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

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

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

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

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

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

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

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

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

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

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

Hugs,
Kathy

Quote:

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Originally Posted by Carole Alexander

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

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

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

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

Thanks everyone.

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

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

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

Dear Carole,

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

Hugs to you both!

Laurie

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

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

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

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

Cabergoline: Dr. Scott-Moncrieff has not utilized Cabergoline previously and I neglected to ask what kind of macro Skippy has, if they can tell from the MRI. (Dr. Bruyette states that Cabergoline works on some dogs whose macro is located in the pars intermedia.) No studies except the mysterious Castillo one report the effectiveness of Cabergoline in dogs; other studies purport its effectiveness in human CD and it did work on a percentage of ACTH secreting tumors in both. Dr. Scott-Moncrieff thinks that it will take at least a month to see if it has any effect. This drug works and is regularly prescribed for tumors secreting prolactin which is the most common type of pituitary tumor. I have no idea how they test for that or if his tumor could be secreting both prolactin and ACTH. I did find this study this morning from Utrecht in the Netherlands: https://dspace.library.uu.nl/bitstre...0Schouten.pdf? sequence=1
The researchers administered Cabergoline to some of their dogs after first giving them three or six monthly injections of Lanreotide, a drug that costs at least $70 for 1 mg. They were injecting the dogs in the study with 30 to 60 mg monthly for six months! Results were mixed for a variety of reasons and clearly this is not an affordable option.

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

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