New diagnosis

[Kayleegoose]

Unfortunately, it seems like Fluffy has been diagnosed with acromegaly. The vet called and left a voicemail before the holidays letting me know his IGH numbers were high and consistent with acro. I haven’t been able to talk to them because of the holidays so I don’t have exact numbers yet. Negative for IAA.

I’ve been checking out the options and I’m having a little trouble seeing what might work best based on others’ experience. The stickies seem old here and it also seems like a lot of people stop updating here after SRT or Cabergoline, so hard to tell if that’s for the better or for the worse. Results in the studies I’ve read seem mixed.

It seems like the logical start is to try Cabergoline and see if that works? My concern with it is that it doesn’t (from what I can tell) shrink the tumor at all? So if the tumor continues to grow, does it continue to cause problems for him? Or is it enough to use the medication to block the hormone and therefore stem the effects of the tumor?

I’m also considering whether or not to try to consult with a specialist. I’m worried about starting him on the medication when it doesn’t seem like my vet knows about it. The only thing they mentioned in the voicemail is that they’re comfortable taking his insulin dose up to “10 or even 12 units twice a day” but nothing about actual treatment options. If I’m going to rely on the vet for dosing and guidance, it makes me a little nervous.

 

[Wendy&Neko]

Sorry to hear the diagnosis. But now you have an answer for his size of dose, and possibly the cause for the continued constipation too. Most important, there are treatments. Those treatments, from most expensive and harder to find to less costly and more available are surgery called hypophysectomy or removal of the pituitary gland, stereotactic radiation therapy (SRT) or Cyperknife radiation, and a daily medication called cabergoline. You can search for those terms on this forum and see what others have done.

Sorry the Stickies are older - it's an overwhelming task to update them. Neko had SRT, cause at the time, it was the only treatment available.

Regarding insulin dose, when you do increases over total dose of 5-10 unit, you can increase by 0.5 units unless already seeing some numbers under 100, which would be a 0.25 unit increase.

 

[Kayleegoose]

Sorry to hear the diagnosis. But now you have an answer for his size of dose, and possibly the cause for the continued constipation too. Most important, there are treatments. Those treatments, from most expensive and harder to find to less costly and more available are surgery called hypophysectomy or removal of the pituitary gland, stereotactic radiation therapy (SRT) or Cyperknife radiation, and a daily medication called cabergoline. You can search for those terms on this forum and see what others have done.

Sorry the Stickies are older - it's an overwhelming task to update them. Neko had SRT, cause at the time, it was the only treatment available.

Regarding insulin dose, when you do increases over total dose of 5-10 unit, you can increase by 0.5 units unless already seeing some numbers under 100, which would be a 0.25 unit increase.

Thank you, I do feel a little bit of relief knowing what’s going on at least, plus having treatment options. I was trying to search and see who’s had the most long-term success but that’s what I was struggling to find. I saw you mention somewhere that you’ve seen quite a few cats go off insulin after starting Cabergoline, but I was wondering how long it worked for. This study seems promising and had good long term results but I was hoping to find some examples on here to see how effective it was for them, plus how they adjusted the insulin dose after starting the medication.

 

[Wendy&Neko]

The cabergoline paper you have linked is one of their older papers, this is a more recent paper with larger number of cats studied. One of our members contacted one of the authors a couple years ago and the numbers studied was over 50%.

Long term success (how do you define that?) varies a lot. From the cats I've seen here, it has varied a lot. Surgery is supposed to be curative but the average life span doesn't seem a lot longer than the other methods. Plus there are some percent of cases where the tumour grew back. The surgery is also higher risk. I think if you were near London England and went to the Royal Vet Clinic, odds of success would be higher. Anybody contemplating surgery would get guidelines on dosing from the clinic.

SRT has seen some cats go into remission. Neko didn't go into remission but lived 4.5 years after mostly on small doses and good QOL, her tumour did came back. Again, not common. I have some guidelines I can suggest on dosing should you chose radiation therapy. They are based on what the internal medicine vet at Colorado State University suggested to me. Cats getting SRT do tend to have their insulin dose reduced, though it cat take a while before than happens. Neko got her first reduction on the trip home from CSU.

Cabergoline has also seen large variations in how cats have done. I think 5 years perhaps the longest one has lived? I don't know what the average is though. Cabergoline's effectiveness depends on size of tumour. Most people don't get a CT scan to find this out, but rather just try it. Again, we've developed guidelines for dosing. A cat's reaction to cabergoline varies a lot. I've seen two go into remission two weeks after starting it, others take 3 months before it starts working. Almost all cats get some reduction in insulin dose. Cabergoline has been the more popular choice lately, because it is a lot less expensive, and doesn't involve travel with kitty.

Finally, we've also seen a few odd cases where people could not treat and just used as much insulin as needed. Freckles lived to 6 years, her story was posted here. I know of a couple others that lived 5-6 years, including one that got to 55 units of insulin, and went into remission! Of the few handful that lived long, it seems keeping them fairly well regulated helped. Unfortunately living that long is rare, and most untreated cats fall to one of the acro side effects.

I've also seen, as with all the treatment types, cats pass from other conditions like cancers. These are mostly older cats so other conditions not uncommon. This makes it hard to come up with a figure telling you how long cats live after treatment.

If you want to know more about any particular treatment type, just ask. We may have more links to papers or stories here.

Most important, Fluffy doesn't know he has acromegaly and it the same cat he was before you knew. Give him some scritches from me.

Finally, you now know you can be a bit more aggressive with insulin dosing. You may be chasing after a good dose. The tumour can wax and wane, though it's not a sudden change. Where 8 units may have looked good two weeks ago, it may no longer be. I wouldn't wait long before increasing back to try it again.

 

[Kayleegoose]

The cabergoline paper you have linked is one of their older papers, this is a more recent paper with larger number of cats studied. One of our members contacted one of the authors a couple years ago and the numbers studied was over 50%.

Long term success (how do you define that?) varies a lot. From the cats I've seen here, it has varied a lot. Surgery is supposed to be curative but the average life span doesn't seem a lot longer than the other methods. Plus there are some percent of cases where the tumour grew back. The surgery is also higher risk. I think if you were near London England and went to the Royal Vet Clinic, odds of success would be higher. Anybody contemplating surgery would get guidelines on dosing from the clinic.

SRT has seen some cats go into remission. Neko didn't go into remission but lived 4.5 years after mostly on small doses and good QOL, her tumour did came back. Again, not common. I have some guidelines I can suggest on dosing should you chose radiation therapy. They are based on what the internal medicine vet at Colorado State University suggested to me. Cats getting SRT do tend to have their insulin dose reduced, though it cat take a while before than happens. Neko got her first reduction on the trip home from CSU.

Cabergoline has also seen large variations in how cats have done. I think 5 years perhaps the longest one has lived? I don't know what the average is though. Cabergoline's effectiveness depends on size of tumour. Most people don't get a CT scan to find this out, but rather just try it. Again, we've developed guidelines for dosing. A cat's reaction to cabergoline varies a lot. I've seen two go into remission two weeks after starting it, others take 3 months before it starts working. Almost all cats get some reduction in insulin dose. Cabergoline has been the more popular choice lately, because it is a lot less expensive, and doesn't involve travel with kitty.

Finally, we've also seen a few odd cases where people could not treat and just used as much insulin as needed. Freckles lived to 6 years, her story was posted here. I know of a couple others that lived 5-6 years, including one that got to 55 units of insulin, and went into remission! Of the few handful that lived long, it seems keeping them fairly well regulated helped. Unfortunately living that long is rare, and most untreated cats fall to one of the acro side effects.

I've also seen, as with all the treatment types, cats pass from other conditions like cancers. These are mostly older cats so other conditions not uncommon. This makes it hard to come up with a figure telling you how long cats live after treatment.

If you want to know more about any particular treatment type, just ask. We may have more links to papers or stories here.

Most important, Fluffy doesn't know he has acromegaly and it the same cat he was before you knew. Give him some scritches from me.

Finally, you now know you can be a bit more aggressive with insulin dosing. You may be chasing after a good dose. The tumour can wax and wane, though it's not a sudden change. Where 8 units may have looked good two weeks ago, it may no longer be. I wouldn't wait long before increasing back to try it again.

Thank you so much for all of this. Upped it back to 8.

This does answer my question about long term results. I saw one study that suggested that Cabergoline and surgery options both averaged a couple years after diagnosis, so I was hoping to hear there have been more long term results than 2 years since he is only 11. I am hopefully finally going to get a call back from my vet today and will ask about Cabergoline to start with and we will just go from there.

Thanks again for your help

 

[Wendy&Neko]

I was told by the good folks at Colorado State University (who had the most expertise on SRT at the time), that although the average was two years, this also included cats who died of other conditions like cancers. Most of the cats with acromegaly are seniors when diagnosed, when other conditions are also more likely. Neko was 11 when she was diagnosed too.

I think one of the important factors is starting treatment sooner, rather than later. Acromegaly can cause some side effects it's best to avoid.

 

[Kayleegoose]

I was told by the good folks at Colorado State University (who had the most expertise on SRT at the time), that although the average was two years, this also included cats who died of other conditions like cancers. Most of the cats with acromegaly are seniors when diagnosed, when other conditions are also more likely. Neko was 11 when she was diagnosed too.

I think one of the important factors is starting treatment sooner, rather than later. Acromegaly can cause some side effects it's best to avoid.

Does the Cabergoline help treat those side effects? Or just SRT/surgical options?

 

[Wendy&Neko]

People who have used cabergoline report that some side effects went away. I haven't seen any long term studies on cabergoline, mainly cause it's not that many years it's been used.