Diagnosed today by the RVC :(

Discussion in 'Acromegaly / IAA / Cushings Cats' started by portana, Jul 24, 2017.

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  1. portana

    portana Member

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    Jun 18, 2017
    After enrolling Simba in their Exatenide trial he was tested for acromegaly and unfortunately has been diagnosed with it today.

    I had so much information on the phone that my head is spinning. I also read some files here to educate myself in the matter and I read a few threads too.

    On the phone I was told my options were:

    1. Expensive Surgery;
    2. Some sort of very expensive treatment (injections involved);
    3. A less expensive treatment that has had some success but not like the previous two;
    4. Radiotherapy.

    Has anyone had any experience of these treatments recently? How did it work?

    Thanks
     
  2. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    Hello, so sorry to hear your kitty has acromegaly. :bighug: My girl kitty had the radiation therapy in the US. Price wise, it's not much cheaper than the surgery on offer at RVC and surgery is the gold standard treatment, if you treat. Neko had acromegaly for five years, so the radiation therapy did probably extend her life, and most of it until the very end was good quality life. At the time of her radiation, it was the only option around and quite a few other kitties have had it done. RVC are at the forefront of discovering the newer available treatment options.

    We have had one person try the less expensive treatment called cabergoline, @Marvin's Mom - Nat , but it's still early weeks in treatment. On the bright side, his insulin dose has gone from 8 units to a drop in a few weeks and sounds like he is feeling much better, so one of the successes. But we don't have long term data on him yet.

    One thing to keep in mind, the majority of people cannot or do not do treatment due to cost or travel. As long as you can get your cat to a good insulin dose where he is most of the time under renal threshold, you could still have some years together. Acromegaly is a slowly progressing disease. You just have to be aware of some of the possible side effects of the growth hormone, and possibly manage those conditions.

    Feel free to keep asking questions. I know my head was spinning when I heard the diagnosis. Most of the acro moms and dads here hang out on the Lantus and Levemir forum. Levemir is a better insulin for acros, especially if you get into the higher doses.
     
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  3. portana

    portana Member

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    Jun 18, 2017
    Thank you.

    My head is spinning, yes. So much information and I'm a worrier to top it up :(
     
  4. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Just sending you a little encouragement. It's not a good diagnosis, but there are lots of other acrokitties on the Lantus/Levemir group that can help you learn to manage things. This group has been inactive for years. Post there and you'll get plenty of help.
     
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  5. portana

    portana Member

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    Jun 18, 2017
    I didn't think to post there because my cat is on Prozinc. I will take a look, thanks.
     
  6. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Hi Portana

    Kudos to you for starting and maintaining a spreadsheet. And kudos for testing preshot and at nadirs.

    Both Julie and Wendy had their cats treated with SRT (Stereotactic Radiation Therapy). They also helped me gain knowledge, and I also had Leo treated with SRT. See Leo's thread in my signature for the history - mostly in page 2 of the thread. The SRT resolved his acro. The radiation team told me the mean life extension for SRT is 300 days. I think we caught it somewhat early with Leo, so I am hoping for years. But he also has small cell lymphoma now.:(

    There is good info in the stickies on this acro subforum. As Wendy pointed out, acromegaly can be slow growing. Many people just treat with Levemir, in increasing doses. The doses can range up to 20 or even 50 units/shot. At some point, even the Levemir can be quite costly because of the volume of insulin used.

    I looked at Simba's BG. In general it is real high. I like Levemir because it overlaps the 12 hour mark. Those real high numbers cause glucose toxicity. One side effect is neuropathy - which affects mobility in the hind legs. One of your goals will be BG regulation and getting those numbers down.
     
  7. Carolien and Skittles

    Carolien and Skittles New Member

    Joined:
    Feb 5, 2018
    Hi everyone - what an incredible forum this is and thanks for all you have shared already for us newbies to read up on. Skittles, our wise tux of 10 years most likely has acro. Tests will be done later this week. He was diagnosed with heart arrhythmia and has been in medication. He has enlarged organs. Not diabetic as of 11/2017 but elevated glucose in urine. Blood showed no cancer or tumor. Vet was not sure he would sustain anesthesia which is why we held off additional testing and scans for now. My question is about food and weight. Oddly Skittles has been losing lots of weight. In view of possible acro diagnosis I was thinking the following and seek your expert advice: because he will probably develop diabetes, he should eat - low fat
    - high protein

    Because possible CKD and UTI issues,
    -low iodine.
    -NO raw

    And then as he is likely to develop hyperthyroidism (does any of your furry friends have for excess hormone excretion?)
    - no seafood

    I am now eying ziwi venison but would love your insights. I am concerned about weight loss and his voracious and constant appetite.

    Thanks all!!
     
  8. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    Carolien and supersweet Skitties. If he is peeing glucose, he likely has elevated blood sugars. Are you home testing his blood sugars? Diabetic cats, even acros, can lose weight at first when they are unregulated. You can do the IGF-1 testing as a blood test. I didn't bother getting the CT scans done until I knew I was going ahead with treatment. Neko's IGF-1 was high enough it likely wasn't anything else.

    As for food, good quality protein and low carb are the most important. Nothing wrong with raw - I fed it to Neko for 4 years. Also to my other cat who had cystitis. Just add lots of water - lack of water contributes to urinary issues. And if you can, chose a raw or canned that is low phosphorus. That'll help both the CKD and the urine system. For raw food, that means chosing something that uses eggshell calcium instead of ground bone. The food list here lists a lot of the common manufactured canned foods, including their carb and phosphorus numbers. Carbs under 10% is best. Don't worry about fat or iodine - most food companies won't measure iodine anyway.

    I never did feed seafood while Neko was diabetic. Her T4 numbers were always good. We do have a couple members whose kitties had hyperT as well as acro.

    If you want more feedback, you might want to start your own post. You'll more likely get more eyes on you that way.
     
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  9. Carolien and Skittles

    Carolien and Skittles New Member

    Joined:
    Feb 5, 2018
    Thanks so much Wendy!! So appreciate your quick response. Will start new post after the testing. Thanks for the food list. Very helpful.
     
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