Backstory and ?'s about our BT with cushings (Sweet Vahla has passed)

[Vahla]

Hello all. Our boston terrier Vahla has been diagnosed with pituitary meditaed cushing's disease. Prior to treament she had a large belly, insatiable thirst/hunger and decreasing agility. However, sheStill quite playful and fairly normal besides the above issues. We decided to try vetoryl. Her symptoms started to resolve within a week or so but she began to develop left sided weakness. This became progressively worse with inability to stand at most times, she struggles to walk, falls often, and has difficulty tracking things in front of her. We stopped the vetoryl as a result. She's been off vetoryl for almost a month now. The cushings symptoms have returned and she still has the neurological weakness. Our vet speculates that the pituitary tumor has grown. I have a medical background and it seems like the high cortisol levels may have been keeping the tumor restricted in size and when she was treated the decreased cortisol levels the tumor subsequently grew. This is all speculation because we do not have an MRI brain (not available where we live). Considering restarting the vetoryl to treat the cushings symptoms but unfortunately she is quite debilitated neurologically and it doesnt appear anything can be done about that.

Does anyone have a similar experience, any experience, or any advice on our situation. We are very sad and at a loss over her dramatic decrease in quality of life and are looking to do anything we can.

Thank you

[liltara]

Hi!

My dog, Mojo, definitely suffered the same issue - once we started treating with Vetoryl and the cortisol was reduced the tumor grew and neuro symptoms worsened.

I did not have a brain MRI done so it is all educated guesses, but I was pretty well-informed about this disease thanks to this forum and my own tireless research and I conclude that ultimately, the trilostane treatment caused the tumor to grow. This is also the opinion of my vet and the vet at Dechra.

Looking back, I am not sure I would have treated him with trilostane if I knew how it would all play out. I would rather have had less time but better quality ... and dealt with the high cortisol issues. Would have been preferable to the neuro issues (anorexia, confusion, etc.).

Anyway, just wanted to pipe in to let you know that your suspicions are likely correct. It always helped me to hear that others understood and agreed.

Sending healing thoughts ...

[Harley PoMMom]

Hi and welcome to you and Vahla!

Unfortunately with some dogs with the pituitary type of Cushing's the tumor does grow large enough to cause neurological symptoms. And, also unfortunately, the only way to know if it is indeed a macroadenoma is to have either a CT scan or MRI.

You mentioned that the high cortisol may help, and it does, it aids in keeping the inflammation down. On the forum we have seen cushdogs with macros being treated with their Cushing's medication and prednisone at the same time.

I have to make this post short, sorry, but I'm including an article from Dr. Peterson's blog, he is a renown veterinarian that specializes in endocrinology, regarding a dog with Cushing's and a macro: https://endocrinevet.blogspot.com/2011/07/q-pituitary-macrotumor-in-dog-with.html

I'll try to make it back later and hopefully the others will be by soon.

Hugs, Lori

[Vahla]

Thanks very much for the responses :). Upon further research I am looking into trying Cabergoline. My vet has never heard of it but from what I've read it seems like the only shot I have at improving Vahla's quality of life. Here is a link for people if they are interested or may have a similar scenario:

https://www.researchgate.net/profile/Nelida_Gomez2/publication/5934021_Cushing%27s_disease_in_dogs_Cabergoline_tr eatment/links/0f3175315b1eea3816000000/Cushings-disease-in-dogs-Cabergoline-treatment.pdf?origin=publication_detail

If anyone has any experience with this drug or any advice please respond.

Thanks again

[Carole Alexander]

Hello Vahla's Mom,

An MRI confirmed my dog, Skippy's macro adenoma in early April of this year. If I recall correctly, I started him on Cabergoline late April and he continued on the drug until sometime in June. Initially, it did seem to help him modestly. As time passed, less so, and the drug caused Skippy to experience continuous diarrhea that I never was able to get under control. My endocrinologist was quietly skeptical; Dr. Peterson in CA reviewed Skippy's MRI and said that he was doubtful that it would be of benefit in either addressing the Cushing's or reducing the tumor. Cabergoline is effective if the tumor is functioning and is over-producing prolactin. I posted a ton of research on Cabergoline on my thread and you may want to try to wade through some of it. My hope was that Skippy's pituitary adenoma was overproducing both cortisol and prolactin as there is research that with people, Cabergoline may help. Such was not the case. In late June, Skippy had three radiation treatments. The verdict is still out as to how much it will help him but it was my only option to try to improve his quality of life. Finally, I don't know where you live but Purdue University has a clinical trial underway on canine brain tumors that reduces the cost of an MRI to about $1,300. Purdue is also initiating a surgery program for pituitary macro adenomas and they were willing to pitch in substantial dollars if I were to opt for surgery to remove his pituitary and the tumor. ( I said no go as his macro is large; he's twelve and has other medical issues.)

During my OCD phase I did a ton of research and posted a smaller number of articles on both Cabergoline and macro adenomas. I have no medical training but would be happy to try to respond to any thoughts or questions on this issue. I know full well how frightening the symptoms are and am so sorry that you and Vahla have to experience this.

Carole

[Carole Alexander]

If you decide to try Cabergoline, get a script from your vet and use Blink or Good RX to secure the drug from a pharmacy. It will be a third of the cost. My vet had never heard of it and while Purdue vet had, they had to special order the first round for over $300!

[Vahla]

Hello Vahla's Mom,

An MRI confirmed my dog, Skippy's macro adenoma in early April of this year. If I recall correctly, I started him on Cabergoline late April and he continued on the drug until sometime in June. Initially, it did seem to help him modestly. As time passed, less so, and the drug caused Skippy to experience continuous diarrhea that I never was able to get under control. My endocrinologist was quietly skeptical; Dr. Peterson in CA reviewed Skippy's MRI and said that he was doubtful that it would be of benefit in either addressing the Cushing's or reducing the tumor. Cabergoline is effective if the tumor is functioning and is over-producing prolactin. I posted a ton of research on Cabergoline on my thread and you may want to try to wade through some of it. My hope was that Skippy's pituitary adenoma was overproducing both cortisol and prolactin as there is research that with people, Cabergoline may help. Such was not the case. In late June, Skippy had three radiation treatments. The verdict is still out as to how much it will help him but it was my only option to try to improve his quality of life. Finally, I don't know where you live but Purdue University has a clinical trial underway on canine brain tumors that reduces the cost of an MRI to about $1,300. Purdue is also initiating a surgery program for pituitary macro adenomas and they were willing to pitch in substantial dollars if I were to opt for surgery to remove his pituitary and the tumor. ( I said no go as his macro is large; he's twelve and has other medical issues.)

During my OCD phase I did a ton of research and posted a smaller number of articles on both Cabergoline and macro adenomas. I have no medical training but would be happy to try to respond to any thoughts or questions on this issue. I know full well how frightening the symptoms are and am so sorry that you and Vahla have to experience this.

Carole

Thanks very much Carole. We are in Canada and so the opportunity to go to Purdue is not feasible. We are also quite far from any institution which is capable of a canine MRI or radiation. We will look through your posts as any information on Cabergoline at this time is greatly appreciated. We are very grateful for the good wishes for our little Vahla and hopeful she will feel better soon :)

[Carole Alexander]

Hello again, I thought of you and Vahla this morning as I was researching the question of Vetoryl and macros. I know that several people have tried using Vetoryl in combination with other drugs, e.g., prednisone in low dose combinations. I will find the threads and send them to you when I have a few minutes. I am also researching a drug, L-Deprenyl that is said to possibly reduce tumor growth and cushing's symptoms. Many vets think it doesn't help but it does have many supporters and purportedly does no harm. Dr. Bruyette in CA recommended using Vasopressin to help with the PU/PD. I haven't ask about it but may if I don't put Skippy back on Vetoryl.

I know that this must be heartbreaking for you as I know that it has been for me and so many others. Please let us know how Vahla and you are doing and I really hope that you can find something to help Vahla.

[Vahla]

Hi just a quick update on Vahla- we started the Cabergoline last week 0.5mg three times a week- and are hopeful we are seeing improvements in her symptoms. Thus far her neurological symptoms haven't progressed any further and her Cushing's symptoms seem to be controlled at the time being. She's loving cuddles & spending time outside at the moment:)
Thanks for your support & well wishes!!

[Budsters Mom]

Such great news!:) Please keep us updated on her progress.

Kathy

[molly muffin]

Great to hear that.

Awww cuddles are the best.

[Vahla]

Thanks for all the support everybody truly. We look into any information provided so I will be looking into desmopressin. I have priced out MRI costs in neighboring states and provinces (not available where we are at) but it is not of utility unless radiation is something we would seriously consider. So, radiation is something else I am researching while Vahla is on her cabergoline trial. We are syringe feeding Vahla as her neurological symptoms have left her unable to eat on her own. Syringing water as well with subcut fluids as needed. She has been a little more finicky against eating lately so we hope that passes. Any tips on feeding would be great as well. Thanks so much :)

[Carole Alexander]

Take a look at Dawn Anderson and Doc's (Florida) experience with radiation (both positive). Search here using the keyword "radiation". Also you may find more people's experiences with radiation on the FB Cushing's pages. I am very sorry that you are now having the eating issues; it is so hard. I wish I could tell you more about Skippy's experience but it is just too soon, I hope.

Carole

[Vahla]

Thanks a lot Carole. I've been reading through some of the older posts and it is making radiation look better. I have a call out to my vet regarding our increased interest in treating via radiation. She has been great and will get in touch with the neighboring province's University of Veterinary Medicine and we will go from there. The cost will not be easy to afford but if there is the slightest chance of getting Vahla back to her old self we will try as hard as we can to make it work.

She has been attempting to lick wet food off a plate now and will eat out of my hand with a licking method which is great. not to keen on water so I give her subcut fluids to top up. She was constipated for about a week and I was planning on giving has a warm saline enema last night as per my vet but she had a bowel movement which is great!

Appreciate everyone's support and information as always. Going to be looking at studies with radiation treatments over the next while so if anyone has a good one to read please pass it on :)

[Carole Alexander]

I'm glad Vahla will take food from your hand and your medical training is of enormous benefit to her, especially with her refusal to drink. I will pull all of the radiation studies that I found and send them along. Many are old and from a research quality standpoint, they are terrible in that they are not comparable, use different radiation equipment, and there is simply no way to evaluate the skill of the radiologists. Seemingly in the past they used smaller doses over long periods of time; different types of equipment, e.g., cyberknife, SRT, Tomotherapy, etc., seem to have benefits and negatives in respect to short and long term radiation effects. Tomotherapy equipment has the CT scan attached to the radiation equipment which seems like a good thing. But, then Purdue uses SRT and they believe they have a way to compensate for the lack of a CT scan during radiation. Costs vary enormously. Purdue included Skippy in an MRI clinical trial on brain tumors; I think the MRI was $1,200; the CT scan and radiation were about 4k for three treatments. Others report costs in excess of 10k. Very few of the university based clinics talk about outcomes in the aggregrate or individually. Purdue said they had radiated four or five dogs with pituitary tumors and they lived on average about a year after treatment. No information was offered on their quality of life. Canadian treatment facilities may be entirely different and costs may be less. Ask every question you can imagine in advance if you decide to go forward. In the meantime, I will post the studies I found.

Best to you, Carole

[molly muffin]

That is good that she will at least try to eat from your hand. Have you tried the higher bowls that stand up tall for her? Depending on where the tumor is pressing, it can be a neurological issue regarding motor skills or can be a pain issue hanging the head down.

Carole is our most up to date member when it comes to radiation as she has just had it done on her Skippy and is actively in the process of follow up now.

I know that in Ontario, Guelph has a good, up to date vet school that does radiation, so i hope that the one nearest you does also. Ask them how many they have done and what sort of results have they seen and prognosis afterwards.

The typical right now seems to be a 2 - 3 radiation treatment option that most places are doing. The older one did the less radiation at a time, but was 12 treatments.

[Carole Alexander]

Here are a few articles that you may have found already. I hope your pup is eating and drinking a little more this morning. Have you ask your vet about the drugs that are appetite stimulants?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1800960/pdf/cvj48pg316.pdf
http://onlinelibrary.wiley.com/wol1/doi/10.1111/jvim.13945/full


http://todaysveterinarypractice.navc.com/canine-pituitary-dependent-hyperadrenocorticism-seriespart-3-current-investigative-options-for-therapy/

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0135516

After much digging, I can find little evidence, in respect to outcome and quality of life, that these various radiation approaches, SRT, Tomo, Cyberknife, IMRT, etc., result in vastly different outcomes. While equipment is important, the skill of the radiologist and CT planning are probably far more important. Every vet school and private vet clinic with new (and very expensive) equipment touts it as "the thing". As you know, this is an expensive endeavor that is pallative and fraught with uncertainity. I have no regrets in giving Skippy his best shot as I love him dearly. But, I also know that it is not a miracle and it may not help him at all. Best to you and Vahla.

Carole

[Vahla]

Thank you for all of the information and support everyone has shown us during this difficult time... We truly appreciate the time people have given to help us:)
Unfortunately Vahla took a turn for the worse suddenly and decompensated very quickly within a week- unable to walk even with some assistance, stopped eating even from hand or syringe and was just overall very weak & unwell. We had to make the difficult decision to lay her to rest. Our sweet darling crossed the rainbow bridge on Friday Aug 18. Our hearts are broken; she fought so hard through all of this. She was an amazing part of our family who will be forever missed.
Thank you to everyone for helping us with info and support. Overall we do believe the Cabergoline was helping her Cushing's symptoms... Just the tumor took over too quickly and we didn't get the chance/time to see if the Cabergoline would help to also shrink it over time. If I could go back and try the Cabergoline first instead of the vetoryl I would in a heart beat... But we can't dwell on what-if's.
We love you Vahla- RIP sweet girl
Thank you.

[Budsters Mom]

I am so sorry for your loss. :o

Fly free sweet girl, fly free!
Hugs,
Kathy

[Joan2517]

I'm so sorry for the loss of your sweet girl.

[Squirt's Mom]

I am so sorry to hear about the loss of your sweet girl, Vahla. :( You did all you could and I know she left this life on the wings of your love. Now she will watch over you til you can be reunited once again.

My deepest sympathies,
Leslie


Tribute To A Best Friend

Sunlight streams through window pane
unto a spot on the floor....
then I remember,
it's where you used to lie,
but now you are no more.
Our feet walk down a hall of carpet,
and muted echoes sound....
then I remember,
It's where your paws would joyously abound.
A voice is heard along the road,
and up beyond the hill,
then I remember it can't be yours....
your golden voice is still.
But I'll take that vacant spot of floor
and empty muted hall
and lay them with the absent voice
and unused dish along the wall.
I'll wrap these treasured memorials
in a blanket of my love
and keep them for my best friend
until we meet above.

Author Unknown

[Carole Alexander]

I too am sorry for your loss of Vahla; we all understand how difficult this struggle is for you and for her. I too hope that Cabergoline will show promise with some dogs whose tumor is diagnosed earlier. I also hope that the other experimental drugs will become more affordable. In the meantime, my heart goes out to you and your family.

Carole

[Harley PoMMom]

I'm so sorry for the loss of your precious girl, you and your family are in my thoughts and prayers.

With Heartfelt Sympathy, Lori

[molly muffin]

My sincerest condolences. It's awful to lose them at any point and we all know how hard you were trying to save her.