2/27 Binx - newly diagnosed acro

Briana + Binx

Briana + Binx

Member Since 2024
*sigh*

The day has come... Binx has officially been diagnosed with acro. @Wendy&Neko as you had also rightfully suspected, based on the high dose we're at now (7 units). On an aside, he also tested positive for hyperthyroidism.

I'm trying not to think about how long he's been dealing with this (these)... as he's been over 4 units for over half a year and we've been repeat testing his thyroid numbers too for the same amount of time. I'm glad to have caught it all now, at least.

His results were HIGH... > 1200 ng/mL. The internist at the lab apparently said the medications have variable results and are expensive/hard to obtain... but from what I've seen Cabergoline is the more affordable option compared to SRT. They recommended radiation therapy. @Wendy&Neko I know we're on opposite sides of the country, but wondering what your experience has been with medication vs SRT? I think I saw you post recently that another kitty of yours just got their first SRT treatment, and I know Neko had acro (IAA too). Do you mind sharing the cost? Either of SRT or medication. And if you ever used medication, how accessible was it?

Either way, they're referring me to an internal medicine specialist, as Binx's list of conditions is more complicated now... diabetes, CKD Stage 2, acro, and hyperthyroidism. I will post more when I know more and also after I speak to the internist.

Thank you to this community, as always :bighug:
 
:bighug::bighug::bighug::bighug:
At least now you have explanations for his numbers and dose. >1200 is common, it just means positive. One thing someone told me that I will pass onto you. Binx doesn't know he's acro, he's the same cat he was before. Give him a kiss from me.

When Neko was first diagnosed, the three options were to just treat with insulin, SRT, or conventional radiation which also has down sides given the location. The pituitary is right by the optic chiasm and is technically part of the brain. You have to be very careful with other surrounding tissue, and make sure tissue from the radiation device to the target isn't impacted. Regular radiation therapy is beams from the same direction. SRT is radiation therapy, but the device is on a gantry so can swivel around and they send beams from 7 directions. They plan the beams so that the beams rays only overlap at the tumour.

With a pituitary tumour, which is generally quite tiny, I've heard large ones described as pea size, they are mostly ovoid so easier to plan the radiation paths. Current kitty has a salivary gland tumour, quite uneven and below the jaw line. The radiation oncologist said she'd be up to all hours trying to plan it.

Cost is an interesting question. I went to Colorado State University with Neko, three days drive. Current kitty I had to take a ferry ride but it was a private facility (VCA unfortunately). When I priced out Neko's treatment, there was a private facility in Calgary that cost over twice as much. Quick googling says there is one at the Animal Cancer Centre at Guelph University. I think the first time Neko got SRT it was something like $4K, at that was at a university teaching school. For private, expect to pay 3-4 times that. Even a university setting might be double, I don't know for sure as I haven't seen recent quotes.

As above, medication options were not available in Neko's time. Might have been 2016 when cabergoline started being used. Marvin (in Toronto) was the first kitty here to use it. I don't know the price but you could start a thread here asking if anyone has current pricing. $100 ish per month? It has to be compounded. Some people give it every other, which lowers the cost, but can make it take longer to take effect. There is another drug called pasireotide, hope the vet isn't thinking about it. It is outrageously expensive and hard to get. I had my vet price it out, for curiosity, for Neko. The drug had been just recently approved in Canada, hard to get, and I think the yearly cost was something like $15K. The folks at Royal Vet Clinic published a paper about a trial that had good success, but they couldn't afford the drug so the drug company had to supply it to them. A year or so after I contacted a well know acro researcher (at NCSU at the time) if she'd heard of anyone in North America using it, and the answer was no, too expensive. I've not seen anyone here try it.

For advantages and disadvantages of approaches, see table 1 in this paper, case 2:
 
Wendy&Neko said:
:bighug::bighug::bighug::bighug:
At least now you have explanations for his numbers and dose. >1200 is common, it just means positive. One thing someone told me that I will pass onto you. Binx doesn't know he's acro, he's the same cat he was before. Give him a kiss from me.
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Thank you, Wendy :bighug: :bighug: That's a good thing to remember. I'm always amazed at how resilient he's been and how true he still is to my Binx (anti-jinx) and I shouldn't look at him with sadness.
Wendy&Neko said:
When Neko was first diagnosed, the three options were to just treat with insulin, SRT, or conventional radiation which also has down sides given the location. The pituitary is right by the optic chiasm and is technically part of the brain. You have to be very careful with other surrounding tissue, and make sure tissue from the radiation device to the target isn't impacted. Regular radiation therapy is beams from the same direction. SRT is radiation therapy, but the device is on a gantry so can swivel around and they send beams from 7 directions. They plan the beams so that the beams rays only overlap at the tumour.

With a pituitary tumour, which is generally quite tiny, I've heard large ones described as pea size, they are mostly ovoid so easier to plan the radiation paths. Current kitty has a salivary gland tumour, quite uneven and below the jaw line. The radiation oncologist said she'd be up to all hours trying to plan it.

Cost is an interesting question. I went to Colorado State University with Neko, three days drive. Current kitty I had to take a ferry ride but it was a private facility (VCA unfortunately). When I priced out Neko's treatment, there was a private facility in Calgary that cost over twice as much. Quick googling says there is one at the Animal Cancer Centre at Guelph University. I think the first time Neko got SRT it was something like $4K, at that was at a university teaching school. For private, expect to pay 3-4 times that. Even a university setting might be double, I don't know for sure as I haven't seen recent quotes.

As above, medication options were not available in Neko's time. Might have been 2016 when cabergoline started being used. Marvin (in Toronto) was the first kitty here to use it. I don't know the price but you could start a thread here asking if anyone has current pricing. $100 ish per month? It has to be compounded. Some people give it every other, which lowers the cost, but can make it take longer to take effect. There is another drug called pasireotide, hope the vet isn't thinking about it. It is outrageously expensive and hard to get. I had my vet price it out, for curiosity, for Neko. The drug had been just recently approved in Canada, hard to get, and I think the yearly cost was something like $15K. The folks at Royal Vet Clinic published a paper about a trial that had good success, but they couldn't afford the drug so the drug company had to supply it to them. A year or so after I contacted a well know acro researcher (at NCSU at the time) if she'd heard of anyone in North America using it, and the answer was no, too expensive. I've not seen anyone here try it.

For advantages and disadvantages of approaches, see table 1 in this paper, case 2:
Click to expand...
You're a true powerhouse with all your knowledge and experience. Thank you for sharing! How lucky Neko was to have you, paving the way with something that was less thought of then (I know you had to get your vet to humor you for the tests), had less options and less availability, and then took the drive to get her the treatment she needed. And looking at her profile link, that SRT treatment really seemed to have meaningful impact on her diabetes/dose. From 8.75/7 units to 0.75/0.25 after treatment. Plus those outcomes are reinforced by the data in the table you sent (thanks for that). Helpful to have a comparison of everything and see advantages/disadvantages. Going to take your advice and start another thread about medication costs, but will also get pricing from the internist. Good to know about pasireotide too, it hadn't come across my radar so I definitely hope that's not the expensive/variable treatment they were thinking of.

And thank you for doing a search on possible treatment locations in Ontario/GTA. A much more doable drive for me than your drive to Colorado State, wow!

Also, funny that we have the same reaction to VCA clinics... the vet I go to now was specifically intent on starting an animal hospital not bought out/run by VCA.

Hope all goes well with your current kitty's tumour 🍃🍃🍃🍃🍃
 
Three weeks before I went to CSU the first time, there were two other members who went there for SRT with their acros. One drove from Saskatchewan, the other flew from North Carolina. That was back in the day before NCSU got SRT capability and built a great team. I learned a lot from their experiences and even managed to arrange our visit with their help. And Julie & punkin got to CSU about six months before that. Julie was also a great source of information on acromegaly. Later on, she was in the area to visit friends and stopped by and met Neko.

A couple posts on cabergoline. The first is a long with lots of people who used it, and talks about prices and sourcing. Second one contains a paper you might wish to show the vet if they are unsure about cabergoline:

Cabergoline as a possible treatment for acrocats: discussion​

New paper on: Cabergoline treatment in cats with diabetes mellitus and hypersomatotropism​

When there is no other option in BC for radiotherapy, you just roll with it. :arghh:

Another discussion thread what are my options, with some links to SRT stories and discussion on cabergoline.
 
Wendy&Neko said:
Three weeks before I went to CSU the first time, there were two other members who went there for SRT with their acros. One drove from Saskatchewan, the other flew from North Carolina. That was back in the day before NCSU got SRT capability and built a great team. I learned a lot from their experiences and even managed to arrange our visit with their help. And Julie & punkin got to CSU about six months before that. Julie was also a great source of information on acromegaly. Later on, she was in the area to visit friends and stopped by and met Neko.
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A beautiful example of the power of this community. How sweet that Julie came and met Neko too 🥹
Wendy&Neko said:
A couple posts on cabergoline. The first is a long with lots of people who used it, and talks about prices and sourcing. Second one contains a paper you might wish to show the vet if they are unsure about cabergoline:

Cabergoline as a possible treatment for acrocats: discussion​

New paper on: Cabergoline treatment in cats with diabetes mellitus and hypersomatotropism​

When there is no other option in BC for radiotherapy, you just roll with it. :arghh:

Another discussion thread what are my options, with some links to SRT stories and discussion on cabergoline.
Click to expand...
Thank you for all of this! 🤗 Excellent weekend reading resources and it always feels better to come to the table being able to engage in the conversation with the vet, rather than trying to piece things together afterward
 
Good morning, Briana. I am sorry that Binx has acromegaly. I remember how I felt when Darcy was diagnosed. It really knocked me back on my heels, but with Wendy’s help we moved forward. I wanted to take him to NCSU immediately for SRT,but they would not even return my phone calls during the pandemic and we never got anywhere with it. We used Cabergoline with excellent results.

You have a lot to consider with hyperthyroidism and CKD, which will definitely be factors in your decision-making. It’s good that you are getting IM vets involved to help sort through all this. Are you treating the hyperthyroidism now?
 
Suzanne & Darcy said:
Good morning, Briana. I am sorry that Binx has acromegaly. I remember how I felt when Darcy was diagnosed. It really knocked me back on my heels, but with Wendy’s help we moved forward. I wanted to take him to NCSU immediately for SRT,but they would not even return my phone calls during the pandemic and we never got anywhere with it. We used Cabergoline with excellent results.

You have a lot to consider with hyperthyroidism and CKD, which will definitely be factors in your decision-making. It’s good that you are getting IM vets involved to help sort through all this. Are you treating the hyperthyroidism now?
Click to expand...
Thank you for the kind message and for sharing your experience, Suzanne 🤗 🤗 I'm sorry NCSU left you hanging, but glad Cabergoline worked out well for you. Do you mind me asking what Darcy's initial IGF-1 value was? And also how much the medication cost you?

Not yet for hyperthyroid but we'll be starting treatment/medication this week! Then we will retest his values in 3 weeks to see how that's going. So many new factors being introduced, but I also want to know how each of them impacts him so if anything drastic does change, we might be better able to pinpoint it.
 
A couple things about IGF-1 values. First, testing in North America changed as per the What We Know Sticky above:
As of January 25, 2024, MSU has changed the type of assay (now chemiluminescent or CLIA) used to test for IGF-1, and at the same time changed the units used from nmol/L to ng/mL, which is now consistent with testing done in the UK at the Royal Veterinary Clinic.

Current ranges for the US - a result of >916 is considered + for acromegaly; in Great Britain a result of >1000 using the radioimmunoassay is considered + for acromegaly, with >700 as the gray zone. We have seen results in Europe using a chemiluminescent assay with >650 as + for acromegaly.

Before January 25, 2024, in the US – a result > 92 was considered + for acromegaly; in Great Britain a result > 1000 was positive.
Click to expand...
Meaning that if you look at cats tested before Jan 25, 2024, the IGF-1 value above 92 was positive for acro, now it's above above 916.

The second thing is that the IM folks at CSU told me there is no correlation between size of tumour and the IGF-1 number. The two kitties who had SRT at CSU weeks before Neko both had lower IGF-1 numbers than her, and smaller larger tumours as measured by the CT scan. Cabergoline is said to do better on kitties with smaller tumours. But not sure an expensive CT scan is worth it to find out, unless you are doing a CT scan for another reason.

One acrokitty/hyperT kitty I remember is Chino (might be others), and here is his spreadsheet. Chino tested positive for acro and HyperT in February 2017 and started cabergoline in August that year. He started methimazole Feb 11th.
 
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Wendy&Neko said:
A couple things about IGF-1 values. First, testing in North America changed as per the What We Know Sticky above:

Meaning that if you look at cats tested before Jan 25, 2024, the IGF-1 value above 92 was positive for acro, now it's above above 916.

The second thing is that the IM folks at CSU told me there is no correlation between size of tumour and the IGF-1 number. The two kitties who had SRT at CSU weeks before Neko both had lower IGF-1 numbers than her, and smaller tumours as measured by the CT scan. Cabergoline is said to do better on kitties with smaller tumours. But not sure an expensive CT scan is worth it to find out, unless you are doing a CT scan for another reason.

One acrokitty/hyperT kitty I remember is Chino (might be others), and here is his spreadsheet. Chino tested positive for acro and HyperT in February 2017 and started cabergoline in August that year. He started methimazole Feb 11th.
Click to expand...
Thank you, Wendy! I don't know why I had thought that IGF-1 values would be indicative of how far along the tumor is, so makes sense that it's determined by a CT scan to look at size... and I agree with you, that I'm not sure it's worth getting the CT scan right now just to determine size. I'll speak to the internist about this, as I may just see how he does on Cabergoline (if that's what I decide) and hope that it's small enough that it's effective.

Thank you for sending through Chino's profile/SS! Seeing info/data from a kitty with both is interesting. I know ECID but even knowing that there has been others with the cocktail that Binx has is helpful.
 
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