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

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

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

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

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

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

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

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

Hugs,
Kathy

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

Good RX is another option, one of our members brought it to our attention: https://www.goodrx.com/?utm_source=g...FZmCswodfQwFYQ

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

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

https://academic.oup.com/endo/articl...0/en.2006-0414


Here is an overview of drugs that are being tested.

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

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

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

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

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

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

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

Hugs,
Laurie

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

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

Hugs,
Laurie

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

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

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

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

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

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

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

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

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

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

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

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

Most of our Cushing's dogs are older as are some of their owners, including me. To that end, here is my final link for the weekend written by Dave Bruyette, https://media.wix.com/ugd/38e433_6df...67672e512c.pdf and addresses the aging pet. :)

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

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

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

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

Marianne

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

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

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

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

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

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

Kathy

Hi Carole,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

BP is 150 after an hour wait to be seen.

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

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

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

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

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

Hi Carole,

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

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

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

Quote:

---

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

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

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

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

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

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

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

---

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

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

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

Marianne

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

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

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

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

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

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

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

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

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

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

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

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

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

Marianne

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

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

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

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

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

Quoted from his bio:

Quote:

---

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

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

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

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

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

---

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

email addy: info@vetneurochesapeake.com

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

Phone: (410) 224-0121 - ext 5

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

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

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

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

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

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

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

Marianne

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

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

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

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

Kathy

Hey Carol,

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

Hugs,
Leslie and the gang

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

How is Skippy doing? Time for an update :)

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

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

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

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

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

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

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

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

We are pulling for you and Skippy.

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

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

Please keep us posted,
Kathy

Carole,

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

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

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