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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Oh Carole, I am sad to hear that Skippy continues to suffer so greatly.
I have not much more to offer other than comfort and supportive thoughts as you both continue to fight the good fight.
May all of the doggie angels above shine healing light down on you both as you travel this difficult road :( it really does break your heart being with them as they suffer and improve, suffer and improve, suffer and improve - what a roller coaster this terrible disease is.
You are in my thoughts.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I took Skippy for his follow-up visit at Purdue today. His IMS, Dr. Scott Moncrieff said that essentially I need to come to terms with what I can live with in terms of his quality of life. She feels certain that his lethargy, unwillingness to walk, interact much, play, etc., is related to his Cushing's. But, even with treatment with Vetoryl, this could be the best that he will be. She does think, and I agreed, that it's worth a shot to try him on a low dose (10 mg. BID) to see if it will improve his muscle atrophy, lethargy and unwillingness to interact that are my major concerns. I can live with the PU/PD, thin hair, bloated belly, etc. And, I'm grateful that he has not developed the bevy of other diseases associated with Cushing's. I did raise the issue of putting Skippy down and we had an extended conversation about "the end" for Cushing's dogs with a macro. She said that most often it's an owner decision because of nuerological issues and/or Cushing's related disorders, e.g., pancreatistis, liver or kidney failure, etc.
Skippy was not stimmed today and she doesn't plan to stim him again in a few weeks. We know he has Cushing's and her goal is not to get his cortisol under control but to see if we can improve his quality of life with a very small dose of Vetoryl. (Remember Skippy couldn't tolerate Vetoryl last winter.) Purdue did run a chem test to check his kidney values as the number was 100 in June, but I don't have the results.
I bathed Skippy before taking him to Purdue today and the adenoma on his butt bled again and continued to bleed modestly through our visit. They cleaned the adenoma and Dr. Scott-Moncrieff thought I should wait to see whether the Vetoryl might reduce the tumor, sex hormone related, before taking any further action. Her concern about the local vet removing it is that a slip of the knife by a less skilled doctor could leave Skippy incontinent.
How do I feel about all of this? Not great. I was on the edge of or in tears for most of his time there. I do understand that I need to come to terms with what I can live with. Skippy is not in pain and he doesn't have a vast array of Cushing's related issues that so many others struggle with. His nuerological symptoms are improved. Maybe he and I are fortunate. While at Purdue today, three or four people commented, in passing, about how cute he is. From a distance, he does look quite normal.
A funny final note. After Skippy let loose with pee along Purdue's hall way at the end of our visit, Dr. Scott-Moncrieff came strolling by. I asked her about water therapy for Skippy. She initially thought I was asking about water torture. I said "no" that's for me to alter my current state of mind. She suggested that I take him to the river since he used to love to swim. She thought a change of scenery would be good for both of us. To be continued...
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hugs for you and ear scritches for your cute little guy.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Big hugs! I had a laugh about the water torture comment.
The river might be a good idea, you'd be right with him, as not sure how strong he is and wouldn't want him to get into trouble with swimming. Would he engage with a puppy pool in the yard? (kid pool basically) He's small enough he might be able to try to swim in it.
It isn't easy going through this and you've been such a trooper, you and skippy both.
I think quality of life is most important, so maybe it would help to try a small dose of vetroyl. But I would want to know what his stim is first, that's just me, I like to know the numbers so I can see what the changes are numerically in addition to what I see happening, as for myself, I was always too close to mollys issues to feel like I could determine things by sight alone. I think that might have just been me though.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I am very appreciative of everyone's support regarding Skippy's saga. Your kindness is touching and I'm grateful.
While I still don’t have the numbers, the student intern did call with a Skippy follow-up:
• Liver: okay, no dramatic change. Keep him on the Denamarin.
• Kidneys: Proteinuria improved from June.
• Aspirated nodule on rear leg for the third time. They are not concerned about lymphoma any longer. Too many red blood cells in the draw but Skippy is not anemic.
On the 29th I started Skippy on a Vetoryl dose of 10mg. BID. Dr. Scott-Moncrieff’s thinking is as follows: Skippy clearly continues to have Cushing’s. He has multiple symptoms. I will not see any improvement in his quality of life unless I treat. Yes, it is standard protocol to treat Cushing’s after radiation with Vetoryl or Lysodren. The reason for the low dose is his intolerance of the drug before radiation. If I understand, her goal is not to necessarily lower Skippy’s cortisol so that he is under control in accord with the Drecha protocol, but rather to see if lowering his cortisol will improve his quality of life if he can tolerate it. Thus, no stim test on the 29th and no two week stim. He goes back to Purdue on September 26th and they will decide whether to stim him then, unless he show’s intolerance before that. If so, I will stop the Vetoryl.
After five days on Vetoryl, he has improved, in some respects. He is brighter, much more alert and is now willing to take short walks. He has become a little picky about his food, declines treats and sometimes kibble, but generally is eating well and he could sure afford to lose a few lbs. I believe that his hearing is improving but that is likely coincidental. His stool is now soft and today I saw a little tremoring in his rear end. His hind legs are still pretty weak and he struggles to get up and often thumps down. He sleeps well, no panting and a little less PU/PD although his urine remains clear.
From a practical standpoint, the biggest problem of the week is Skippy is experiencing spontaneous bleeding from the perianal adenoma. It’s not profuse bleeding but continuing intermittently after Purdue cleansed it on Tuesday. It’s a mess and I’m applying triple antibiotic cream but it’s not doing much. Dr. Scott-Moncrieff said let’s wait and see if the Vetoryl might shrink the tumor. But I suspect she may have said let’s wait and see because the surgery is expensive and I expressed reservations about affording it in light of Skippy's tenuous hold on life. And, he’s had the adenoma since last December. I asked her about the local vet removing it and she was not in favor of that strategy. I sent her an email today saying that unless she has some confidence that Vetoryl could shrink the thing, Purdue needs to remove it. (I read somewhere that Lysodren might shrink it, but I can’t find anything to suggest that Vetoryl would.)
Either because of my emotional state about Skippy or because Dr. Scott-Moncrieff thinks his death is imminent, Purdue comped my last visit and his meds, including Vetoryl. While I am embarrassed to be such a wimp, this has become a long slog indeed. I am very grateful to Dr. Scott-Moncrieff for her compassion, skill and knowedge.
If anyone has heard of Vetoryl shrinking a perianal adenoma, please let me know. I have not searched this forum but I will. For anyone wondering, this is a relatively rare tumor near the anus, usually benign, that is caused by overproduction of sex hormones. Most often it afflicts intact dogs; Skippy is castrated.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
my intact cush dog flynn [border collie] had one. it was bleeding on and off indeed.
i had the adenoma removed.
it is not a difficult operation and it was inexpensive.
vetoryl did not shrink it. and cream didn't help either
flynn was long haired, so it was a real mess.
my local vet did the surgery using local anaestetic and a seditive.
no big deal at all. keep the stool a bit softer for a few days.
don't let purdue talk you into expensive surgery.
skippy will feel a lot better after removing the adenoma.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Thanks so much for the feedback on the perianal tumor. My local vet felt confident that she could remove it for a fourth of the cost of Purdue surgeon and that it is not a big deal. I haven't heard back from Purdue but the tumor remains a mess. I wonder if they don't want to mess with it since he just started Vetoryl ten days ago.
This round, and for however long, Vetoryl is definitely helping Skippy. PU/PD is hugely better; appetite has diminished but no discernible change in belly, hair, etc. The change that I care most about is Skippy is beginning to show signs that he wants to live. He is walking much more, actually trotted yesterday. A tiny bit of tremoring but his rear legs are stronger. I know he will never be the Skippy of even a year ago. I'm still not seeing a wagging tail and he remains somewhat aloof but attentive. My decision to put him back on Vetoryl was yet again made out of no good options. Skippy has no long haul so whatever I can do now to try to help him will have to be good enough.
I will have a stim test done when he goes back to Purdue at the end of the month. Next week, I am flying to Maryland for ten days and Skippy will remain here in Indiana but I will check on him daily. I will deal with the butt tumor upon return. In the meantime and on behalf of my friend with whom we are living, I have another question. Skippy has horrible, stinky gas, frequently. I did change his food to low fat Wellness Core kibble about ten days ago when he started the Vetoryl. My friend's dog is eating the identical diet with no gas. Skippy usually gets chicken breast or beef mixed in with his kibble. If others have experienced this problem or have a clue what I can do, please let me know. His stool is soft but not diarrhea. Thanks so much.
Carole
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Lena had terrible gas, Carole. You could hear and feel it, not to mention the smell! I couldn't figure out if it was the Vetoryl or the soft dog food I was giving her to make sure the pill was fully absorbed since she wouldn't eat the kibble anymore.
We got used to it!
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Thanks Joan, just another example of your enduring love for Lena. I may be able to tolerate it; not so sure about my friend who will be his caretaker for ten days! This may have started before he went back on Vetoryl but clearly it is worse now. Maybe more frequent trips to the bathroom will help. Best,
Carole
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I am glad that Skippy is doing okay on the Vetoryl! I hope he continues to... poor little guy has been through so much. Unfortunately I don't have any suggestions for the gas, though feel for you (and your friend). I have a rather pathetic olfactory system so those things don't usually bother me... but my husband must bear it and I hear about it!
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Re: Skippy, 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.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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. :)
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Very interesting article, Carole.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
2500-3500 to remove the adenoma????????
i paid 200 at my local vet to remove my flynn's adenoma. including antibiotics and painkillers. [4 years ago.]
this operation is no big deal at all!
i think your surgeon wants a new ferrari.
ask your local vet what he or she would charge you.
my flynn was a long haired border collie and his butt was a smelly mess.
despite of the cushing's he recovered very quickly.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Just a thank you for sharing your experience in having Flynn's adenoma removed. I agree about buying a Ferrari. I have been checking around and have found a local vet that offers CO2 laser. I likely will call and explore that option. Skippy doesn't go back for a Stim test until the 24th and IMS has said no surgery until cortisol is under better control.
Overall, Skippy is doing better although the last two days we are struggling with loose stool with some blood, likely accompany the stool. Haven't stopped the Vetoryl yet but will tomorrow if it continues. Treating with Imodium which is probably not the best. I have an email into Purdue regarding this.
Maybe of interest to some of you: I am going to ask the IMS at Purdue to test Skippy's cortisol with an ACTH Stim test and utilizing the McFarland protocol, i.e., MCFarland protocol: pre Vetoryl blood draw and then a second blood draw after dosing with vetoryl and food. Then he will have an ACTH Stim test, if IMS agrees. It is important to begin to examine whether or not the McFarland protocol is effective in testing cortisol levels of Cushing's dogs.
Skippy remains fairly lethargic, but will walk, even trot, after initial reluctance. He is far more interested in things around him, e.g., dogs, people, cats and me. He has been eating well but less and losing weight. His behind remains a disaster, large black growths continue to appear and enlarge across his tail area. Took him to groomer yesterday who had to scissor cut because of thin skin and these bleeding polyps-sores. NOT CC as best I can tell.
Neurological symptoms are limited to a loss of hearing although Skippy is not deaf - yet.
Quality of life is impossible for me to measure as he is my dog and I so dearly love him. But, I don't believe he is in pain and seems to enjoy his life within its limits. I still have hope that Vetoryl will improve his quality of life for awhile if we can get his cortisol under control. I don't know what to think about these likely sex hormone growths across his tail.
Two steps forward, one step back. Thanks,
Carole and Skippy
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Awww, Carole. It's so hard when we love them so. I hope something starts to work for him. He sure is trying, as is his Mom.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Carole, I agree with Joan 100%!
Also, I commend you for experimenting with this new monitoring protocol. Unfortunately, I've not yet gotten Dr. B's assessment. But if and when I do, I'll definitely add it here. In the meantime, I'll be so interested in finding out how things go for Skippy. And I'm surely hoping for as many good days as are possible for our brave little boy.
Best wishes always,
Marianne
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
It's good to hear from you, Carol. You are such a great mom and sweet Skippy is so very lucky to have you on his side. I hope the Vetoryl gives the results you are hoping for and that his poor behind can get some relief.
Hugs,
Leslie
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Oh that would be awesome Carol if Purdue will do some comparison testing using McFarland protocol.
It really does sound like skippy is better than he was before the radiation from what you have said. To me it sounds like it anyhow.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Thanks for your comments and support. Yes, Skippy is better than before radiation, no question. Every week is a new challenge however. This week, it's the diarrhea that now has blood. I sent his IMS, Dr. Scott-Moncrieff an email early yesterday asking should I stop Vetoryl or treat or both? No response yet. (She could be away, busy, whatever. She's only in clinic a couple of times a month as she is the head of their IMS.) I then called Skippy's local vet who is collaborating with IMS. She called Purdue IMS Department expressing concern that Skippy may be overdosed on the 15mg BID (he's now 25lbs); they were unaware of any problem with Skippy. Last night, initially Skippy wouldn't eat but then did eat and I again dosed him. (I know my decision is not in accord with Drecha's guidelines.) This morning I'm out of 5mg Vetoryl so I will run to some vet, get the meds and dose him again if he will eat. Local vet will Stim him later this morning and treat diarrhea. I truly hope I'm doing the right thing in continuing Vetoryl. Nothing about Skippy's illness is typical and nothing about his treatment has followed any protocol. All of which is compounded by the unavailability of his highly expert but sometimes inaccessible IMS. So frustrating...
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Just received an email from IMS; she says continue Vetoryl and let's treat the diarrhea for a couple of days. Stop Vetoryl tomorrow if diarrhea isn't cleared. She will test Skippy's cortisol on the 24th using ACTH stim and McFarland protocol. I will update when I know more.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Did the diarrhea stop? sometimes antibiotics plus a good probiotic will help with that.
Yay that they will use both protocols. You'll be the first to do a comparison!
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Everyone,
I just charted the past week with Skippy and am still struggling but plowing forward. Started the boy on the metronidazole on Wednesday pm. Two more doses on Thursday and another dose on Friday am, along with restarting the Vetoryl on Friday pm and no metronidazole since. He has been very lethargic the last couple of days but has been eating; he's not going out to pee much or poop at all. (Although my friend thinks he may have pooped in the backyard last night since she let him out for awhile in the middle of the night and he came back kicking his feet.) He is walking, at first reluctantly but then briskly for a few blocks. I will try him further soon. My fear is overdosing him on Vetoryl. I could reduce the dose back to 10mg BID or maybe even 15 am and 10 pm. I so hoped that the radiation would kill the Cushing's but it's not to be. And, now I am learning (relearning) all of the finer points of dosing, testing, tinkering, watching, stalking and whatever. Live in hope, die in despair and if the diarrhea reappears I will stop the Vetoryl and take him for a stim immediately.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
That is always the hope that the radiation will completely get rid of the cushings, but I think that most dogs end up back on vetroyl. I wonder if it is because the pituitary is damaged from the tumor and doesn't actually recover normal functioning in cortisol production.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Good speculation Sharlene; I guess there is no way to know if the pituitary is damaged. Just keep on treating the symptoms...Skippy is all over the place, moments of normalcy with a fair amount of lethargy. He's becoming a gourmet people food eater, declining canned or kibble at every opportunity. Also, doesn't want to eat at all early in the morning. I'm eager for cortisol testing.
GOOD NEWS: The perianal adenoma is shrinking and drying. No bleeding in a week or more. It's far from gone but I am astonished that Vetoryl would help control sex hormones. In September when we restarted Vetoryl, his IMS, Scott-Moncrieff wanted to wait and see if Vetoryl would reduce the tumor. I was highly skeptical. We shall see if it will reduce further.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Well that would be excellent if it actually helped to get rid of the adenoma without surgery.
I think both vetroyl and lysodren help to control sex hormones if memory serves me.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I am actually surprised the Vetoryl is lowering and not raising the intermediates. ;) Per the treatment sheet by Dr. Jack Oliver et al from UTK for Atypical Cushing's:
Quote:
Trilostane always increases 17-hydroxyprogesterone (some cross-reactivity with pregnenolones in assays??), and frequently increases estradiol and androstenedione as well
Of course, new things may have been discovered since then and Skippy may be among those in the forefront who disprove this current theory on Trilostane and intermediates. ;) Regardless I am VERY glad his butt is getting better and I know the two of you are! :D
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I guess it could be a case of false observation, like false memory.:) He goes to Purdue tomorrow so I'll see what they think. It has definitely shriveled and is much scabier. (This problem is disgusting especially since Skip is having another bout of diarrhea and no eating that started two days ago.) I have stopped the Vetoryl, emailed the IMS and restarted diarrhea treatment and he ate eagerly this morning. The timing is terrible in respect to accurately testing his cortisol. But, if he won't eat I can't treat. He walked this morning but no attempt to poop. What I know for sure is I have one high maintenance pup. If I were working, caring for him would be impossible between his dietary proclivities, his bathroom needs, and medicating him with five different meds twice daily. (I am losing the Denamarin battle; he spits out even the tiniest pieces of the so called chewables.) I don't think his cortisol is too low, but symptomatically...I know nothing.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Molly got tired of her denamarin treats too and would just turn her nose up at them. I think, remembering back, that I switch to a different brand with the same main ingredients but a different size/flavor.
Well, yes, that does make it more difficult to get an accurate reading of where cortisol is if he isn't on vetroyl due to the diarrhea, but not to be done about that.
Ugh, I'm sure that isn't any fun taking care of and keeping clean his bum with the diarrhea. Good times eh. :) :)
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hey Sharlene, Yep high maintenance for this little boy. Purdue visit today was inconsequential as of now. They did a full blood panel, urine, blood pressure, but no cortisol check. BP was 110 but no other results yet. They will test basil cortisol but only to assess if it's too low. My sense is that she, Dr. Scott-Moncrieff has no real idea as to why Skippy is cycling thru diahhrea, won't eat and severe lethargy. I'm convinced it's the Vetoryl, i.e., too much. But he still has many clinical symptoms of Cushings. There was some speculation that his symptoms may relate to his continued response to radiation. They ask me to try a Royal Canin canned food to try to regulate his food. I did tonight after warming it and with beef broth. He wouldn't even sniff it although he is hungry. I fed him chicken and rice!
My plan next is to wait for the basil cortisol number and then reduce Vetoryl back to 10mg twice a day. I plan to have a stim in 10 to 14 days either at Purdue or local vet and then see where we go. Incredibly frustrating and making me crazy. My mistake was to not stim him immediately after the last episode of diahhrea, no eating and lethargy!
Sorry, no comparison between ACTH and McFarland yet...
Oh, IMS thinks the ademoa may have grown, or at least, changed! They shoot horses...
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I received this email last night from IMS: "Skippy’s cortisol this morning was 5 . Hard to interpret since he did mot have consistent treatment for the last few days. He is also azotemic again (increased BUN and Creatinine). I am checking his urine for protein. Should have that back by later tomorrow morning. I think we should go back to 10 mg twice a day of Vetoryl and recheck his blood work in a week or so. Have to figure out if vetoryl is making his kidney function worse." I think this means he is in kidney failure possibly caused by proteinuria? I know that one of the possible side effects of Vetoryl is renal disease. But will reducing the dose help or should I ask her about stopping Vetoryl altogether? Is this condition otherwise treatable? I have no numbers so I don't know how bad this is.
I dosed Skippy last night with 15mg (before seeing her email). Don't know about diarrhea as he went out in dark of early morning and I half asleep. Hasn't moved since 7am, no interest in food, let alone Royal Canin selective. Skippy's lost 5lbs since August. Thanks for any insight.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
No insight here, but wanted to comment to let you know I'm still following along and keeping you both in my thoughts.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Thanks for your kind words. My pen pal, Dr. Scott-Moncrieff checked Skippy's urine and proteinuria is now secondary to chronic Cushing's. She said to stop the Vetoryl as she is concerned about dehydration. Also, we are stopping the Amlodipine as his blood pressure continues to be low. Next Tuesday they will perform an ACTH, or maybe just measure basil cortisol and another blood panel to help develop a treatment plan. I believe that if his kidney values were life threatening, she would tell me, not that I could do a thing about it.