New Member with 3 years of Cushings "cured" (Update: Macroadenoma)-Jackson has passed

[JacksonsMom]

Hello Everyone
I recall checking this site about 3 years ago, but I think it was closed to reopen later. Anyway, Jackson, my 12 year old Yorkie, was diagnosed in 2009 with Pituitary Cushings and treated successfully with Trilo during that time. His early symptoms were: first enlarged salivary glands, then hair loss, and finally pot belly. He was frequently rechecked during those three years and Trilo was adjusted according to the results of the ACTH test. In May and June his tests showed no more Cushings. Vet could not explain, but Jackson was becoming a finicky eater and losing weight (and eating dirt). They wanted to do liver biopsies, but treated him for Inflammatory Bowel Disease first (antibiotics). I sought a second opinion and was told I should get an MRI (Dr. Bruyette mentioned in the thread for Macroadenomas--tumors). I was reluctant because of the sedation required but we had the test on Friday and no surprise it showed a large tumor. I meet with him this coming Monday for Radiologists results and to discuss options: Surgery, Radiation, Clinical trials. I am so unhappy that the vet treating Jackson for Cushings never suggested an MRI, especially when his symptoms abated. I will post on the thread for Macroadenomas the results of our meeting. His current symptoms are tremors, anorexia, hair loss and elevated liver enzymes. He is on Prednisolone (2 mg twice a day from the first vet) to stimulate appetite and Dr. Bruyette is recommending a dose of 2.5 mg twice a day. My best wishes to everyone traveling down this road.

[Cyn719]

I am sorry for your bad news - we will pray for Jackson - I am now traveling that road - they think Penny might has a macro - she is going to be 12 in November - She hasnt felt well - some nights groaning - pacing - digging -- not sure - going to specialist on Wed - sending you strength and support - please keep us posted - all our prayers going out to you

[kapohotricia]

I'm so sorry that Jackson has a macro and, maybe, Penny too. My Kirby has all the signs too (tremors, circling, etc) though an MRI is not available in our remote rural area. It's comforting to see that macros don't seem to cause any pain and they don't know they are sick.

We started treating Kirby with Anipryl today. I have just posted to ask questions about that and maybe some answers to that thread will give you some helpful information. The members of this group are a wonderful resource and very kind to take time to share their knowledge.
Big hugs to you both, Penny and Jackson.
Aloha,
Tricia and Kirby

[ShannonJ92]

I'm sorry you are going through this with Jackson. I'm only learning my way around the ins and outs of Cushing's (newly diagnosed last month, I have a Yorkie too) and it's a really complicated disease. It's so tough, especially when other issues exist (believe me I know). Best of luck with your upcoming appt. and I hope that a treatment plan can be decided on to help your little Jackson. I'm so sorry he and you are going through this, keep us updated.

~Shannon

[Squirt's Mom]

Hi,

Welcome back to you and Jackson, tho I wish it was under better circumstances. You are right; the old site was shut down and this site started shortly after. Most of the old staff is still here as well as many members you may remember and a whole host of new folks. I glad you remembered us when your need arose and that we are still here to help.

There have been some fantastic advancements in treating macros over the last few years and I hope you will have some options that can bring both you and Jackson some relief and much more quality time together. Do let us know what you learn tomorrow and know we are here anytime you need to talk.

Keep your chin up!
Hugs,
Leslie and the gang

[JacksonsMom]

Thank you all for your kind words and support. There is comfort in knowing that our experiences will help others.
Warmest Regards,
Robin and Jackson

[JacksonsMom]

Just met with the vet and looked at the MRI. The tumor is 1.5 cm and looks huge. Dr said it is probably causing headaches (Jackson trembles seizure like even when sleeping).
Options are:
Do nothing and 1-3 months prognosis. I know it could be more, but with the headaches, what would be the quality of life?
Radiation: Daily for about a month, needing to be sedated every time.
Surgery: minimally invasive Vitol (here is a 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% for 2 years or longer. (only been done on 10 dogs so far.) Since they remove the pitutary, he would be on thyroid, steroids and one other for hydration.
Both options cost about $8000. I don't know what I will do, but surgery seems the best option. I've already spent about $10,000 treating the Cushings for three years--I'm not rich by any measure, but as you will soon find out, each visit to check the ACTH is about $200-$400 and they always find something else that should be checked out. I'll let you know what I decide, and I'm going to start a thread on the Macro area for the rest of this ride.
My best to everyone
Robin

[frijole]

Robin, Please know you have all of us on your side and if there is anything we can do to lighten the load or help in any way - just let us know. Sending love and best wishes, Kim

[kapohotricia]

Hi Robin,
I'm so sorry to hear the results. Knowing what's best to do for our sick furkid when there are options is the hardest thing, isn't it? I do feel for you and pray you soon have peace with the choice you make. Give Jackson a gentle kiss from me and a big hug for you. My thoughts are with you.

Aloha,
Tricia and Kirby

[addy]

I just wanted to let you know I am thinking of you and sending prayers your way.

Love,
addy

[labblab]

Dear Robin,

The dog of one of our other members was actually a pioneer in 2009 for Dr. Bruyette's surgery performed by the Cedars/UCLA teams. Lucy survived the surgery and enjoyed nearly two more years of life before succumbing to unrelated abdominal cancer. Lucy's mom, Gina, remains a member but does not have the chance to visit the site very often any more. However, if you send her a private message, I'm hoping she'll see it and respond to you. I know she'll be very happy to answer any questions she can. In the meantime, here are links to a couple of threads about Lucy. The first details her experiences leading up to and through the surgery:

http://www.k9cushings.com/forum/showthread.php?t=1009

The second provides a series of updates after the surgery:

http://www.k9cushings.com/forum/showthread.php?t=534

We have had other members whose dogs have been treated via conventional radiation therapy. Some have done well, with extended periods of quality time afterwards. Some have not done as well. We are also aware of some other experimental approaches that are being tried elsewhere in the country (both surgical and shorter-term radiation). But Dr. Bruyette will be well aware as to which options are available in your area or are most appropriate for Jackson.

I can imagine what a difficult decision this is for you. At the time that we suspected a macro in our Cushpup, conventional radiation was the only option. He was very ill at the time we were faced with the decision, and my husband and I did not want to put our dog through that many general anesthetics, nor be placed in a situation where he would have to be separated from us for lengthy periods of treatment. He was a very sensitive dog who did very poorly when at the vet's or around strangers of any type :o. But had he been of a different disposition and stronger at the time of treatment, our decision might have been different. I'll try to find some links to threads of other dogs here who have undergone radiation therapy. But you can also look for some threads yourself by utilizing our "Search" option to look for threads that discuss a "macroadenoma."

I think the bottom line is that you know your dog the best of anyone. You also know your own family circumstances, and whether the high cost of treatment will place a burden that is just too difficult, especially when there are no certainties about the outcome. Whatever you decide, we know that you love Jackson dearly. Of that, there is no doubt!! And we will stay right here to support you.

Marianne

[SasAndYunah]

There was a study done, last year in The Netherlands by a student of the Department of Clinical Sciences of Companion Animals, Faculty of Veterinary Medicine, Utrecht University, The Netherlands. The complete study (thesis) is over 200 pages and Glynda (Lulusmom) has a copy of it.

Since surgical removal of the pituitary gland in canines with a pituitary tumor has been done here for a lot longer, there is more experience and there are more long term and effectiveness results and they are described in this thesis. So I will copy that specific part here, just for your info and to possibly discuss with the treating specialist:


From: Recent developments in canine Cushing’s syndrome by Sara Galac, 2010.

8.1. Surgical treatment

In hands of a skilled neurosurgeon transsphenoidal hypophysectomy is an effective treatment for canine PDH (Meij et al. 1998, 2002). It is the only treatment that can eliminate the causative pituitary adenoma, but in the dog this requires complete removal of the pituitary. Following hypophysectomy, hormone replacement therapy consists of lifelong administration of cortisone acetate and thyroxine and temporary administration of desmopressin, a synthetic vasopressin analogue. The major complications are postoperative mortality, hypernatremia due to acute AVP deficiency, prolonged central diabetes insipidus, keratoconjunctivitis sicca, and residual or recurrent hypercortisolism (Meij et al. 1998). A recent study of the 10-year follow-up results in 150 dogs with PDH confirmed that it is effective, especially in the long term, with remission for up to seven years (Hanson et al. 2005). However, the survival and disease-free periods decrease and the incidence of central diabetes insipidus increases with increasing pituitary size. Hence, transsphenoidal hypophysectomy can be expected to have the best outcome as the primary treatment in dogs with nonenlarged or only moderately
enlarged pituitaries (Hanson et al. 2007).


Saskia and Yunah.

[Squirt's Mom]

Hi Robin,

Adding our thought, prayers and support for you and sweet Jackson.

Hugs,
Leslie and the gang

[JacksonsMom]

Thanks everyone for the info. I've been reading about LucyGoo and her trials and tribulations. Dr. Bruyette said only 10 dogs have been done here, in the Netherlands many more, but all those dogs had small tumors. My biggest concern is post-op quality of life. I am going to try and get more info on the other 9 cases re post-op issues.
Jackson is so playful and happy (when he's not having tremors) If his appetite was normal you'd not know he was ill. As it is, I have to feed him while he sits on my lap, usually putting the tail end (pardon the pun!) of the meal on my finger.
The secret I found to getting him to eat is to shave some frozen marrow (I've popped out of a cut shank bone) on the top of his food. I'm feeding him raw beef from the pet store. Earlier vet wasn't keen about the raw, but my understanding is it's best nutritionally.
I'll stay on this thread and keep you posted. Thank you for all your kind words and thoughts.
Robin & Jackson.

[Cyn719]

Robin - I have your little one on my prayers and sending you lots of love support strength and comfort xo

[SasAndYunah]

Hi Robin,

not all those dogs had small tumours, they say that dogs with small tumours have the best outcome after surgery. But initially they started with surgery on the macro's here as well. But due to the results they now use surgery especially to treat the small tumours.

Just thought these results and findings might be of interest to you and your vet...would be worth to check those references named in the thesis...since they were the source for what was written. In those references one should be able to find the amount of dogs with large tumours and the amount of dogs with small tumours, how many surgeries were done on each type, etc. Your vet should be able to access those references.

Wishing you and Jackson all our best,

Saskia and Yunah.

[JacksonsMom]

Thank you, I will research the info you provided and let you know my findings.
Robin & Jackson

[JacksonsMom]

I had several questions for Dr B, all regarding outcomes for a dog as small as Jackson (less than 10 lbs) with a tumor over 1cm (his is 1.5 cm) and the answer was quick--of all the dogs done--over 170 world wide, none have been as small as Jackson (he is less than 5lbs). He adds that without surgery Jackson has less than 3 months, which doesn't surprise me as he is soooo thin. So, to cut or not to cut, that is the question. I'll take a few days and I'll let you know
Robin

[lulusmom]

Hi Robin,

We have a member, Dottie, in the Los Angeles area who chose to have radiation treatments for her Yorkie mix, Tess. It was a tremendous success. If you have time and want to read Dottie's thread, here is the link: http://www.k9cushings.com/forum/showthread.php?t=894&highlight=sammie

[Cyn719]

Robin - Our thoughts and prayers are with you for Jackson - It is so hard to make a decision about our little loved ones but whatever decision you make it will be the right one - remember that

[JacksonsMom]

Thank you for those links on radiation. Dr says Jackson would need 18-20 doses over 4 weeks. Sedated every time. Survival rate 9 month to 1 year. Hmmmm
Robin

[JacksonsMom]

The Pred. has given Jackson more appetite and he wants to play a lot more. Just a little muscle weakens, but he still hops up the 6 railroad-tie steps on the hill outside. He's lost a lot of hair, so I bought him a jacket and tonite it's chilly and, for the first time, he seems happy to be in it. I wonder if he has a chronic headache. He never whimpers or moans--just the on/off tremors which could be from something else.

[EmCHammer]

Just to add my Staffie boy had Radiotherapy last christmas and is doing fine. He is a bit odd; but he was probably before he had some brain lesions before he got diagnosed with is macroadenoma (his too was 1.5 but he is a little bigger than your Jackson).

His radiotherapy was once a week for five weeks, with a GA each time. Just wanted to say that he was on steriods which gradulally reduced and stopped before the course ended but during that time we noticed no side effects at all from the Radiotherapy, he was not tired or anything and in fact appeared to be much better... the main 'side' effect was as a dog who has had alot of treatments over hte years it just increased his dislike/ suspicion of the vets. I know your course is different in length so he might have to stay away, but I would definately do it again.

Interesting to hear different cycles, I am in England.

He is now 9 months post treatment end and seems to be doing fine (apart from being odd!)

He has the opposite problem he is completely obsessed with food; yesterday he broke into the cupboard at my friends house and into the sack of kibble and gorged himself senseless; he is currentlyu like a piggy barrell with a leg at each corner and a bad tummy after it swelled up.

I wish you luck anyway in whatever you decide; it must be hard with more options here in the UK radiotherapy was the only option and he was deemed a good case being so young (4 symptoms first presented) - they do not do surgery here in England, not sure what would do if they did.

[JacksonsMom]

That is encouraging. What was his prognosis for how much time the radiation would give you?

[EmCHammer]

I was advised approximately a year and 15 months would be excellent...

he is 10 months in ... that year thing is getting scarily closer

They said it is not a cure and in most cases it comes back and that 15 months is considered 'cured' (not quite sure what that means!).

My boy has youth on his side, and he seems to be very fragile on the one hand the amount of things he has had wrong with him and times he has faced death and gone on in great spirits!

The figures I have looked at over here seem to imply that a year is about average; but I suppose in that average you get some who are no where near that and some who are way over? The specialists that did it say its quite a small pool of dogs who make up the stats.

The only other person who has had it done in the UK that I have ever been able to make contact with was advised at a different specialist to have the every day radiotherapy and could expect 3-4 years... it seems that no one seems to know.....

[Cyn719]

What symptoms did your Staffi show?

[EmCHammer]

He became very quiet and withdrawn and used to sit and stare into space loads and became disinterested in life; he wouldn't climb the stairs any more, or play with my other dogs. He would sit and stare for hours unless you moved him.

At first no one believed me when I said anything was wrong.

He was only 4 when this started and turned 5 during.

He showed no signs at all of cushings but when he was younger he had a serious accident, ran into a post and paralysed himself, he burst the discs in his neck and had a massive brain trauma and broke his nose, had to bring him home and he couldn't even roll over from his side at first. He made a pretty good recovery and we can only thing the tumour is a result of this even though the vet says they are probably not related, else h is a pretty unlucky dog.

As he was such a giddy livewire and so young the vets started to investigate with simple things first, a course of painkillers (which made no difference), vivitonin in case was dementia related to his head injury; bloods.

The next step was x-rays and during that time he went downhill quickly, i found him wandering i the night would get stuck in the spare room; I got home from work and he was circling and crying; he would flinch too . He became really weak and would lean up you and fall over if you moved (which may have been the mini stroke)

He also stopped wanting to walk and would just stop keep trying to take the short cuts home. Now people mention tremour he does a litlte but he has done since he had nerve damage and so who knows - he never had a tumour then on his mri from the accident.

The vet knew was something serious then, he was put on steriods which made him like a new dog overnight. The x-rays showed nothing so went for MRI, luckily then knew him at the hosp from before and it showed he had a spinal mini stroke from his damaged neck and also a macroadenoma... we didn't hesitate for the radiotherpay as would do anything for him; they said they thought would be a good case.

[JacksonsMom]

Thank you Marianne for the link to Lucygoo's thread. It was your comment that gave me what I needed to decide to do the surgery. You wrote:
"My own experience was that it was quite heartbreaking to watch my boy decline with all the neurological problems ...".
I just sent the Vet an email saying "lets do it". As the song says, "I'd rather be sorry for something I did, than for something that I didn't do." It might not work out, but at least I'll know that we tried. Waiting to hear back. I will continue to post as this unfolds.

[EmCHammer]

I think I would have definately done the same if I had had the option - wishing you both all the best.....

[JacksonsMom]

Is another round of radiation is an option down the road if his symptoms return?

[Squirt's Mom]

Hi Robin,

Decision made, steps taken to get the ball rolling. That was the easy part. :p:p The weeks ahead will be a roller coaster for you and I want to be sure you know we are here with you and Jackson every step of the way. We will be your sounding board, sharing what experience and knowledge we have to share. We will be your cheering section. We will be your safe place to fall when times are tough. You are both surrounded by prayers, healing white light, love and support 24/7. You do not face this alone.

Hugs,
Leslie and the gang

[JacksonsMom]

The love and support that fills this forum is a gift beyond words.

[Cyn719]

Robin - Prayers and support for you and your little one - always here for you - I would like to follow your new thread - since Penny is being checked into for a marco of ?? I am not sure how to go to the new thread - send me the link or just let me know how to get there - Hugsssss

[Cyn719]

Robin - it looks like our post just linked over - I didnt realize that - all set

[ktzndgs]

Thanks everyone for the info. I've been reading about LucyGoo and her trials and tribulations. Dr. Bruyette said only 10 dogs have been done here, in the Netherlands many more, but all those dogs had small tumors. My biggest concern is post-op quality of life. I am going to try and get more info on the other 9 cases re post-op issues.
Jackson is so playful and happy (when he's not having tremors) If his appetite was normal you'd not know he was ill. As it is, I have to feed him while he sits on my lap, usually putting the tail end (pardon the pun!) of the meal on my finger.
The secret I found to getting him to eat is to shave some frozen marrow (I've popped out of a cut shank bone) on the top of his food. I'm feeding him raw beef from the pet store. Earlier vet wasn't keen about the raw, but my understanding is it's best nutritionally.
I'll stay on this thread and keep you posted. Thank you for all your kind words and thoughts.
Robin & Jackson.

I just found your posts and would love to share info. You're doing surgery?? My Newf Macy had a macro surgically removed. Please feel free to share any info with Dr Bruyette. Her tumor was 1.8 x 2.0 x 2.5 when it was finally diagnosed last April, 2011. In June of 2011 Dr. Meij of the Netherlands removed the tumor which he referred to as huge. Dr. Meij is fantastic and I have great respect for him. There are posts about macroadenomas under "Everything Else" so please have a look there so you'll have more ideas of questions to ask. If I recall correctly as of May 2011 Dr. Meij had done 5 surgeries like Macy's. Her surgery took 2.5 hours and went better than expected but while she survived her stay in the hospital she died the day we took her home.

I have lots of info to share with you if surgery is the route you'll be taking and I've spoken to Gina about Lucy and compared notes. (She loved Dr. Bruyette) No matter the outcome of these surgeries I think it's important that we share what we and our dogs went thru so others will benefit. Macy was only in the hospital for 3 days after surgery. Lucy was in the hospital for almost a month(?). (Ten days and then went home but was again readmitted very quickly.) While Macy didn't survive Lucy did but Gina said Lucy was never really the same. There's a lot that went on with Macy and Lucy that I'd love to share that I truly hope will give you a good outcome. And there are things I'd love for you to chat with Dr. Bruyette about. Note I've given you 3 numbers that describe Macy's tumor. I'd appreciate it if you could get a better fix on the size of your dogs tumor.

I've questioned and questioned why we lost Macy and keep returning to the fact that her tumor was just too big and her brain could not take the insult of the tumor being removed. If you could see the ct scans you'd see the brain refilling the space after the tumor was removed. I'd love to have a conversation with a brain surgeon to learn more about what happens when we put the brain through this sort of surgery.

One of the most important things I'd love to hear about is what they're now doing to protect the brain after surgery? If this were a human, what would they do after brain surgery to ensure full recovery? They sent Macy home after just 3 days. Would they do that to a human? (I could not have afforded the extended stay.) These dogs spike fevers after surgery that are brought on by stress. Why? You have to be prepared to handle that. Can you spend more time *in hospital* with your dog than the normal hospital patient? It will help! What sort of access will you have to a vet once you're home. If I had to do it over again I'd make sure we could Skype or something.

Sorry if my questions are overwhelming. I'm excited to find someone doing surgery (am I right?) and want you guys to have a great outcome!!!

Would you mind writing down everything you can think of to post under the macroadenoma thread located in the "everything else" section? It would be great to keep it there for future reference. How was the diagnosis reached, what did you go thru beforehand, what are the symptoms you've seen along the way?

Kathy

[labblab]

Would you mind writing down everything you can think of to post under the macroadenoma thread located in the "everything else" section? It would be great to keep it there for future reference. How was the diagnosis reached, what did you go thru beforehand, what are the symptoms you've seen along the way?

Kathy
Kathy, I'm afraid poor Robin is going to feel totally confused because I think she had originally planned to shift her ongoing reports about Jackson to the "Macroadenomas" thread and I have asked her to please continue to post them here instead, at least for the time being :o.

So to try to clarify my own thoughts... If Robin wishes to, I agree that it will be great if she wants to put together a summary of Jackson's history to post on the "Macros" thread. This would be a great addition to our collection of resource info. And for folks who haven't already seen it, here's a link to that thread:

http://www.k9cushings.com/forum/showthread.php?t=3567

But while Robin and Jackson are in the midst of active diagnostic and treatment decisions, I think it will be easier for the membership to follow what is going on and to offer feedback if the active posting about Jackson's day-to-day progress remains consolidated here, all in one place. This way, all the replies will be here in one place, too.

Does that make sense? I hope so! If not, just ask me to try to be even a little clearer...! :o :o

Marianne

[JacksonsMom]

Kathy
Thank you for all the info. Wow. I've read your thread on the Marco area.
I share your concern about the brain and the empty space. I asked about consulting a canine neurologist and Dr B said they work with 2 neurologists. It's not an issue with respect to the space. The brain will drop back down.

You mention my other big fear, that Jackson will be impaired--around longer, but not better--or even as good.

The pred. is giving him some appetite, and with great effort, I am keeping his weight stable (4.2 oz). But he's a happy little guy. Dr. B says he's got 3 months max (I know that's a best guess) without surgery.

I will ask about the tumor size beyond the 1.5 cm (bottom view I think). A few more questions have occurred to me.

[ktzndgs]

Kathy, I'm afraid poor Robin is going to feel totally confused because I think she had originally planned to shift her ongoing reports about Jackson to the "Macroadenomas" thread and I have asked her to please continue to post them here instead, at least for the time being :o.

So to try to clarify my own thoughts... If Robin wishes to, I agree that it will be great if she wants to put together a summary of Jackson's history to post on the "Macros" thread. This would be a great addition to our collection of resource info. And for folks who haven't already seen it, here's a link to that thread:

http://www.k9cushings.com/forum/showthread.php?t=3567


Marianne

I didn't intend for her to switch to the other thread, just wanted to make sure a summary goes to the macro thread. It's hard to remember all of the symptoms and little things we go thru later on so making notes now will help. Even the decision making process we go thru will help others. Heading into and thru surgery is completely overwhelming. Having been thru it I know what she's going through.

Kathy

[ktzndgs]

Robin,

It sounds as though Dr. Bruyette has a lot of experience with these surgeries by now so you're in good hands. I was also told that the brain would drop back down but I question what happens to it when it does. That's one of the the things I'd like to discuss with a human brain surgeon.

In my conversation with Gina I didn't get the impression that Lucy was worse after surgery, just not the same. I hope that eases your mind a bit. I'm not sure what would have happened with Macy but I remember thinking that she walked funny; like a dog whose brain had suffered some trauma. I remember thinking we'd need to have physical therapy afterwards.

Have they recommended radiation after surgery? They did for Macy. She was to be part of a study at UPenn.

One of the things that I think was a big negative for Macy was that she didn't eat well in the hospital. Like so many things one person would tell me she was eating and the other would tell me she wasn't eating well. If I had gotten them to describe exactly what she was eating or if I had been in the hospital to feed her I would have had a better fix on that and I do think it would have aided in her recovery.

My biggest concern for this surgery is the part that comes after. We hatched the phone while Macy was in surgery and were so relieved when we got the call that all was well. Then we fussed for the next 24 hours since we were told that was a tricky period as well. But in fact I still think the hardest part comes later. Do they know why Lucy ended up in the hospital for so long after surgery? Have they overcome that? Will you be home with Jackson for awhile?

Macy reacted to stress with fevers (I believe Lucy did as well). You might want to discuss that with your vet and find out what the plan is.

I got to know the doctors who attended to Macy while she was in the hospital very well. They were a great group and were all devastated by our loss. I hope you enjoy the same close contact with Jackson's doctors. From what Gina said Dr. Bruyette is a very kind and caring vet.

If I can help at all please get in touch. If you need to talk on the phone I'll get my number to you. I understand the stress you're under and hope I can make things easier.

Kathy

[EmCHammer]

What are the main 'concerns' post operation? Also I assume that the dog would need to be on permanent meds?

Tekno isn't the same since his diagnosis and radiotherapy; again not worse but different - he has always been a little odd but certain things changed in him..

He used to be really giddy and excitable now is really calm and sensible and you sometimes wonder if he is enjoying himself as he was so nutty before. I think he is, he certainly gets excited about some things just not walking or playing

He was reactive with other dogs and really quickly became good with most other dogs

He used to love balls, hasn't really played with one since, he used to sit and cry at the cupboard to play ball, now he loves to carry little cuddly toys about in his mouth

He used to love his own space, now he loves cuddling up with my ohter dog

The main thing is he doesn't seem to enjoy his walks much, yet he loves going out on little adventures in the car and spending time sitting on your lap and cuddling.

In answer to someone elses question he can't have radiation again; I think the risk is too high to the healthy parts of the brain.

Would be great if you could chat to as many people as you can to find out others experiences

I know they told me that even the radiotherapy shrinks the tumour, which also has a 'halo' around it; and as it shrinks the brain moves back to take up the space it did before?

As my boy has this and neck spine damage I am sure he will need another mri before long will be reallyl interested to see what the tumour shrunk back to after radio therapy.

[ktzndgs]

They can have radiation after surgery but they cannot have surgery after radiation. You say Tekno can't have radiation again. Too much debris left?? That's why you can't do surgery after radiation. They'd have to remove all of the scar tissue radiation leaves behind which means taking brain tissue. The pituitary lies near the Circle of Willis which is a very sensitive area of the brain.

I can't imagine what all of the post op concerns might be. Given what I saw in Macy I'd think physical therapy would be called for. I assume the vets would check hearing and vision in the hospital. It wouldn't surprise me to hear personality changes might take place. The tumor has an effect on personality so removing it might also have an impact. Given how far reaching "personality changes" might be I can only begin to imagine what that might mean. I was told Macy would continue to have diabetes insipid us but not Cushings.

The surgery caused Macy to have raspy breathing. I don't know how that would have effected her eating and drinking. Maybe I'm beginning to mercifully forget some things.

The vet Robin is using, Dr. Bruyette, isn't new to any of this so I'm sure he's got lots of answers. I hope Robin asks as many as she can remember and shares the answers with us!

I do have a question that keeps creeping back into my consciousness.... Before surgery they give prednisone but I don't recall being given pred to dose after surgery. I believe you're not supposed to suddenly withdraw pred are you? Will Robin continue to give Jackson pred if he's on it now?

Kathy

[JacksonsMom]

Sorry not to have posted sooner. It's Monday and I had some questions for the vet, but got no answers that made me stop vacillating. I am so conflicted. Jackson is so happy now, the tremors are very mild and not nearly as frequent (credit the Pred. or change in diet, not sure) Vet has not given me any info on the surgery, probably because I keep asking him questions. They've done surgery on 15 cushings dogs so far and none as small as Jackson--he's 4.2lbs--their smallest was 11lbs (and died after 6 days). If he wasn't so small, maybe I wouldn't be so conflicted. Yorkies have really small trachea and two of the dogs died of upper airway obstructions.
And to put him through it all and get a different dog ... oh dear. I almost wish surgery wasn't an option. Sorry to be so wishy washy--I've never had to make such life and death decision before

[Squirt's Mom]

Hi Robin,

Don't apologize for wanting to be sure about your decision. We can't make up your mind for you but we can act as a sounding board if that will help. And we are always here to listen if all you need to do is vent. ;)

Hugs,
Leslie and the gang

[tinks mom]

Robin,
So sorry to hear of the bad news. Only you can deciede what is best for your baby. And then do what is needed.
Patty

[ktzndgs]

If he wasn't so small, maybe I wouldn't be so conflicted. Yorkies have really small trachea and two of the dogs died of upper airway obstructions.
And to put him through it all and get a different dog ... oh dear. I almost wish surgery wasn't an option. Sorry to be so wishy washy--I've never had to make such life and death decision before

Robin,

This is a tough decision for you. Nobody can tell you what to do. This must all nearly take your breath away but try to relax and enjoy your love for Jackson. No matter what your decision and no matter what the outcome you will have made the very best decision you could. You love the little guy too much so I know whatever you decide - you'll do the right thing.

I think asking questions before a surgery like this increases the chance you'll be able to help Jackson survive. You mentioned that two dogs died of upper airway obstruction. I assume due to swelling? Is there a plan to control that? What have the vets told you about the change you might see in Jackson? You don't want to keep putting off the surgery to do research but they must know what it does to the dogs. I wish I'd gotten more info from Gina. Then again, will a change in personality effect your relationship with Jackson?

Kathy

[JacksonsMom]

Upper airway obstruction, I assumed from "something" (one cause did mention possible vomit.) I have to ask the Dr.

[JacksonsMom]

Sorry, reply misplaced

[Cyn719]

Robin - Its a decision no one ever wants to make so do not feel you are asking to many questions - you keep asking until you feel comfortable making a decision - we are all here to support you - love prayers support and strength to you each day xo

[JacksonsMom]

If it's not too painful, can anyone tell me, if I choose just palliative care, what the decline might be like?

[EmCHammer]

I hope we are not 'confusing' you with all our questions and experiences - it must be difficult.

Can you talk to the vets who will be doing the operation rather than your regular vets; or is that who you will be talking to? When TEkno had his radiotherapy we had a consultation first, I took a whole notebook of questions to ask most of which they were happy to answer.

Do they think will be any particular problems with him being so small; or was it just bad luck re the histories with the other smaller dogs?

My Tek is different as mentioned after his radiotherapy; well actually he was different before and sort of never went back; but he is happy and here enjoying life in a different way (through food tinted goggles I think) - remember different isn't bad; he still has the same loving personailty and in fact is even more cuddly than before. He just enjoys different things in life and has mellowed out now; he is like an older more serious dog compared to his pre tumour giddy 'lovable idiot' - he still makes me laugh every day though - he is still Tekno.

I know when we went to the vets who diagnosed him (the spinal specialists for his spine problems) said that radiotherapy was pallative as it was not curative - it just buys time but to me pallative is just make comfortable and not treat, and the radiotherapy is treating? One thing they did however say was that as the dog cannot consent to any invasive treatments, its up to the vets to help determine what it is fair to put a dog through in terms of how ill they are, how much discomfort/ pain/ distress it may cause and and if the results would be worth it - they would not recommend anything that would not be fair on the dog.... and they would have no hesitation in recommending radiotherapy in our case as the results would far outweigh the treatment side effects.... so can you also be guided by your vets if you trust them.


With tek in the weekend he suddenly went down hill he kept getting lost in the night, I got home and he was just crying for no reason, shaking and cold and he wanted to cuddle but was unresponsive, and he was flinching alot too. He was very shut down and can only assume that things would have got worse from there and it would not have been long before I would have had to make that hard decision rather than see him decline more and more.

The steriods were like a miracle, he is about 19kg and had 20mg (I think) twice a day and an initial injection, he was like a new dog bouncing off hte walls, over the course of time they were reduced... I don't knwo how much time steriods buy or what pallative treatment would consist off.

[JacksonsMom]

I am so grateful to get all the info this forum provides. It is such a gift. I tried to "quote" your earlier post (need to research how to do that). Tek sounds like he went from adolescence to middle age with the treatment. That is good news to hear he still is a love. I am talking with the specialist, though not the surgeon He is very nice and very knowledgeable. I asked him about the last sentence in the study you referenced "...Hence, transsphenoidal hypophysectomy can be expected to have the best outcome as the primary treatment in dogs with nonenlarged or only moderately enlarged pituitaries (Hanson et al. 2007). He said the paper is not the most current (because it doesn't relate to the Vitom (minimally invasive) I believe. The reference to enlarged pituitaries does mean the tumor. He also suggested I continue the current course so that I can spend time with Jackson and make a decision when symptoms get worse. In so much as Jackson is "off the charts" with the tumor size and his size and his symptoms are currently being successfully managed by the 2.5 mg dose of Pred. I was thrilled to get that suggestion. I have been on an emotional rolllercoaster that I wouldn't wish on anyone. Racked by doubt and uncertainty. I think his odds with surgery are not very good because of the size ratio of tumor to brain coupled with his small size. I feel waiting while he enjoys life a little longer is what he would want. I will continue to update. I expect surgery is down the line, but we are going to take it a day at a time.

[SasAndYunah]

Hi Robin,

I must say that "doing nothing" would be a very huge possibility in my book of options. Medical science can do an amazing lot of things for both humans and animals. And these are just general thoughts...but I sometimes wonder if we are doing the right thing by persueing treatment for every possible condtion in every patient possible (again, both human and animal) I understand the loss and grief we experience after loosing someone we love, I have lost my fair share of dogs, pets, familymembers and friends over the years. But I do think we should question our own reasons when deciding on treatment, very carefully. (in the case we have to decide for someone else, and again, both human and animal) Is it really the very best we can decide for that person/animal? What will they gain if we decide to treat? And what are the odds they will gain...(quality of life)..indeed after treatment? Is it truly for them or for us, because we can't let go, because we fear facing the grief and loss? Because we are so used to "treat" because the options are there?

And each case is different. I probably would decide differently in a same situation when one dog was for exampe 3 and the other was 13. If I had a 3 year old dog that could be saved or cured by performing high risk treatment, I would take that risk. The dog either would not survive the treatment (and I would be okay with that since it was a risk) or the dog would survive and be cured and have many more happy years ahead of it. But if I had a 13 year old dog, that could be cured by a high risk procedure, I would think twice. The dog already had a reasonably long life and I don;t know if I would be willing to put it through all the stuff that comes with treatment (vet visits, feeling poorly after the treament, etc) for perhaps a year extra? Sure I would have another year with my dog...but what kind of year will it be for the dog? Wouldn't it be more "humane" to let the dog have a peaceful last time here with us? To just enjoy them and not putting them through anything and everything? To treat symptoms to the best of our (and the medical) abilities and then let them go...when we no longer can make them comfortable? Long...isn't always better. Not too long ago, someone else said, after the passing of a beloved pet, : It's not about how long they are with us, but how happy and loving that time is..." and I couldn't agree more.

I was so lucky to have an orthopedic surgeon for my dog, that had the "do nothing" approach high on her list of posibilities. It's an entirely different case but just to illustrate "doing nothing" is definately a choice and at certain times perhaps even the best choice. There were people telling me I was a fool to not have the surgery done...or ask if I couldn't afford it? Because in that case, people will understand a decission not to treat. But other then financial reasons, people can act very strange when you decide not to treat. But no matter what other people think, "doing nothing" is a very good option in certain cases at certain times. I suppose what I wanted to say was that we use to think in terms of treatments...while we should add "doing nothing" to the possible list of treatment options.

Enjoy Jackson the best you can and wishing you all our best,

Saskia and Yunah :)

[lucygoo]

Hi Robin....I Just read your thread and am so sorry to read what you're going through. I can totally relate, as Lucy was the first dog to have that surgery done here in the US. Dr. Bruyette is wonderful. My experience with Lucy was fantastic, but this surgery is no guarantee. I took the chance because I really didn't have any other option at the time as her tumor was so huge, but whatever your decision is is the right one. Deep down you know your dog better than anyone.
I read someone wrote that Lucy was "different" after surgery...for about a month, yeah, it was a nightmare; but she bounced back and I had her with her same personality and all for almost another two years. For that I'll be ever grateful. There's so many stories I could tell you about what went on so feel free to private message me and I'll give you my phone number, e-mail etc. The most important thing to remember is you know what's right for your baby...so don't feel guilty about anything.

Take care, Gina

[JacksonsMom]

Hi Gina
Thank you, I would love to know more about your experience and will contact you.
Robin

[JacksonsMom]

Let Jackson go three weeks ago. His appetite got less and less and he lost a lot of weight. Hand feeding extended his life with quality for about three months (original diagnosis after the MRI was 2 months) Raw food from the pet store was a hit for a while, then he liked the Cesar canned. There is a possible correlation between neutering and these tumors in Yorkies, so I regret having that done. I could rail against the lack of info and the misdiagnosis from the specialists I saw, but that wouldn't help anyone. If you are not going to do the surgery, then find a vet who will monitor your dog on a dose of pred. that is effective and not too debilitating.
Thanks to everyone for their kind words and prayers. And my heart goes out to everyone.
Robin

[Squirt's Mom]

Dear Robin,

I am so sorry to hear that Jackson has left us. You did such a wonderful job with him and I know he is ever so grateful all you did on his behalf.

Please don't beat yourself up. We can only act on the knowledge we have and trust in those who are trained in the medical fields that treat our babies. I am positive Jackson does not blame you in any way and would not want your heart hurting more than necessary due to guilt you don't deserve to bear.

We are here anytime you would like to talk.

Our deepest sympathies,
Leslie, Squirt, Trinket, Brick, Tasha, and our Angels, Ruby and Crystal

[Jenny & Judi in MN]

I'm glad you got 3 more months with Jackson. He was so lucky to have you as his human Mom. Hugs, Judi

[jmac]

I am so sorry to hear you lost your sweet little Jackson, but so glad he is not in any pain or suffering. I am so glad you had three months with him. You are in my thoughts...

Julie & Hannah