Moe dx with Acromegaly 6/1/20

Erin and Moe (GA)

Erin and Moe (GA)

Very Active Member
Hay everyone. I got Moe’s test results back today. He’s officially an Acro-cat. His IGF-1 was 295 in the sample sent for testing. Moe is my vet’s first acro kitty; she saw one in vet school 12 years ago. So she’s excited to learn more about it. As an aside, Moe was also her first cat with ammonium urate stones in his bladder, requiring surgery. He’s a special cat.

Anyway, she wasn’t very keen on drug therapy, said that there was little evidence that any drugs helped. Other options are surgery, which has a lot of risks during and immediately after, or radiation, which has the best outcome. Life expectancy after radiation is 18-24 months. She didn’t know expectancy w/o any treatment or what eventually causes death in cats with acromegaly.

She’s calling a specialty clinic in Houston to find out their radiation protocol and costs. I should hear back later this week.

So...what else do I need to ask her? What about drug therapy? Any studies that I can point her to?
 
Erin and Moe said:
Hay everyone. I got Moe’s test results back today. He’s officially an Acro-cat. His IGF-1 was 295 in the sample sent for testing. Moe is my vet’s first acro kitty; she saw one in vet school 12 years ago. So she’s excited to learn more about it. As an aside, Moe was also her first cat with ammonium urate stones in his bladder, requiring surgery. He’s a special cat.

Anyway, she wasn’t very keen on drug therapy, said that there was little evidence that any drugs helped. Other options are surgery, which has a lot of risks during and immediately after, or radiation, which has the best outcome. Life expectancy after radiation is 18-24 months. She didn’t know expectancy w/o any treatment or what eventually causes death in cats with acromegaly.

She’s calling a specialty clinic in Houston to find out their radiation protocol and costs. I should hear back later this week.

So...what else do I need to ask her? What about drug therapy? Any studies that I can point her to?
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I looked into radiation therapy for cc when she was diagnosed. The cheapest I could find was about 8,500. That didn't include other tests and x-rays. So would have been closer to 9k. I passed on it. As much as I love her, I just couldn't. THE OTHER CLINIC started at 10k.

She was diagnosed acromegaly May 10th, 2019. So just over a year ago. She will be 17 this summer. In CC'S case I'm not sure radiation would have bought us much more time. We are simply doing insulin, and so far doing well. At her most she needed about 12.5. It's been around 8.5 for a while but just this past week since having a mass removed off her leg, her dose is dropping FAST! No idea why. Tonight I only have 5 u after several hypos this week.
 
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1) SRT
Sorry to hear the diagnosis. I'm in Austin. At the time, A&M did not have SRT (radiation), but they have it now. So I drove Leo to Ft.Collins, Colorado. Longevity estimate is 12-18 months. But many live longer. Leo achieved 33 additional months (almost 3 years). Radiation will be $5k+.

2 and 3)
The other options are cabergoline drug, and hypophysectomy (surgical removal). You can read about cabergoline in this subforum. Hypophysectomy is expensive.

4) insulin
The 4th option is no treatment, except insulin and Love. The insulin is inexpensive and the caring part is free. I know that most of our kittehs on the forum get a lot of the last part with all their medicines. We called Leoberry "Leo the loverboy".
 
JeffJ said:
1) SRT
Sorry to hear the diagnosis. I'm in Austin. At the time, A&M did not have SRT (radiation), but they have it now. So I drove Leo to Ft.Collins, Colorado. Longevity estimate is 12-18 months. But many live longer. Leo achieved 33 additional months (almost 3 years). Radiation will be $5k+
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I’m on the northwest side of Houston metro (Cypress). Vet is contacting Gulf Coast Veterinary Clinic and A&M. It’s probably the same drive time to get to Gulf Coast as it is to College Station, but A&M is only taking local referrals right now.

I may try cabergoline. I’m just not sure yet.
 
we have Cleo on cabergoline for past 3 months- I think it curbed her appetite some, which was pretty strong, after about 2 weeks, but didn't make a dramatic drop in the BG#'s. Currently, Cleo's been dx'd as diabetic since 8/1/19 and acro 2/1/20. She's been tough to deal w/ sometimes w/ the strong appetite and her "feed me right f--ing now" behavior, and the litter box issues. Luckily, we have a carpet machine that I have to use once a week or so to clean up her butt wipes and pee. Not sure how long we can do this as she's slowing down and all she wants to do is eat. We're up to 12U 2x day on Prozinc and her #'s are coming down, but not enough. She's not the same cat and becoming a real burden, but we'll keep it going until the vet says her QOL is bad. Sorry to be debbie downer here, but it's an unfair, frustrating disease. My vet is an A&M grad and I think this is her first acro.
 
I just feel kind of defeated right now. It doesn’t seem like any of the treatment options really help. And it’s frustrating that our vets don’t know much. I honestly feel like I know more than my vet right now (she’s also an A&M grad).

Right now Moe just seems tired. He eats, he uses the litter box and he sleeps, stretched out like a tired old dog, not curled up like a healthy cat. Some days he has to stop eating to go lay down for a while, then he comes back to finish his meal. He walks halfway across a room and has to lay down for a minute. It just makes me sad.
 
Sorry to hear you've joined our not so exclusive club. One in four diabetic cats has acromegaly. Did the vet ask for the IAA test too?

First, and most important, Moe doesn't know he has acromegaly. He's the same sweet cat he was yesterday before you got the results. However, now you have an explanation for his dose and response to insulin. You also have some choices. Here is the post I started on cabergoline, including a reference to a South American study. Note that all the studies done have been very small numbers. We've had more people here try cabergoline that the official research studies combined. Read far enough and you'll see prices too. @Olive & Paula and @Pamela & Amethyst are two of our active members currently using. Most people report some reduction of acro symptoms from the growth hormone. That helps quality of life as is what I would consider the most important part of treating acromegaly. Chris's Cleo is no where near her good insulin dose yet, so the fact that she's seeing any benefit from cabergoline is good. Getting your cat safely to a good dose where they spend as much times as possible under renal threshold should be your goal - with or without treatment. And Erin, you are doing commendable job with that and Moe. :bighug: I'm hoping Paula and Pamela will respond, but I know Paula has said cabergoline made a major difference with Olive and her quality of life. And I can't leave this topic without saying we have had three cat go OTJ on it. Most get at least some insulin reduction, but as I said, it's the symptom reduction that I think make it worth it.

Radiation, when Neko first had it, was $4000m but it quickly shot up in cost. BTW, your vet has it wrong, the average life span after radiation when we were there was 2 years (Neko lived over 4), but a lot of those cats were older and passed from other things. Of the three cats that had radiation at SRT not too long before Neko did, two passed from various cancers. Jeff's Leo probably got taken by lymphoma too.
Erin and Moe said:
I honestly feel like I know more than my vet right now (she’s also an A&M grad).
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Yuppers, that's a common feeling. I even had my vet's clinic owner admit I knew more than him about acromegaly. The sad thing, it was a low bar. Think about how much more we know than a lot of vets on diabetes alone. It wasn't that long ago vets were taught "here is feline acromegaly, you'll never see it". When I met Neko's internist and he had experience with acros, it was wonderful!
 
Erin and Moe said:
I just feel kind of defeated right now. It doesn’t seem like any of the treatment options really help. And it’s frustrating that our vets don’t know much. I honestly feel like I know more than my vet right now (she’s also an A&M grad).

Right now Moe just seems tired. He eats, he uses the litter box and he sleeps, stretched out like a tired old dog, not curled up like a healthy cat. Some days he has to stop eating to go lay down for a while, then he comes back to finish his meal. He walks halfway across a room and has to lay down for a minute. It just makes me sad.
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yes that's how we feel too. Cleo's not much of a pet anymore, more like a patient and we're running a cat nursing home. It's depressing. Cleo sounds a lot like Moe- no energy, just lays around and begs for food.
 
Forgot to mention, there is one other drug, pasireotide that has a good review in studies - but it'll set you back even more than SRT. There has literally be no one I know of that has tried it outside of a research trial where the drug was paid for. Royal Vet College didn't have a good review on cabergoline - again, a tiny study size, but has some more promising results in combination with octreotide, which by itself has proven not to work on acros in a study by Colorado State University.
 
Erin and Moe said:
I just feel kind of defeated right now. It doesn’t seem like any of the treatment options really help. And it’s frustrating that our vets don’t know much. I honestly feel like I know more than my vet right now (she’s also an A&M grad).

Right now Moe just seems tired. He eats, he uses the litter box and he sleeps, stretched out like a tired old dog, not curled up like a healthy cat. Some days he has to stop eating to go lay down for a while, then he comes back to finish his meal. He walks halfway across a room and has to lay down for a minute. It just makes me sad.
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Please don't give up on him. I only have a second to write right now, but Rocket is soooooo much better (and a much happier kitty) after SRT. Still hard to regulate, but a lot healthier. I'm so sorry for the diagnosis. I know it's hard.
 
Been using cabergoline 2+ yrs. Will be starting 3rd year in October. Ollie is vets 1st acro and knew nothing about cabergoline, same as I. Had to change vets to get it, once she saw Ollie she agreed it was her only hope of being comfortable as I would not put her through the removal surgery and I couldn't justify SRT once mri, travel and hotel were added in.

I don't know her real age or what she was like before I got her. She got up to 9 units insulin, had stridor, walked funny (not neuropathy), has club feet, hcm, headaches, pot belly, bloated, no stamina, just laid around like a blob and very uncomfortable.

Started cabergoline, dose started coming down, walk became normal. Even trotted in for her food. Occasional chasing a shoelace, flipping toys, jumping on furniture. Stridor gone. Pot belly gone. Headaches gone.

Her insulin dose gotten as low as 4.25 units and fluctuates up and down due to other reasons. She continues to just lay around again, but she is more alert if that makes sense. She Will roll and show her belly, purrs up a storm if you just look at her. Lately has taken to sleeping on husbands lap.

When we started cabergoline I added up all the costs of insulin, strips, syringes and all the supplies etc., added the cost of cabergoline and Ollie could get it 46 months before reaching the cost of SRT at that time. Given Ollie's age estimated 11+ yrs then, her abdominal mass we don't know much about, hcm, murmur, chronic pancreatitis, I decided cabergoline was the safer option and be more comfortable for her remaining years.

When I consider how my non diabetic who is now 17 yrs, she only sleeps and eats, no different than Ollie.
 
Thanks everyone for your replies. I just need a minute to absorb the news and then get to researching. I suspect that I will be leading my vet through this, and not the other way around. When we talked last night, she actually said “knowing you, you’ve already researched all of this...” She knows me well. :)
 
Erin and Moe said:
Thanks everyone for your replies. I just need a minute to absorb the news and then get to researching. I suspect that I will be leading my vet through this, and not the other way around. When we talked last night, she actually said “knowing you, you’ve already researched all of this...” She knows me well. :)
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Good Luck:) It is very important to have a VET that will work with you We LOVE ours. Like Wendy said the Cabergoline with my little girl has most certainly helped her quality of life and our VET Dr. Pickering agrees we just recently increased Amethyst dose from 1ML to 1.4ML hoping to see her insulin needs come down Please ask away with any questions:bighug::bighug::bighug:
 
Erin and Moe said:
Yes, we did the IAA test as well and that came back negative
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That's good news, it can be very frustrating dealing with IAA. Dosing a bit like nailing jelly to the wall.

Sounds like your vet is open to learn, and that'll really help you through this. Mine didn't know much either but learned with me, and diagnosed another acro in her practice not long after Neko was. It helped her realize that sometimes there are reasons cats are very hard to regulate.
 
Wendy&Neko said:
Sounds like your vet is open to learn, and that'll really help you through this. Mine didn't know much either but learned with me, and diagnosed another acro in her practice not long after Neko was. It helped her realize that sometimes there are reasons cats are very hard to regulate.
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My vet was convinced that it’s super rare and humored me with the test. She was sure he had something else going on (cancer) and wanted an ultrasound. Hopefully she will keep it in mind for future hard to regulate cats.

I do love my vet though. She knows I’m going to do my homework and not just accept what she says as gospel. I suspect I annoy her at times though. :)
 
Erin and Moe said:
My vet was convinced that it’s super rare and humored me with the test. She was sure he had something else going on (cancer) and wanted an ultrasound. Hopefully she will keep it in mind for future hard to regulate cats.

I do love my vet though. She knows I’m going to do my homework and not just accept what she says as gospel. I suspect I annoy her at times though. :)
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Ollie's vet was the 4th one I consulted with for the caber. I told her up front I can be overbearing and pushy, I want what I want unless you can give me really good documentation otherwise. She said "I can be too, I will let you know when your overstepping" . I replied, your willing to take us on and order caber? And well here we are.
 
Let me know if your vet likes to read technical literature. Tons of references in this post - though I need to take some time and add a few more. Post 7 in there has a link to the paper based on the RVC study showing how common acromegaly really is. The paper came out in 2015, so not surprising not all vets have seen it. If you have particular questions, just ask. Collective knowledge or my backlog of hoarded papers might be able to help.
 
Wendy&Neko said:
Let me know if your vet likes to read technical literature. Tons of references in this post - though I need to take some time and add a few more. Post 7 in there has a link to the paper based on the RVC study showing how common acromegaly really is. The paper came out in 2015, so not surprising not all vets have seen it. If you have particular questions, just ask. Collective knowledge or my backlog of hoarded papers might be able to help.
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Thanks so much Wendy! I will take a look. I’ve sent her a few studies in the past. Since she is new to acro, I think she’d be happy to see scientific studies and increase her knowledge.
 
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