the radiation therapy would probably prefer to do the imaging themselves. That's why we were debating the possible trip to Auburn.

One other comment about clinical signs...I do remember our IMS telling me that he always suspects an enlarging tumor in a Cushpup who stops wanting to eat but who has otherwise been stable on treatment (cortisol level not too low and all other labwork normal). I know that lack of appetite is also listed just as a possible side effect of trilostane itself. But my own thought is that a loss of appetite as a side effect is not so unexpected early on when the cortisol level is first being lowered. But in our case, it emerged several months into treatment when everything else was looking fine. I certainly would have taken Barkis into the IMS much sooner had I been home, and I do believe we would then have had more time to have made a decision about the imaging, since the IMS suspected a macrotumor pretty much from the get-go once we finally did get back home and I described Barkis' behavior.

Marianne

[ktzndgs]

Macy didn't have a serious appetite problem until the end but very early into things starting to show up as being odd she stopped eating favorite foods. She used to sit with me while I prepared my protein fruit shake in the morning and she'd enjoy frozen strawberries or blueberries but those seemed to start to make her nauseous. She'd turn away from them as though they disgusted her. That was when I first started to talking to my vet about something being wrong. I think it was about a year before the cushing's diagnosis and two years before the macroadenoma diagnosis when that started.

Kathy

[Cyn719]

Kathy thank you for sharing your story - My Penny is on trilo and had/has similar problems - when she started the trilo she also shivered thru her shoulder blades and sometimes from her shoulder blades down - also she has like a head tremor - she will be just laying looking around and then her eyelids start to blink very fast - her head jerks a few times and her mouth pulls backs alittle - it last only a few seconds - sometime a couple in a row but way to quick to video tape - she still has an appetite - likes her treats - her drinking is fine - just blew her coat but her legs are weak (she had 2 CCL repairs - and has a injured hock that couldnt be operated on a few years ago) so with the arthritis and the injury and the weaknes from the cushings she is having alot of problems with the walking and climbing - she is only on 10 mg of trilo and she is 82 lbs - but does awful on a high dose - she has stim test tomorrow so we will see where she is at - also lately she has been walking around alot at night like she has a cup of stong coffee - and she like to be downstairs alone alot - she does have a pituatary tumor but we do not know the size - so now I am assuming we need a CT -- I will talk to the vet in the AM - I do believe it is probably getting lager -she was said to of had cushings when she was 7 or 8 but did not need to go on meds till she was 11 - looking at her now I am really second guessing this - we may have missed something - I did have a golden with a brain tumor - he had grand mal seizures - had CT - did radiation but did not help him - thinking of him I do remember he did go off and like to be alone -- if you can comment on anything I mentioned I would appreciate it - thank you again

[EmCHammer]

Kathy, I see that I have written a book here -- probably more than you ever wanted to know! But I do want to tell you that my heart resonates with you over your loss of Macy. And I think you are doing her a grand honor by wanting to help other dogs and parents who may be facing a macrotumor. In this way, you are continuing to celebrate her spirit and her bravery ~ today and everyday.



I echo this; as someone with a dog who has a macroadenoma who is currently doing OK after radiotherapy I did so much reading online, but there was alot of difference in things like life expectancy and some symptoms, that it really helps to speak to real people with real experiences.

My boy is now 9 months after radio therapy and I have heard that 1 year is a good life expectancy, 15 months is brilliant; someone else (the only other person I had known who had a young dog with a macroadenoma had said thir vet college had said a couple of years was good).

One of the symptoms which I never linked for ages was my dog hated climbing the stairs - but he seemed to have problems co-ordinating from his accident so I never twigged with that one.

He also has tremors, mainly on his back leg; but again he has had these for years and have always associated them with his accident.

We seemed to get a diagnosis very quickly, within about 4 weeks from me starting to get concerned about his symptoms; but as he already had brain damage and spine damage the vets were quicker to react to a potentially more serious problem? Also as he is a dog they know very well and was nutty they could see how much he had changed in personality... an older dog may in the first instance be attributed to other symptoms related to dementia?

[ktzndgs]

Don't second guess yourself. Once we believe something is wrong we can only go forward from there. We have to rely on the vets to add up the symptoms and figure out what they mean. Cindy it sounds like Penny's case is very complicated and you've got a good list of symptoms to discuss with your vet. I'm concerned about her walking around a lot at night.

Since the brain is involved in macroadenomas it's hard to say whether some of the other things are pituiitary tumor related or side effects of her accident but I'd consider a CT scan or MRI.

You mention that she doesn't do well on too much trilo. Can you explain what you mean? What does too much do to her? I'm asking because too much trilo would make Macy sick. At first too much just left her completely lethargic. Later it killed her appetite completely.

Kathy

[ktzndgs]

My boy is now 9 months after radio therapy and I have heard that 1 year is a good life expectancy, 15 months is brilliant; someone else (the only other person I had known who had a young dog with a macroadenoma had said thir vet college had said a couple of years was good).

One of the symptoms which I never linked for ages was my dog hated climbing the stairs - but he seemed to have problems co-ordinating from his accident so I never twigged with that one.

He also has tremors, mainly on his back leg; but again he has had these for years and have always associated them with his accident.



Wow! Congrats on the 9 months! If you did radiation you must know how big the tumor was. The vets do even if you don't. Would you let us know? Just for reference sake so folks know how big it was when you started radiation. I've heard of some dogs having a very nice number of years after radiation so keep that thought.

His weakness climbing stairs might well be from his accident so it might not be related. If it was new that would be different.

Kathy

[ktzndgs]

Kathy, I am sorry about the problems you had. While my dog didn't have a macro, she has a pheo (adrenal tumor) and I too had problems illustrating/conveying what was going on with my vet. I ended up videoing the episodes. That helped a great deal. Hugs, Kim

Kim,

I just reread this and wanted to respond. I got enormously frustrated with going from vet to vet to try to get a diagnosis for Macy. What I ended up thinking was that if the records had been kept differently Macy might have been diagnosed earlier. If there had been a column with a list of symptoms in it that were ticked off as they were satisfactorily explained I think the vets would have seen that there was an accumulation of symptoms that were not being ticked off that were adding up? Does that make any sense?

I discussed this with Dr. McDonnell and hope to get the chance to talk to him about it again. Vets have enough to deal with in trying to read the minds of their patients who, try tho they do, don't speak! I think if the charts were easier to read it would help.

Kathy

[EmCHammer]

Just a quick reply but I know from when thevets showed us the MRI they said was 1.5 cm . He went onto steroids before radiotherapy which can shrink it he was like a newdog overnight was amazing.

[ktzndgs]

Well that's good news! While it was a macroadenoma it wasn't huge! :))

I don't have any knowledge of how much radiation can shrink a tumor but they said I'd get another year with Macy but her tumor was way bigger than that! Has predinsone been prescribed at any point to shrink the tumor before treatment? Would you mind relating how the radiation treatments went? Were they difficult for your dog?

Kathy

[StarDeb55]

Kathy, I'm not sure if you've seen this member's thread about her Tessie. Tessie underwent successful radiation treatment for a macro around 2 years ago.

http://www.k9cushings.com/forum/showthread.php?t=894

Debbie

[EmCHammer]

He went onto steriods beforehand, we didn't knwo what was wrong with him he had all the behaviour changes but on a thursday he went downhill, crying not settling, getting stuck in the spare room corner.

He was due in at the vets on the monday for x-rays (which if showed nothing the mri was the next step). on the friday he was much worse and was having problems standing up so took him to my vets.

She was worried about him but as he was booked in on the monday anyway for the x-rays and she knew was something to do either with his neck/spine injury or head (as mentioned he already had some brain lesions from his accident) she gave him a steriod injection to see if it would help, and then a two week course of steriods.

He was like a different dog the next day bouncing off the walls.

The steriods were obviously working to shrink the tumour, but he was given them not necessarily for that purpose at the time.

The Xrays showed nothing, so on the friday h e went for his MRI, then started radiotherapy about 2-3 weeks later.

He started off on 20mg twice a day (or was it once a day?) then down to 10mg and then maintained on 5mg a day (he weighs about 19kg) which we tailed off when he was undergoing the radiotherapy at the oncologists advice.

He didn't seem to have any side effects from the radiotherapy at all; he was on limited excercise as he had had a spinal mini stroke diagnosed at the same time as his tumour, vet said 10 mins lead walk twice a day but he was unbearably hyper on that! so we did do a little more.

He went once a week every week for 5 weeks and can't recall any change in him.

The only thing we had was about six months after it had finished he had a funny turn, was like he was drunk he couldn't stand or co-ordinate, was light sensitive and was sick - lasted an evening and right as rain the next day - vets thought might have been a mini-stroke they didn't think was vestibular.

I can easily see how his symptoms could be passed off for something else in an older dog; I think because he has a chequered medical history and is a young dog they acted quite quickly in realising something was wrong.

[ktzndgs]

He went once a week every week for 5 weeks and can't recall any change in him.

The only thing we had was about six months after it had finished he had a funny turn, was like he was drunk he couldn't stand or co-ordinate, was light sensitive and was sick - lasted an evening and right as rain the next day - vets thought might have been a mini-stroke they didn't think was vestibular.

I can easily see how his symptoms could be passed off for something else in an older dog; I think because he has a chequered medical history and is a young dog they acted quite quickly in realising something was wrong.

Once a week for 5 weeks isn't too bad but I assume it's because his tumor was a reasonable size. They gave Macy pred too but for some reason they only gave her a low dose. I don't know why. Will have to add that to the list of things I want to ask about.

Kathy

[Cyn719]

Hi i am Pennys mom - Penny had a really bad couple of day - they put in front of me should we give Penny a few days to see how she does and the make the decision uggg - Penny has many problems - lower lumbar spurs - burs - curving - lots of pain - her liver very enlarged and very round - also thinks her pit tumor has enlarged cause pressure - she is on trilo for cushings - she likes to be alone now - like to be in a secure space - and little episodes when on high doses of trilo eyelids blinking fast with head jerk - lasting only 2 - 3 seconds - better since on lower dose - when laying she keeps kicking out her back legs and grones alot - the other nite new thing she sticks her tongue like a snake - licks her chops - yawns alot - and sometimes looks like shes going to yawn but just opens her mouth alittle - also when whe was laying in front of the door she keep pushing and pushing her body into it lie to get closer - so this is from the tumor? I said to the vet is she suffering - she said from all three isssure she is in pain - so I said you speaking of putting her to sleep - she said if she is not better in 4 days or so you have to decide - I am so confused - I dont want to let go yet - now today she is outside -barking at people - when I came home she was doing her song and dance - she is eating - still alittle with the tongue thing and drinking alot - also she has this bad turn after not taking Rimadyl for 3 days - I ran out figured give her alittle break - It was for her hips and this kicked in - vet said the little bit of anti inflamatory was prob just keeping her ok - so back on Rimadyl and tramadol at nite -- any help would be so appreciated - Cyn719 Thank you so much!!

[Cyn719]

I did forget to ask do pennys symptoms relate to a marco?

[ktzndgs]

Hi. I'm so sorry to hear Penny is so sick. It sounds as though she's really dealing with a lot. The symptoms you mention don't match what I saw in Macy but a pituitary macroadenoma does put pressure on the brain so I'd guess it can produce a lot of different symptoms. You'd have to do something like a ct scan to determine if the tumor is causing all of this. Is she well enough to withstand diagnostics?

If I recall correctly the liver does get involved with this disease. Have you (or can you) try prednisone? I'm not sure if you can when the liver is enlarged.

I hope you're able to make her comfortable. Let us know how things are going. You've got a tough decision. I wish I could help more. I'll be thinking of you and Penny.

I'm sorry your message went unanswered for a few days. I've been away from the computer. I hope one of the other members will jump in if they have any ideas.

Kathy

[Cyn719]

Thank you Kathy -- Penny is actually doing better - the other day I thought that was it today she is good?? This disease will drive you crazy!! Shes better - watching her - off the vetroyl for now - just getting her back on her feet - the only weird symptom is she always seems to be stretching her jaw -like opening her mouth to yawn but only half way? just opens mouth and stretches low jaw forward??? but shes eating - drinking - walking better soo??? Day by day :)

[ktzndgs]

Cindy,

If Penny does indeed have a macroadenoma remember the pituitary is just at the base of the brain and it probably causes pain. Macy's neurologist said that at the very least she had a massive headache. Penny's jaw stretching might bring relief from the pressure. I had to take Macy off Vetoryl too but I never fully understood why. Since Cushings causes excess cortisol I guess that also eases discomfort so taking them off it helps. Marianne is that right? Before surgery Macy was not only not taking Vetoryl they put her on prednisone to reduce the tumor.

Kathy

[kapohotricia]

Marianne,

I am so sorry for your loss of Barkis. I just re-read your note here with new eyes because you could have been describing Kirby and I may have to make the same decision soon. Even the tremors are exactly as you described. He actually stopped eating on Monday, going to the bowl but not being able to eat, as you noticed. By Monday afternoon he was being examined at our wonderful vet's, given a "lomi lomi" massage by a dear Hawaiian assistant on one end and kisses from the vet on the other. Finding nothing else wrong to explain the inability to work his tongue, she gave him a small bowl of Hills a/d in warm water, raised to his head and he was able to get a little in. After several more attempts at home, he was able to eat again within another day or so and his tongue now responds as long as his bowl is elevated. Today we started L-deprenyl = selegiline, brand name Anipryl with hope that this drug can enable him to function for a little longer. I am trying to find out how that works with Trilostane to treat pups with macroadenomas. Perhaps I am clutching at straws and I noticed you did not mention that as an option for Barkis.
Anyway, I just wanted to verify that another dog is experiencing the same symptons and my vet considers them to be consistent with a likely macro.
With hugs and deep sympathy,
Tricia and Kirby

[Cyn719]

Kathy - as I reread your post Penny does pace (if that is circling) seems to drag her leg but she has a hock injury so hard to tell - digs - sometimes she seems stiff and doesnt want to lift her heard - always lying on her side and groans alot -- so hard to tell with out testing - going to IMS wed hope she can tell me more - she is on a course of Pred now - does have enlarged live ??

[labblab]

Cindy,

If Penny does indeed have a macroadenoma remember the pituitary is just at the base of the brain and it probably causes pain. Macy's neurologist said that at the very least she had a massive headache. Penny's jaw stretching might bring relief from the pressure. I had to take Macy off Vetoryl too but I never fully understood why. Since Cushings causes excess cortisol I guess that also eases discomfort so taking them off it helps. Marianne is that right? Before surgery Macy was not only not taking Vetoryl they put her on prednisone to reduce the tumor.

Kathy
Kathy, I am sorry that I am so late in responding to your question about the combination of Vetoryl and prednisone. I am not sure that I fully understand the ins and outs of macaro treatment myself (or I guess I should say that I am sure that I DON'T fully understand it :o). But even though it may seem counter-intuitive to give a dog both trilostane and prednisone, we've learned from our experience here that it is sometimes recommended. To the best of my understanding, it is for this reason. In situations where a steroid is thought to be helpful, you want it to be dosed in a very consistent and predictable way. That means that for a dog with Cushing's, you need to make sure that the dog's own cortisol level remains under reasonable control as well. Otherwise, the natural cortisol can elevate by leaps and bounds, and you have no idea whether or how much supplemental prednisone to be adding into the mix.

When a macro is involved, I believe that prednisone can be recommended in order to try to control and limit the swelling and inflammation caused by the expanding tumor. But this is why the vets may want to leave the dog on trilostane, as well -- in order to keep the natural cortisol level in check and at a predictable level so that the supplemental prednisone can be dosed appropriately.

Cindy, this is one of the many reasons why I am so anxious for you to get to see the specialist on Wednesday. Because it may actually turn out that Penny would do better on a combination of both her Vetoryl and also some prednisone as well. Penny's situation is really too complicated for us to be able to advise you in this regard, and it will be so good to have an expert on board.

Tricia, I am so sorry to hear about Kirby's ongoing problems. I wll never forget how horrible it felt to watch Barkis trying to drink and refusing to eat!!! As far as the Anipryl, I am guessing that it will only turn out to be helpful for him if his symptoms are indeed being caused by canine cognitive disorder as opposed to a macrotumor. Once again, I am surely no expert and I definitely do not know a lot about Anipryl, but I an unaware of a mechanism by which Anipryl will truly intervene if the symptoms are being caused by an expanding tumor placing pressure on other critical parts of Kirby's brain. Due to Barkis' relatively young age and the pattern of his neurological symptoms, CCD was never offered out as a possible explanation. Having said that, I definitely see no problem with giving Anipryl a try alongside the trilostane. Either the Anipryl will help Kirby or it will not, but I don't believe it will cause any harm. And I am surely hoping that it will help!!!

Marianne

[Cyn719]

Marianne - I know it is confusing - maybe no trilo cause she was doing bad and had no energy?? Pred helped with that alittle by still very laid back and tired - she eats - prob the pred helping - Wed will answer all my questions I hope - cant get here quick enough! Thank you for always being there and offering your advice - it really really means alot!:)

[EmCHammer]

It seems that many of the dogs who have the macros also have cushings wheras they don't think my boy has.

He does have an insatiable appetite and will run off to scavenge but none of the other symptoms ...

The vets didn't think he needed to be tested as didn't have any symptoms. He has really quietened down and is a odd butnot anything to be overly concerned about. he has got brain lesions in addition to his macro tumour don't know what radiotherapy does to the brain.

[JacksonsMom]

Hi Everyone
I've posted on the main Forum that after 3 years of Cushings treatment, those symptoms abated and the vet was puzzled. I sought a second opinion and this new Dr suggested an MRI. I was reluctant as Jackson would have to be sedated and he was so anorexic (4 lbs instead of 6) I was worried he might not survive the MRI. Well he did and I got the results today. The tumor is 1.5 cm and probably causing headaches (he trembles seizure like even when sleeping.) It looked huge compared to the surrounding tissue. My options are: Do nothing (if it weren't for the headaches I would go that route I think)
Radiation: Daily for about a month and he would be sedated each time (cost $8,000)--no cure, buys 1-2 yrs.
Surgery: Using minimally invasive Vitom--here is the link http://www.cedars-sinai.edu/About-Us/News/News-Releases-2010/New-Surgical-Technology-First-Tested-in-Humans-at-Cedars-Sinai-Medical-Center-is-Giving-Fido-a-Second-Chance-Too.aspx
Survival rate is 85% after 2 years (but the sample is small--only 10 dogs) and he would be on thyroid, steroid and hydration meds.
He's 12 years old and I wonder what else might soon go wrong--he has elevated liver enzymes and his adrenals are large--as seen on sonogram. Surgery cost is $8,000. If anyone has any insight, I would love to hear it.
Robin and Jackson

[labblab]

Hi Robin, I'm really glad you've posted this same info on your personal thread about Jackson. I'm going to reply to you there rather than here, so as to make it easier for folks to follow Jackson's entire treatment options/history all in one place. In order to make it easier for everybody to find it, here's a link to your thread:

http://www.k9cushings.com/forum/showthread.php?t=3710

Marianne

[JacksonsMom]

Thank you, that makes sense. Waiting to have a few questions answered by the vet and I'll post on the thread you referenced.
Thanks,
Robin and Jackson

[Bgoods]

I have been posting on Rolo's case on another thread at:

http://www.k9cushings.com/forum/showthread.php?t=3868

Some thoughts reading through this thread. Rolo was diagnosed last week with a macroadenoma. Today, he started radiation for that here at UT. I am sitting in the library at UT waiting to hear from them to go pick the little guy up.

Some information here is slightly different than what others have presented -- so I will offer it as food for thought from the Dr.'s here:

Rolo will have 16 radiation treatments. Starting today and each day this week. Because of holidays and equipment upgrade, next week he will have 3 treatments. Five the following week. Three the last week.

They took him off all Cushing's meds (Trilo) during the treatment.

They said if he develops some edema this week, they would prescribe a low dose of prednisone to counter that. It would likely only be for a few days to specifically counter the edema.

My GP vet thinks that one reason we saw the recent bounce in Rolo was his being prescribed the Prednisone for a respiratory infection/swollen lymphs. From reading in this thread, the combination of Pred and Trilo is not unheard of.

The oncologist quoted a median survival of 1400 days. It is a median. There is a limited study that because of a very large tumor in relation to pituitary/brain size, there is a decreased expectancy. Since Rolo's tumor exceeded the "ideal" size and was quite large (will see if I can get actual measurement this week), we are choosing to ignore that study as only anecdotal at this point.

30% of dogs post-treatment will require no Cushings medications. Giving him a pill or two a day for six or eight years would be fine though!

Tumors are very reactive to radiation. Slow growing and there is essentially no difference between adenoma and carcinoma in treatment behavior.

Today, is the first day of the rest of his life. We cherish every moment of it!

[Lvmtjessie]

Hi, I am new to the forum. I have a shih-tzu named Bart who has cushings and diabetes. Within the past month he has started exhibiting odd behavior. Star gazing, lethargic, his right eye appeared weak. Through this month I feel as if he has been declining. I work in a vet office (I am a licensed veterinary medical technician) and I went to a continuing education conference in Birmingham Alabama ". The conference I choose was on cushings. To my amazement, when the Veterinarian started talking about macroadenomas, she mentioned a lot of symptoms Bart was exhibiting. I mentioned it to the vets where I work and they shrug their shoulders and say; "maybe, but doubt it".

Within the last 2 weeks, Bart has gone blind. On physical exam there is no obvious reason for him being blind. Now ( this is weird) but when I call him, he can hear me, but he cannot distinguish where the sound is coming from. Even being 1 foot in front of me he cannot find me with me calling out his name loudly.

He has been potty trained, but within the past 3-4 weeks, he just lifts his leg and urinates where he stands. I won't lie, I am scared that I am losing my baby. His decline is fast.

I wonder if I should stop the trilostane since it suppresses the cortisol in his body. Maybe the over production of cortisol is what kept the tumor in check. I have not had a CT or MRI done. I am sure this is what he has. I won't treat because of his diabetes. The diabetes will make it hard for him to recover. I have been talking with an associate professor at Texas a&m who specializes in internal medicine and macroadenomas. She is certain that Bart has this.

Has anybody else have one of their dogs experience weird stuff like this?
__________________________________________________

Administrative Note: For anyone who wishes to reply directly to this post with feedback or suggestions, please follow this link to Bart's personal thread:

http://www.k9cushings.com/forum/showthread.php?t=4438

[Maya]

I thought that it was best to post this in here too.
I had been treating Maya with trilostane for about a year when she gradually started to have weird symptoms round about march this year. First it was her appetite-she just went off her food and water. I noticed she had an unusual expression on her face-a kind of dreamy look.....almost vacant. One side of her face looked slightly different. Her left eye seemed to bulge out a bit and later I realized that she couldn't see out of it. I would go to poke her in it (just testing, obviously) and she wouldn't even flinch. She started to circle and pace aimlessly throughout the house, especially at night and she would pant heavily. She seemed disorientated. She would pee constantly everywhere and anywhere. She started to lose her balance, crash into things, miscalculate corners, doors. She would stagger all over the place as if she were drunk I could see that at times she wanted to eat and drink, but she was not able. It was like her tongue didn't work anymore. I'd give her a biscuit and she's just hold it in her mouth and slobber before just letting it fall out onto the floor. She would try to drink but her tongue wouldn't reach the water. She drools a lot. I had to hand feed her and hold the water bowl right up to her mouth which helped a little, but her water intake was almost zero.She had this weird kind of shivering across her shoulder blades-kind of like a cringing. Her condition worsened and she became very weak and lethargic to the point were she actually collapsed and was totally out of it. She had a very slow heart beat. All this had been going on for a couple of months and during that time we had taken her to the vets countless times. We had had blood work done and 3 ACTH tests all of which were fine, except for her liver levels and cholesterol. We stopped and restarted her trilostane two or three times, then eventually just kept her on a half dose because we all thought that it was that which was making her ill. I had a bad feeling about the trilostane and took her off it all together a couple of weeks later. She seemed to be getting better, then one night she just crashed. I had to carry her into the vets the next morning in a comatose state. The vet started to assume Addisons and gave her a huge dose of prednisone and sent us home. over the nest couple of days she got better-lot's better. It was incredible! She started acting almost normal, so we carried on with the pred. I wanted to have more tests done to see what the hell was going on, so Maya was scheduled for an ACTH and more bloodwork. We withheld the pred for 48 hours before the test, just as were instructed to do. The vet called and told us that her levels were that of a normal dog (without Cushings) This was very weird as she hadn't had any trilo for a month. No more trilostane for Maya!
We went to see a specialist who reviewed Maya's whole case file. The first thing he said was she most definitely had a macro tumor. It was a textbook case. That would even explain the odd ACTH readings, all symptoms etc. To be honest he didn't tell me anything that I didn't already know. My gut told me it was a macro right from the beginning....guess I was just in denial...
He was a decent guy, and told us that ,yeah...... we could do an MRI blah,blah, but he would bet his house, car and money on it. He'd seen it so many times before, same story! Maya is too old to go through that and to be honest I don't think I'd go down that road even if she wasn't. We have no pet insurance and that kind of grueling treatment costs thousands-which we haven't got. We are keeping her on the pred for now-she's doing pretty alright..I suppose! No more testing and no more trilostane-I think she's had enough.


Hugs from Leah and Maya

[Squirt's Mom]

**bumping up**

[Squirt's Mom]

Bumping this thread up for our members dealing with macros. Please feel free to contribute your experiences to this thread for future members. ;)

[pansywags]

I will be adding Pansy's story to this thread - it's very long as, in hindsight, I believe she exhibited her first symptoms a full two years before she left us last week. I won't beat myself up because I did the very best I could for her, but I do wonder whether she might have been treatable had she been diagnosed earlier. I hope that by putting down the details of her symptoms and progression, some other dog might be saved.

[pansywags]

Here is Pansy's story in the form of a summary of events since early 2012 and symptoms exhibited. Her history is long so I'll say right here that I think the takeaway from our experience is that if your dog tests positive for Cushings but does not display the classic sign of a ravenous appetite, accelerate your diagnostics immediately. In hindsight I feel Pansy showed her first signs (hind leg weakness) 2 years before she died, and we had a lot of delays along the way (home vet stopped testing entirely after ACTH stim so LDDS wasn't done for three months after I got referred to local IMS, local IMS office communication problems resulting in another delay of a month, waited for vet of choice at Davis for another month). I'll never know for sure but perhaps Pansy and I could have had more time together if we'd gotten a definitive expert diagnosis six months earlier.


Hind leg weakness noted Spring 2012, Physical therapy at rehab clinic for a year then home PT for the rest of her life
Hypothyroid Nov 2012, started on meds
Surgery to remove a dermal cyst Dec 2012, fur never regrew
Appetite declines Spring 2013
Series of 3 UTIs with e coli, July-Dec 2013, Very Thirsty Dog
Retested thyroid Aug 2013, post-pill levels normal
Seizurelike event Oct 2013, incontinence begins
ACTH stim negative for Cushings Nov 2013
Scabby skin lesions first noticed Mid Dec 2013
Seizurelike event Jan 2014
Referred to local IMS, LDDS test positive for Cushings Feb 2013
Self-referred to UC Davis after local IMS stopped responding to my questions. Cushings confirmed at UCD after urine, blood, endogenous ACTH and abdominal ultrasound. Indication pituitary, likely macro early March 2014
Cardio consult with ECG showed mass on heart but did not necessarily contraindicate anesthesia late March 2014, UC Davis
CT scan showed mass on heart, probably chemodectoma. Pituitary macroadenoma confirmed, additional mass found behind eye, late March 2014 UC Davis. Decision made that her situation was too complex to treat, vets expected her eye to become painful within weeks. Headed home to enjoy our remaining time together with lots of spoiling.
Significant neurological impairment upon return home after tests - circling, knuckling, collapsing, inability to eat or drink. I set Pansy free from her failing body at the local emergency vet just before midnight March 27.


Symptoms exhibited, in order of appearance

Hind leg weakness, first noted as legs sliding outward on hardwood floors
Dull coat
Lethargy
I don't know if this is related but her spit got kind of sticky - when she groomed her front legs the fur would be stiff instead of soft
Significant and rapid hearing loss. What hearing she had was very non-directional. At times I would call from right behind her and she could hear something but would run away looking for me, unable to tell where the sound came from
I did not get this confirmed by vets but I feel she also had diminished sight and possibly smell
Panting on even light exercise
Muscle wasting
Weight loss
Decreased appetite (although like me, she always wanted pizza)
Increased drinking (over a gallon a day)
Occasional nosebleeds, more frequent in cold weather
Recurrent UTIs
Indoor accidents and occasional urine overflow leakage
Muscle atrophy and decreased stamina - we used to walk 2-2.5 miles a day and near the end it was a struggle for her to walk a mile
Shivering/tremors across shoulder blades while inhaling, always while laying down (video here https://www.youtube.com/watch?v=YV7mc78B1UM )
Seizurelike events (2, one with loss of consciousness)
Calcinosis cutis (visual confirmation by UCD, no biopsy done)
Red irritated eye (mass behind eye was causing it to bulge outward)

[Iraklis]

Huskos' case would be much to difficult to put in one comment because most importantly ,apart from Cushings, it was a mixture of wrong diagnosis and poor Vetoryl follow ups and side-effects.

Here is the thread ,it makes for a long read i know...sorry...
http://www.k9cushings.com/forum/showthread.php?t=6211

I don't know for certain if it was related to Cushings ,but Husko was overweight for more than a year prior to noticing hind leg weakness...
It made me try to get him to lose weight by cycling (early 2013) since diet changes only helped very little...but stopped it due to him obviously not enjoying it.

Huskos' appetite had many ups&downs...during the summer while being treated with Medrol/Prezolon for (non-existant) ''athritis&liver'' cancer he lost his appetite.
During the 1st month of Vetoryl treatment he regained it...but lost it again during the 2nd month on 2*dose without ACTH test...(vets told me its a common side-effect & not to worry...told me the same when circling&pacing first appeared...would have avoided it all if i had signed up here and let people know, as i had discovered this forum...)
Re-gained appetite again during late-November ,9 days after the MRI and Vetoryl-stopping and 2 days after his first IV vit-C...
Lost it again during February to the end (immediately upon starting Vetoryl again...)
As Ginger said...it is a indicator something is wrong!

***********
My .02:
Once you suspect Cushings:
1.Get a liver biopsy to check for elevated corticosteroid signs if not certain of the cause of symptoms.
2.Get a belly ultrasound. Try to have a clear image of both adrenals
(In Huskos' case one of them was difficult to check ,so not knowing if Cushings was PDH or ADH caused many wrong decisions be made later on trying to be pre-cautious with money in case of Cushings being ADH & surgery needed).
3.Get a brain MRI (expensive but I guarantee it you won't regret it) ,followed by another one 2-6 months later or when possible, or if any of the following signs are observed (if during treatment of Vetoryl...STOP IT immediately...a macroadenoma causes much more serious damage & way quicker than elevated cortisol levels):
a.circling
b.pacing
c.can't drink water from bowl but rather ''licks'' the air above it
d.substantially decreased appetite

[lunalf]

Hi everyone,

I just found this site and it's comforting as well as very sad to know that others out there have had to or are going through this same thing.

My little Scottie girl, Lucy, just turned 14 years old on April 14th. She was diagnosed with Cushing's about four years ago and she's been on Trilostane ever since. 30mg. She's done very well on it.

She's already beaten the odds of living to 14 as most Scotties don't make it that far, so of course, like a bad movie, things all changed just a week ago. She started to literally bite and eat the walls of our house. For the life of me I could not figure out what was going on with her. Just last Friday she had a seizure right in front of me that scared the crap out of me. She was barking at the gardeners and all bent out of shape when it happened. She let out the loudest scream/cry/moan I have ever heard. I just happened to be working from home and I took her to our vet right away. She said that all signs point to a pituitary macroadenoma, or brain tumor.

There is no way I am going to put her through an MRI, etc. at 14-years of age. My vet put her on some downers for this weekend only to keep her calm as she said that seizures sometimes come in clusters and we are trying to prevent another one. She did xrays just to make sure there was not something else going on with her liver or heart and those looked fine.

So, I don't know how much time she has left until she declines further but yesterday and today we took her to the park and she walked around sniffing and seemed to enjoy it. She is still eating well and drinking water.

There are now about six different holes in the walls and I don't know what will happen tomorrow when we aren't here, but we will just deal with it until our little girl is no longer with us.

Bless all of you for helping your little four-legged creatures.

Linda in the San Francisco Bay Area

[pansywags]

giving this thread a bump for new member convenience.

[Jenny & Judi in MN]

My 12 year old poodle, Ranger has been having a lot of urine accidents in the house for the last several months.

He had crappy fur but antibiotics cleared that up. He has muscle twitches and he is a very nervous boy who has had seizures in the past.

He eats less but he is NOT skinny.

The vet ruled out UTI, kidney disease, lyme disease and cushings. (his ACTH was normal which surprised my vet he was sure it would be positive)

He arches his back more and has been drinking his water funny for over a year. I don't notice anything with his tongue but he bobs his entire head up and down when he drinks. I thought it was because he didn't want to get his ears wet but now you guys have me wondering if he has a tumor.

We can't afford to treat if he does and he still loves to play, walk, etc. so I guess I'll keep an eye out. thanks for this thread (I think). It could explain a lot about his behavior.

Judi

[LaurieS]

We are dealing with what we believe go be a macro tumor in our dog Charlotte. I have another thread going but was just alerted about this one for macros. I see there hasnt been any recent activity here though.

As im sitting here watching my poor baby go down hill im trying to learn all i can. But unfortunately my husband and i arent in the position to spend much more money on diagnostics and treatments. It breaks my heart to have to say that but its the truth.

Our Charlotte is a 7-8 year old rescued Boxer, we have had her for almost 3 years. She was diagnosed with pituitary cushings at UC Davis on 12/14/16. She was started on Vetoryl, 30mg twice daily, and initially showed some signs of improvement. Her excessive water drinking/urination decreased dramatically and although stil lethargic she did perk up some. This improvement was very short lived. Although her 1st and 2nd ACTH stim tests showed her in the stable range she started getting worse, more lethargic, very poor appitite and shaking/tremoring over her shoulders (which started before diagnosis but only got worse). We took her to the ER a few days ago after she started vomiting and didnt have the strength to walk. We stopped the Vetoryl and she was given a cortisone shot along with fluids and a anti-nausea med. The vet gave her a 10% chance to make it through the night. She bounced back and is still with us but she continues to shake/tremor worse than ever. She also seems to be in some pain. We are also struggling to get her to eat.

At this point both my local vet and her UC Davis vet are assuming she has a macroadenoma but because we havent had a CT scan or MRI we arent sure. She is currently on a low dose of prednisone and is not taking the Vetoryl. Im wondering if the macro is causing her pain? I have tramadol ive been giving her but any pills are a challenge because she isnt interested in food and treats.

I thought i might start a Go Fund Me account to try and raise funds for a CT scan but then if the diagnosis is that she needs radiation i have no idea how we would afford it. Does anyone have any suggestions? My heart is breaking watching her lay here and tremor. I want to help her so badly!

Laurie
________________________________________________

Administrative Note: For members who wish to reply directly to Laurie with thoughts or suggestions, here's a link to her main thread about Charlotte.

http://www.k9cushings.com/forum/showthread.php?t=8318

[liltara]

Hi Everyone,

I am new here as a posting member but not as a researcher! I've been using this site as my font of information every since my dog Mojo's diagnosis with Cushing's in August last year.

I am posting today because after countless frustrations and stress I am finally at a point where we understand what is going on.

In the interest of not writing a novel, suffice it to say that Mojo (9.5 years old) probably had Cushing's/macroadenoma for several years prior to our diagnosis. As with almost everyone else here, I started to notice things but never put together the whole puzzle until the pd/pu started to become bothersome.

Anyway, he was started on trilostane and it's been a roller-coaster. He did ok for a few months on it, but it became increasingly difficult to manage his inappetence while on the drug. I became exasperated and finally called Dechra and opened a case with them to try and figure out what the deal was - no dosage seemed to work consistently and every time he would become anorexic.

I am posting today to share a few things: first, the Dechra vet tech services team is AMAZING. They assigned Mojo a case number and we've been in consistent consultation to try and get him on a good dose. Second, it was the doctor at Dechra who FINALLY said that she suspects a macro adenoma considering all of the symptoms, but mostly his inappetence every time we seemed to be hitting our stride.

She explained that the trilostane controlling the cortisol likely reduces the anti-inflammatory response and the tumor begins to swell because it is no longer being "anti-inflamed". Since the pituitary is adjacent to the area that controls appetite and vomit response, when the tumor swells (when cortisol is controlled) it interferes with those responses and hence the inappetence and sporadic vomiting. Eureka! This makes perfect sense and matches his symptoms.

So,from what I can see on other posts in this thread many have encountered similar frustrations when trying to treat Cushing's and macroadenoma. I thought this information could be helpful for others - for me, the most stressful part of this journey has been trying to manage the inappetence. Now at least I understand what is happening and I know it is not just a side-effect of the medicine.

Mojo is still with me and we are managing as best we can. He continues to decline and all seems to be in line with the progressing macroadenoma. He is off the trilo for now and we are managing his symptoms the best we can. He is not suffering terribly at this point, but I do see the end is coming. Probably sooner than I am prepared for but then again are we ever really prepared?

I might try some prednisone to help with his symptoms (counter-intuitive, I know but it makes sense to try and shrink the tumor a little for his comfort) but other than that, we will not be taking extreme measures. Radiation therapy at this point would be cruel - he is very weak and the drama of weekly car trips and anesthesia is not fair to him. We are enjoying every minute and taking it one day at a time.

This is an awful disease and I am grateful for this forum. The wisdom shared here has helped me so much during this journey ... and it has provided me with a platform of knowledge so I know what to expect as Mojo heads toward the rainbow bridge. Thank you for helping us!!!

[labblab]

Welcome to you and Mojo, although I am so very sorry for the problems that are prompting the suspicion of the macrotumor. Thank you so much, though, for sharing your thoughts and experiences with us. What you've written does indeed correspond with the information that we've gleaned from other clinicians and researchers, and it is very helpful to have it here.

One additional thought that I might add is that some neurologists have chosen to give Cushpups suffering from macrotumors a combo of both trilostane and prednisone, which truly seems counterintuitive. But to the best of my understanding, it is for this reason. In situations where a steroid is thought to be helpful in reducing swelling and inflammation, you want it to be dosed in a consistent and predictable way. That means that for a dog with Cushing's, you may want to make sure that the dog's own cortisol level remains under reasonable control before adding in the supplemental steroid. Otherwise, the natural cortisol can elevate by leaps and bounds, and you have no idea whether or how much supplemental prednisone to be adding into the mix. As I say, just one more thought to add.

Again, thank you so much for sharing your story in the midst of the stress and sadness that accompanies this illness. If you should wish to do so, I encourage you to start a thread about Mojo on our main Discussion forum. In that way, we can offer our support to you both in the days to come. From my own experience, I know how truly meaningful that daily support can be!

Marianne

[labblab]

I am stopping back by today in order to provide a link to the thread of one of our current members who has just now successfully completed five days of stereotactic radiation at the vet school at North Carolina State University. Yogi is a flat coated retriever who was diagnosed with a macroadenoma after the lack of a proper response to regular ongoing trilostane therapy. Last week, he had a complete series of five daily radiation treatments, and he is already showing some behavioral improvement. We surely hope this trend continues! Here is his thread for anyone who wants to read about his journey thus far. And we invite his mom, Angie, to join us here, as well, if she has any thoughts that she cares to add here on this “Macroadenoma” thread.

http://www.k9cushings.com/forum/showthread.php?8783-Yogi-questions-about-Trilostane

Marianne

[labblab]

Stopping back by again, because I am realizing that we’ve never provided any specific links that discuss surgical tumor removal as an option for pituitary macros. Kathy, who started this thread, has shared a lot of info about her dog Macy’s unfortunate surgical treatment. However, we do have a success story to share, as well. That’s the treatment of another member, Lucy, who was the first dog to undergo surgery in a pilot project introduced in Los Angeles a few years ago. In order to provide some related links, I’m going to copy a reply that I wrote last fall to Yogi’s mom when she was debating stereotactic radiation at North Carolina State. It’s kind of a general summary of treatment options, so it’s somewhat repetitive of things that have already been shared here. But it also contains those links about Lucy and her surgical team. To my knowledge, surgery is still offered only rarely here in the U.S. But I did want to let folks know a bit about the history.



Through the years, we’ve had members who have undergone a variety of treatments for enlarging macrotumors. Initially the only option here in the U.S. was the prospect of over a dozen traditional radiation treatments over the span of a month, with general anesthesia required for each procedure. Over time, more specialized options have been introduced in some centers, including cyberknife-type treatment that only requires a very few sessions, and also actual surgery. In that vein, Dr. David Bruyette has helped pioneer successful canine surgery as a joint effort between UCLA and Cedars-Sinai Hospital in L.A. One of our very own members, Lucy, was his first patient in that pilot program, and I believe surgeries are still being done there on select patients. Here are some write-ups:

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

https://www.cedars-sinai.edu/Research/Research-Areas/Endocrinology/Mans-Best-Friend.aspx

We’ve also had members who have received advanced stereotactic radiation treatment at UC Davis and Washington, among other centers. I think Florida may also offer advanced options, as well. As you might expect, results have been variable. Some dogs have had very good responses and remained neurologically improved for an extended period of time. Some have not. Some have had an extended respite from Cushing’s treatment. Others have had to continue with Cushing’s treatment even though the tumor size was reduced enough to relieve neurological symptoms. I think a lot will depend on the actual location and dimension of the encroachment, as well as the vets’ assessment of Yogi’s overall viability as a treatment candidate.