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

I'm glad Skippy is showing some improvements. Winston had horrible gas when he was pretty young, especially when he was eating grain free foods. I think he just couldn't tolerate such a high amount of protein. Things improved when I tried a "regular" chicken and rice-based food. My vet at that time told me that every dog is different, some do great on grain free, some don't, but we just have to listen to them to see what they do best on.

I think it is excellent that Skippy has some some inclination to get up and move a bit more. Who knows more improvements could be coming too. They said it would take months to see a real difference right? And with the vetroyl, maybe this will continue. I do hope so.

Gosh, I don't know, molly would go through phases of having some horrendous gas, and then it would pass. I always thought it was her food too.

Thanks everyone for sharing your experience with our pups bodily vapors! The intensity and frequency of his gas does seem to be diminished the past couple of days, thankfully! Purdue has turned silent in response to my question about removal of the adenoma on Skip's butt so I guess it will wait until the end of the month when I will also talk with my local vet. Regarding his treatment with Vetoryl and the status of his Cushing's symptoms, it's been nearly two weeks on the low dose, 10 mg. 2 x a day and he continues to slowly improve. I suspect he is being under dosed for his weight of 28 or 29 lbs. But, I will not increase the dose until he has a stim test. And yes, it often takes months for the radiation to reduce the swelling and/or the size of the pituitary tumor, if it works.

I've been following the progress of a couple of dogs on FB who have had or are completing radiation. One had cyber knife and the other is having 16 treatments of IRT. From what I can determine, neither are miracle approaches. While cyber knife is usually three treatments as was the SRT that Skippy had, it is purportedly more precise. However, several dogs have developed long term radiation effects (relatively quickly )that are permanent. The FB dog who had cyber knife in July is already developing weird new symptoms and has lost one eye. But then again, every dog is different and I'm guessing that radiology and oncology specialists don't want the great unwashed to draw conclusions or make decisions based upon their treatment of a few or more dogs. But people are desperate for information and I and others are already making decisions with too little of it. I just want clinics to follow the dogs that they treat and publish their outcomes. I am going to write the head of radiology at Purdue and push hard for them to publish information on their website. (I would gladly document Skippy's experience from my end.) I hope that as more people pursue radiation, there will be an increasing demand for this data. I'm stepping off my soap box now. :)

P.S. Purdue radiology told Dr. Scott-Moncrieff that they would be happy to perform another CAT scan on Skippy's brain after six months. (Should he live that long!)

Carole

Carole - I continue to follow Skippy's journey and I am still inspired by your commitment to his care and quality of life. Had I known at the beginning of Mojo's journey that the trilostane would hasten the growth of his tumor, I would absolutely have considered radiation (no matter what the cost).

Common sense and my research tells me that the future of macro treatment does not include Vetoryl as a first line of defense and that radiation or other tumor controlling/shrinking treatments will be at the forefront. Of course, there is much research to be done and such but having watched my Mojo go through the disease progression I can say with full confidence that macro treatment must be considered differently than controllable (typical) Cushing's.

That said, I just wanted to post one last time here and say how much I've appreciated the support that you and others gave me during my darkest days with Mojo. I do hope I was able to return the favor in even the smallest way.

Coming here now, at this point in my grieving process, is not positive for me - I am finally thinking of Mojo with smiles and not tears (at least not every day!) and visiting this site reminds me of the great sadness I experienced during the late stages of his illness. I am eternally grateful for this site and will keep it bookmarked for future use if I should ever, God forbid, have another dog afflicted with this terrible illness.

I will continually pray for Skippy and you - I wish you both the best of days and experiences and happiness as you continue your journey together. You are what all pet parents should be, Carole. :)

Hello everyone, for once I'm not posting about Skippy. In surfing the FB Cushing's forum, I stumbled on a post about a woman whose dog's cortisol level is being tested with something called a pre pill instead of the ACTH Stim test. Here is the article:
http://www.vetpracticesupport.com/mo...mulation-test/

I emailed the article to Dr. Scott-Moncrieff at Purdue and she said that she thought the research was promising although Purdue continues to use the ACTH. I will see her next week and ask more but I do recall that they are using this procedure at a vet clinic in Yorkshire, UK. I know nothing about the cost of this procedure but I am guessing it is less than the ACTH. In reading further it also seems that there is some controversy over the accuracy of the ACTH although it remains the gold standard.

Certainly my interest is personal but also I remain concerned about all of us who are struggling with the exorbitant cost of treating Cushing's. Just yesterday my neighbor's dog was diagnosed and she is talking about getting a reverse mortgage to pay for treatment! That is just not right. I will be interested in what others of you think about this or if anyone has had any experience with this form of testing.

P.S. Skippy is okay but seems to have plateaued on 20mg daily and is back to serious PU/PD and refusing to walk. I am in Maryland but will take him to Purdue next Tuesday.

The cost would be the same as just measure the pre cortisol and not the post cortisol, which is less. Some vets only measure the pre cortisol already when they are trying to help customers keep cost down. Many dogs will have a low pre but be within range on the post, making some vets discount the pre all together. I would want to see some further monitoring studies done using only the pre cortisol, before saying it should be wide spread use.
I think there would still be times, when the full ACTH would need to be used.

Dear Carole,

First of all, I'm surely sorry that Skippy is having some recurring issues. He is such a trooper, as is his mom! Please give him a loving hug from his family here, and I hope that some helpful info will be gleaned on Tuesday.

Secondly, thanks for reminding us about this new monitoring protocol. This research was circulated among us a little while back, but I've really not seen any subsequent professional comment. Flaws have always been noted in using the ACTH to monitor trilostane patients, but as you say, to date there has not been a superior approach. I believe I will contact Dr. Bruyette in order to see whether he has any thoughts about it, and if so, I'll definitely report back to everybody.

Please do let us know how things go at Purdue.

Marianne

Very interesting article, Carole.

Hi everyone and thanks for your comments about gas; I may try changing his food but our other dog, the Dandie Dinmont is eating the same food, low fat Wellness Core. No gas, so I am enduring.

Marianne, sorry to raise a study that everyone has already seen. I will be curious as to Dr. Bruyette's thinking on this topic; it has the potential to advance the quality of life of so many dogs for owners who can't afford to treat and test according to Drecha’s protocol. I haven’t responded to Liltara’s post as it made me cry to read it, but I will. The Skippy update is mixed as usual. His trip to Purdue Tuesday answered few questions. Here’s a long summary:

Neurological: no formal evaluation but menace response is reduced, weakness in rear legs continues, still often refuses to walk, sometimes legs go out from under him, slight tremoring. Purdue thought he seems more alert, aware, interested in life and his surroundings. Dr. Scott-Moncrieff feels that we cannot assess the impact of radiation unless we can ever get his Cushing's under control. So the question of what is tumor related versus Cushing's related remains unanswered.
Cushing's: Here it gets weird; I fed Skippy and gave him his Vetoryl expecting a Stim test; Purdue kept him (I thought for the Stim, to clean up his butt and get a surgical consult on his peri anal adenoma.) He was there most of the day and when the student called she said they had done an endogenous cortisol test and his cortisol was 3.4 (normal range is 1 - 6). I said huh, what? Based on this test they felt comfortable increasing Skippy from 10 to 15 mg. BID and they will perform a full blood panel and ACTH stim at the end of October. (When Scott-Moncrieff is back in clinic.) Based on my talk with her, I have surmised that their theory of the case is something like: we know Skippy continues to have uncontrolled Cushing's (because of his symptoms) and the current 10 mg. Vetoryl BID that he's been on since 9/9 is too low. (S is now 26lbs.) I'm uncertain as to why they are not following the Drecha protocol. I suspect the reason was either to save me money or because I sent the McFarlane article. (She mentioned that they couldn't do a pre pill test that day because I had already dosed him.) Whatever the reason, I am growing more uncomfortable with where this stands. Skippy's cortisol has not been tested since last March! I know his case is VERY atypical but I worry that waiting another month for an ACTH stim test is too long. Skippy has had no response to the increased dose but it's only been three days.

Peri anal tumor: Dr. Scott Moncrieff recommends no surgery unless Cushing’s is under control. She had his butt shaved and cleaned up his adenoma and the six and growing number of suspected papillomas that have spread above the base of his tail. He would be welcomed at a leper colony. Purdue quoted 2500 to 3500 for the surgery. I am going to explore Co2 laser as an option and think about this problem in light of Purdue’s prognosis of survival for a year, beginning last July...His butt is a bit of a bloody, poopy mess but no discernible pain. My new groomer: Purdue Vet Clinic.

Radiation: Just a brief additional comment on Skippy's radiation. Likely it is too little too late. Too little because he had very high BP and pneumonia by the time I decided to try radiation. The concern was that he wouldn't survive anesthesia. It was too late because neither Purdue recommended nor I sought an MRI until six months after the Cushing’s diagnosis. The goal was palliative, i.e., Skippy won't live long enough to experience long term radiation effects and the SRT dose was small, 3 treatments of 8gy. I know very little about radiating pituitary tumors, but as I have read more this summer it seems likely that a longer treatment protocol would have led to a better outcome.
Overall Skippy remains a docile boy and although his quality of life is limited by the ravages of Cushing’s on his body and his mind, he seems sedate and evidences no pain. He can walk when he chooses to, even at a brisk pace. He is more alert, tells me when he has to go out (most of the time), wagged his tail when I returned from Maryland, follows my movements around the house, eats well and drinks rivers. His urine remains diluted but he has no vomiting or diarrhea. His hearing remains impaired but he can hear. His blood pressure has fallen to 110 and they cut the Benazepril dose in half. Skippy had a CBC at the end of August and the numbers aren’t great. His potassium was normal then but that was before Vetoryl was restarted. In light of the possible interaction of Benazepril and Vetoryl, I am watching him closely. Of note otherwise:
ALT 229 Ref Range 3-69 IU/L
Alkaline Phosphatase 1003 Ref Range 20-157 IU/L
GGT 126 Ref Range 5-16 IU/L
Cholesterol 411 Ref Range 125-301 mg/dl
Lipase 6917 Ref Range 104-1753 IU/L

Thanks for enduring the long post if you made it to the end. I don’t know if the detail is helpful to others or not. I also don’t know what I am missing that I should be paying attention to. I could take him to the local vet for an ACTH Stim test and a CBC next week or just send Scott-Moncrieff an email expressing my concern. Any thoughts on the Stim or on what else I’m missing? Thanks so much.

Carole

Dear Carole,

Thank you so much for your continuing updates on Skippy. Given the complexities of his treatment journey, I am guessing it may be draining for you write them :o. But definitely, we want to know how you guys are doing and all the info and experience you share is of great value to us all.

There is no need to be sorry about reminding us of this new testing protocol!!! I'm not sure whether it had ever been openly discussed on the forum at all prior to this -- we may have just talked about it a bit among us staffers, but without any followup. I agree with you totally that it may offer a superior method for monitoring, and I'm awaiting more feedback from Dr. Bruyette. He told me that he'll be happy to write up some thoughts about it, so I'm eagerly awaiting them and will certainly share them here.

As far as the ACTH testing, I actually might be inclined to go ahead and wait until the end of the month, myself. Skippy's baseline cortisol level (I assume that's what they meant by "endogenous" testing) must have seemed robust enough to the folks at Purdue that they are not too worried about him crashing with this increase. And if you wait until the end of the month, you'll have greater confidence as to the true and long lasting effect of the increase. Of course, all bets are off if he worsens. But I know you already know that.

So once again, thanks so much for checking back in. And I'll definitely return, as well, when I hear back from Dr. B.

Marianne