6/10/2018 Thomas tested positive for acromegaly and IAA

Discussion in 'Lantus / Basaglar (glargine) and Levemir (detemir)' started by Sara & Cats, Jun 10, 2018.

  1. Sara & Cats

    Sara & Cats Member

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    Mar 8, 2018
    Previous June 7, 2018

    Hi Everyone,

    It has been confirmed. Thomas is positive for acromegaly and IAA. How did we get so lucky? I was hoping he was going to be a boring diabetic cat. Not that that really exists. Is remission still possible?
    I can accept the IAA diagnosis but I'm having trouble with the acromegaly. I'm not sure how we should treat him? He's still a young guy at only 12 years old.
     
  2. Amanda and a Loudogg

    Amanda and a Loudogg Member

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    Jun 16, 2017
    I am so sorry you got a double whammy Sara. You might want to post in the Acro/IAA/Cushings board, although I think most that post there post here as well. I don't know any of the answers to your questions, but I'm sending you hugs. :bighug::bighug::bighug:
     
  3. Sienne and Gabby (GA)

    Sienne and Gabby (GA) Well-Known Member

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    Dec 28, 2009
    You should treat Thomas exactly the same as you've been doing. He doesn't know he has acro or IAA!

    There will, no doubt, be members stopping by to provide their experiences with treatment for acro. There are several -- SRT, cabergoline, or insulin management. IAA is time limited -- you just need to get ahead of the antibodies.

     
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  4. Chris & China

    Chris & China Well-Known Member

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    May 10, 2013
    @Wendy&Neko has a lot of experience with acro/IAA but she's not usually online until a little later in the day

    Sorry to hear you got the double whammy, but knowing what you're dealing with can be really helpful
     
  5. Sara & Cats

    Sara & Cats Member

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    Mar 8, 2018
    My vet has mentioned pasireotide. I think Thomas is the first acrocat my vet office has treated. I'm going to ask next time because now I'm curious.

    Which medications have had the best results?

    I'm considering SRT as well but that will have to be a few months down the line when I can get enough vacation time to go. Anyone know any recent pricing for CSU? Is there just one standard price or it different for every cat? The cost will also determine whether it is possible.
     
  6. Idjit's mom

    Idjit's mom Well-Known Member

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    Apr 3, 2018
    Sorry for the Dx, but at least you know what you are dealing with. Hugs and encouragement! :bighug::bighug::bighug:
     
  7. Pamela & Amethyst

    Pamela & Amethyst Well-Known Member

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  8. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    Hi Sara :bighug::bighug::bighug::bighug::bighug:

    I was the same as you. Got the IAA diagnosis first and made peace with it, then got the acro diagnosis the next day. My Neko was 11 then.:(

    There are three categories of treatments, well really four. The first is hypophysectomy, or surgical removal of the pituitary. It's very tricky surgery and only Royal Veterinary College in London has a good track record. In North America, some of the surgeries have been done at Washington State University (WSU), but not many. It's a risky surgery with results related to the surgeons experience. The second category of treatments is radiation therapy, with SRT or Gamma Knife having the best results. The cheapest is again WSU, Sara just had it done for Pig @LuvinThisPig . Cost was around a couple thousand. CSU is several times that. Anne did a post in the high dose forum with places and prices in late 2015. Read down this entire post for more, including places in Canada. Cost depends on number of days of radiation plus any extras cat might need. Ie. a cat with a heart condition may need to stay overnight at the clinic. A cat with a small tumour not visible on CT scan may need an MRI.

    Pasireotide belongs to the category medical treatments, along with cabergoline or cabergoline along with octeoride. It's either a daily or monthly shot. Ask your vet for a quote. When I looked a couple years ago, pasireotide was incredibly expensive. Like $1500 to $2000 per month. The daily version, quotes I have given, doesn't have as good a results as the monthly version, Signifor LAR or long acting by Novartis, that is given once a month. My vet could not get quotes then for the LAR version because it was so newly approved in Canada. It is even more expensive. :eek: So far I don't know of anyone in North America who has ponied up for pasireotide. The only ones who have used it are in the U.K. As part of RVC research, with the drug donated by Novartis. Worth asking the vet in case prices have come down significantly. If they haven't, the vet may be more willing to have you try cabergoline. We have had one cat here go OTJ on it, and several need reduced doses. However, there is no long term data for it yet. We have heard from RVC (hotbed of the latest research in acromegaly), that coupled with octreotide, it does better.

    And lastly, we do have some people who chose not to treat, other than with appropriate amounts of insulin. We have had a couple kitties last as long as four years, though not the average. Neko lived not quite 4.5 years after SRT. Most acrokitties are older cats, and some get other conditions.

    If you do decide to treat, sooner is better to mitigate the effects of the growth hormone, not all of which are reversible by treatment.

    Feel free to lean on us, ask many questions. I know I had a ton at the point you are now.:bighug:
     
  9. Ella & Rusty & Stu(GA)

    Ella & Rusty & Stu(GA) Well-Known Member

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    Jan 11, 2010
    Sending tons of support for Thomas and you. You can do this!
    :bighug::bighug::bighug:
     
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  10. Sara & Cats

    Sara & Cats Member

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    Mar 8, 2018
    My vet is looking into treatment suggestions and costs and I will hear back in a few days. I will be doing my own research and trying to decide what I'd like to do.

    @Wendy&Neko The vet did say pasireotide was expensive but $1500-$2000 made my eyes pop out of my head. With that price, I would seriously consider SRT as well. For the short term cabergoline paired with octreotide seems like a good option. Hypophysectomy (sounds risky) and Gamma Knife (more expensive than SRT) are not options I would consider. It's helpful to know that others have travelled to the US from Canada for treatment. Did you fly or drive? Are there any issues/considerations when taking a pet to another country?

    I really don't have the money to treat but other than diabetes and now acromegaly, Thomas is in great condition.

    On another note and thinking ahead to the future for my other cats, is there a Canadian pet insurance plan that would cover these costs? I've never had a cat need such expensive tests and treatments in my life

    @Amanda and a Loudogg @Chris & China @Idjit's mom @Pamela & Amethyst @Ella & Rusty & Stu(GA) Thank you all for the support
     
  11. Chris & China

    Chris & China Well-Known Member

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    May 10, 2013
    There isn't an insurance company ANYWHERE that will cover the costs. Once a cat is diagnosed with a disease, it's a "pre-existing condition" and nobody covers any costs of treatments

    One of our other members just got done with SRT treatment in Washington that was a lot cheaper than it was at Colorado where Wendy had hers done.

    @LuvinThisPig is her forum name
     
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  12. Sara & Cats

    Sara & Cats Member

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    Mar 8, 2018
    @Chris & China I realize that no insurance company will pay for pre-existing conditions so I'm on my own for Thomas. For my other cats, if we signed up now and in the future they had diabetes or something else. Are there any Canadian companies that would actually cover SRT?
     
  13. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    We did have one Canadian member from Saskatoon have SRT paid for by insurance. I can't remember the company, been like five + years. Leo got treated three weeks before Neko.

    I both flew and drove to Colorado. Neko's tumour came back after three years. First cat to have SRT twice, but not the last. It was three days drive each way. Having a buddy to spell you off is a good idea if you drive. You do need a medical certificate from the vet to cross the border. They will ask about it if you fly. Land border guard didn't even blink, but that was before the current US administration. Depending on the state, you may need a rabies certificate or letter from the vet. I also had a letter describing her medical conditions and necessary meds/syringes, etc. Airport security were totally cool with all that, but pulled me into secondary screening for the cat litter. :rolleyes:If you fly, only certain airlines let you take a cat into the cabin area. Kitty goes under the seat in front of you.
     
  14. Chris & China

    Chris & China Well-Known Member

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    I don't know specifically about SRT treatments (when it comes to insurance companies, they have a way of finding loopholes anywhere they can....they might consider it "too experimental") but if you insure a cat early and then it develops diabetes, they should pay for most costs of treatment.
     
  15. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Hi Sara - I'm sorry to hear the Acro diagnosis. Wendy has summarized the treatment options that we know about.

    Leo got SRT in October 2016, and his primary Acro symptoms receded within 6 months. He is about to turn 12. He has other health issues including small cell lymphoma (since spring 2017). His Acro journey is documented in the forum (link below). I drove him round trip from Austin TX to Ft. Collins, CO for the SRT. I would do it again as well. It was expensive but I had the money.
    Leo's Acromegaly diagnosis and treatment

    It is best to treat Acro as soon as possible because of the side effects. Leo is now about 1.5 years post SRT. The biggest Acro side effect is the tissue growth in his throat. If anything, it has gotten worse in the past few months. He has a lot of trouble eating and swallowing food.

    In summary for Leo, he was up to 18 units/dose and that was increasing every few days. Now he is at 3.0-4.5 units/dose, so the diabetic side effects are substantially manageable now. I'll be happy to answer any questions.
     
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  16. LuvinThisPig

    LuvinThisPig Well-Known Member

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    Dec 8, 2017
    Hi Sara! I am sorry about the double diagnosis! Its so frustrating! :bighug::bighug::bighug:

    I did want to chime in as it seems that cost will be a factor for you, just as it was for Pig and I. I recently drove Pig across country from Oklahoma to Washington to seek SRT treatment at WSU. Even with the travel costs, my overall cost came in far lower than the treatment protocol at CSU. Now, you will need to keep in mind that the SRT protocol at WSU is very different than most.

    While WSU is far cheaper than most protocols, there is a certain bit of risk in it as well. Not a risk to the cat, of course, but a bit of a gamble. The difference is that where CSU uses moving MRI technology to adapt the SRT beam to the shape of the kitties pituitary tumor, WSU works in the opposite way. They do use a moving SRT beam, but rather than conforming the beam to the tumor, they look for tumors that conform to their beam. Basically, they use a circular, rotating beam to wrap the tumor. While this sounds like a pretty big gamble, because what if you travel there and Thomas' tumor does not fit the beam, most of these pituitary tumors are more round than anything. At least, in WSU's research. In fact, per Dr. Fidel, there are very few kitties that have proven to not be good candidates. I believe they see more dogs with tumors not conforming to the beam than they do cats. Pig's tumor was even slightly square, but still round enough to make him the perfect candidate.

    Furthermore, where places such as CSU do lowered doses of radiation of the course of 3 days, WSU uses a larger dose of radiation over the course of just one day. Not specifically speaking of any particular treatment facility, the basic premise here is that many places do something like 8,000gm x 3 to equal 24,000gm total. However, in the biologic world, 8,000 x 3 is not necessarily equal to 24,000 x 1, with the 24,000 x 1 being the far stronger. In fact, per Dr. Fidel, this is what most oncologists strive for in the human world. Given that the brain can handle 15,000gm of radiation in a single setting, this is the measurement of therapy that WSU has chosen to use. They have found that a singular sitting of a stronger dose is sometimes more effective in cats, especially, than the more fractionated regimes. If you have any questions regarding the protocol specifically, here is the link to Pig's Dr. explaining precisely how they do it at WSU.

    While there is no one on the board, currently, that has treated at WSU other than Pig, I am in contact with 3 other people who have sought treatment there. One about 2 years ago, one about 3 months before Pig, and one precisely a month after Pig. Actually, the one who sought treatment after Pig and I is on the board, but I cannot be sure of her screen name. I followed the lead of the wonderful lady who went there about 2 years ago and while individual results do not necessarily speak to personal success, her kitty is now OTJ and went so only 1.5 years after treatment.

    Currently, we have nearly halved Pig's dose of 50uL in only a month following treatment. We have stalled a bit on 26uL and I am working out some diet kinks, but the reduction is undeniable. Granted, results and reduction times will vary and they do come in spits and starts, to half his dose not even 2 months following treatment is a major win!! We still have about a month to go before we are even suppose to see results!

    I sincerely hope this helps.

    Oh! Costs... I am working on putting together a summary of procedures and prices for his forum in the high dose thread. But, for the moment... I had them run several other tests over the bare minimum for treatment and even with the additional tests, we walked from WSU paying right at 2,000$. Travel cost me a little more than that and supplies ran about $1500. Total cost for a cross country drive and treatment for Pig (plus numerous ancillary tests) came in about 6,500$. Just shy of the treatment cost @ CSU, I believe...
     
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  17. Pamela & Amethyst

    Pamela & Amethyst Well-Known Member

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  18. Pamela & Amethyst

    Pamela & Amethyst Well-Known Member

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    Dec 11, 2016
    Hi I am disabled and want to give my little girl everything I can I have been greatfull for some donations and her vet ,so that she has been on Cabergoline for 2 1/2 months She has reduced her insulin from 24 units a day to 15 Units a day GOOD LUCK I know I you how feel my little girl is battling 5 medical conditions at only 5 years old:bighug:
     
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  19. Olive & Paula

    Olive & Paula Well-Known Member

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    Sep 6, 2015
    I was pricing the pasireotide couple of days ago as it was suggested to me also. The cheapest I found was at Giants Pharmacy (supermarket) for NOW SIT DOWN FOR THIS. Over $13,778.00 A MONTH with a coupon.
     
  20. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Yes, that price is enormous. It is similar to a price that one of our members posted on the Acro forum in the past 6 months.
     
  21. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    Sara, I meant to ask, what was Thomas's IGF-1 number? Hope you aren't feeling too overwhelmed.:bighug:
     
  22. Sara & Cats

    Sara & Cats Member

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    Mar 8, 2018
    I've been feeling very overwhelmed with what we should do. Our vet has been wonderful looking into everything for us and making all the phone calls.

    @Wendy&Neko Thomas's IGF-1 was 278nmol/L

    @Olive & Paula The quote I got for pasireotide from my vet today was $4200/month which is now sounding like a deal compared to the price you found.

    The quote for CSU was $8000 which is out of our price range with travel and exchange rate.

    For the moment we are doing further research on SRT at the western college of veterinary medicine in Saskatoon. Are there any members who have had SRT in Saskatoon? The earliest we could get in is the end of July or August sometime.

    Would it be beneficial to treat with cabergoline in the meantime? My vet has not brought up cabergoline but will be calling me back with more information tomorrow and I can mention it.
     
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  23. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    I know of one member who had her dog treated with SRT at Saskatoon. Clearly not for acromegaly. That facility was just being built when we went to CSU. Did you get a quote from Saskatoon? Just curious. Is Washington State too far?

    Was the paireotide quote you got for the daily or once a month version?

    If you can lower the growth hormone output with cabergoline while you wait for SRT, that's a good thing. And there is always the chance Thomas will be one of those cats that responds well to it. We have had two cats go OTJ on it.
     
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  24. Olive & Paula

    Olive & Paula Well-Known Member

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  25. Sara & Cats

    Sara & Cats Member

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    Mar 8, 2018
    @Wendy&Neko The pasireotide quote was $4200/month. Washington State is the furthest distance of the three options. Plus it sound slightly different than SRT offered at other places. The price is attractive though. The quote from Saskatoon is $7000 but there's some blood work and imaging that would need to be done before our visit there. The CT scan would be done while in Saskatoon.
     
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  26. JeffJ

    JeffJ Well-Known Member

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  27. Bronx's dad

    Bronx's dad Well-Known Member

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    Cabergoline is the next best thing if SRT is out of your price range. One kitty on here actually went OTJ on cabergoline. Cost would be about $100-$150 per month depending on Thomas' weight.
     
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  28. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    @Olive & Paula Pricing in Canada is likely different than for the US for medications. Three years ago I got a quote for the short acting version of pasireotide for something like $5000 for a 3 months supply.

    Sara - thanks for the info on Saskatoon. All places doing SRT want recent blood work, some want an echcardiogram done first so you know it's worth while going. Given current exchange rate, it's a viable option for some.
     
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  29. Olive & Paula

    Olive & Paula Well-Known Member

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    Maybe I should come there for it. Wonder if Mark's will sell it.
     
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