02/15/2022 MICIO newly diagnosed with Acromegaly ...WHERE DO I START?

MISSY + Simone&MICIO (GA)

MISSY + Simone&MICIO (GA)

Member Since 2021
Just got the results back for my Micio: IGF-1= 214 and IAA= 2
Micio had dental surgery on 11 February and biopsy was performed after the dentist found abnormal tissue on maxilla/nasal cavity, results still pending.

I was hoping Micio was just a high dose cat but the results for Acromegaly came yesterday and I'm totally bummed (and honestly don't expect anything good from biopsies neither).
He's on SEMGLEE 6.25u right not and I recently noticed that he started reacting/minding the shots a bit at times, guess insulin started to sting: just started a new pen and only have one more left, should I switch to a different insulin?
Is Acromegaly a death sentence?
What is Cabergoline?
My mind is spinning right now surrounded by many new questions while terrified that cancer may also be added soon to the list :(
 
I'm sorry. I totally understand. Your heart must be very heavy with worry right now. Your sweet kitty reminds me of mine -- they look a little like a Turkish Van (have you ever seen the photos of Turkish Vans?)

I remember how I felt when I got Darcy's diagnosis of Acromegaly. This board actually has quite a few Acromegaly kitties right now that are doing well. Some people have had the stereotactic radiation therapy done and quite a few are on Cabergoline. Cabergoline is a drug that can really help with insulin management. I can write more later. I know Wendy will come along with a lot of helpful information for you. Check out this forum (the Acromegaly forum) -- Larry just shared with us a few days ago a new study on Cabergoline. There is a lot of information on Cabergoline in these threads as well.

I have to run now to the vet. This morning one of my otherwise healthy kitties is having trouble walking and I have no idea why -- my son said he heard a crash last night. It's always something.
 
Suzanne & Darcy said:
I'm sorry. I totally understand. Your heart must be very heavy with worry right now. Your sweet kitty reminds me of mine -- they look a little like a Turkish Van (have you ever seen the photos of Turkish Vans?)

I remember how I felt when I got Darcy's diagnosis of Acromegaly. This board actually has quite a few Acromegaly kitties right now that are doing well. Some people have had the stereotactic radiation therapy done and quite a few are on Cabergoline. Cabergoline is a drug that can really help with insulin management. I can write more later. I know Wendy will come along with a lot of helpful information for you. Check out this forum (the Acromegaly forum) -- Larry just shared with us a few days ago a new study on Cabergoline. There is a lot of information on Cabergoline in these threads as well.

I have to run now to the vet. This morning one of my otherwise healthy kitties is having trouble walking and I have no idea why -- my son said he heard a crash last night. It's always something.
Click to expand...
Will have to check out the "Turkish van"...you got me curious :cat:
Thanks for the info and your time, already started searching through those forums
Good luck with your furry kid, hopefully he didn't fall and injured himself.
 
Sorry about the diagnosis, but no it is not a death sentence!

I personally like this comparison, though it hasn't been updated with some of the more recent studies: https://www.felinediabetes.com/FDMB/threads/acromegaly-treatment-options.246606/

There's nice pros and cons, some rough cost estimates as well.

We did cabergoline because I thought it was worth a shot before doing something like SRT (radiation) or hypophosectomy (surgery to remove it). It did get him in remission, but that is by no means the case for all cats. There is some evidence cabergoline can shrink the tumor, but he is not stable enough under anesthesia for me to bother with a CT scan.

I think a lot of people opt to do SRT, chances of success would really have to be discussed with whomever is doing it. Same with hypophosectomy. They have to be good candidates for anesthesia, etc. Has micio ever had an echo done? I see the murmur noted
 
Wendy will be along with more info, but couple of key things:
The tumor pulses at times, so sometimes you will need more insulin than others (pre-treatment... post treatment is another can of worms), you're following TR which in my opinion really is best for acro cats.

I used 70 as a reduction point instead of 50, both after diagnosis and starting treatment. It just leaves a good cushion for tumor changes.
 
FrostD said:
Wendy will be along with more info, but couple of key things:
The tumor pulses at times, so sometimes you will need more insulin than others (pre-treatment... post treatment is another can of worms), you're following TR which in my opinion really is best for acro cats.

I used 70 as a reduction point instead of 50, both after diagnosis and starting treatment. It just leaves a good cushion for tumor changes.
Click to expand...

Yes, his BG's can suddenly go crazy and still need to learn about dosing tinkering
By 70 or 50, do you mean BGs? Not quite sure what the last phrase meant...
 
Sorry to hear the IGF-1 results. :bighug: But now that you know what's going on it Micio, you can decide what you want to do next. Good news on the negative IAA results - that's one less thing to worry about. And by the way, the soft tissue growth in his nasal passage could just be benign soft tissue growth from the acromegaly. Neko had a bump on her jaw that her dental vet though was 99% sure to be cancer. It wasn't, just a bony growth due to excess growth hormone, ie. acromegaly.

As for dosing, at this point it Micio's diabetic journey, I would stick to TR as written. Changing reduction points or other fiddling with the protocol are only things I suggest when kitty has had treatments or there are other signs of big changes in doses needed. The one change I can suggest is a change in perspective. Your goal is no longer to keep him so tightly regulated that you force reductions. But rather keep him in numbers that are below renal threshold as much as possible. Micio seems to be a fairly flat numbers type of cat, so that should be easier for you. I found if Neko had nadirs in the 70's, she was mostly under renal threshold. You have to find the dose(s) where that works for Micio. Just follow his numbers and let TR tell you what to do with the dose. We can help you there.

As for life span, that really depends on many things and which of the side effects of the acro tumour you see. Each acrocat is very different that way. I've seen the range from cats over 60 units with no treatment and eventually going OTJ to cats with heart conditions that don't last long. And don't forget that our acro friends are generally older cats, so you see all the other conditions other older cats get too. It's not always the acromegaly that takes them from us.

Take a look at the options Melissa has mentioned, there are more posts around here about them. Cabergoline and SRT are the two more common options in North America, a couple have take their kitty for hypophysectomy. There is a trade off of dollars vs. risk vs. possible outcomes. And above all, ask questions, hope we can help.

One last thing, give Micio a kiss on the top of his head from me. He's still the same sweet boy he was yesterday, he doesn't know he has acromegaly.
 
Oh one last thing - you asked about insulin. Lantus started to sting Mr Kitty right around 9U, he would flinch and pull and he'd never done that before. I did ultimately switch to Levemir because of it, and I'm glad i did. I love Levemir, and I've yet to see someone here say they didn't. Around here, and through Mark's Marine, price is comparable. It does usually nadir later, often at/near preshot, so it takes some getting used to it. I did end up preferring that, it meant all the fun was out of the way by bedtime and I could sleep! ECID of course. If you do switch we can help you, starting dose is usually 70% of the Lantus dose in case they have a strong reaction - but Wendy is best to advise.

I'm also going to tag @Jodey&Eddie, she had/has two acro cats, Eddie and Blue. She has done both hypophysectomy and SRT.

As for cabergoline, it seems the most common is that dose/BG effects start to show up around the 6 week mark. A fair amount of cats seem to get diarrhea for a few days at first. In my case, BG/dose effects started on Day 3 (see spreadsheet starting in July).

Like Wendy says you kind of have to weigh situation vs risk vs cost. Cabergoline doesn't necessarily treat the tumor itself (hasn't been studied enough but it seems to do best with the smaller tumors), just suppresses the hormone production. SRT hopefully neuters the whole tumor, but sometimes they cannot get the whole thing and it takes time to see effects as the cells die off/fail to reproduce. Hypophysectomy hopefully removes the whole thing, but again there is a chance they don't/can't (as in Eddie's case).
 
FrostD said:
Oh one last thing - you asked about insulin. Lantus started to sting Mr Kitty right around 9U, he would flinch and pull and he'd never done that before. I did ultimately switch to Levemir because of it, and I'm glad i did. I love Levemir, and I've yet to see someone here say they didn't. Around here, and through Mark's Marine, price is comparable. It does usually nadir later, often at/near preshot, so it takes some getting used to it. I did end up preferring that, it meant all the fun was out of the way by bedtime and I could sleep! ECID of course. If you do switch we can help you, starting dose is usually 70% of the Lantus dose in case they have a strong reaction - but Wendy is best to advise.

I'm also going to tag @Jodey&Eddie, she had/has two acro cats, Eddie and Blue. She has done both hypophysectomy and SRT.

As for cabergoline, it seems the most common is that dose/BG effects start to show up around the 6 week mark. A fair amount of cats seem to get diarrhea for a few days at first. In my case, BG/dose effects started on Day 3 (see spreadsheet starting in July).

Like Wendy says you kind of have to weigh situation vs risk vs cost. Cabergoline doesn't necessarily treat the tumor itself (hasn't been studied enough but it seems to do best with the smaller tumors), just suppresses the hormone production. SRT hopefully neuters the whole tumor, but sometimes they cannot get the whole thing and it takes time to see effects as the cells die off/fail to reproduce. Hypophysectomy hopefully removes the whole thing, but again there is a chance they don't/can't (as in Eddie's case).
Click to expand...

Thanks for tagging me, Melissa. @MissyKat welcome to the AcroKitty Club. I live with two acrokitties, Eddie and Blue, as Melissa said. I totally get it that the first response is a anxiety and worry. But, really, once you get over the initial shock and find there are many alternatives, you and Micio will be fine.

I first encountered acromegaly in 2017 with Blue, my silver tabby. He was diagnosed with DM and then he kept presenting as insulin-resistant and so an MRI confirmed the diagnosis of acromegaly. In Feb. 2018, I drove to Washington State University Veterinary Teaching Hospital and Blue had hypophysectomy. A follow-up MRI six months later showed he had a regrowth and so it was back to WSU for fractionated radiotherapy: 18 sessions and so he was at the clinic for nearly 3 weeks. That was stressful. Later he showed a small regrowth so in I went in November 2020 for SRT in Calgary, Alberta. He needed only one session and by August of 2021 he was OTJ and continues to do really well.

In November of 2021, his brother was diagnosed with DM and then later with acromegaly. What! I thought, how can this be (and I have an hypothesis and it has to do with mercury, seafood and the pituitary) but there it was. So in Dec. of 2021, we drove down to WSU and he had hypophysectomy also. Unfortunately, his experience was not as positive as Blue's. He had dehiscence of the incision in the palate (twice) requiring debridement (twice) and then a feeding tube so he wouldn't open the incision again by eating. All in all, he was in the hospital for 28 days and still they could get only 60% of the tumour. I then took him in Feb 2021 to VCA in Calgary and he had 3 sessions of SRT. It is now Feb. 2022 and we are still working around insulin resistance and a possible regrowth. And, if that's the case, I will have to make a few decisions.

All I can tell you is that in this group you will never lack for support. Micio's IGF-1 numbers suggest either acro is caught early or the tumour is doing the pulsing that Wendy mentioned.

Whatever you decide, there are options, many of them. Consider cost vs risk, to be sure. It's challenging living with two acrokitties but if I had to do it all over again, I would not hesitate.

All good thoughts to you and Micio!
 
Wendy&Neko said:
Sorry to hear the IGF-1 results. :bighug: But now that you know what's going on it Micio, you can decide what you want to do next. Good news on the negative IAA results - that's one less thing to worry about. And by the way, the soft tissue growth in his nasal passage could just be benign soft tissue growth from the acromegaly. Neko had a bump on her jaw that her dental vet though was 99% sure to be cancer. It wasn't, just a bony growth due to excess growth hormone, ie. acromegaly.

As for dosing, at this point it Micio's diabetic journey, I would stick to TR as written. Changing reduction points or other fiddling with the protocol are only things I suggest when kitty has had treatments or there are other signs of big changes in doses needed. The one change I can suggest is a change in perspective. Your goal is no longer to keep him so tightly regulated that you force reductions. But rather keep him in numbers that are below renal threshold as much as possible. Micio seems to be a fairly flat numbers type of cat, so that should be easier for you. I found if Neko had nadirs in the 70's, she was mostly under renal threshold. You have to find the dose(s) where that works for Micio. Just follow his numbers and let TR tell you what to do with the dose. We can help you there.

As for life span, that really depends on many things and which of the side effects of the acro tumour you see. Each acrocat is very different that way. I've seen the range from cats over 60 units with no treatment and eventually going OTJ to cats with heart conditions that don't last long. And don't forget that our acro friends are generally older cats, so you see all the other conditions other older cats get too. It's not always the acromegaly that takes them from us.

Take a look at the options Melissa has mentioned, there are more posts around here about them. Cabergoline and SRT are the two more common options in North America, a couple have take their kitty for hypophysectomy. There is a trade off of dollars vs. risk vs. possible outcomes. And above all, ask questions, hope we can help.

One last thing, give Micio a kiss on the top of his head from me. He's still the same sweet boy he was yesterday, he doesn't know he has acromegaly.
Click to expand...

Fingers crossed for the biopsies .... Micio has been having these weird skin growths for over a year now and keep getting new ones : he started with a small cyst on his ceek filled with liquid and overtime it became the size of a walnut (we need to keep empty that by poking it and release the liquid but will ended up filling back quicly). Then he has this 1/8" boney protrusion right on his knee and it keeps breaking and bleeding when he sits down ( so I have to keep a loose bandage in there). He also started having a whole bunch of sebaceous cysts on his tail and what I call "skin tags" or growths all over his back....not to mention that his hair, once they're shaved, don't grow back anymore! My boy starting to look like a Frankenstein cat but I love him more than my own life and I can't stop kissing him all over , bumps included ...
I have been telling my vet about all of these but she kept telling me they were just age related and nothing else we can do beside surgery; the dentist was planning on removing the cyst on the cheek and bump on the knee at least if he had enough time while under anesthesia but Micio's blood pressure felt below normal and Dr. didn't feel it was safe to take the extra time.

Have a couple questions though:
- Do I post in here or the other forum for dosing or insulin questions?
- How long do I hold the dose for before increasing/ reducing?
- I just started a new insulin pen and have one left, should I switch to Levemir? Cheapest place to get it or any coupons available?
- I don't know if Radiation would be an option but what would you recommend or which would be easier on Micio?
- Where do I find more info on Cabergoline and SRT?
Thank you.

-
 
Suzanne & Darcy said:
I'm sorry. I totally understand. Your heart must be very heavy with worry right now. Your sweet kitty reminds me of mine -- they look a little like a Turkish Van (have you ever seen the photos of Turkish Vans?)

I remember how I felt when I got Darcy's diagnosis of Acromegaly. This board actually has quite a few Acromegaly kitties right now that are doing well. Some people have had the stereotactic radiation therapy done and quite a few are on Cabergoline. Cabergoline is a drug that can really help with insulin management. I can write more later. I know Wendy will come along with a lot of helpful information for you. Check out this forum (the Acromegaly forum) -- Larry just shared with us a few days ago a new study on Cabergoline. There is a lot of information on Cabergoline in these threads as well.

I have to run now to the vet. This morning one of my otherwise healthy kitties is having trouble walking and I have no idea why -- my son said he heard a crash last night. It's always something.
Click to expand...
OMG, feel so stupid...had no idea what a Turkish Van is...Still have a lot of English to learn :banghead:
 
Jodey&Eddie said:
Thanks for tagging me, Melissa. @MissyKat welcome to the AcroKitty Club. I live with two acrokitties, Eddie and Blue, as Melissa said. I totally get it that the first response is a anxiety and worry. But, really, once you get over the initial shock and find there are many alternatives, you and Micio will be fine.

I first encountered acromegaly in 2017 with Blue, my silver tabby. He was diagnosed with DM and then he kept presenting as insulin-resistant and so an MRI confirmed the diagnosis of acromegaly. In Feb. 2018, I drove to Washington State University Veterinary Teaching Hospital and Blue had hypophysectomy. A follow-up MRI six months later showed he had a regrowth and so it was back to WSU for fractionated radiotherapy: 18 sessions and so he was at the clinic for nearly 3 weeks. That was stressful. Later he showed a small regrowth so in I went in November 2020 for SRT in Calgary, Alberta. He needed only one session and by August of 2021 he was OTJ and continues to do really well.

In November of 2021, his brother was diagnosed with DM and then later with acromegaly. What! I thought, how can this be (and I have an hypothesis and it has to do with mercury, seafood and the pituitary) but there it was. So in Dec. of 2021, we drove down to WSU and he had hypophysectomy also. Unfortunately, his experience was not as positive as Blue's. He had dehiscence of the incision in the palate (twice) requiring debridement (twice) and then a feeding tube so he wouldn't open the incision again by eating. All in all, he was in the hospital for 28 days and still they could get only 60% of the tumour. I then took him in Feb 2021 to VCA in Calgary and he had 3 sessions of SRT. It is now Feb. 2022 and we are still working around insulin resistance and a possible regrowth. And, if that's the case, I will have to make a few decisions.

All I can tell you is that in this group you will never lack for support. Micio's IGF-1 numbers suggest either acro is caught early or the tumour is doing the pulsing that Wendy mentioned.

Whatever you decide, there are options, many of them. Consider cost vs risk, to be sure. It's challenging living with two acrokitties but if I had to do it all over again, I would not hesitate.

All good thoughts to you and Micio!
Click to expand...

Thanks for sharing. Besides being financially destructive I'm also very concerned about Micio's level of stress that all of these is causing and, at about 17-18 yrs old of age, I just want him to be comfortable and enjoying the rest of his life with less stress possible (and personally I am drained as well as I walking through some rough paths lately).
I am very lucky and feel privileged to be part of this group, in less than 5 months I've already learned more than I could possibly think of...
 
Post in the Lantus/Levemir forum about dosing. This forum is quieter and good for acro specific questions. The LLB has some caregivers of acros too. For the moment, follow TR as written for increasing/decreasing and holding doses. It was working before you got the IGF-1 number.

If Micio is reacting to the Lantus dose, I would consider a switch to Levemir. I think people from the US either get if from Marks Marine or the Supply Closet forum here. I am in Canada, cost is much cheaper here.

Radiation therapy and hypophsectomy requires anaesthesia. Your vet could give better advice on that for Micio. An echocardiogram at some point might be good. A number of acros have heart issues, especially enlarged heart due to growth hormone. Cabergoline is just a medication, most get compounded liquid. Th first two are a lot more expensive and most likely require some travel. But can give better odds of improvement, though riskier. When I get back on a computer, I will post a couple links for you.

Interesting on the skin tags, have heard the same on human acros.
 
Wendy&Neko said:
Post in the Lantus/Levemir forum about dosing. This forum is quieter and good for acro specific questions. The LLB has some caregivers of acros too. For the moment, follow TR as written for increasing/decreasing and holding doses. It was working before you got the IGF-1 number.

If Micio is reacting to the Lantus dose, I would consider a switch to Levemir. I think people from the US either get if from Marks Marine or the Supply Closet forum here. I am in Canada, cost is much cheaper here.

Radiation therapy and hypophsectomy requires anaesthesia. Your vet could give better advice on that for Micio. An echocardiogram at some point might be good. A number of acros have heart issues, especially enlarged heart due to growth hormone. Cabergoline is just a medication, most get compounded liquid. Th first two are a lot more expensive and most likely require some travel. But can give better odds of improvement, though riskier. When I get back on a computer, I will post a couple links for you.

Interesting on the skin tags, have heard the same on human acros.
Click to expand...

Micio has heart murmur rated at 2 and been stable for almost 2 years; anesthesia not good for him (that's why we took him to a board certified dentist for his procedure, the only one in Indiana and luckily only 1 hour away) so, I don't forsee radiation or hypophsectomy as a good option...maybe Cabergoline, unless it has many side effects?

Another thing I found weird is that Micio's hair just stop growing back after he gets shaved for tests. He got his chest shaved all across last October for a heart ultrasound and hair never grow back up.... after this dental surgery, he got shaved in more spots and now he looks even more special :cool:
Do you happen to know if that's also related to Acromegaly?!
 
I think cabergoline is worth a try, given the anesthesia challenges and his age. I personally would be leaning non-invasive options first, but it is such a personal decision. If you do cabergoline and then later choose SRT or surgery you would have to taper off the cabergoline before the procedure.
 
The only side effect reported on cabergoline is tummy upset that lasts a few days. Not all get it. Some people have gone down to every other day dosing for a while until it's over.

The hair not growing is unusual. I never saw that with Neko until she went on chlorambucil for her small cell lymphoma. It's a common side effect of chemo. And that was 4 years after her acro diagnosis.
 
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