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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I hope Skippy is feeling better this morning!
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
My thanks to all of you for your concern about Skippy; he is a little better as he has returned to eating with the offer of very enticing food and stopping the Vetoryl. All of his behavioral (neurological?) signs continue but slightly different from when he's on Vetoryl. Purdue called yesterday to check-in; IMS agreed with stopping Vetoryl until he's seen next week. Purdue does have an MRI clinical trial underway but don't know if Skippy would be eligible. Finally, I contacted Holly on this forum as she is the one owner who I could find whose dog underwent radiation successfully. She said she is travelling and will respond this week end but that Skippy's symptoms were "remarkedly similar". And, of course there is the possibility that he has a malignancy in some other part of his body.
I wish I had clearly understood three months ago what a good response to Vetoryl looked like. But that's my bad and we are where we are. I pushed as hard as I thought I could, but...Thank you again and I'll post when I know more.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Carole -- so glad that Skippy has decided to eat again. I hope that the IMS has good insight into Skippy's issues.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
It doesn't hurt to ask about the MRI clinical trial. All they can say is no.
Well if we all knew what we needed to know at the beginning of this journey, it would have been easier for sure. Even reading what it Should look like or what one hopes it will be, then has to be applied to what is and that can be darn difficult.
You are doing a great job with the hand that has been dealt and that is all you can do. One day at a time.
Hugs!
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Thanks Sharlene, I wonder how many times in our lives that we wish we were smarter, more knowledgeable, wiser and sooner. Such is life. But I am so thankful to all of you on this forum for your wisdom, support and experience. You all have helped to advance my knowledge light years. While I know that the next chapter in Skippy's life is likely to be the last one, I have learned so much and on his behalf, I am grateful beyond words.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Carole, you and Skippy have been on my mind. How did the appointment with the specialist go yesterday?
Laurie
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hey there, checking in on your and Skippy!!! hows it going?
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Laurie,
Thanks for asking about Skippy and I’m truly sorry that you can’t find a pred dose to help make Charlotte more comfortable; I so appreciate and share your struggle about what to do next. What follows is a lengthy Skippy update:
Relative to last week when Skippy wouldn’t eat and looked as if he was dying, he is vastly improved. The tremoring has nearly stopped; he is walking again, interacting more and is willing to engage a bit. Also, Purdue thinks the adenoma on his butt is actually smaller. Go figure. But, lest anyone think this is a radical transformation, Skippy is far, far from my dog of six or eight months ago in respect to his cognitive and behavioral functioning. And, of course, off Vetoryl, the eating, drinking and peeing are back to square one…
Dr. Scott-Moncrieff saw Skippy and she had carefully reviewed his history, ultra sounds, etc. She had told me last week to stop the Vetoryl and Tuesday she said that Skippy clearly cannot tolerate the drug at any dose. At this point she does not think he has a macro tumor based on his symptoms. (He is eating, no head hanging, circling or going into corners.) But now no barking, lots of lethargy and I still see some staring. He is still mostly distant but is willing to be petted. I ask about senility but got no real answer. Scott-Moncrieff said that 40 to 50% of all dogs with a pituitary tumor will develop a macro.
They examined Skippy for several hours: measured his lymph nodes in six areas as there is some suspicion of lymphoma and they may want to biopsy; they measured the adenoma again, looked at his gait, looked at his belly and the pot has decreased slightly. They took a urine sample and want to secure a baseline cortisol next week. His BP has jumped from 150 to 220 in the last two weeks; they will test again Friday and if still high they will medicate; his heart has a small murmur but otherwise his liver, kidneys and pancreas are okay. Finally, they dilated his eyes and said there was no retinal detachment.
Scott-Moncrieff's recommendation was to try Skippy on Lysodren or to not treat at all if I can endure the Cushing's symptoms. She said that if it were her dog she would not do an MRI yet and she committed to following Skippy and managing the induction if I decided to try Lysodren. I failed to ask whether she thought that Lysodren, if successful, would improve energy, alertness and cognitive functioning or just the PU/PD.
I will watch Skippy carefully for the next three weeks and see how he is cognitively as I really don't know what I will do next. I am tempted to try Lysodren now that Scott-Moncrieff has agreed to follow Skippy. But, I still suspect he has a macro and I'm just fattening frogs for snakes with further chemical treatment. I can live with the PU/PD and I will provide palliative care to Skippy if this is as good as it gets.
Finally, I need to think about whether I request an MRI and would pursue radiation if he has a treatable macro. Last week I was sure. Now, I'm not so sure after doing more reading and my very helpful correspondence with Holly B. (Holly said she would post here, but until she does and in brief summary: after her dog, Nola underwent successful radiation and was great for some months, the Cushing's and new behavioral symptoms have come roaring back-now sadly, Holly is providing palliative care.) Also, for Skippy, the lymphoma must be ruled out but Purdue is doubtful that he has lymphoma.
Emotionally, I have moved from frantic efforts to save Skippy to being stoically determined to learn whether he even can be saved. I am deeply troubled that four different vets strung me along for nearly six months without ever telling me that there was a forty to fifty percent chance my dog has a macro tumor and that chemical treatment would not control his symptoms. An MRI in November or December would have cost little more than the thousands I have spent on Vetoryl and the fistfuls of diagnostic and near weekly stim tests. Because most pet owners will do everything within their capacity to help their Cushing's dog, veterinarians have an ethical responsibility to be honest and clear about the complexity of Cushing's, the limited research, the odds that a pituitary tumor will or has grown, and their own often limited understanding of treatment protocols that may result in harm or the death of someone's pet. I know that pets are merely property in the United States, maybe in other countries too. And, the standards of care are much lower for animals than for people, but in the US alone, we spend nearly 60 billion on pets annually, an estimated 15 to 20 billion goes for veterinary services. I know that veterinary practice is a challenging profession. However, collectively we have tremendous power to demand ethical, skilled and informed care. Whatever Skippy’s future holds, I have now become a highly discerning consumer and fierce advocate. I will not give up without answers and accountability. And, I hope you all won’t either.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I know you will never give up, but that you will make the decisions that are best for Skippy, whatever that might be, pallitive, further testing, treatment, whatever.
I don't think I ever heard that 40 - 50% will have macros. That seems very high. I don't think we've seen that sort of ratio here on the forum, based on the number of members we get, although we have seen a lot, they tend to in general be with the short nosed breeds like boxer, boston, bulldog, etc. As far as an in general statement goes.
You will likely be able to make a decision about lysodren once you know what the cortisol levels are now.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Dear Carole,
Wow, poor Skippy had quite a day! You are an amazing dog mommy and have done so much to help him. How stressful and frustrating for both of you. Since I've joined here, It's just really hard to believe that so many vets have gone through all the years of schooling and experience in their offices and still don't have a clue about Cushing's and the proper dosing protocols. I do believe that Whiskey was misdiagnosed, and somehow survived being on Vetoryl all those months. I hate to think about the small fortune I spent on ACTH tests & the pills, just greatful he survived & that I found this forum which gave me the knowledge to see the signs & stop the drug on my own. I don't even like thinking about it or admitting it, but its true.
Please know that I think about Skippy and you often and wish you both all the best. Sending huge hugs to both of you, Annie & Whiskey
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Carole, thanks so much for sharing all the info you have learned from Dr Scott-Moncrieff. I too feel like i would have probably saved money by having a MRI early on rather than spending so much money on meds and ACTH Stim tests. But then nobody ever told me a macro couldnt be controlled with the meds. And honestly, when this all started at Davis, they didnt think we were dealing with a macro. She showed no neurological signs, except for the tremors and nobody could tell me what was causing those. But after reading so many threads here it seems that most of the dogs with tremors are dogs with macros, or suspected macros. I feel like if i knew for sure i would have approached things differently but i trusted the vets at Davis and they were most likely wrong.
Im shocked to hear that Dr Scott-Moncrieff feels that such a high number of pituitary cushings cases will become macros. I was led to believe it was a small percentage (10-15%). And from what im learning, dogs with macros should most likely be treated differently than the ones with micros. For instance, these herbs i was giving Charlotte are for a dog with typical cushings symptoms, and may be helpful for those, but Charlotte is no longer eating well, no pu/pd so they may actually be causing her more harm than good. But yet the pred doesnt seem to be helping much either. Im with you in wanting to know more. I feel so many here on this forum are advocates and its sad but it seems there is more info here than we are getting from even the specialists.
Laurie
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Dear Laurie,
I agree that the revelations come by the day, the week and sometimes by the hour. I will ask Dr. Scott-Moncrieff for a cite to support her statement regarding macros. But, I wonder if it is her personal experience and observation. If accurate and I more and more believe it may be, it's scary and raises a host of other questions about diagnosis, treatment and prognosis for our dogs. There are a significant number of dogs on this forum whose response to chemical treatment is questionable. And, the investment they have made, like you and me, in trying to save their dogs, is astronomical. I'm not complaining, I would do it again (with far greater critical questioning),But, I believe that the ignorance regarding this disease is rampant among vets. I took skippy for a BP measure today and vet # 3 (at the local clinic) seemed dumb as dirt about Cushing's. Clearly she was following Scott-Moncrieff's direction as to testing and treating.
I had another conversation later today with the Purdue, fourth year vet student that I will share later. It was equally strange and uninformed.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I mentioned this over on Charlotte's thread but i wanted to respond here too. It seems like dealing with a pit macro is so different than dealing with cushings in general. The more i learn and the more symptoms i see im thinking we have to take a different approach. For us radiation isnt an option but then its not a guarantee anyway. And the drugs can be so harsh and cause even more problems. But its sad that so many vets are so in the dark about all of this. Im still going to research some alternative treatments for Charlotte but of course i understand it may just be for a short time to give her quality of life for the time she has left.
I hope you and Skippy are having a good weekend!
Laurie
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Laurie,
I posted an article I found about milk thistle on your thread; I sent an email to the doctor about his research and will let you know if I hear anything.
Skippy remains a lethargic puddle; sleeping or laying prone about 23 hours a day. Last Friday I started him on Benazepril as BP is well over 200. He is eating some but has mostly stopped walking, maybe caused by the current bout of diarrhea. I called the vet for meds as the Imodium isn't cutting it.
Purdue called last Friday and they (and I) are very concerned about the new BP problem. The student mentioned Lysodren again and I asked her to talk with Scott-Moncrieff about the MRI clinical trial. I haven't heard back. Local vet will check BP again this Thursday; I am going to ask them to bring their machine and take the BP in the car. These vet visits are waaay too stressful.
I now have no idea of what's next or why. I have another appointment with Scott-Moncrieff on April 4. I guess they will check his lymph nodes and baseline cortisol and ask me about Lysodren. I have no answer today and I'm not sure I'll have one then.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Thanks for the article on milk thistle Carole, very interesting! I'm so sorry to hear about Skippy. I'm glad he is still eating, and I assume he is drinking. Charlotte won't drink so I have been putting small amounts of water down her via syringe.
Charlotte had a very bad night last night and at 3am I had pretty much decided to call the vet in the morning and arrange to end this for her. However, i got a message this morning from the Bowen therapist and she wanted me to know she had a supplement at the pharmacy waiting for me to pick up. She also moved our Wednesday appointment up to tomorrow morning so I'm going to see what happens over the next few days. The supplement she ordered for me is turmeric which I was well aware of. I had made a golden paste for Charlotte a month or so ago but I couldn't get down her since she wouldn't eat anything added to her food. These are capsules and the vet this therapist works closely with highly recommends them. Here is a link to an article he sent me:
http://www.turmericforhealth.com/tur...og-brain-tumor
I would also like to try the milk thistle but I'm only going to add one thing at a time. I'm headed over to pick up the capsules now and I'm hoping I will see some improvement with them and the treatment tomorrow morning. Charlotte is sleeping peacefully right now after having a fairly high dose of pred and tramadol early this morning. I will keep you posted on our progress.
Laurie
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Laurie, I hope these holistic folks can help you with Charlotte's symptoms. I do understand how painful and frustrating it is to watch your dog suffer, alone and stumbling along to try to figure out what to do next, more pred, no wean her off the pred, end the madness, and then there is the CC and the symptoms. Sometimes, I just want to run away as it all seems so futile.
Skippy's vets are now actually collaborating. I received a call yesterday from the local vet, Dr. Timmons, to ask if Purdue has called with Skippy's urine creatinine results. No, they hadn't. The issue is that Skippy now has proteinuria, but still at a low level that is caused by the extremely high blood pressure that is caused by the Cushing's. Timmons called Scott-Moncrieff and they discussed upping/changing Skippy's BP meds to a stronger drug; they decided not to because the boy is so sensitive to meds that Scott-Moncrieff felt it would bring his BP down too fast. This all occurred in the past two weeks. Perhaps the five days of BP meds and now a round of Flagyl are helping some. He has moved from puddle status to ambulatory, walking and pooping are now slow normal. Eating is back to killer hunger, drinking buckets of water and peeing like a drunken sailor.
And, not to minimize the fact that these new problems are not potentially lethal or disabling, I continue to struggle to figure out the behavioral/cognitive problem. I have researched macros, senility and canine cognitive dysfunction until my eyes have glazed over. Skippy doesn't fit any of the profiles though he does have some symptoms, i.e., greatly reduced interaction, no playing, now occasionally staring and sometimes slow walking. But these are sometimes Cushing's symptoms and now the high BP, which likely gives him a massive headache. I want a psychiatric referral, first for me and then for Skippy.
I'm down to two choices (doing nothing is not a choice). Try the Lysodren after he is medically stable and see if it will work or an MRI and if it is a macro I won't have to put him through the Lysodren protocol. I would love for Dr. Scott-Moncrieff to take Skippy home overnight and observe him, but, since that ain't gonna happen... I will ask if the "behavioral" or is it the neurology people at Purdue could have a gander at him and share their impressions. If any of you happen to read this post and have any ideas or thoughts, I would greatly appreciate your feedback.
Oh, Laurie I ordered some so called "pharma grade" milk thistle from Amazon. If it doesn't help Skippy, who now has his own cabinet full of unused meds, I will take it alongside whatever strong liquor I plan to resort to next! Thank you,
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Oh Carole, I can so relate with everything you said! Doing nothing was not an option for me either. I'm exhausted from research and the care (not complaining) and the mental stress of not knowing what to do.
I just got back from Charlotte's appointment with the Bowen practitioner and will be posting about it on Charlotte's thread.
You and Skippy are in my thoughts and prayers!
Laurie
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Carole - I took some time to read this thread and although I've connected with you on the thread for my Mojo figured I would chime in here too.
Mojo has the exact same cognitive issues as Skippy and as you know, we are also likely dealing with a macro. I find some comfort in knowing that there is someone else dealing with these behavior/cognitive issues along with me - at least I am not sitting on this bus to actual insanity alone!
Please keep this forum posted if you have a breakthrough and I will do the same.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Carole,
I just wonder if taking a video of Skippy would help the vets see a better picture of what is going on?
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Thank you, a video is a good idea if I can get him to do something besides sleep, eat and pee. Skippy went to the local vet this am for a BP check; it's even higher by another 10 points. Without further consultation, Dr. Timmons added 2.5 ml of Amlodipine to Skippy's meds to try to bring BP down. She said that without question, Skippy now feels like crap and we can't really assess what's going on. She did say that Lysodren would bring down his cortisol along with his blood pressure regardless of whether his pituitary tumor is growing or not. Is that the experience of other folks?
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
How is Skippy doing? Have you started him on the milk thistle yet? If so, how much are you giving him? I'm hesitant to say this but after 3 days on it I think I see a difference in Charlotte. She still doesn't eat or drink on her own but she is sleeping better and more alert and interested in things. Also less tremoring. In general, it seems like she feels better. Keep us posted.
Laurie
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Laurie, I can't say whether the 360 mg daily of milk thistle is making any difference after 3 days. (I decided on that dose because the manufacturer recommended 3 capsules x 360 mg for adults.) I would guess that Charlotte could take two capsules of that dose but I would ask someone more knowledgeable than me. I am glad to hear that Charlotte is doing a little better. Will she eat or drink on her own yet? There is a person, westcoastflea1, who began posting last April and posted here this week stating that she was treating her dog with Cabergoline for the last 3mos. and he is now symptom free. Her posts raise a ton of questions but I did research Cabergoline; studies suggest it works with 20 to 30% of dogs with a particular type of tumor. These dopamine drugs came up when I last saw Scott-Moncrieff and she was dismissive of their potential to help but I'll raise it again.
I am compiling a list of questions for the IMS visit on Tuesday as continuing to allow Skippy to languish without trying to secure an accurate diagnosis (whether or not he can be treated) seems like the only option for me. He now has new sores near his butt and on his foot. He chewed the foot one until bleeding. I treated with Stat, a doggie wound care product, gauze and green painter's tape and so far he is leaving it alone. I have no clue whether it is CC. BP meds were increased last Thursday and he seems a little more comfortable; he is eating and drinking with gusto and belly is quite bloated although he has lost a few lbs. Lethargy is constant but if he has canine cognitive dysfunction or a macro, I see no change in the past month. I'll update when or if I learn more. Take care of you and Charlotte.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Thanks for turning me on to Declan's thread and the use of cabergoline. I have read through it and i think i will ask Charlotte's vet about it tomorrow. Seems it couldnt hurt to try it. We are day to day with her and id like to feel like we have given her every chance.
My milk thistles capsules are 175mg and ive been giving her 3 daily. She could probably take more than that. According to one article i read it said sick animals could take up to 200mg per 10 pounds of body weight. This is her 4th day on it but the second day she didnt get her full dose as i found one capsule on the floor the next morning. Last night was rough, lots of tremoring and she couldnt get comfortable. She is weak this morning but did eat some. Not sure if we have time for anything to work. It would be nice to know how quickly Declan responded to the cabergoline.
Laurie
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
The Milk Thistle dosage is helpful to know; I found a couple of articles on Cabergoline that I will post on your thread. Wrote a long email with all my questions to Dr. Scott-Moncrieff this afternoon. Hang in there.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Skippy has a macro tumor, between 10 & 11 cm as diagnosed with an MRI today; I will meet with Purdue staff next week to assess next steps, if any. Currently he has very high BP and massive diarrhea and I am treating for both. Such a long and painful journey. I don't know what the future holds. I only wish I had had the MRI done six months ago. Neither Vetoryl nor Mitotane will help him. Purdue's radiation treatment seems antiquated on first blush; they are starting a new surgery pituitary surgery program, but it's all way too much for mind. Thanks so much to all of you for your kindness and support. I will let you know when I can of the outcome of Skippy's journey.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Oh no!!! Oh I'm so sorry. Poor little Skippy. I will be thinking of you both & I send you love and hugs.
Annie.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Im so sorry Carole! I know you suspected this but not what you wanted to hear. I also wish i would have been told the importance of diagnosing a macro early on, before i spent thousands on other diagnostics and meds. My thoughts and prayers go out to you and Skippy!
Laurie
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I am so sorry to hear this, Carol. Both drugs would allow the tumor to grow more rapidly by reducing the cortisol so in cases like this letting it run high is probably a good thing.
Please know we are here anytime you need to talk, vent, cry, whatever. And as you are able we would love to know how you and your baby are doing.
Hugs,
Leslie and the gang
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
We are with you Carole, whatever comes your and Skippy's way. I really had hoped that the MRI wouldn't show anything. I don't know what Purdue does, but I know University of Davis now has radiation treatment to shrink the tumors that only require at most 1 or 2 doses. If Purdue still uses the 12 dose standard, maybe you could ask them about the lesser dose strategy that Davis is using and they can reach out to Davis.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Carole, just popping in to see how you and Skippy are doing and say I'm thinking of you both.
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Re: Skippy, 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.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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:
Originally Posted by
Carole Alexander
What I have done, besides cry and rage at the unfairness of it all
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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. ;)
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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.