8/4: Big Day for Oren tomorrow...Acro/IAA confirmation :(

Discussion in 'Lantus / Levemir / Biosimilars' started by Megan & Oren, Aug 4, 2015.

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  1. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    Hello all;
    not been regularly posting, but regularly checking in and plugging along...Sorry for the long post now..
    Oren is now up to 7.5 units Lantus, and I finally got his acromegaly and IAA test scheduled for tomorrow. Well, at least the blood draw. For those who may remember, since mid May, I had been working with a vet, not so affectionately known as DRISTHATCLEAR. In an interesting turn of events, she is now on maternity leave (had no idea she was even pregnant, or so close). So, the original vet I had seen at this practice is now taking over with Oren. She was much more reasonable, and certainly easier to communicate with, so that is good. The downside is she is only available about 2.5 days a week, on days that don't mesh well with my work schedule.

    We've been seeing slow improvement. After weeks of getting back on track from ISTHATCLEAR sort of pushing us to start over at a lower dose (at the start of the 2nd new vial), diagnosing pancreatitis (via SnapFPL only) and doing 2 week curves, we'd been mostly stuck in pinks and reds, with occasional blues. Then suddenly at 6.5 units, he had one evening in green numbers. Haven't seen green again, but when he hit 7 he seemed to be coming down to yellows and highs in pink, with some blue numbers. The last few days on 7.5 he seemed to be creeping up a little again (we're down to literally the last drops of his 2nd vial of lantus, about 2.5 months old)... perhaps it is fading? Then he pulled a 105 this amps. It is a work day, so i gave only 5.5 at shot time, left food and came home at lunch to check. He was fine, zoomed back to 331 at almost +5.

    It has been ridiculous to schedule this test, even though ISITCLEAR left instructions in Oren's file that we were to proceed with it.. Lots of calling and being on hold and rechecking how to schedule etc... but finally, we're in for tomorrow.

    I have to say, but i feel both somewhat vindicated, and also somewhat guilty; we have ended up exactly where I wanted to be 2 months ago when I first contacted her about getting these tests. He has relentlessly been increasing in dose (and everytime I sent his curve and suggested a .5u increase she agreed) and she has seen the need to go through with these tests. She also suggested it may be time (after finishing this 3rd vial I just got, and depending on the results of these tests) to switch insulins, probably to Levemir. My guilt comes in from not just proceeding ahead when she took control... did I cost him valuable time?

    His chronic pancreatitis doesn't seem to be much of an issue, in terms of his healthy, vigorous appetite, he's been maintaining and even sometimes increasing a little, in his weight. PU/PD seems pretty good, pooing mostly normally. Overall, pretty happy attitudes. Think his ear infection is at least managed (he reacted quite poorly to the ear drop Baytril Otic, they got very angry/red after 3 days so I discontinued) and I just wash them occasionally w/ T8 keto solution.

    If anyone can spare some good juju, vines, energies etc. for my sweet boy I'd appreciate it. Knowledgeable eyes and comments on his spreadsheet would also be appreciated. My heart SO wants this just to be IAA and not acro, if it's anything... but it will be what it will be...

    So many sad GA's in the last few weeks/months here... I wish all kitties and their beans good days and healing when needed.
     

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  2. Peg and Toby

    Peg and Toby Well-Known Member

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    Aug 5, 2014
    Sending prayers and vine that Oren doesn't have Acro. Toby is a high dosed cat but has never been tested.
     
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  3. elizabeth and gus

    elizabeth and gus Well-Known Member

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    Feb 25, 2015
    Dear Megan

    Prayers, vines and hugs to Oren and you. Praying for good outcome.
     
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  4. tiffmaxee

    tiffmaxee Well-Known Member

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    Nov 15, 2013
    Prayers and vines for both of you. :bighug:
     
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  5. Chloe'sMom (GA)

    Chloe'sMom (GA) Member

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    May 14, 2015
    I'm not sure what Acro is (I still have so much to learn), but I pray for you and Oren during the testing! Hugs! :bighug::bighug:
     
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  6. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    Hi Megan, good to see you and an Oren update. :bighug::bighug: Very cute pic of your boy. Good to hear the pancreatitis might not have been much of anything and that his ears are better. My civie got the SpecFPL test done, tested positive, not really any symptoms other than a lot of hairball pukus, which is now down to almost nothing with the worst of the shedding season over.

    Sending you lots of good test result vines. It took me a while to push Neko's vet to run the IAA/Acro tests. In consultation with the local IM vet specialist, she told me we didn't need to do that until we got over 10 units, which we never did. The delay was probably a month. As for timing, unfortunately it may be at least a week until you get results. Michigan State University needs the blood by Wednesday to start running the tests. The IGF-1 (acro) tests are only done once a week. IAA results might come sooner - I got mine one day earlier. Please post the results here when you get them, we may be able to provide some dosing ideas to get Oren in better numbers sooner. You do want him to be spending as much time as possible under renal threshold, though he is looking better.

    I do have a couple of comments about the spreadsheet. I'm probably going to sound like a broken record, but getting at least one additional test for every night cycle is very important. Many cats (and it seems Oren is like this) really prefer to go lower at night. That 105 this morning has me wondering what he got to overnight. Once you get to the higher doses, you have a larger depot and it's even more important to see what he is doing on a dose as those depots can last longer. Even a +2 or +3 before bed provides great information. I also think you are holding doses too long. You test plenty for following TR, and even the SLGS method would have you increase after a week. Having said that, since you saw a 105, I'd hold this dose at least 8 more cycles. You'll have to rebuild the depot after the reduced dose. (totally understandable on a work day).

    If he does test positive for IAA/acromegaly or both, you might want to consider a switch to Levemir. The only down side is the later nadir, but many larger dose cats seem to be very flat on it.
     
  7. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    Hi @Wendy&Neko ;
    yes, for a while there Oren was getting better numbers at night, but lately seemed to be changing that up?! and then out of nowhere, this 105. ANd i kicked myself for not doing a test last night. I'd gotten somewhat complacent bc of the last few night tests being 300s... They will keep you on your toes. Indeed, i see that the blood needs to get to them on Wed for the IGF-1 tests; this scheduling on my end has been so problematic, it's been frustrating. I called last week initially to get this setup... and it dragged until tomorrow. Is there likely to be a problem w/ them storing the blood for a whole week? Would I do better to try and reschedule perhaps to Mon or Tue of next week?

    I will most definitely post results.. and yes, Levemir is under consideration already...though I just got a brand new vial of Lantus which I'd hate to waste...

    ETA: I've noticed Oren tends to have a later nadir on Lantus than many, sometimes its even the AM or PMps... so perhaps levemir won't be much different?
     
  8. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    Don't worry, just go ahead with the blood draw. I ended up doing the same thing, only since I am in Canada it took even longer to get there. It just meant a longer nervous wait on my end. The blood is shipped with an ice pack and they'll store it until they run the tests.

    I'd go ahead and use up your Lantus vial first, no need to waste the money. Neko also occasionally nadired at PS time on Lantus and now more often on Levemir. It's ECID, but with Neko, most things were two hours later on Levemir than they were on Lantus. The biggest issue for me is that she doesn't onset until after +5, and I'm usually in bed before then. I have to instead do some +9 wake-ups to see how she's doing. Works for me cause 4/7 days I'm up then for rowing anyway.
     
  9. Tricia Cinco(GA) & Harvey

    Tricia Cinco(GA) & Harvey Well-Known Member

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    Jul 18, 2011
    Hi Megan.

    It's good to hear from you. Funny how Dr. ISTHATCLEAR came through for you in the end. Maybe motherhood will soften her attitude (or being sleep deprived will worsen it ) :p.

    Sending tons of good vines for tomorrow. It's hard to know what to hope for - if both are negative, then why does Oren need so much insulin? At least you'd know the reason. I guess I just hope for the best possible outcome. :bighug:
     
  10. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    Thanks so much Elizabeth; SO glad to hear Gus is doing better today! How kind of you to take time to wish us well w/ your own worries going on!! Praying sweet Gus will be home soon and feeling better.
     
  11. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    Hi Tricia;
    yeah, it's kind of ironic! She and i had been maintaining a highly professional, email only relationship. But I never felt comfortable with her, and she's still completely not supportive of the timeframe of following TRP. Doesn't support the protocol..., hence her twice as slow dose changes..
    My last thing to consider is a dental; though cursory looks say there isn't bad tartar buildup, his breath is terrible; but he doesn't seem to have trouble eating, isn't pawing at his mouth or anything... but who knows?
     
  12. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

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    Feb 17, 2011
    They'll hold his blood sample until they run the test and it will be just fine. Did you check the MSU site for any directions about mailing? Like if you need a cold pack in with it?

    One possibility with the Lev/later nadir is moving your shot time earlier. Although when a cat gets tightly regulated on Lantus or Lev, often the cycle is flat. If you get a lower preshot and are going to be home - you might consider going for it and not decreasing the dose. I've noticed you've done that several times - kudos to you! When you're headed off to work that's a little more dicey.

    Sending all my good juju your way. It's just a blood draw - I don't know why they'd even need a vet appt for it. The tech can likely draw the blood.

    It's great to see you. I've stalked ORen's ss once in a while to see how he is - once you're a part of the LL family, you're always a part. :bighug:
     
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  13. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    hi @julie & punkin (ga) ; nice to see you all too!!:bighug:
    yes, it is just a tech doing the blood draw tomorrow; the issue was I left a message w/ the other vet last Friday and she was supposed to get back to me Mon to tell me what was up; no one did get back to me, and so I did have to call again myself yesterday, then it was phone tag again blah blah... Sigh. more wasted time.

    I too am stalking and reading many condos etc. Though I found it a little easier on me to pull back a little, I still rely on the huge source of knowledge and support here; SO much to read and learn. And I've cried a lot over all the recent GA's and worried for the newbies etc. This is a remarkable family indeed.

    I wish I had shot full dose this a.m, because as it turned out, i was too nervous and came home anyway, after leaving him plenty of morning snacks. But i don't always know what maybe shaping up in the office until I get there, so I felt it was safer to do the dose decrease this a.m, just in case..
    Glad I didn't skip it entirely though! He's holding in mid 300s this afternoon...
     
  14. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

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    Feb 17, 2011
    It's ok - if you have to err, you want it to be on the side of safety. Oren will recover quickly from the reduced shot - for one thing, he still has a depot the size of his 7.5u dose and that would've continued to help hold down his blood sugar today.

    ah, the joys of bureaucracy. man I had to spell that twice to get it right, if it even is now!? LOL. Anyway, glad you've got it scheduled. Let us know how things go - we'll be cheering for just iaa and no/little acro. To put the #s in some context, Punkin's IGF-1 was 281 (testing for acro, under 100 is normal) and his iaa was 7% (under 20 is normal, if i recall correctly.) All cats with insulin being injected have some iaa because you're injecting a foreign substance into them and they create antibodies against foreign things.

    Like Wendy, we got the iaa results first. It took us about 2 weeks because apparently, the vet had to "retrieve" the results from MSU and we didn't know that. So I kept nagging everyone but not getting any test results. Kinda frustrating.
     
  15. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    hm, wonder if I can ask them to explicitly send test results to my vet or me? If anything has changed about that since you did yours a while ago... I note on the acro test sheet, that tests run on Wed have results by that Fri., so theoretically, there could be acro results available by Fri. the 14th perhaps. But this new vet doesn't work on Fridays!! Grrr.... thanks for the heads up!
     
  16. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

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    Feb 17, 2011
    At least when we had it done they would only release the results to the vet. I forget what the exact situation was, but I think the vet had to somehow "retrieve" the test results - maybe they had to have an account to access them online? I'm not sure, I just remember we had an issue with it. It's been 4 years now, though, so my memory could be wrong on the details.
     
  17. Andrea&Tennessee (GA)

    Andrea&Tennessee (GA) Well-Known Member

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    Dec 15, 2014
    Hi Megan,
    I am so glad that you have ben able to schedule Oren to get the testing done. I understand how nerve racking it can be. In our situation the vet did not want to open an account at MSU, so they had me send in the blood, and just put the vet info on the form. The results were sent to the vet in about a week. Acro came first, (IGF-1 level of 112) then the IAA came in. I was not told what his level was, only that it came back negative.

    At the time we did the blood draw for the tests, I asked my vet about switching to Levimir, She didn't want to do it because she felt that it was "too much" for her to handle at once. Not really sure what she meant by that, but since then I have just decided to stay with Lantus for now. For the most part Tennie gets good results from it and his nadir's work better with my schedule.

    Regardless, vines, prayers and good juju for you and Oren.
     
  18. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    Hi @Andrea&Tennessee !
    Thanks bunches for checking in ! wow, Tennie's IGF-1 level is just above normal according to Julie's info... Is that why you opted not to have any treatment at this point? Or is it because of the heart issues? In anycase, I pop in on ya'lls condo from time to time to see how he's doing. So glad to see he's holding his own. :bighug: to both of you!
     
  19. suki & crystal (GA)

    suki & crystal (GA) Well-Known Member

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    May 4, 2014
    Hi Megan, just wanted to add our very best anti acro vines into the mix for Oren, hope you get a negative result but if you don't, you are in the best possible place to get experienced advice and support. Will be keeping paws crossed for you both.
     
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  20. Tina & Sammy

    Tina & Sammy Well-Known Member

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    Jan 7, 2010
    It is good to see an update on Oren. Sending you good vines for the tests tomorrow.
     
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  21. Andrea&Tennessee (GA)

    Andrea&Tennessee (GA) Well-Known Member

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    Dec 15, 2014
    No, I just decided that he is 14 years old and SRT is financially more that I can handle. If he were younger that may have changed my decision. But then again there is his heart issue, which I am assuming would be a factor in treatment.
    Hugs to both you and Oren!:bighug::bighug:
     
  22. Marilyn and Polly

    Marilyn and Polly Well-Known Member

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    Apr 2, 2014
    Vines for you and Oren from this bean and her acro cat, Polly. We had the tests run a year ago, July '14. Opted for SRT. Completed Sept. '14.

    Whatever the results, step by step...with the amazing help here, you and Oren will get through this.

    Marilyn and Polly
     
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  23. Tiger(GA) and Ruth

    Tiger(GA) and Ruth Well-Known Member

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    Apr 15, 2014
    (((Megan))) So nice to see an update from you- glad Oren is doing so well and great news about DRISTHATCLEAR. (My youngest son had a teacher like that in middle school-our happiest day was when she left for maternity leave :rolleyes:) Sending tons of vines for Oren, and hey, there is the possibility it isn't acro or IAA, you never know.
     
  24. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    oof. this is sure an expensive road to travel. But, the deed is done, and the techs at my vet said they will get the results from MSU, and my vet will call; one of them knows someone who works there and they've sent other tests there. So, they said 6-7 days for the IAA and more like 2 wks for the acro.
    Time for the size extra large patience pants! Oren of course, charmed everyone again because he's so darn sweet.
     
  25. elizabeth and gus

    elizabeth and gus Well-Known Member

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    Feb 25, 2015
    Megan

    Paws crossed for good news on the tests.
     
  26. MollynSkooter

    MollynSkooter Well-Known Member

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    Jun 4, 2014
    I had Skooter go in for a dental because he had never had one and I wanted to see if that might be the last lil push he needed to get off insulin. When they did the initial exam, before x-rays and such, they thought he looked pretty good....but then the x-rays showed the real problems. He had six toofers taken out in the first dental and then a month later went back and had to get four more pulled. He has been doing SO much better and is now down to 0.10. For awhile there everyone felt really confident that he would get his OTJ, but he is a stubborn lil boy, but is doing really great.

    So I would say that if he is healthy enough, that is definitely worth taking a look at doing.....Sending lots of good vibes for tomorrow and a few extra patience pants for you while you wait for the results!
     
  27. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

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    Feb 17, 2011
    Even Marje, who is very in tune with Gracie, didn't think Gracie needed a dental, but when they got in there, they found one tooth that was really bad. If I'm remembering correctly. Diabetic mouths are often icky with all the sugar in their saliva.

    Glad you got the tests done - knowledge is power.
     
  28. Tricia Cinco(GA) & Harvey

    Tricia Cinco(GA) & Harvey Well-Known Member

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    Jul 18, 2011
    Just wanted to pop in and offer more vines. The waiting is the worst, isn't it? :bighug:
     
  29. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    yes, I'm biting nails in the waiting. I'm hoping they run the Acro test this Wed and I MIGHT hear something by Fri. Had to up him to 8 u this evening; he's suddenly creeping up again. an ugly red at PMPS tonight. and worse, a black AMPS Sun a.m. This after slowly coming down to mostly yellows and pinks for a while. I'm so sad about this. Something is definitely going on.

    Initially, dr. ISTHATCLEAR was reluctant to consider teeth w/ his BG's as they were (300s-400s). Is that typically a problem? it's catch 22, how to get the numbers down sufficiently to deal with a dental, if the dental would help the numbers?!
     
  30. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    Your other option is to go to a vet that specializes in dentals. Neko's BG was nothing to write home about last week when she had her dental with the specialist. And they are more used to special cases. Neko with her acromegaly, heart murmur, early stage CKD and high BG was not their most critical patient. Usually the regular vet has to provide a referral is you have a specialist nearby. Or keep trying to find a vet comfortable with doing the dental when kitty is in high numbers. Neko's first dental by her regular vet was I. Her "red" period.

    I got my MSU results on a Saturday and a Sunday. Paws crossed the waiting is over soon.
     
  31. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    @Wendy&Neko ; is it more dangerous for them to be under anesthesia if the numbers are high? is that the reluctance? sadly, perhaps, dr. ISTHATCLEAR is the dental specialist at this practice.. I know of a low cost place that does dentals and surgeries, but they do not do xrays during the procedure. Just a visible exam and poking about to see if any teeth need extracting. The good thing is extractions are not extra, it's a flat fee for the anesthesia, cleaning and any necessary extractions.
     
  32. Anne & Hyde (GA)

    Anne & Hyde (GA) Well-Known Member

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    May 18, 2015
    Sending good thoughts!
     
  33. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

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    Feb 17, 2011
    If you look here in the "Where Can I Find?" post in the second part under dental, you'll see a link to find an accredited veterinary dentist in your area.

    Fingers crossed for your test results to come soon. Waiting is hard.
     
  34. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Megan - I don't know the logic behind the reluctance to do dentals in high numbers, but I see it a lot here.
     
  35. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    I feel so beaten down. His pmps tonight was 404, and now at +3 he's 484, even after the dosecrease to 8 units. He's turning around in a big, bad way. And I feel completely helpless.
     
  36. Sienne and Gabby (GA)

    Sienne and Gabby (GA) Senior Member Moderator

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    Dec 28, 2009
    I'm so glad you're getting the tests run. At least you'll know what's up! Hopefully, that will mean less arguing with Dr. ISTHATCLEAR. (Have you suggested that she call you Ms. ITOLDYOUSO?)

    The high numbers from tonight are probably due to the reduced dose. Remember, with a big depot, you may not see an immediate response. It can take a cycle or two.
     
  37. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    the reduced dose was only once, 12 cycles ago?! can it really be that influential this far out?
     
  38. Megan & Oren

    Megan & Oren Member

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    Jan 30, 2015
    still no word from the vet about the IAA/Acro tests... I don't think she's in tomorrow, so I probably have to wait till Wed to call again... Meanwhile Oren continues to creep up. He's been at 8 units for a week now w/ nothing better than some high blues. Guess I better take him to 8.5...

    Looking for some advice on how to best make the decision about treatment of Acro, if that is indeed the diagnosis. Best I know, Oren is about 12 years old. I adopted him in 2007, and the shelter said he was about 4 yrs old. But he could be older I guess..
    Is it possible that the acro. is what caused the diabetes? are there examples of treated acro kitties going OTJ? I am beginning to realize, that if he ends up being a truly high dose guy to manage, like Suki's Crystal, I'd likely spend as much on insulin alone in a few months as the SRT would cost! is there anyway to know from the numbers how quickly the tumor is growing? Do I assume that if the IGF result is positive, is it still necessary to get an MRI to determine tumor size before treatment? Or, if I choose not to treat, wouldn't I have to periodically monitor the tumor growth somehow? If it's slow growing and I hit a dose that seems to hold him in good numbers, is it possible he'd 'die with acro' not from it?
    I don't have confidence in the vets at this practice to give me sound advice about this, because I don't think they've ever dealt with it.

    I've been trying to be very Zen about this and just go day to day, but I'm beginning to get anxious about how to make decisions and my fear is starting to run away with me... Sorry, just needed to vent!:nailbiting::banghead::arghh:
     
    Last edited: Aug 17, 2015
  39. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    I think you should call the vet's office and ask if the results are in. They should be. Maybe they have to ask for them, but the tests should be done now.

    OK, I'll try to answer some of the questions. Yes, the diabetes is caused by the acromegaly tumor. It puts out excess growth hormone that in turn causes the liver to create IGF-1 which blocks the insulin receptors in the cells. There is a better description in the Acromegaly, What do We Know post - it's linked in the New to the Group Sticky, near the bottom. Some treated acro kitties got OTJ, also some non treated, but the latter is much rarer. Treatment choices are SRT and now hypophysectomy (surgical removal of the pituitary). RVC (Royal Veterinary College) did a promising study using the drug pasereotide, but say it's more expensive than surgery, which is their preferred option. Of course, you only want the surgery done by someone with experience. There are only two places in the US that do the surgery. Odds of OTJ are higher with surgery but it costs about twice as much.

    The IGF-1 values don't really tell you much, other than over 92 is positive. The folks at CSU (Colorado State University) told me there is no correlation between the IGF-1 number and the tumor size. Neko's tumor was quite petite and her IGF-1 number was twice that of Punkin who had a large tumor. You don't need at MRI or even a CT scan to see how big it is to move forward. I waited until I got to CSU before they did a CT scan, which they had to do anyway for the treatment. They will do SRT on almost any acro cat - the only limitation are the heart and whether they can handle the anesthesia. If you chose to go the hypophysectomy route, then you might want a CT scan first as it's not a great option if you have a large tumor. I heard of one person having the operation done, not all the tumor was removed, so now she's thinking of getting SRT too.

    Some people treat with just insulin and do what they can. Check out Toby and Tennessee as well as Crystal. You don't need to monitor the tumor or it's size, just follow the BG. Getting them into good numbers is the most important thing you can do. And yes, as older cats it's always possible they can get cancer or other issues that trump the acromegaly. A lot of acrocats seem to hang around 10--20 units or so of insulin. It's when you get the double whammy of IAA that the doses get higher. There's always exceptions, Neko topped out at 8.75U and had IAA too. If you chose not to treat (or even if you do), it's a good idea to get a heart scan. Enlarged hearts are a risk of acromegaly, often called the silent killers cause they can appear without warning. But they can be treated well with drugs. Andrea's Tennessee is an example.

    I could go on, sorry about the novel. Being Zen is a great way to go. :bighug: The cat is leading the dance, we follow, even more so if acromegaly is involved. Feel free to fire away if you have more questions.
     
  40. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

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    Feb 17, 2011
    Wendy's given you such a good explanation of all of it . . . if you look in my signature block, there is a link to Punkin's SRT adventure. I did a semi-cost analysis at the time of the comparison of an increasing dose vs the cost of the SRT. All of the costs would be different now, but you could make estimates based upon those line items.

    I think one of the things that helps keep the dose down is to get & keep the cat in normal numbers as quickly as possible. I'm not sure if you watched when Peg was fast-tracking Toby or Suki was doing that with Crystal, but it's like you have to go up and up in dose until you get them in green, and then they plateau on the dose. They still might move on the dose, but it does seem to help keep it down. On the German Katzen forum, they seem to typically see cats plateau out under 10u.

    Whether or not you treat the tumor with surgery or SRT is a very personal decision. Some people just give the dose the cat needs. I called and talked to Dr. Lunn before we decided to do the SRT. She went through the pros and cons of doing the SRT.

    Everyone will support you regardless of what you decide.

    If I'm following the dates above correctly, the blood draw happened on August 5th and then it would've been mailed. That's been 12 days. Hopefully the results are in by now or will be soon.
     
  41. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    oh, and yes. if he has acromegaly, it's highly likely the tumor grew and its hormones are preventing Oren's own insulin from getting the glucose into his cells. That causes the diabetes. There are many things that can cause diabetes - obesity, excessive food carbs in the diet beyond what the cat can handle, etc. This is just one more cause of type 2 diabetics in a cat.
     
  42. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    i keep thinking of more things . . . sorry about the multiple posts! I wanted to share Tommy's ss with you. Lauren and I joined FDMB about the same time and our boys were diagnosed with acro about the same time as well. She was more aggressive with dosing than I was - long story but i had people whispering in my ear that acro cats couldn't go into green numbers and Lauren managed to not listen to it. She just dosed Tommy with the amount of insulin he needed and he did really well. Just scan through from 2011 on and watch his numbers and doses change. I thought Lauren did a great job managing his blood sugar - she shot green regularly once she'd learned how he'd respond. Tommy made it to 20 years old, if I'm remembering correctly.
     
  43. Megan & Oren

    Megan & Oren Member

    Joined:
    Jan 30, 2015
    Thanks so much @julie & punkin (ga) and @Wendy&Neko , I am just stewing in my juices here about how to proceed. Don't apologize for posting multiple times, it's all invaluable to me! :bighug:. Oren has gotten to green a few times over these last 8 months, but never stayed for long. After reading more of Julie's posts re: Punkins journey, I'm glad to see some of my initial thought process confirmed; I'd been thinking "pay me now or pay me later" a lot in my thought process... depending on how high his dose gets... It's still overwhelming, as I'll have to likely go through this whole thing alone.. not sure DB could/would have the chance to come w/ me to NC . then there is the challenge of post treatment closer monitoring if he starts rushing down the dose ladder while I'm still working. Oh well, one step at a time I guess. Julie, thank you SO much for posting such detailed info. of your experience w/ Punkin. It is really very helpful. :bighug:.
     
  44. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    It's not usually that fast a drop, but more "gradual" after SRT. And it may or may not take effect right away, some people have to increase for a couple months after. Check out Neko's 2012 SS in the fall and Polly's SS after her SRT last year. I pretty much followed the protocol down, but did a couple of modifications for safety that others here have followed. I did reductions at 70 instead of 50 when she was coming down dose fast and I didn't always wait for the larger depot to drain and did some pretty close to back to back reductions. When Suzanne's Cobb's IAA broke (he did not have SRT), he came rushing down dose and she was working full time. As much as you monitor, it is doable, should you choose to go the SRT route.

    And you don't need to rush to make a decision. Take the time to make the decision that is right for you and Oren. :bighug:
     
  45. suki & crystal (GA)

    suki & crystal (GA) Well-Known Member

    Joined:
    May 4, 2014
    Just chiming in and sending you some calming vines Megan while you wait for Oren's results (which I hope prove negative). Check out Crystal's ss and see how well she's doing lately.
     
  46. Megan & Oren

    Megan & Oren Member

    Joined:
    Jan 30, 2015
    well, got the news I expected. IAA = 64, IGF-1 - 417. both termed 'elevated' by the endocrinologist. I don't have the results in hand, this was told to me over the phone by the vet whom I'm working w/ in DRISTHATCLEARs absence. I was at work, so didn't have quick access to notes etc, nor did i have time to ask lots of follow up questions. She knows little to nothing (self admittedly) about these conditions. She suggested I might want to see a specialist now, neurologist or endocrinologist for an MRI... I briefly tried to fill her in on experiences of some folks from here, and when she heard about Suki's Crystal getting 60 u BID plus R, she gasped and said, that's nearly a bottle a day! I didn't get much supportive sounding advice from her; a statement about well at least we know what we're dealing with, and now you can do research. She didn't sound like she's much interested in doing more research herself, I think she did mention one other vet at the practice had seen one cat w/ acro..
    I think at least, she'll be more supportive of me making dosing decisions.

    I was pretty sure this was going to be the outcome, but it is still a bit of a gut punch. On top of everything, I foolishly left a pantry top shelf door open last night and civvie Patty leapt up and raided the last bag of kibble I'd had before Oren's diagnosis. :banghead::arghh:.She pulled it onto the floor and they both had at it. This morning Oren was stuffed and ultra lethargic. He'd zoomed to 537 at AMPS and just now at PMPS is only down to 507. :(

    I upped him to 8.5 units and now will have to wait for this to clear his system... not sure how much he ate, but i guess it could affect his numbers for a few cycles? Needless to say, that bag of kibble is now out in the garbage. It was quite an athletic achievement on Patty's part, as she leapt from the floor to a top shelf inside a floor to ceiling cabinet. But I'm so mad at myself for leaving the door open last night; couldn't really get mad at her...
     
  47. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    :bighug::bighug::bighug::bighug:
    Oren is still the same sweet cat he was before the diagnosis. Make sure to cuddle him tonight for me.

    Save your money, no need to see a specialist. My vet suggests the same to me but I decided I could find a better use for the $250 just to walk in the door.

    Eta: the results won't say much more than the numbers. The size of the IGF-1 number doesn't mean much but the IAA one does.
     
  48. Megan & Oren

    Megan & Oren Member

    Joined:
    Jan 30, 2015
    So @Wendy&Neko , I thought the IAA was expressed as a percentage? She didn't say that, just when I asked for a number she said 20, and she didn't know what the normal range was. Also, at first she said it was normal, it wasn't till later in the conversation that she said, oh wait, it says elevated for IAA also, and the number is 20. So, does that mean he DOES have IAA? and that I could expect that to break eventually by steadily increasing dose?
    ETA: i thought under 7% was normal, so if 20 means, 20%, then yes, he probably has IAA, right?
     
    Last edited: Aug 19, 2015
  49. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    Normal is below 20, your post said 64. IAA can be self limiting over time, about a year. You have to be aggressive in dosing and try to stay ahead of the antibodies. It seems if you keep him seeing green more, you can get the upper hand. Often insulin R is also added into the mix as a short term way to bring down numbers. And with R in the mix, there is no R depot so if Oren were to need less insulin suddenly, you have less depot to worry about. Check out Suki's use of R for Crystal. BTW, I didn't use R until very recently, well after Neko's resistance broke. Oh, and needing less insulin doesn't mean huge drops, just being more conservative.

    At some point, you may wish to consider switching to Levemit. Cobb's resistance seemed to break after the switch.
     
    Last edited: Aug 19, 2015
  50. Megan & Oren

    Megan & Oren Member

    Joined:
    Jan 30, 2015
    gah, you're right, i meant to say 64... not sure where the 20 came from. I'm still a bit dazed I think. not a great day today, and had to drive home in a blinding downpour with lots of idiots on the road who don't slow down for conditions.
    Boy, I don't know how Suki does it; 120 u of levemir a day, plus double digits of R too?? that's so much insulin!!
     
  51. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    Each Acro/IAA cat is different. Neko topped out at 8.75 units Lantus. Polly got a little over 10, Cobb got to 31. Suzanne refused to go any higher than one syringe and used R to make up the difference. The fact that you have seen some green is encouraging.

    Make sure you have an adult beverage with dinner tonight, or spoil yourself some other way.
     
  52. Sienne and Gabby (GA)

    Sienne and Gabby (GA) Senior Member Moderator

    Joined:
    Dec 28, 2009
    (((Megan)))

    It's no doubt a gut punch and a lot to take in. However, it's probably no different than when you learned that Oren was diabetic. At least now you don't have to learn all about insulin! The bottom line, though, is that Oren could care less about his diagnosis. He loves you just the same today as he did before you had a diagnosis.

    Wendy is right -- ECID applies to dosing with macro and IAA. There was one kitty, Sooty, who was getting even more insulin than Crystal -- a lot more. It's no different than if a kitty needed to be on steroids -- you adjust the insulin to get your cat in the number range you want. The only difference is that the dose can change quickly as the tumor revs up or down or if the IAA breaks.

     
  53. suki & crystal (GA)

    suki & crystal (GA) Well-Known Member

    Joined:
    May 4, 2014
    (((Megan))) so sorry you got the acro and IAA diagnosis for Oren, I know you were hoping for better news. Take your time to make your decision as regards treatment, if any, for your boy. Hopefully you won't need anywhere near the amount of insulin that Crystal receives., but don't get too worried on the high doses, it's whatever works for your cat. Paws crossed for you both.
     
    Megan & Oren likes this.
  54. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Megan, we're with you. You're not alone, you have people here with all kinds of experience with both of these. So . . . I'd save the money for the specialist. High dose kitties get doses all over the place - Oren has been 8ish for quite a while. There's nothing to say what he'll do next. We knew he had something going on, now we know what it is. Knowledge is power. You're still going to dose by his numbers, just be a little more aggressive and green-oriented.

    I'm glad you went to 8.5u, even though the kibble is probably responsible for that black pmps! Still, it looks like he needed more insulin.

    R is very cheap, so don't worry about it being a huge expense in addition to the L insulin. When I bought it, it was $35 for a vial - that was 4 years ago, but I'm sure it's still nothing compared to Lantus/Lev. You can get it at any people pharmacy. You don't need a prescription either. You want Humulin R or Novolin R, whichever is cheapest. It also lasts forever, so you won't have to worry about it going bad before you've used it up. If you want to start using it, buy a vial and just say so and one of us with experience will help you start out at the right time. It's a good tool to have in your toolbox and can knock high numbers to their knees.

    Ok, can't be too wild with it, but it can really make a difference, so I'd encourage you to consider it.

    I agree with Wendy, when you are at the end of your current Lantus supply, consider switching to Lev. It seems to improve the cycles of many acro/iaa kitties. But I'd finish your current supply.

    Big hugs from me. I know how the diagnosis feels, but Oren is the same kitty he was a year ago. All he knows is that you take care of him and make him feel better. You & he can do this. :bighug::bighug::bighug::bighug:
     
  55. Megan & Oren

    Megan & Oren Member

    Joined:
    Jan 30, 2015
    @julie & punkin (ga) , thanks so much for the hugs and the info. about R. That's good to know, that its cheaper and lasts long time. I was wondering about that. I don't even quite know what my next moves should be. I do know that NC State Univ. does the SRT treatment, and it's about 3 hrs from me, so if I opted for treatment, at least its reasonably close. But, not sure what my steps should be if i DON'T see a specialist; I'd need a referral by current vet correct? Should I have him checked for other things? His heart etc? He's not exhibiting any of the growth deformities yet; maybe some minor breathing noise, especially when he eats, he kind of snorfs and snuffles a lot... and of course his appetite is pretty big. no teary eyes, though i think i notice his pupils are often dilated? Lately, his poos have seemed a bit larger at times which I think is another symptom? I guess I'm leading up to wondering if its better to jump on the treatment sooner than later if one is even considering it? before major symptoms manifest?

    Thank you to all for the support. Indeed my little boy has no clue, all he knows is he got to raid the candy jar last night, and mom still snuggles him and loves him (except for those pesky pokes w/ sharp things!) and he's now petitioning me for 2nd dinner (he heard the feeder go off but it's empty since I'm home...) so off I go and yes, i think an adult beverage is probably going to be shared while he eats...
     
  56. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Dr. Katherine Lunn is at NC State Univ - she was at Colorado State Univ when I started exploring SRT for punkin and she talked to me several times on the phone. I just called and asked for her. Then she went to NCSU to start the program there. I'd go to her in a heartbeat. Different vets did punkin's treatment, Dr. Jessica Timian was the main doctor, also an anesthesiologist and other doctors. When I handed punkin over to them I had this lightbulb moment when i realized that this was what it felt to have people KNOW how to take care of my punkin. Everything til that point had been a series of vets who knew little about diabetes and nothing about acro - and here was a team of experts. It was the best feeling ever.

    If you think you want to explore the process, give her a call. You don't need a referral. You'll want to have his heart checked out to make sure he can withstand the process. If you think you want to do it, go for it. I wasn't going to do it because of the cost, but then we decided we had to give him every chance. Punkin was such an extraordinary kitty that we thought he deserved the chance. So we drove 2600 miles rt to get him treated.

    Even though punkin didn't go off of insulin, i was never sorry we did it. But if you choose not to, Megan, that's ok too. It's completely up to you.

    You've looked at the record I did of punkin's SRT in my signature line, haven't you?
     
    Anne & Zener GA likes this.
  57. Megan & Oren

    Megan & Oren Member

    Joined:
    Jan 30, 2015
    i did look at your stuff Julie, it was very very informative. I had no idea I'd be able to just call and speak with her ! When i was poking around the website though, I'm pretty sure I didn't see her name among the staff.. She is apparently teaching at NC state, but not one of the surgeons in the hospital. Also, SRT would fall under Radiation Oncology, right? and on their webpage it says 'referral only' for those services... http://www.ncstatevets.org/small/
     
  58. Andrea&Tennessee (GA)

    Andrea&Tennessee (GA) Well-Known Member

    Joined:
    Dec 15, 2014
    Oh Megan, I'm so sorry that the results cam back as positive. But as other have said- Oren does not know that anything has changed. Take a few days to adjust to the news.
    As you know, there are a bunch of us here dealing with the same diagnosis. I dont think I would be sane sometimes if not for the support that I get here.
    Hugs to both you and Oren.:bighug::bighug:
     
  59. Amy&TrixieCat

    Amy&TrixieCat Well-Known Member

    Joined:
    Feb 14, 2011
    Aw, I'm sorry...but as everyone has said, Oren is still Oren. And, you've got a ton of support and info right here :bighug::bighug::bighug:
     
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