07/09 update - trying to get the acro autotracker updated, thank you!

Discussion in 'Acromegaly / IAA / Cushings Cats' started by Amanda & Shmee, Jul 2, 2018.

  1. Amanda & Shmee

    Amanda & Shmee Well-Known Member

    Joined:
    Feb 18, 2018
    Hi everyone,
    Results are in for Shmee's IGF-1 test. I just posted in the Lantus forum but I figured I should post here too.

    I am heartbroken. I have read over the Acro stickies and I do not see remission mentioned anywhere..... are his odds completely zero now? I feel numb. And my poor Shmee.... I think this is the worst feeling I have ever felt.

    Email from vet (I am taking her words with a grain of salt. I would love to hear from the acro experts here):
    "I have full results back from MSU, they are attached.
    The IGF-1 value is very elevated, so Shmee does have acromegaly.
    Acromegaly is caused by a (normally benign) tumor on the pituitary gland that causes the pituitary to secrete excessive growth hormone.
    From what I have researched, diabetic cats with acromegaly cannot go into remission unless the acromegaly is treated. That being said, most cats with acromegaly do not respond to insulin and Shmee is, although at a fairly high dose, so it's possible that the acromegaly is not making him insulin resistant (the endocrinologist said not all acromegaly cats are insulin resistant).
    The only real treatment for acromegaly is to have the pituitary tumor surgically removed. This procedure is not offered many places. The Royal Veterinary College in London is the hospital that perfected the surgery. From what I can find, Washington State's Veterinary School is also doing the procedure with good success.
    There is a medication, Pasireotide, that can be used to suppress the pituitary tumor's secretion of growth hormone. It is not always successful, it has side effects (mainly stomach upset) and there seems to be issues getting it in the US. It is also very expensive. I couldn't find costs for US but I found someone who said it's about $2000 GBP (which is ~$2600 US) a year. Cats on the medication don't normally go into remission, it just makes it more likely they will respond to insulin.
    So for Shmee, since he is responding to insulin, you are most likely looking at keeping him regulated vs achieving remission, although since he's responding to insulin there is a chance the acromegaly isn't affecting his sensitivity to insulin.
    Based on his BG chart I'm guessing he will need 5.5 - 6 units twice a day to maintain a good regulation."

    MSU results attached.
     

    Attached Files:

  2. Mom2Maverick

    Mom2Maverick Member

    Joined:
    Dec 15, 2016
    I'm so sorry that you received the news. I understand your devastation. Like it was mentioned on your other condo, Cabergoline has been successful in some cats for reducing insulin needs and maybe getting off insulin all together. The dose is 100microgram/kilogram daily. I get it from wedgewood pharmacy and it is $135 per month. Maverick is a big boy so yours will be cheaper.
    Shmee responds very well to insulin, so I would definitely give Cabergoline a try. Also worth looking into is switching to Levemir at some point. Many acro cats do very well on it.
    I'm sure people will chime in for you regarding SRT treatment, which would also give Shmee a chance to reduce insulin needs.
    Lastly, acro kitties are allowed to eat more than other cats. I know your vet was giving you a hard time about his weight. I would feed him more (within reason) if he's hungry.
    I know you have a vacation coming up. I would start looking now for someone to come over or stay at your place when you are gone. You could maybe train a friend or family member on how to care for Shmee. Another option is to board at the vets.
    We are all here for you!
     
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  3. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    I responded to your post in the L/L forum.

    Levemir is an option, but not all acrokitties switch. Shmee seems to be doing quite well on Lantus, and as long as it doesn't seem to be stinging him on the injections, you could stay with it. Lantus has an acid base which can sting at larger doses.

    As for food, let your scale be your guide on feeding. I didn't give Neko any extra food. I tried to maintain her weight. But she also didn't get longer/bigger as some acros do. Feed him the appropriate amount for his size, and don't worry if he gains a bit. Growth hormone will mean he's hungry like a growing teenager.
     
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  4. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Sorry to hear the diagnosis. We suspect many high dose kittehs have Acro, but most don't get tested.

    You can try Cabergoline, and with luck it will help. Some people just dose higher insulin to flood out the IGF-1. Over time, the excess growth hormone will cause other issues. But Acro can be slow growing, so maybe luck could be on your side.

    Wendy had Neko treated with SRT twice, successfully. I had Leo treated with SRT in Oct 2016, and it was successful. That is the expensive route. Leo still does not regulate well. His dose has varied from 1.5 - 4.0 units just in the past 2 weeks. But that's a lot better than the 18.0 units he was getting pre-SRT.
     
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  5. Amanda & Shmee

    Amanda & Shmee Well-Known Member

    Joined:
    Feb 18, 2018
    Thank you all so much. I am so grateful I have this group to come to. I am still trying to process and come to terms with everything... I am grateful Shmee has been doing so well lately, and am highly considering the Cabergoline. Since he is doing well with insulin at this point I don't think SRT is necessary yet? But I did find that there is an option in Yonkers NY about a 1.5 hour plane ride away from me if need be.. although I cannot imagine bringing him on an airplane but at least I know the option is there.
     
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  6. Amanda & Shmee

    Amanda & Shmee Well-Known Member

    Joined:
    Feb 18, 2018
  7. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    You are not alone. There have been a lot of Acro cats here. Some don't always post. I'll leave a name out, but a lady recently got SRT at WSU for her cat. And Sarah just had Pig get SRT at WSU.

    Bronx's Dad got SRT for Bronx at Yonkers. I think that may be a high-cost SRT.

    Wendy took Neko on a plane from Vancouver to CSU.
     
  8. Amanda & Shmee

    Amanda & Shmee Well-Known Member

    Joined:
    Feb 18, 2018
    I was just reading through your link of Leo’s thread about his SRT and I see an option that’s in Pittsburg which is only two hours away from us! He hates car rides but that’s a much better option than a flight! Hmm... I am torn because he’s doing well on insulin right now. I wonder if I would even need to spend the money on SRT since he’s doing well... so much to think about and research still.
     
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  9. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    It's good to evaluate options. Thanks for the kudos about Leo's SRT thread. I always hope others can learn from Leo's journey.

    I don't remember any recent Pittsburgh SRT stories, so it might be good to call them for current pricing. Leo ramped insulin fast from June 2016 - Sept 2016, so we decided SRT was best for him. Plus we had lost his brother Scoobs in July and we could not lose both our fur boys in the same year.
     
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  10. Mom2Maverick

    Mom2Maverick Member

    Joined:
    Dec 15, 2016
    It’s a liquid suspension. I put it in his food once a day.
     
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  11. Olive & Paula

    Olive & Paula Well-Known Member

    Joined:
    Sep 6, 2015
    Sorry for the dx. I'm still trying to get treatment for Olive. The pasireotide is very expensive in the US. I priced it a few weeks ago the cheapest was over $13 thousand a MONTH. It's what my vet was recommended to use. Ya, like I have a money tree in the yard. Don't know where you are located but Red Bank NJ does the SRT. I'm sure Cornell does and a place in Yonkers NY does as well as Phili.

    I want to try the cabergoline but vets around me won't script it because "they can't find studies" and the RVC is telling them it doesn't work and to go with the pasireotide.

    Good luck in what you decide.
     
  12. Mom2Maverick

    Mom2Maverick Member

    Joined:
    Dec 15, 2016
    That’s too bad. There was really only one study that I had found that said it worked. I had high hopes for the RVC. Maybe they should have studied it for a longer time period. My vet agreed to prescribe it and honestly the only thing I have to go by is how cats are doing from this forum.
    My cat hasn’t earned any reductions, but I was running low at the end of May/beginning of June so giving it every other day. 2-3 weeks later his blood sugars became unregulated and I had to increase his doses. I do believe that it helps.
     
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  13. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    The Argentinian paper I linked in this thread, had positive results for cabergoline.

    If you are thinking of doing SRT, do it sooner rather than later. You want to limit the side effects of the excess growth hormone, which will remain unchecked until you treat. There have been people who waited too late, at which point their cat had a heart condition or kidney condition and could not undergo the anesthesia needed. It's a slow moving condition, but not all effects are reversible and each acrocat is different in how the acromegaly progresses. For Neko's second SRT, in spite of a clean echocardiogram the week before, she had a heart block during anesthesia for her CT scan. That's a kind of terrifying no one else should experience.
     
  14. Ana & Frosty (GA)

    Ana & Frosty (GA) Member

    Joined:
    Jan 19, 2018
    I'm surprised your vet didn't mention the radiation (SRT). When Frosty was being worked up for Cushing's vs Acromegaly, the vet was really hoping it was Acro because they have radiation available at their hospital, and cats respond really well to it and prognosis is very good. Are you seeing your regular vet, or an internal medicine vet?

    I definitely understand the feeling of devastation and disbelief. I cried for like 3 days after we realized Frosty probably had Cushing's. The worst was when a fellow PA asked me about how Frosty is doing (he follows his page on Instagram), and I started crying at the nurse's station. About my cat (baby though). I was like "There's probably people here who are dying, and I am crying about a cat!" LOL! Life....

    At first when I googled my cat's diagnosis, it said it's basically a lost cause, and I really thought he was gonna die, but 1 month later on medication, he's doing great! SO my point is, try not to jump to conclusions just yet (easier said than done!) You might find the perfect treatment, and he might do great, in spite of what your vet or Dr. Google (internet) says. :bighug:
     
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  15. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Our cats are never a lost cause. They only give us loyalty and love, and they don't expect much in return. Leo has almost died several times. Each time we went above and beyond. Then he gets to enjoy the periods of health that are the ultimate reward.

    A few years ago, one of my coworkers lost his cat after 18 years. He told me he was more sad about losing the kitteh than the relative who died the year before. I think we get really attached to our kittehs, and that closeness may be more than we realize. I hope you can find a good solution for Schmee, whether it is increased insulin or ultimately SRT. In the meantime, you have done an excellent job getting Shmee regulated and as healthy as you can.
     
  16. Ana & Frosty (GA)

    Ana & Frosty (GA) Member

    Joined:
    Jan 19, 2018
    Garden State Vet in Tinton Falls, NJ also does SRT. Frosty sees Dr. DeMarco there, who is amazing. I highly recommend it if you choose that route and if NJ is closer. (it's in Central NJ by the shore)
     
  17. Amanda & Shmee

    Amanda & Shmee Well-Known Member

    Joined:
    Feb 18, 2018
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  18. Amanda & Shmee

    Amanda & Shmee Well-Known Member

    Joined:
    Feb 18, 2018
    Just an FYI in case anyone stumbles upon this post - I have asked all beans that have cats positive for acro to update the acromegaly autotracker so we can have the latest information. Here is my post about it in the Lantus forum.
     

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