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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Liltara, what a sweet and thoughtful post. Thank you for thinking of us and worrying about how this will turn out. Of course, I hope for the best and sometimes fear for the worst. I know that I will have to accept the outcome regardless and am trying to get my head in that place. Meantime, Skippy is having a bath next and a blow dry. My crazy theory is that they will treat him better, more carefully, with more tenderness, whatever, if he is sparkling clean. A little streak of neurosis I guess. Best to you and I hope you are staying above water in the grieving process behind Mojo and your friend. Hugs,
Carole
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Skippy's all day event at Purdue today was in vain. The machine "broke" as the vet said, while they were radiating another dog. (They said the dog is fine.) Skippy goes back on Wednesday morning. Yet another I don't know what to say moment except my confidence in these folks, that was already shaky, has taken a serious hit. But, I am out of options.
BTW, in case anyone is interested, the cost is up to 4,400k to 4,800 for this phase, plus the 1k for pneumonia meds and x rays. I haven't bothered to add up the costs prior to this. This is still a lot less than either east or west coast costs. A woman on FB contacted me this morning; she lives in NY and they estimated the cost to radiate her dog at 8k. I just hope this isn't a case of you get what you pay for.
To be continued...
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Oh Carole, I'm so sorry for the delay. I can only imagine how you're feeling about it all, but we'll keep hanging in here with you while we wait.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Skippy had radiation therapy this morning. He was out by 1pm. So far, so good. He just ate a small amount of food along with his meds. He is drinking and drinking. He is a little groggy and confused but otherwise okay. Round 2 is Friday. They are still concerned about a lymph node in his rear leg but haven't tried to aspirate it again; I'm going to ice it. They gave him an injection of prednisone and he starts the tablets tomorrow. On Monday, Purdue did a neurological evaluation and concluded that he is in relatively good shape for having a macro and being 12.
Skippy is now on the porch barking at something outdoors. However, I do understand that there likely will be many tough days ahead.
Thanks again everyone again for your kind words and support.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
YAY SKIPPY! What a little trooper he is ...
So glad it went as well as can be expected. Hoping that you see some good results very soon.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Yay, so glad he did well with the first radiation treatment.
bummer about that machine breaking right when trying to get everything together and sorted to start this. Not the way to start out this sort of journey for sure
You're doing great. I know it is nerve wrecking and at times even nauseating with all the worry, but you are doing fine. :)
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Round 2 is in the bank; he is better today after treatment, not confused or lethargic and very hungry. Must all be the prednisone. The radiologist said that likely it will be at least a month before he responds to potential tumor shrinkage. Purdue is very pleased with how well Skippy is tolerating the anaesthetic. Obviously me too.:)
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
This is awesome news!!! Go Skippy!!
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Woo hoo!! Such great news!
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Skippy graduated from radiation today complete with a Purdue Radiation Scarf and a certificate that included his photo. He is fine and the same. Still on Clavamox, BP meds, Pred and Denamarin. He goes back for Neurological exam in ten days to create a baseline. They expect no change in functioning for a month or more. Purdue radiology was very, very good in spite of all my reservations. He was radiated with 8Gy X 3 on three different days in a one week. He has had no side effects so far.
I have no idea if this will help him but time will tell. I'm very grateful this part is over for him and for me. Thanks again everyone and I will post on the next chapters. :)
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Congratulations to both you and Skippy, Carole! I think you are both very brave :o :o, and I'll be so anxious to hear about every single step further down the road.
Sending healing wishes to Skippy and a big hug to you, ;) :)
Marianne
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Woo hoo! That's awesome. Lots of healing energy for Skippy and love for the both of you.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Oh my gosh that is wonderful to hear Carole. We look forward to the next chapter on yours and skippys journeys and remain hopefully optimistic. :)
yay for purdue.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Oh I am so glad this is behind you and Skippy, Carole! I am also glad this was a much better experience than you had feared...and me too. ;)
I choose to believe that you will start to see things improving soon...small, teeny things at first that make you wonder if you are seeing things or maybe losing your mind hoping so hard. But soon you realize those things were real and were the foundation of a new life for Skippy!
Hugs,
Leslie and the gang
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi everyone and thanks yet again for your support. Leslie, I am watching Skippy with a magnifier, butthe radiologist was nearly emphatic that the earliest that I might see any change is a month. She thinks any improvements I'm seeing now are prednisone related. He is more alert, more ravenous if that's possible, but refused to walk last night in the heat and fireworks melee. (Although he's not reactive to loud noise.) He looks more alive and is a bit more responsive to commands, more willing to be petted, brushed or messed with. But truly, no one but me would see a speck of difference and I may be imagining it. I am trying very hard to have no expectations of the radiation but of course that is hard. I waant to get him up and take to the streets. But truly I know that it just may not work. I now am not so convinced that it matters whether the radiation is Cyberknife, Tomotherapy or plain old SRT that he just had. His tumor was relatively large but his symptoms were not extreme relative to other dogs described here. The total cost of this phase of the boy's treatment was $4,200. I do not regret for a second spending the money and am glad that I was able to do it regardless of the outcome. I know nothing about his Cushing's except that his liver is enlarged, belly is enlarged and he drinks and pees a lot so I presume he remains full blown on the Cushing's front. They have poked the lymph node on his rear leg four times total now and they suspect that he has an old dog growth on top of that node as it consistently produces blood. They feel highly confident that it's not lymphoma. He's still on Clavamox for the pneumonia and they will x ray him again next week to see if it has cleared. Unattended is the adenoma on his butt that remains stable.
Reading all of this I realize what a sick little guy Skippy is or at least was. If he comes out on the better end he truly is a miracle of modern medicine and his positive attitude that there is nothing wrong with me that my mom can't fix! I wish it were so.
Carole
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Carole,
I am so happy to hear of this progress - Skippy is seriously a warrior.
With all that is ailing him, he still fights and he now has an even better chance at improved quality of life because of you.
It is all we can do to give them the best care we can and make decisions based on the information we have. I am so glad that you and Skippy continue to have time together to love and cherish each other.
I do hope that you see improvements from the radiation - had I known in the beginning of Mojo's journey (before trilostane and all of that drama) what I know now, I would have tried radiation. Lessons learned ...
Keep us posted and know you are in all of our thoughts as you and Skippy fight the good fight :)
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Carole,
Happy to hear your little trooper is fighting onward with his awesome Mom beside him. I can't beleive all you two have been through, together. Sending hugs to both of you!
Annie
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Liltara and Annie,
My thanks to you for continuing to follow Skippy's progress and for your kind words and thoughts. It's hard for me to believe that the radiation is behind us by a week now. It was all so scary especially after the pneumonia. While Skippy has not been transformed into Super Dog, he has no visible short term effects from the radiation. He still moves rather slowly but he is moving and clearly is gaining more strength. Two days ago, he jumped out of the front seat of the car when I ran back in to get something. Yesterday, he jumped out of the bath tub when I went to get an extra towel. He will now walk, albeit slowly. His bark is stronger and he seems a little more interested in life around him. He is starting to become very suspicious of all the meds and yesterday turned down one wrapped in ham! So, I am hopeful that the radiation is working but maybe it is just the prednisone. As Leslie said, looking for teeny tiny changes. Wednesday is the neurological evaluation and x ray of his chest and I want a BP check. I read that Doc, the dog radiated at U of FL had a subsequent MRI or maybe a CT two or three months after radiation. At this point I am not inclined to do that. Either this works and it works for how ever long or it doesn't. Maybe I will feel differently in the future as I never thought four months ago that I would permit him to receive radiation.
On the Cushing's front, Skippy's ravenous hunger has diminished but not the drinking and peeing, although the frequency of peeing has lessened. His coat and belly seem about the same to me. Of course I won't know about his liver until after the x rays. More to come...and again, thanks everyone for your support even when you likely questioned my sanity. There have been times in the last months when I have questioned it myself! :p
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Sounds good so far, Carole! Little improvements that make us feel good.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Oh great to read this. Skippy seems to be doing very good compared to where he was before the radiation. Hopefully the improvements keep on coming!
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Everyone,
I am actually grateful that Skippy and I have been bumped off of page one and that folks who have dogs in crisis have filled the space and can get support that they desperately need.
So here is the Skippy update for those who are interested: Skippy is doing very well thank you. We are 15 days out from the last radiation treatment. He is showing a number of small signs of renewed interest in life:
He wags his tail again in a tiny wag.
He tells me, mostly with his presence and his eyes that he wants to go to the bathroom.
He is much more interactive; barks (in his little bark) to be let in, responds to petting and tummy rubs, follows me to the door if I'm leaving, sits and stares at me for meals.
His walks remain short, he sleeps a lot, he still has the occasional accident in the house on the papers, and he remains far far from the Skippy of old. But he does not appear to be in pain, confused or bewildered by his world, but his world remains pretty small.
He has not been stimmed again for Cushing's although I fully expect that his cortisol will be high and we will be back down the Vetoryl trail soon. But that may be a good thing for him and ultimately for me.
Skippy's radiographs on July 12 were identical to ones in June, meaning that medically he still looks as if he has bronchial pneumonia. He has never had one clinical symptom of pneumonia. While they think there could be a more serious underlying condition
they felt that a CT scan of his chest would be for their benefit, not Skippy's.
We are weaning off the prednisone and are nearly done with the last round of antibiotics. Skippy's heart murmur was undetectable by four vets in radiology; his swollen gland in his leg is as far as they can tell, negative for lymphoma and his chest was clear on x rays and CT scan. His liver was still swollen and he will remain on the Denamarin for the foreseeable future. After the next Stim test I plan to have the adenoma on his butt removed. So, nine months later, we are back to probably plain ole Cushing's. What a journey, what a relief in many ways. Even if I see no improvement in his quality of life beyond where he is today and knowing that it won't last oh so long, I am grateful that I could give him a shot at a better life for awhile. Indeed, we are both so fortunate! Thanks everyone for your hundreds of kind words, expert advice and support through the crises, chaos, and calamities. You all are the best! And, I will send more Skippy reports - the good, but no bad or ugly we hope.
Carole
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Carole. Happy to hear that Skippy is holding his own and does not seem to be in pain.
I do have a few thoughts... Prednisone does help reduce the swelling around the tumor. It can temporarily improve neuro symptoms. That could also account the inprovement in symptoms that you are seeing.
Also, Radiation therapy has been done in an attempt to shrink Skippy's macro-tumor. Vetoryl has been linked with causing macros to grow. You mentioned possibly starting Vetoryl again if Skippy's cortisol is high after testing. In this case, I probably wouldn't restart the Vetoryl. I would deal with the symtoms of his higher cortisol.
Quote:
Originally Posted by
Carole Alexander
He has not been stimmed again for Cushing's although I fully expect that his cortisol will be high and we will be back down the Vetoryl trail soon.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Kathy, you raise a really important issue that I thought about a great deal after Skippy's MRI and the macro diagnosis. The evidence that Vetoryl causes the pituitary tumor to grow seems very solid. I have just begun to try to research this question and ran upon a couple of articles.
http://www.vetfolio.com/neurology/ca...ry-macrotumors
http://www.dvm360storage.com/cvc/pro...ocorticism.pdf. Neither fully address the question: should Vetoryl be used after radiation?
I think that Dr. Scott-Moncrieff at Purdue believes that the answer is yes. (She stated in June that Skippy would likely need to be put back on Vetoryl after radiation because radiation is unlikely to control his Cushing's.) My current thinking regarding these treatments for macros, i.e., radiation, surgery and Cushing's or Addison's meds after is that animals are often outliving the knowledge and expertise of veterinary medicine. This is a prime example that so far I can't find addressed in the internet literature. Neither radiology or internal medicine at Purdue think Skippy will not live longer than a year after radiation, so in reality does it matter whether I treat the Cushing's or not? I really don't know whether it would improve his quality of life or just further shorten his life.
Regarding the prednisone, yes I agree I may be seeing temporary neurological improvements. I am weaning him off the pred now but he won't be finished for another three weeks. This week I have observed some loss of hearing. This may be a short term side effect of the radiation but I just don't know. While I am certain I could call and ask questions, I likely only would get generic answers. Purdue radiology said that they have "done all that they can do for Skippy". He did have a neurological exam about a week after radiation and his condition then was unchanged from prior to treatment. I have no clue as to why they did the exam so quickly after and didn't have the presence of mind to ask.
Thanks Kathy for raising the issue and I appreciate your recommendation that I not put him back on Vetoryl. I am trying to research L-Deprenyl but that drug is full with controversy as well.
Carole
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Carole,
I am not a doctor, nor claim to be. I have lived the suspected Macro route with my little Buddy. From my pet parent perspective, which is all I have, I wouldn't restart the Vetoryl. Higher cortisol actually masks other symptoms such as arthritis and allergies, acting like a natural bandaid of sorts. It is possible that Skippy might actually feel a little better with a higher cortisol level. Yes, uncontrolled Cushings has it's own risks. Skippy is a very ill little boy. Uncontrolled Cushings may be preferable to restarting Vetoryl, leaving the tumor unchecked. It's a really tough decision to make. Quality of life trumps everything in my opinion. It's not about buying extra time. It's about helping Skippy be the Skippy you know and love, for as long as he's happy and comfortable.
Macro's SUCK! There are no cures. The tumor will continue to grow and eventually take over. Hopefully the radiation treatments will buy him more time. There is no cure for Cushings either, but I am confident that there will be someday. This is what makes it all so very hard. You are Skippy's best advocate. Do what you ultimately feel is best for him because no one knows him as well as you do. This is not meant to scare you and I apologize if it does.
Kathy
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Carole,
I only have a minute but I wanted to support the idea of not putting Skippy back on trilo.
With Mojo, it is very clear to me that his tumor grew swiftly (more swiftly than it would have) because of the trilo. I have my own pet parent experience and the opinions of the experts I consulted during his treatment (Dechra and local vet).
With all that you have done, valiantly, to improve Skippy's quality of life it seems counter-intuituve to put him back on medicine that will likely make him feel worse as the tumor grows.
I concur that the higher cortisol is preferable to the terrible side effects of trilo and a macro.
Please keep us posted - you are the best decision maker for your dear boy and we chime in just to help you weigh all options.
Wishing Skippy continued improvement and stability :)
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Carole, I know you will make whatever decision is best for Skippy and his unique set of circumstances. I decided to add a note here, though, really for the benefit of readers who may just be starting out on the Cushing's diagnostic journey and are becoming fearful about ever starting medication treatment due to a worry that treatment might hasten growth of a pituitary tumor. Until an actual cure for pituitary Cushing's is developed, I'm afraid that treatment decisions are always going to come down to judgements about quality of life. What may be best for one dog may not be best for another. My own thought is that lengthening a lifespan may not necessarily be a fair tradeoff for a more compromised lifespan. So, for instance, even if treating with Vetoryl may be associated with quicker tumor growth in some dogs, the tradeoff may be worth it if the quality of life is improved even for a shorter term.
I now suspect that my own Cushpup, a Lab, was suffering from a larger pituitary tumor long before he was officially diagnosed with the disease at all. After several months of trilostane treatment, he did end up with neurological issues that were characteristic of a macro. However, long before that, he exhibited classic Cushing's symptoms that were totally robbing him of his quality of life. By the time we started him on trilo, he spent his days and night either swilling water, peeing, starving, or panting on a small patch of our main floor that had hardwood instead of carpet. He could no longer jump on the couch, climb the stairs to our/his bedroom, jump in the car, chase a ball, or negotiate steps into his beloved backyard. He was living a shell of a life. Trilostane was an experimental med at that time, and I must tell you, I cried tears of joy when our first dose arrived in the mail and I could finally treat him. I do believe we would have released him at that time had the treatment not helped.
As it turned out, the trilo DID help with those symptoms, and we had about six months of improvement until the neurological problems emerged. For reasons that I've talked over with you elsewhere, we did not opt for radiation and we lost him. However, had radiation been an option for us, I have no doubt but that we would have resumed the trilo again had his typical Cushing's symptoms remained or reemerged. Regardless of whether or not it would have hastened tumor regrowth, his immediate quality of life would have trumped all else.
Once again, I am not writing this to advise you as to what is best for Skippy. But instead, I just want folks to know that there is really no cookie cutter approach to all this. Every dog's lifestyle and symptom profile has to be taken into account when making these types of decisions. But if classic Cushing's symptoms are making a dog miserable, I hope our readers won't discard consideration of treatment simply out of the fear that tumor growth may ultimately somehow be affected. Thank you for letting me hijack your thread, and I continue to wish you and Skippy my very best!
Marianne
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I don't think there are any easy answers, if dealing with a macro. Most dogs don't have a macro, the tumor never grows (when I say most, i'm referring to the ratio of dogs on this forum that do have macros/neurological symptoms vs those that don't and our facebook page, where the ratio of most being small pituitary tumors vs those having neuro symptoms symptomatic of a macro) but for those that do and even go through radiation, it often seems that the tumors grow. I'm not sure about after radiation. I think Dawn had a year or two with Buttercup after her radiation treatment at Davis. She was I think put on vetroyl about 6 months after the radiation treatment. (I'm going by memory here) as I haven't looked that the thread for awhile.
It seems to me that if a tumor becomes a macro then it just wants to grow, so there could be a risk if that is true and that is just a guess/observation on my part. There really isn't enough research and documentation regarding the after radiation treatment options.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
My thanks to each of you for responding to my dillema with Skippy. I think your comments are valid on both sides of this argument. Kathy, I agree that Skippy is a very sick boy and that a macro and Cushing's suck. I also agree with Liltara's comments about Mojo; I believe that Vetoryl sped up the growth of Skippy's macro although I have no proof of that. (Except that his deteioration began in November with Vetoryl treatment and continued to advance untill I stopped Vetoryl in late March.) It's also curious that between his MRI in early April and radiation planning in late June involving a CT scan there was no growth in the size or height of his tumor according to Purdue Radiology.
Marianne, I don't feel as if you hijacked anything. Many times knowing what we don't know is the most important thing. And, we all agree that quality of life is the only factor in this decision. Because his symptoms, i.e., weakness, pu/pd, lethargy, dullness, hunger, hair loss, etc., are and always have been nearly identical to many dogs with severe Cushing's, I still don't know what I'm looking at. I'm currently treating his liver, BP, kidneys and he just finished another round of Clavamox for his lung condition. To be clear, I'm saying that I don't know if these symptoms, especially the lethargy, weakness and dullness, are caused by Cushing's, by the macro or both.
Yesterday I sent an email to Dr. Scott-Moncrieff but haven't heard back, expressing my concerns about restarting Vetoryl and asking whether, short of Vetoryl, there was anything else medically that I could try to help Skippy. Or, if medically we are at the end of the road except to see if he survives and whether the radiation helps him over the next several months. I have again begun to research some of the other Cushing's drugs and most or all have been deemed effective with only specific tumor types, e.g., L-Deprenyl, or are simply unaffordable. So, as usual, I am stuck but I'm not giving up - yet. I will send Dr. Bruyette an email and seek his opinion again. I really appreciate everyone's feedback as your experiences and knowlege are incredibly valuable to me.
Carole
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Carole,
It is true that the majority of pituitary tumors stay small and do not grow into a macro. At least not big enough to cause neurological deficit's. I am not against treating Cushing's with medications such as Vetoryl (trilo) or Lysodren. These drugs can/do manage Cushings symptoms well for many of our pups.
My concern is with restarting Vetoryl after radiation, when a macro-tumor is already present. Radiation is tried with no guarantee that it will do anything. It is hopeful that it will somewhat stall the tumor's growth, possibly even shrink it to some degree, relieving some neuro signs temporaily. All in hope to buy a little more quality time. I understand Marianne's thought regarding this and she does make a point. It is all about quality of life. However, it seems counterproductive to restart a drug to reduce cortisol, leaving the tumor unchecked to grow. Radiation has been done to help shrink the tumor in hope to relieve neuro symptoms. Mega $$$$ have been spent to do this. Restarting Vetoryl in this circumstance just doesn't make sense to me.:confused::confused:
Skippy reminds me of my own little yorkie Buddy. All of this is heartbreaking. Watching Buddy slip farther and farther away and not being able to stop it tore my heart out. It still hurts over fours years later. So much that I still come here to help when I can. I do this as a pay it forward, so to speak for all the help and support that I received during Buddy's journey. That support was unwavering and literally kept me from going totally insane. We are here for you and Skippy and will remain here for you always.
You are a fighter Carole! Skippy is blessed to have you in his corner. :)
Kathy
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Carole, I know that Skippy has been so unwell for quite a long time. Did you feel as though you were seeing any improvement at all in his conventional (non-neurological) Cushing's symptoms while he was taking the Vetoryl?
Marianne
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Kathy, thank you so much for your kind words. I too appreciate your support and that of so many others on this forum, more than words can say. I have read your thread describing Buddy's deteioration and it is heartbreaking to watch our dogs slip away with this lousy macro.
I clearly understand that restarting Vetoryl is likely a high risk proposition. What I don't know is did the radiation reduce the swelling and perhaps will it shrink the tumor. In spite of reading about other dogs who saw immediate improvement, Skippy is not among them. Radiology was quite emphatic that if I saw improvement, it would be month, more like several, before there was improvement. And, I still don't know the quality of the radiation protocol or their equipment compared with other facilities.
Marianne, I can't recall what Skippy's cortisol level was at the beginning of December. I want to say he was in the 30's but I'll check. At the point of the last Stim he was down to 9 then back up to 11 but still with clinical symptoms. I did see modest improvement on the low Vectoryl dose, 10, 15 even 20. When we increased to 30, he became very ill, refusing to eat, tremors and severe lethargy and we stopped the Vetoryl in late March. I have never know from the outset which of his symptoms were caused by cushing's and, in retrospect, which were caused by the macro. Initially, five different IMS and the local vet all thought that his symptoms, lethargy, distancing, limited interaction and general dullness were all Cushing's related, until the MRI. He has consistently displayed the same symptoms but now intensified since last November. Both with Vetoryl and initially Cabergoline, he showed modest improvement. Cabergoline caused digestive distress consistently.
No word back from Dr. Scott-Moncrieff @ Purdue. I guess I could take him back to Purdue and get another Stim test and blood work to see how his liver, kidneys, BP etc., are doing. Clinically, he seems quiet, subdued and fragile. He walks slowly, doesn't want to be outside except to lay on the porch, doesn't bark much, never cries, doesn't respond to petting and is like a stealth dog. He can hear but I don't know how much. Pred tapering continues for three more weeks.
Or, I can just watch and wait and see. Thanks again so much for the feedback and questions.
Carole
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I made an appt. for Skippy to be seen by Dr. Scott-Moncrieff on 8/8. That will be six weeks after radiation.
Carole
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Dr. Scott-Moncrieff's reply to my email. Not sure what I think except there is no plan for follow-up imaging.
"Thanks for your email. I am glad that Skippy’s neuro signs are slightly improved. We will have to see how he does as you taper the prednisone.
Regarding the Cushing’s signs I would not expect any improvement until you have discontinued the prednisone and as we discussed even then his signs are likely to persist because the radiation is much better at managing the neuro signs than the endocrine signs. The concern about the tumor growing with medical treatment is something that we worry about prior to radiation therapy rather than afterwards. If the tumor responds appropriately then it is absolutely appropriate to treat medically and we could use either mitotane or trilostane. I would recommend that you make an appointment to see me after Skippy has been off the prednisone for at least 2 weeks. Then we can assess where things stand endocrinologically.
Of course I am happy to see him earlier if you would like me to. When do the radiation oncologists want to see him again? When are they planning follow up imaging?
Best Wishes
Catharine"
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I do understand the concerns expressed by folks here, but from our experience on the forum over the years, it is not unusual for clinicians to resume treatment with either trilostane or Lysodren subsequent to radiation treatment. I cannot say whether this is because they are less concerned about hastening regrowth once the tumor size has been significantly reduced, or whether it's because there simply are no other good options for controlling reemergent conventional symptoms.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I notice what he said about the predinsone and it's true that it will cause all the same symptoms as cushings because that is it's nature, so maybe they think that is the cause of some of the symptoms.
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Carole!!! So how is Skippy doing? I had to go looking but found you on page 2! LOL
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Sharlene, thanks for inquiring about Skippy. I wrote a post a couple of days ago and decided not to post it as I felt that I was being too negative about his situation or better put, mine.
Skippy's pred taper concluded last Friday. He is scheduled to see Dr. Scott-Moncrieff on the 29th; her students have called a couple of times for updates on Skippy since I cancelled his appointment on the 9th of August. There is no plan for follow-up with radiology at Purdue as they have "done what they can do".
Physically, Skippy is the same, i.e., lethargic and mostly sleeping, very hungry, drinking rivers, wobbly and weak in his back legs and refusing to walk except to go out to the bathroom. He continues to sleep on the wood floor in front of a fan even in air conditioning. He is a stealth dog now, does not cry, occasionaly barks and comes to find me if he wants out or fed. He can hear but has lost significant hearing. His nuero functioning is slightly better; he appears to be more present when awake but doesn't seek interaction. He will sit outside and watch the world go by but he no longer jumps, runs, plays or seeks out anything much except food. In reality, except for now being "more present", nothing much has changed since last November.
I have accepted that what is, is. I have no confidence that Purdue has much to offer except Vetoryl and I remain undecided in that regard. I will address removal of the adenoma on his butt as there have been three episodes of bleeding in the past couple of weeks although it doesn't seem to bother him in the slightest. Also, I will explore whether Purdue's water therapy program may be an option to pursue.
I have no regrets about radiation; it was/is his only shot. Maybe a different radiation program or protocol would have led to a better outcome but that's a moot point now. And, as we all know, radiation is not a miracle and Skippy has many issues and illnesses. I am disappointed that Purdue radiology has no interest in Skippy's response (or lack therein) to their treatment protocol. But I guess it is just all in a day's work.
I'll update again after our next journey to Purdue as that may well be our last one.
Carole
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Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
It's hard not to have those down times, and I hope that you know it's okay to feel frustrated sometimes and you are welcome to talk about those frustrations here among others who can understand how difficult this journey has been.
I wish he was more engaged and I'm not sure how to help that or if it can be helped. At least he isn't going backwards and that is something good.
I wish Purdue was more interested in follow up too, at the very least so they can gauge treatment for all dogs who might be a candidate for radiation. How do you know if something is successful if you don't have an interest in after care results. *sigh*
Carole, you do what you can and hope that it all works out. It is all any of us can do. In this case, Skippy is still there, and while he might never be the skippy of old, it is more than might have been without the radiation. I know you don't regret having radiation done, but I just want to lend you my support.
HUGS