Acromegaly - what can help?

Christina2113

Christina2113

New Member
I'm still fairly new here... My kitty, Bella, was just confirmed last week with Acromegaly. I've read about radiation therapy, medicine that my vet suggested... unfortunately, I can't afford any of these things.
This might be a silly question, but is there anything else I can do to help her? Or are medicines (besides insulin, she's on that) and surgery the only options?
 
Hello and welcome. There are two "cheaper" options for treatment. A couple people here are taking their cats to AMC in New York for surgery to remove the pituitary- they recently received a donation that is paying for the majority of the costs for some cats. There are still some in front costs, and travel. The second isna drug that some people here have had success with, called cabergoline. Search the posts here for a discussion on it. What medicine did your vet suggest?

Of course the main thing you can do is do home blood testing and get her dose to a point where she is spending a lot of time below renal threshold,
 
Wendy has made a good summary. You could become more active on the forum with people to help you regulate the BG. I see you have driven up the dosage very quickly, with almost no testing showing. that can be more dangerous than healing. Since you are on Lantus, I would recommend reading the lantus guidelines on that forum, and followup posting as desired.

Both Wendy and I (separately) had SRT (radiation) done to our kittehs. Wendy's kitteh Neko unfortunately passed on from other issues. But my Leo is still active and well almost 2 years later.
 
Wendy&Neko said:
Hello and welcome. There are two "cheaper" options for treatment. A couple people here are taking their cats to AMC in New York for surgery to remove the pituitary- they recently received a donation that is paying for the majority of the costs for some cats. There are still some in front costs, and travel. The second isna drug that some people here have had success with, called cabergoline. Search the posts here for a discussion on it. What medicine did your vet suggest?

Of course the main thing you can do is do home blood testing and get her dose to a point where she is spending a lot of time below renal threshold,
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Hi Wendy!
My vet suggested octreotide and pasireotide, however she said that these have low success rates and they are very expensive. I think I came across carbergoline on here - - I will look again! I think there is a study involved with this one.
Thank you so much for the help. New York is not an option for me, but I can look into the carbergoline. :)
 
JeffJ said:
Wendy has made a good summary. You could become more active on the forum with people to help you regulate the BG. I see you have driven up the dosage very quickly, with almost no testing showing. that can be more dangerous than healing. Since you are on Lantus, I would recommend reading the lantus guidelines on that forum, and followup posting as desired.

Both Wendy and I (separately) had SRT (radiation) done to our kittehs. Wendy's kitteh Neko unfortunately passed on from other issues. But my Leo is still active and well almost 2 years later.
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Hello, JeffJ!
The 5 units 2X/day with Lantus has finally gotten her down to normal levels. I keep in touch with my vet and we've discussed not only her tests, but also her behavior. The increases were done through my vet - but I do understand your concern. Overall, her numbers are better but she has a disease that will keep her body battling against itself. I'm happy for your kitties that they had fur parents to take great care of them with their sickness! So many people here have such love for their animals like I do - I hope I can find something for my Bella. :)
 
Pasirotide is $2,000+ per month. That puts it out of range for nearly all mortals.

5 units/dose
We have dealt with a lot of hypos on the forum. I just want to ensure your kitteh is safe. You probably want to test everyday, even if you don't type it in. Some kittehs drop lower at night, putting them at higher risk for hypos when the doses are higher. As an example, look at Leo's chart. He almost always drops at night. If you have a chance, you may want to test before going to bed each night. That way you have a track record of PMPS effectiveness.

I also hope you can find something for Bella. There has been mixed success for cabergoline here. But it is worth trying.:bighug:
 
JeffJ said:
Pasirotide is $2,000+ per month. That puts it out of range for nearly all mortals.

5 units/dose
We have dealt with a lot of hypos on the forum. I just want to ensure your kitteh is safe. You probably want to test everyday, even if you don't type it in. Some kittehs drop lower at night, putting them at higher risk for hypos when the doses are higher. As an example, look at Leo's chart. He almost always drops at night. If you have a chance, you may want to test before going to bed each night. That way you have a track record of PMPS effectiveness.

I also hope you can find something for Bella. There has been mixed success for cabergoline here. But it is worth trying.:bighug:
Click to expand...


Thank you for the advice - I'm trying to figure this all out. It's been very stressful. My vet seems pretty knowledgeable, but she hasn't mentioned doing tests right before bed to see if she drops.
There are so many terms on here, but I think I'm catching on a little bit. Aaaaannd yes, the cost of these meds are impossible to afford!

Does your Leo have issues with dehydration? If so, what do you do to get him to drink more?
Are there other at-home tests? I've read something about testing urine?
 
Blood glucose testing at home is the best way to keep you cat safe. Urine tests show you what happen in the blood a couple hours previous, too late if there was a hypo. If you give a treat when you test, pretty soon you will find your acro comes running at the sound of the test kit opening. And yes on tests at night. I would say most cats go lower at night. We decide on how to dose the cats based on how low it takes the cat, so we need that data. Read the Sticky Notes on the Lantus forum, there may be info there that can help. We also have a couple of well regulated, but not treated acrocats over there, following the dosing methodologies posted there,

We have had three cats here go off of insulin on cabergoline, several others with considerably lower doses. Those are better odds that seen in the RVC study and paper that was published, and where most vet's get their info. RVC recommends pasireotide over cabergoline, but even they had to rely on drug donated by the vendor in order to do the study. I don't know if a single cat in North America who has tried pasireotide. I heard the same from a well known acro researcher in North Carolina who hadn't been able to convince any clients to pony up yet.
 
Leo does not have excessive drinking/urination because he is regulated now. He pees more than average cats because I mix substantial water into his FancyFeast Classics meals. It helps him eat.

If your cat has high average blood glucose then you can test for ketones with Ketostix - test strips from Walgreens for $12.

Wendy is right that cats have side effects caused from Acro. The excess growth hormone causes various changes in the body, and I doubt we could call any of them beneficial. One issue from Acro in Leo is "stridor". He has fleshy growths in his throat. They cause loud snoring, but they also interfere with his eating.
 
Hi Christina and welcome! I am sorry for your acro diagnosis. You are in the right hands. Most vets do not have very much experience in this area. I was following the advice of my vet too at first, until I realized how much data this group has to back up their advice. I was SO overwhelmed in the beginning, so I totally understand what you're going through. A good piece of advice someone told me in the beginning was ask your vet how much experience they have with feline diabetes. Real numbers. For example my vet said "very few" and none that went into remission. There have been over 400 cats in the Lantus forum alone that have gone "OTJ" (off the juice) and got safely regulated because of the procedures we have in place (Tight Regulation and Start Low Go Slow). You don't want to miss the right dose. Feline Diabetes is a very good way to test ones patience, lol. You have to be patient for increasing doses. I wish you and Bella the very best!
 
I would say trust the people here. They are good people and have helped us a lot. They have a huge bank of experience which most vets, including ours, do not have. Home testing is the key, and persistence. Cats are persistent. you just have to be more persistent than them if you are to get your own way! Titan at first was a bit resistant and we were very unskilled, but now he jumps up on the bed for his blood tests because he loves the treats (and he is very hungry!) And we are much better at performing the tests. Our vet recommended that we didn't do home testing at first, but this was a mistake and wasted two weeks when we could have been making progress.
 
Amanda & Shmee said:
Hi Christina and welcome! I am sorry for your acro diagnosis. You are in the right hands. Most vets do not have very much experience in this area. I was following the advice of my vet too at first, until I realized how much data this group has to back up their advice. I was SO overwhelmed in the beginning, so I totally understand what you're going through. A good piece of advice someone told me in the beginning was ask your vet how much experience they have with feline diabetes. Real numbers. For example my vet said "very few" and none that went into remission. There have been over 400 cats in the Lantus forum alone that have gone "OTJ" (off the juice) and got safely regulated because of the procedures we have in place (Tight Regulation and Start Low Go Slow). You don't want to miss the right dose. Feline Diabetes is a very good way to test ones patience, lol. You have to be patient for increasing doses. I wish you and Bella the very best!
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Hi, Amanda :)
I wish there was a way to reply to everyone to ask questions, but a big issue is her peeing outside of the litter box. Even if I get her insulin regulated, will any medicine that people have tried stop that behavior? It seems to be cause by the acromegaly, and if we can't get rid of the tumor, then this will continue? Other issues she has is that she is dehydrated - I can't seem to get enough water in her. She doesn't play anymore, she's constantly meowing for food... I guess I'm not understanding if trying cabergoline is only for insulin or if this helps diminish the tumor as well. Where can I find that information?
 
Cabergoline impacts the tumour. It's the excess growth hormone from the tumour that causes the diabetes. Successfully treating the tumour reduces insulin dose, and also helps reduce other harmful effects of the growth hormone. Getting her into better blood glucose numbers, ideally under renal threshold, will reduce the drinking, peeing, and resulting dehydration. A good insulin, home blood testing daily, and following a proven dosing method are what get her into good blood sugar numbers.
 
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Wendy&Neko said:
Cabergoline impacts the tumour. It's the excess growth hormone from the tumour that causes the diabetes. Successfully treating the tumour reduces insulin dose, and also helps reduce other harmful effects of the growth hormone. Getting her into better blood glucose numbers, ideally under renal threshold, will reduce the drinking, peeing, and resulting dehydration. A good insulin, home blood testing daily, and following a proven dosing method are what get herninto good blood sugar numbers.
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Thank you so much for the information, Wendy! I wasn't sure what this medicine targeted. I spoke to my vet about cabergoline and now I'm trying to decipher the info she gave me to see what the cost would be. This is my only option so I hope it works out.
 
Christina2113 said:
I wish there was a way to reply to everyone to ask questions, but a big issue is her peeing outside of the litter box.
Click to expand...

Peeing outside of the box has been a constant struggle with my Sophie, too. Just when I think I am close to getting her regulated, the tumour sends out more of its hormones and disrupts the process. So we have come to a workable solution where she is happy to use pee pads, like they use for training puppies, in a litter box, and is actually quite faithful with that. And for a few areas that she, on rare occasions, uses instead, we have set out the pads, and she will use them.

Hoping that you will have luck to get your kitty to be below renal threshold because it really does make a huge difference with the peeing issue.
 
Wendy is correct - the cabergoline is probably the best route for you.

Also daily BG testing is helpful. While your kitteh had good numbers in July, there is no way to know they are changing. I really hope you can start testing daily. The acro will cause BG increases over time in many kittehs. As a result, if you are not testing there is no way for you to know if the current dose is effective.
 
JeffJ said:
Wendy is correct - the cabergoline is probably the best route for you.

Also daily BG testing is helpful. While your kitteh had good numbers in July, there is no way to know they are changing. I really hope you can start testing daily. The acro will cause BG increases over time in many kittehs. As a result, if you are not testing there is no way for you to know if the current dose is effective.
Click to expand...
JeffJ said:
Pasirotide is $2,000+ per month. That puts it out of range for nearly all mortals.

5 units/dose
We have dealt with a lot of hypos on the forum. I just want to ensure your kitteh is safe. You probably want to test everyday, even if you don't type it in. Some kittehs drop lower at night, putting them at higher risk for hypos when the doses are higher. As an example, look at Leo's chart. He almost always drops at night. If you have a chance, you may want to test before going to bed each night. That way you have a track record of PMPS effectiveness.

I also hope you can find something for Bella. There has been mixed success for cabergoline here. But it is worth trying.:bighug:
Click to expand...

I came across this recent trial study where cats were given a monthly subcutaneous injection of pasireotide LAR (long acting release) that led to an improvement in some. Doesn't mention what it would cost though... Why is it so expensive?
Here's the trial - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5354018/
 
Signifor LAR (pasireotide is the generic name) is a relatively new drug, used by a fairly small number of people. It is one of many treatment options for people with Cushings or acromegaly. The combination of new drug and small market means high costs for the manufacturer and hence for us. Three years ago I had my vet search for it. Even though it had just been approved in Canada, she couldn’t find a source for it to price it. At that time, it wasn’t even approved in the UK where the trial took place with acromegalic cats.
 
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