Mister has very high IGF-1, what are my options?

MisterBillie

MisterBillie

Member
Previous thread: https://www.felinediabetes.com/FDMB/threads/misters-dosing-pt-3.259606/

My cat was diagnosed with diabetes in early January 2022. He's been on an ever increasing dose of ProZinc since then with signs of insulin resistance. I sent bloodwork to MSU last week and the results are in:

IGF-1: 327 (12-92 is normal range)
IAA: 64 (0-20 is normal range)

My cat seems to have sore backlegs and tons of dander now. It all makes sense that it was an underlying illness all along. The ProZinc has literally done absolutely nothing to help him. What should I do now? Do I need to pay for a CT scan to confirm there is a tumor?

What are all the possible options to treat the Acro? I remember reading somewhere that there's like one or two surgeons in the country who are skilled enough to do the Acro surgery, who are they? What are the other options?

Edit: Putting references below as I research, will edit as I go:

Good overall article: https://www.dvm360.com/view/feline-acromegaly-treatment-options

Cabergoline:
https://felinediabetes.com/FDMB/thr...-w-cabergoline-treatment.249982/#post-2819640
https://www.felinediabetes.com/FDMB...betes-mellitus-and-hypersomatotropism.259213/ (see few post down for full PDF)
 
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Hi. I'm sorry you have this diagnosis and the double whammy of the IAA in addition to the Acromegaly. Options are Cabergoline, SRT radiation and surgery. Cabergoline really helped my boy to get into better blood glucose numbers. I see your spreadsheet and I am frustrated just LOOKING at it. I know what that is like. What is going on with his back legs? How is his jumping? Have you started giving Zobaline for diabetic neuropathy. You can order it from LifeLink. It is very beneficial for diabetic neuropathy, which is most likely what your sweetheart has at this point, unless there is arthritis involved.
 
Also, the sooner that you can switch to a depot insulin the better. For an Acro cat, I would recommend Levemir, but you still will need to find a better dose for him. I know Wendy will be along as soon as possible to help talk you through the surgery and SRT options. There's actually a lot of information on this Acro forum about those things (Cabergoline too.)
 
Currently reading everything I can on this. What about Cryohypophysectomy, which destroys the tumor? Why is there next to no info on this?

Or SRT? I wonder if the University of Minnesota does SRT.

I will email my vet right now to ask about Levemir prescription.

edit: Such a crying shame regarding Transsphenoidal cryohypophysectomy. The doctor who pioneered that surgery passed away in 2008: http://www.dasiesurgery.ca/DASIE/Holmberg.html

I can't find any info on that besides his study. Does anyone know anywhere in the WORLD that does this surgery/procedure?
 
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Hello and welcome over here. Sorry you had to be here. :bighug::bighug: My girl's IGF-1 was quite a bit higher and I've seen even higher still. Size of IGF-1 number doesn't really relate to anything like size of tumour. It just is. Neko also had IAA, not as high, but we've also seen higher here. I wouldn't recommend a CT scan at this point. The IGF-1 and dose are high enough that it's more that likely that is what you are dealing with. Do you see any physical symptoms?

Take a read of this article, case 2. A list of possible treatments (which includes just as much insulin as needed) starts in a table on page 1094. I don't know where cryohypophysectomy is performed (often location is limiting factor), but it is listed as "expensive". Plus it's only ever been done twice in the literature, meaning long term or meaningful stats are not available. The paper links to two articles describing it, but I don't have access to the papers. Similarly, pasireotide has to date also been very expensive so not much done. Whereabouts are you located?

I too would recommend a switch to Levemir, which can often be longer lasting.
 
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MisterBillie said:
Currently reading everything I can on this. What about Cryohypophysectomy, which destroys the tumor? Why is there next to no info on this?

Or SRT? I wonder if the University of Minnesota does SRT.

I will email my vet right now to ask about Levemir prescription.
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Like Suzanne said Wendy will be along, she's a wealth of information. She'll be able to help more with choosing providers as well if you go the hypophysectomy or SRT route

I reposted the Word doc comparison link in your ProZinc thread

Hypophysectomy is the surgery to remove the tumor. Pros - if they can get it all, it's gone. Cons - cost, sometimes due to location they cannot get it all, the risks associated with anesthesia and the surgery, and they may think they got it all but some was left and it regrows. What I cannot remember is how long it takes dose needs to come down, Wendy will know

SRT is the radiation. It works by neutering the tumor cells, so it can take up to 2 years to see the full effects. Pros and cons are essentially the same as surgery. It tends to die off in fits and spurts so you'd get periods of some quick reductions, then a holding pattern for a bit. Not always, I'd assume. ECID.

Cabergoline works by suppressing the production of the IGF-1. There is some evidence it may shrink smaller tumors. Pros: pretty cheap in the US, non invasive/doesn't require anesthesia, minimal side effects (usually diarrhea). It also tends to slow the other acro effects like organ enlargement, soft tissue growth, etc. Cons: it does not get rid of the tumor itself. More often that not it reduces the dose but they still need some insulin (my cat is a bit of an exception and is currently in diabetic remission from the cabergoline).

You can also choose to do nothing and only treat with insulin. Pro would be cost I suppose, the cons would be the tumor is still sitting there secreting growth hormone and affecting other parts of the body.

You essentially have to weigh what you can afford vs what he can handle (example my cat cannot undergo anesthesia) vs what you want for him health wise.

One thing you will want before any anesthesia is an echocardiogram. Across tend to have issues with their hearts. I would not get a CT scan to confirm yet; if you go the hypophysectomy or SRT route they are going to want their own CT scans anyway (and possibly echos, Wendy knows more).

I will tag @Jodey&Eddie as she has two acro cats, Eddie and Blue. If I recall correctly, Blue had just the hypophysectomy and is currently in remission. Eddie has the hypophosectomy and several complications from it; he then had repeat SRT (Wendy's Neko also had repeat SRT). She had a CT scan done last week to see what tumor is doing and should get results soon. She may not be around for a bit as Eddie is currently hospitalized with a UTI.

I personally chose cabergoline because of cost initially. We decided to start with that and see how it went, since there's no real harm. It worked.out for us....even though SRT was still on the back burner, he had an anesthesia where he stopped breathing, and now he has several other health issues on top of that...so we tossed the idea of SRT. Just too much for his little body

From our past conversations I suspected you would want the surgery or radiation. Just make sure you understand the risks, and select someone who is reputable and has experience (Wendy can help with that too, now that I've volunteered her 5 times in one post), as can other members who have taken their cats for it
 
Wendy&Neko said:
Hello and welcome over here. Sorry you had to be here. :bighug::bighug: My girl's IGF-1 was quite a bit higher and I've seen even higher still. Size of IGF-1 number doesn't really relate to anything like size of tumour. It just is. Neko also had IAA, not as high, but we've also seen higher here. I wouldn't recommend a CT scan at this point. The IGF-1 and dose are high enough that it's more that likely that is what you are dealing with. Do you see any physical symptoms?
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Insulin resistance, weight loss, increased urination, and now very recently a poor coat with tons of dander... these are the symptoms I am seeing with him. The other symptoms are what exactly? He doesn't have a big jaw or anything like that, but sometimes (not always) he walks up the stairs very gingerly/slowly, like his back legs are hurt. But yet he can still run if needed and jump when he gets the zoomies.

Wendy&Neko said:
Take a read of this article, case 2. A list of possible treatments (which includes just as much insulin as needed) starts in a table on page 1094. I don't know where cryohypophysectomy is performed (often location is limiting factor), but it is listed as "expensive". Plus it's only ever been done twice in the literature, meaning long term or meaningful stats are not available. The paper links to two articles describing it, but I don't have access to the papers. Similarly, pasireotide has to date also been very expensive so not much done. Whereabouts are you located?
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You didn't link an article. I am located in Minnesota. Pasireotide doesn't interest me because it doesn't cure the underlying problem. Cryohypophysectomy literally cures Acromegaly. If I can find a place that does cryohypophysectomy, I might just do it, money no object. I will cash out some crypto if I have to.

Wendy&Neko said:
I too would recommend a switch to Levemir, which can often be longer lasting.
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Okay, that's what everyone is saying so far. This seems like something that is actionable that I can do asap. So I will email my vet right now on this.
 
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I know we've discussed Levemir in the past, some vets are hesitant to prescribe it because most of them have never used it, so be aware of that heading into the conversation. I know your vet pushed back on even the acro test, but you got that done anyway ;)
 
Suzanne & Darcy said:
Cabergoline really helped my boy to get into better blood glucose numbers. I see your spreadsheet and I am frustrated just LOOKING at it. I know what that is like.
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Cabergoline is an interesting interim solution, this seems to be better than Pasireotide and way cheaper? How do I convince my stubborn vet who didn't even want to do the Acro test to prescribe Cabergoline though?

Man, I wish Cryohypophysectomy was an option. Should I just start literally emailing every top vet university in the world? Who can I reach out to to see where this procedure is done? It literally cures Acro, I'd pay A LOT to be able to cure the acro and the diabetes.
 
MisterBillie said:
Cabergoline is an interesting interim solution, this seems to be better than Pasireotide and way cheaper? How do I convince my stubborn vet who didn't even want to do the Acro test to prescribe Cabergoline though?

Man, I wish Cryohypophysectomy was an option. Should I just start literally emailing every top vet university in the world? Who can I reach out to to see where this procedure is done? It literally cures Acro, I'd pay A LOT to be able to cure the acro and the diabetes.
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https://www.felinediabetes.com/FDMB...betes-mellitus-and-hypersomatotropism.259213/

That is a recent study out of South America. There aren't a whole lot of studies on it, but a lot of anecdotal stuff/evidence here in the forum...RVC also did a study but it was short term and I think perhaps fewer cats.

You would have to taper down the cabergoline before doing radiation or surgery if I remember correctly....one other person did that, I can't remember who at the moment.

I don't see any harm in trying it for the time being, because it is at least suppressing the growth hormone and it's potential effects while you try to figure out what you will do, where, and when.

Technically, regular hypophysectomy and SRT can be curative as well. And I assume the same risks exist with the cryo - sometimes due to location it is simply unsafe to remove it all, or they miss parts, etc. I'm not trying to be a downer, just sort of level expectations that nothing with acro is ever guaranteed.

I do not think there is a guarantee curing the acro cures the diabetes. I think in many cases acros do have functional pancreases, just the growth hormone gets in the way of both endogenous and exogenous insulins.
 
I don’t want to be a wet blanket on any kind of hypophysectomy, but outcomes are not guaranteed. On this Board we have a member whose cat (Schmee) was never the same again. There have also been successes and then some mixed results (like Jodey’s two cats.). But I know you already are aware that all surgeries carry some risk and outcomes are not guaranteed.
 
I fixed the post above with the link. The two articles referencing cryohypophysectomy were written in 1993 and 2008, which is ages ago in terms of research in acromegaly. If no one is doing it anymore, there is a reason for it. There also isn't enough data to say it's curative.

As for the hypophysectomy surgery, there is a direct correlation between success of the surgery and the experience of the surgeons. The Royal Vet Clinic in London have done over 50 such surgeries and have a much better success rate than the places in the US who have done the surgery. You could probably email the Feline Diabetes Remission Clinic at the RVC and ask them whether cryohypophysectomy is done anywhere and why/not. They are very knowledgeable and responsive to questions. And have had some people fly in with their kitties from other countries for hypophysectomy.

The two places in the US that do the surgery are the AMC in New York and Washington State University. I have yet to see members here go to WSU for hypophysectomy that did not have some type of complication. I've just seen a couple of people go to AMC, for Schmee and Sophie - who was a great success. This post is a starting place: https://felinediabetes.com/FDMB/thr...ussion-of-medication-and-other-issues.207078/
MisterBillie said:
How do I convince my stubborn vet who didn't even want to do the Acro test to prescribe Cabergoline though?
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Send him a copy of the article that is included in the post you linked in your first post.
MisterBillie said:
Or SRT? I wonder if the University of Minnesota does SRT.
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I found this document of radiation facilities on the Veterinary Cancer Society website. It has types of radiation therapy, contact info and websites. U of Minnesota is listed but not sure it's SRT.

Sore legs - I'd get the vet to check for arthritis, it's quite a common acro symptom (bony growth).

What other questions do you have?
 
Thanks for the replies so far, I have a lot to research. I reached out to my vet to prescribe Levemir and Cabergoline and he just replied back. He is willing to prescribe Levemir, but the pricing is steep he said: "A single Levemir 10ml vial is $382 (100u per ML)". Is there a generic that is cheaper, or is this the normal price? I wonder if Costco carries Levemir like ProZinc. Let me know which pharmacy is best. My vet also said he will be reading that PDF article on Cabergoline in the next couple days and will get back to me.

Also, University of Minnesota Medical Oncology and Radition got back to me very quickly and they do offer SRT. And the do free phone consults between the vet.

Wendy&Neko said:
What other questions do you have?
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One simple question I have off the top of my head: How do you administer Cabergoline? Is it tasteless and you can mix it into food?
 
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I think most people get it compounded into a flavoured liquid. I seem to remember discussion of a bacon and marshmallow flavoured one.
MisterBillie said:
What happens if my vet just refuses to prescribe these, what are my options then?
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First ask why not and what it would take to convince him/her. If you otherwise like the vet that is. I had to work to even get my vet to do the IGF-1 tests, she thought it was too early and Neko needed to get to 10 units. She never got that high. I asked the vet to humour me. A couple times. When I proved right with both tests (also IAA) coming back positive, our working relationship turned into more of a partnership. Also ask the vet if they can suggest any alternatives that are reasonable cost. Plus how much experience the vet has with acromegalic cats and what their outcomes were. After all, you've been "talking" to several people who've had/got cats with acromegaly. Finally, you might have to switch vets. We had one member who found a vet on the third try willing to let her try cabergoline. Since then we've seen that paper which gives much better evidence that there is benefit to cabergoline. Most vets should be science based.
 
Wendy&Neko said:
I think most people get it compounded into a flavoured liquid. I seem to remember discussion of a bacon and marshmallow flavoured one.

First ask why not and what it would take to convince him/her. If you otherwise like the vet that is. I had to work to even get my vet to do the IGF-1 tests, she thought it was too early and Neko needed to get to 10 units. She never got that high. I asked the vet to humour me. A couple times. When I proved right with both tests (also IAA) coming back positive, our working relationship turned into more of a partnership. Also ask the vet if they can suggest any alternatives that are reasonable cost. Plus how much experience the vet has with acromegalic cats and what their outcomes were. After all, you've been "talking" to several people who've had/got cats with acromegaly. Finally, you might have to switch vets. We had one member who found a vet on the third try willing to let her try cabergoline. Since then we've seen that paper which gives much better evidence that there is benefit to cabergoline. Most vets should be science based.
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Sorry, I edited my post while you were responding, see my edited post above. My vet actually called me while I was writing the post, so I figured I'd edit it.
 
Always best to start a new post instead of editing one, that way we know there is an update.

Other than Mark's, you can occasionally pick up some pens on the Supply Closet Forum. There is no generic yet for Levemir (newer insulin) and you should be able to pick it up from most pharmacies if you need one quickly and can't wait for Marks. Some places will break a package of 5 and just sell a single pen. Yes, get pens instead of a vial, much more versatile at Mister size doses. People with really big gulpers might go through a vial by the time it expires.

Awesome that you have SRT so close! It took me three days driving each way.
 
FrostD said:
As for Levemir cost - most of us order from Mark's Marine in Vancouver, much more cost effective
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Thanks. Link is here: https://canshipmeds.com/search-3/?drugName=levemir

Wendy&Neko said:
Always best to start a new post instead of editing one, that way we know there is an update.

Other than Mark's, you can occasionally pick up some pens on the Supply Closet Forum. There is no generic yet for Levemir (newer insulin) and you should be able to pick it up from most pharmacies if you need one quickly and can't wait for Marks. Some places will break a package of 5 and just sell a single pen. Yes, get pens instead of a vial, much more versatile at Mister size doses. People with really big gulpers might go through a vial by the time it expires.
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Thanks for the tips. So just to verify, I should get the Flextouch version, not the Penfill? Anyone have a coupon code for canshipmeds?

Wendy&Neko said:
Awesome that you have SRT so close! It took me three days driving each way.
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Interesting. I will have to review your story on how SRT worked out for you. Let me know any good threads I should check out, otherwise this weekend I will start scouring this forum just to get a feed on if SRT is worth it.
 
Wendy&Neko said:
I think most people get it compounded into a flavoured liquid. I seem to remember discussion of a bacon and marshmallow flavoured one.
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Wait what? I can't tell if you're serious, lol?

Where are people sourcing their Cabergoline from? Mark's Pharmacy / canshipmeds has it, but it's in pill format and appears to be really expensive. Or is Cabergoline something that's cheaper in the U.S.?

edit: Yep, as I suspected. Cabergoline more expensive in Canada, wow. See this post here.

So Levemir is way cheaper in Canada, but Cabergoline is far cheaper and more available in the U.S. versus Canada. Go figure.
 
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MisterBillie said:
Wait what? I can't tell if you're serious, lol?

Where are people sourcing their Cabergoline from? Mark's Pharmacy / canshipmeds has it, but it's in pill format and appears to be really expensive. Or is Cabergoline something that's cheaper in the U.S.?

edit: Yep, as I suspected. Cabergoline more expensive in Canada, wow. See this post here.

So Levemir is way cheaper in Canada, but Cabergoline is far cheaper and more available in the U.S. versus Canada. Go figure.
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She is very serious lol for whatever reason the cats love it

My vet just orders the pills from his distributor and compounds it in house, just a chicken flavored water or oil. I think the pills are like $35 and he charges me an extra $10 to compound. At the standard dose of 10mcg/kg every other day, it lasts months. Yes for whatever reason insulin cheap in Canada but not US, cabergoline expensive in Canada but cheap here.

If you get it compounded, make sure it's a sugar free sort of thing. And if you get it from your vet, don't assume they'll remember he's diabetic either....remind them no sugar
 
MisterBillie said:
Is compounding something an average vet will do? Or is your vet an outlier?
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I really don't know, just have to ask!

I know a lot of people here order from places like Wedgewood Pharmacy, I want to say chewy is a bit more expensive
 
There is no coupon for Marks, and it isn't the place to get cabergoline. Lots of discussion here where people get cabergoline: https://felinediabetes.com/FDMB/thr...ble-treatment-for-acrocats-discussion.184012/ Compounding places are cheaper in the US. And yes, the bacon/marshmallow is serious.

More reading from the Lantus/Levemir forum: Insulin Care & Syringe Info: Proper Handling, Drawing, Fine Dosing You will need different syringes too.

Article on SRT: https://onlinelibrary.wiley.com/doi/full/10.1111/jvim.15212 Neko is the double SRT kitty in the article. Author Lynn Griffin was her radiation oncologist.

Some interesting posts: Punkin's SRT journey
Leo's Acromegaly thread and SRT treatment starting post 67

I didn't put all of Neko's trips in one post, should have, but here is the journal:
Last travel day on the way there
8/7 First day SRT
8/8 Second day SRT
8/9 - Neko AMPS 142 PMPS 402 +3 333 - Done SRT!
Quite a few peeps who had SRT posted on those threads. The thing to remember, at that time, there was no other treatment possible. Plus it was cheaper than now. But IMHO, totally worth it for Neko. Glad I went.
 
I'm late to the party here, but just wanted to chime in. Howie's IAA came in at 63 (Sept. 2020) and his IGF-1 came in at 532 (Jan. 2021). He also was on ProZinc and I switched him to Levemir. I get 15 pens at a time from Mark's so pay about $530 with shipping--the max you can order and have shipped to the States. (I'm also from Minnesota! Where are you?) If you order when it's warm in the summer months, make sure to get the extra cold shipping materials with it since our Post Office loves to leave packages out and about! Howie is at 25 units BID, so a pen lasts him approximately 6 days. I am SO glad I switched him over from ProZinc. I also have him on Cabergoline which I get from Wedgewood Pharmacy through my vet. His is chicken flavored. It's just a liquid that you mix in with the food and he doesn't even know it's in there. He did lose some pounds before I could get him pretty regulated and then things just seemed to click and I got him in a spot where he sticks in the greens and blues (goal is between 80-120 under renal threshhold) and he has been between 13-14 pounds ever since. I will say that the dandruff has never gone away. I have noticed (and my vet commented 2 weeks ago as well) that his fur seems to have gotten wavy. He is a medium-haired kittie. I wonder if the Cabergoline is akin to chemo as I know people who have undergone chemo treatments and their hair texture changes drastically. I didn't know the UofM did SRT (not that I could afford it anyway). I'm blessed that I have a vet who lets me do a lot of things through our partnership as I send him articles and suggest different things that I learned on this forum. I hope you can work with your current vet to get them to trust in things they may not know a lot about or find another one (but I know how difficult that is). If I had only followed what my vet clinic had originally told me to do to treat Howie's diabetes, I don't think he would be alive. This forum is THE PLACE for good information, experience and advice!

I don't believe Howie knows he is any different than any other kittie except he gets lots of freeze-dried treats with all his ear pokes!
 
A couple of weeks ago I present a Levemir $99 saving card to a pharmacist. He ran it thought their system and and said it was good. You can get a card (digital is fine, no need to print it out) here:
https://www.novocare.com/insulin/my99insulin.html?src=100001849
Snuffle get his cabergoline from Wedgewood, it is marshmallow-bacon flavored and I add it too his canned food.
I asked my vet about compounding it myself from pills and an oil suspension you can get online for compounding vet meds but my vet said no because of possible problem to me caused by the compounding (grinding it to fine powder and mixing with the oil).
 
Larry and Kitties said:
A couple of weeks ago I present a Levemir $99 saving card to a pharmacist. He ran it thought their system and and said it was good. You can get a card (digital is fine, no need to print it out) here:
https://www.novocare.com/insulin/my99insulin.html?src=100001849
Snuffle get his cabergoline from Wedgewood, it is marshmallow-bacon flavored and I add it too his canned food.
I asked my vet about compounding it myself from pills and an oil suspension you can get online for compounding vet meds but my vet said no because of possible problem to me caused by the compounding (grinding it to fine powder and mixing with the oil).
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Just a quick question about this Levemir savings card…I’ve never tried to get prescription pet insulin from a regular (human) pharmacy. What do they do when you present a script from a vet? Can they turn you away or deny you using this type of card? I know for things like Good RX, you’re supposed to verify that you’re not using prescriptions for anyone other than a person. Just curious as this $99 savings card would be a godsend!
 
Howiesmom said:
I'm late to the party here, but just wanted to chime in. Howie's IAA came in at 63 (Sept. 2020) and his IGF-1 came in at 532 (Jan. 2021). He also was on ProZinc and I switched him to Levemir. I get 15 pens at a time from Mark's so pay about $530 with shipping--the max you can order and have shipped to the States. (I'm also from Minnesota! Where are you?) If you order when it's warm in the summer months, make sure to get the extra cold shipping materials with it since our Post Office loves to leave packages out and about! Howie is at 25 units BID, so a pen lasts him approximately 6 days. I am SO glad I switched him over from ProZinc. I also have him on Cabergoline which I get from Wedgewood Pharmacy through my vet. His is chicken flavored. It's just a liquid that you mix in with the food and he doesn't even know it's in there. He did lose some pounds before I could get him pretty regulated and then things just seemed to click and I got him in a spot where he sticks in the greens and blues (goal is between 80-120 under renal threshhold) and he has been between 13-14 pounds ever since. I will say that the dandruff has never gone away. I have noticed (and my vet commented 2 weeks ago as well) that his fur seems to have gotten wavy. He is a medium-haired kittie. I wonder if the Cabergoline is akin to chemo as I know people who have undergone chemo treatments and their hair texture changes drastically. I didn't know the UofM did SRT (not that I could afford it anyway). I'm blessed that I have a vet who lets me do a lot of things through our partnership as I send him articles and suggest different things that I learned on this forum. I hope you can work with your current vet to get them to trust in things they may not know a lot about or find another one (but I know how difficult that is). If I had only followed what my vet clinic had originally told me to do to treat Howie's diabetes, I don't think he would be alive. This forum is THE PLACE for good information, experience and advice!

I don't believe Howie knows he is any different than any other kittie except he gets lots of freeze-dried treats with all his ear pokes!
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Great, your story gives me hope. How much ProZinc was he on at his peak? Should I order that many pens of Levemir straight away?

Why Wedgewood Pharmacy? Are they the cheapest for Cabergoline, or what is drawing members of the forum to that particular pharmacy? Do they send it to you already compounded and ready to put in your cat's food straight out of the box?

I'm in the West metro area near Eden Prairie. I reached out to RxArtisans in Wayzata and they can compound Cabergoline, but they couldn't give me a price until I send the prescription to them. But if Wedgewood Pharmacy is cheaper, I might as well go through them. One apprehension I have is that my cat is an extremely picky eater, so the compounding will have to be dialed in for him to wanna eat.

The dander issue is a huge problem. His dander is like 100x worse than it has been previously in his lifetime. Really affecting my allergies and asthma. I think it is correlated to high dose of insulin + IAA, but who knows.

BTW, how much does SRT cost? Are we talking a few thousand, tens of thousands, or six figures?
 
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MisterBillie said:
Great, your story gives me hope. How much ProZinc was he on at his peak? Should I order that many pens of Levemir straight away?

Why Wedgewood Pharmacy? Are they the cheapest for Cabergoline, or what is drawing members of the forum to that particular pharmacy? Do they send it to you already compounded and ready to put in your cat's food straight out of the box?

I'm in the West metro area near Eden Prairie. I reached out to RxArtisans in Wayzata and they can compound Cabergoline, but they couldn't give me a price until I send the prescription to them. But if Wedgewood Pharmacy is cheaper, I might as well go through them. One apprehension I have is that my cat is an extremely picky eater, so the compounding will have to be dialed in for him to wanna eat.

The dander issue is a huge problem. His dander is like 100x worse than it has been previously in his lifetime. Really affecting my allergies and asthma. I think it is correlated to high dose of insulin + IAA, but who knows.

BTW, how much does SRT cost? Are we talking a few thousand, tens of thousands, or six figures?
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Mr Kitty won't touch it in his food, so we just syringe it straight into his mouth.

His dander got much better as he got more regulated, but Howie is very well regulated so I suppose ECID. Have you tried any supplements or anything for his skin/coat?

SRT around here (Ohio) is ballpark $5,000. Top end of quotes around $7800 depending on what all was needed in terms of imaging, pre-testing, number of sessions, how many days (because hotel costs) ,etc. Hypophysectomy was 10k+
 
MisterBillie said:
Great, your story gives me hope. How much ProZinc was he on at his peak? Should I order that many pens of Levemir straight away?

Why Wedgewood Pharmacy? Are they the cheapest for Cabergoline, or what is drawing members of the forum to that particular pharmacy? Do they send it to you already compounded and ready to put in your cat's food straight out of the box?

I'm in the West metro area near Eden Prairie. I reached out to RxArtisans in Wayzata and they can compound Cabergoline, but they couldn't give me a price until I send the prescription to them. But if Wedgewood Pharmacy is cheaper, I might as well go through them. One apprehension I have is that my cat is an extremely picky eater, so the compounding will have to be dialed in for him to wanna eat.

The dander issue is a huge problem. His dander is like 100x worse than it has been previously in his lifetime. Really affecting my allergies and asthma. I think it is correlated to high dose of insulin + IAA, but who knows.

BTW, how much does SRT cost? Are we talking a few thousand, tens of thousands, or six figures?
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Howie was at 6.5 units of ProZinc before I switched him to Levemir (after his positive IAA test). I order the max from Marks at a time as shipping costs are the same for 1 box vs 3. Since he is so high dose (25 units BID currently, was as high as 55 units BID in Jan 2021, and has only gotten down to 17 units BID for a short time before he climbed back up), I have to keep a lot of insulin on hand. One pen right now lasts me 6-7 days. But you can certainly just order 1 box at a time. As for the Cabergoline, my vet uses Wedgewood, so that is who I work through (as do many others on here). He is not comfortable handing me over a prescription for it so I can order it myself (even though legally he can) since he has never had a patient use it. So to preserve our relationship, I work through him to order it and process it for me. So I know I pay more than others on here, but I don’t want to upset him either as he is so good to Howie and I. It comes in a bottle so I can just measure out what he needs and put it straight in his food. I’m glad I don’t have to try and put it straight in his mouth…he’d never come near me again! I’m in Winona, so not too far away!
 
FrostD said:
Mr Kitty won't touch it in his food, so we just syringe it straight into his mouth.

His dander got much better as he got more regulated, but Howie is very well regulated so I suppose ECID. Have you tried any supplements or anything for his skin/coat?

SRT around here (Ohio) is ballpark $5,000. Top end of quotes around $7800 depending on what all was needed in terms of imaging, pre-testing, number of sessions, how many days (because hotel costs) ,etc. Hypophysectomy was 10k+
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I haven’t tried anything for his dander. Any recommendations? Giving him a bath regularly is like sticking needles in my eyes! And waterless shampoo doesn’t work!
 
Howiesmom said:
I haven’t tried anything for his dander. Any recommendations? Giving him a bath regularly is like sticking needles in my eyes! And waterless shampoo doesn’t work!
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Ive never used any, but I would assume omega fatty acids? Fish oil I'm sure, but that's a fine line with cats and mercurcy. I'm assuming he doesn't have allergies or some other cause of the dander...

@Katherine&Ruby, thoughts?
 
Larry and Kitties said:
A couple of weeks ago I present a Levemir $99 saving card to a pharmacist. He ran it thought their system and and said it was good. You can get a card (digital is fine, no need to print it out) here:
https://www.novocare.com/insulin/my99insulin.html?src=100001849
Snuffle get his cabergoline from Wedgewood, it is marshmallow-bacon flavored and I add it too his canned food.
I asked my vet about compounding it myself from pills and an oil suspension you can get online for compounding vet meds but my vet said no because of possible problem to me caused by the compounding (grinding it to fine powder and mixing with the oil).
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Will Mark's Pharmacy accept that card? I uploaded my Levemir prescription (which I just got today) along with that coupon via their Documents Upload tab on the site and haven't heard back. I also emailed Mark's Pharmacy a few days ago and didn't get a response, maybe I'll call in.

So it sounds like ordering the max amount of pens is advisable then given my cat is a high dose ProZinc cat. It sounds like @Howiesmom orders 90 days worth of Levemir at a time. I just hope it doesn't lose it's effectiveness over the course of that many days.

I have had a bad couple days in a row just now with the AMPS. I've only ever fur shot a couple times ever, and I just had two in a row. It just seems his skin won't tent like it used to, GAH!
 
MisterBillie said:
Will Mark's Pharmacy accept that card? I uploaded my Levemir prescription (which I just got today) along with that coupon via their Documents Upload tab on the site and haven't heard back. I also emailed Mark's Pharmacy a few days ago and didn't get a response, maybe I'll call in.

So it sounds like ordering the max amount of pens is advisable then given my cat is a high dose ProZinc cat. It sounds like @Howiesmom orders 90 days worth of Levemir at a time. I just hope it doesn't lose it's effectiveness over the course of that many days.

I have had a bad couple days in a row just now with the AMPS. I've only ever fur shot a couple times ever, and I just had two in a row. It just seems his skin won't tent like it used to, GAH!
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I ordered about 5 pens at a time. The last ones I ordered beginning of last year (2021) and they expire end of this year. So long as they're not opened they last a long time
 
MisterBillie said:
Will Mark's Pharmacy accept that card? I uploaded my Levemir prescription (which I just got today) along with that coupon via their Documents Upload tab on the site and haven't heard back. I also emailed Mark's Pharmacy a few days ago and didn't get a response, maybe I'll call in.

So it sounds like ordering the max amount of pens is advisable then given my cat is a high dose ProZinc cat. It sounds like @Howiesmom orders 90 days worth of Levemir at a time. I just hope it doesn't lose it's effectiveness over the course of that many days.

I have had a bad couple days in a row just now with the AMPS. I've only ever fur shot a couple times ever, and I just had two in a row. It just seems his skin won't tent like it used to, GAH!
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The boxes I have from my last order from Marks expire 12/2022. So if you don’t use them and keep them refrigerated, the insulin stays just fine. I know people on here can make a pen last 6-9 months with no problems.
 
MisterBillie said:
The dander issue is a huge problem...I think it is correlated to high dose of insulin + IAA, but who knows.
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Mister's on a relative moderate dose of insulin compared to a lot of acros. Neko got to a bit higher dose and also had IAA and didn't have a big dander problem. Skin issues tend to be a product of how well regulated they are. Same as non acro diabetics. I did give her fish oil. Nordic Naturals is a good brand.
MisterBillie said:
Will Mark's Pharmacy accept that card?
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Likely not, they are in Canada. The card is for US residents.

I've heard of people keeping a vial 6-9 months. You'd have to be giving a really tiny dose for it to last that long. Neko on around 1 unit the cartridge (pen refill/so same size) lasted 3 months.

SRT varies based on numbers of days of radiation (common amounts are 1-3 days), whether an MRI is needed or just a CT scan, any special treatment due to cat's condition. Neko did day visits for CT scan and SRT treatments. I have heard of cats with heart issues staying overnight. Also Cyberknife is more expensive that regular SRT. You might want to call and ask.
 
UMN doesn't have cyberknife, just normal SRT.

I put the bat signal out and am starting to aggregate data and opinions among the top vets in the world. I contacted the vet who wrote that dvm360 article in the OP, he recommended Tina Owen. I contacted David Bruyette who has a lot of great info here and here, who also recommended Tina Owen.

I am having major decision fatigue over this. From what I can tell, hypophysectomy is the best option ignoring price? But unlike SRT where I am sure the UMN would do a great job, the added constraint with a hypophysectomy is that you absolutely have to make sure the surgeon is skilled. Tina Owen is the best in the world at the surgery, or is RVC better I wonder...

Many hours of researching yet to go... If Tina Owen is the best option, then I guess I have to go to Washington.

Wendy&Neko said:
I have yet to see members here go to WSU for hypophysectomy that did not have some type of complication.
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What were all the complications exactly? I thought WSU was the best option? If it were your choice as to what to do, money no object, what would you do? Same question goes to everyone else reading this.
 
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Tina Owen is at Washington State University. The only members who have posted here that have gone there for surgery have had complications. By complication I mean injury or not all the tumour removed so follow on SRT was needed. There are likely some successes, but we haven't seen them post here. RVC has done a lot more surgeries done on cats. We've had people post here who have been to RVC. There is also a surgeon in New York at AMC who has had some success. Higher rate of remission with surgery, but also higher risk and higher cost. More details in this post: https://felinediabetes.com/FDMB/threads/unpublished-uk-paper-on-68-hypophysectomy-cases.244436/
 
To put it bluntly, it really comes down to what you can "live with" or "handle" and you have to be honest with yourself. Same as any other major decision for healthcare. I am not completely familiar with the full list of possible complications but -

For surgery - could you handle if something bad happened? Could you handle the complications (ill tag @Jodey&Eddie again, things have calmed down a bit for her)? If it did regrow, how would you feel? Could you handle a cat with a different personality if something happened?

For SRT - can you live with the timeframe it may take for tumor to completely die off? If he starts to develop acro complications in that timeframe, would you regret your choice of SRT? If it regrew, how would you feel?

I'm not trying to send you down a rabbit hole, just looking at it objectively.

I am naturally pretty risk averse. I personally could not handle the risks associated with surgery. Cats heads are so small, the tumor even smaller. I know there are people in the world with those skills but ...no. Not for me.

For me, the SRT "risk" of waiting for it to die off is more palatable. And then they obviously both carry similar anesthesia, etc risks.
 
The other thing to pile on what Melissa said is that cats don't react the same to treatment. Neko never got off of insulin, but she got to much lower doses fairly quickly, and more important, better quality of life within months of SRT. At the time, my choices were SRT or treat with insulin, so it was an easy choice for me. I got over 4 more years with her, so I'm happy with my decision. There are more options now so definitely a harder decision. Some people are limited with funds or ability to travel, so cabergoline is a nice option for them and we've seen some good results, but again a wide range of results in how effective it is. Generally lower dose cats do better.

With surgery we've seen some great results. Titan (RVC) and Sophie (AMC) did really well with hypophysectomy. Sophie will be 4 years this year since surgery. There was a another cat had surgery around the same time as Sophie who had his personality change, and the cat fell out of remission. So again results vary. More success is shown if the tumour is smaller.

And one thing to keep in mind. These cats are older, and often have other conditions going on outside of acromegaly. Of the three other cats who had SRT around the same time Neko did, two passed from unrelated cancers. :( Those numbers also play into the statistics of cat longevity after surgery or SRT, which aren't that dissimilar. Surgery has higher odds of remission which is really important for some people.

You need to really look at what your objectives are for Mister, and you. And your level of risk tolerance, and budget/time availability. I'm not adding ability of cat to travel, because based on prior experience I thought travelling with Neko would be a nightmare. But over the 3 days there and 3 days back, she grew quite used to it. And we ended up taking car trips with her later on.
 
Wendy&Neko said:
Tina Owen is at Washington State University. The only members who have posted here that have gone there for surgery have had complications. By complication I mean injury or not all the tumour removed so follow on SRT was needed. There are likely some successes, but we haven't seen them post here. RVC has done a lot more surgeries done on cats. We've had people post here who have been to RVC. There is also a surgeon in New York at AMC who has had some success. Higher rate of remission with surgery, but also higher risk and higher cost. More details in this post: https://felinediabetes.com/FDMB/threads/unpublished-uk-paper-on-68-hypophysectomy-cases.244436/
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Having two acrokitties who have both had hypophysectomy at WSU with the pituitary team (Tina Owen, Annie Chen-Allen and Linda Gail Martin), I can vouch for their skill and depth of caring. Blue, my silver tabby had hypophysectomy in 2018 (Feb 7). He had SRT in November 2020 for a regrowth and as of April 2021 is totally off insulin.

Eddie is Blue's actual brother. He was diagnosed with acromegaly in late 2020, had hypophysectomy in Dec. 2020. He had complications for two reasons. He had dehiscence of the incision twice, which resulted in him having to be in hospital for 28 days. He was in rough shape but that was not due to the hypophysectomy but rather to a complication caused by him eating and opening the incision. The other complication was that the tumour was too large and too close to the hypothalamus to be entirely removed with damage to the hypothalamus, hence the SRT in Feb. 2021. The thing is, SRT is more precise than surgery could ever be but that doesn't mean don't go for surgery if it's a viable option. As they say here, ECID.

Eddie's had a tough time as you can see if you check posts in the last few weeks but the crisis was a function of sedation for a checkup CT.

There's so much to say but I stand behind WSU. Even today I am able to arrange a Zoom call with these three highly skilled vets who are also teaching veterinary medicine at WSU.

I hope all goes will for you. If ever you do speak with Tina Owen, just mention Blue and Eddie. Honestly.
 
Wendy raised another good point about the other health issues (just look at my signature). Thyroid could have been another 2k+ surgery or radiation if he could even undergo anesthesia, no guaranteed cure for IBD/SCL but that's a "slow burner" usually, and I assume CKD incoming. Not to mention the bills we've already piled on with ER, insulin, and everything in between. While we are comfortable, for a young family we do unfortunately have to factor finances into the equation.

I hate to reduce a cat to cost, finances, and time left but realistically based on the studies that are out there I've got maybe another year with him. So just for us personally, that money on SRT would have been "wasted" (I really do hate to use that word because I am not that cold, it's just 5-8k that had we known the other stuff would crop up, would have used elsewhere). But you really just don't ever know the future, I surely didn't know a cat could have all these challenges before this last year.
 
Regardless I think you are doing exactly the right thing. Researching the people who do these things, looking for case studies, asking the hard questions, etc.
 
Jodey&Eddie said:
Having two acrokitties who have both had hypophysectomy at WSU with the pituitary team (Tina Owen, Annie Chen-Allen and Linda Gail Martin), I can vouch for their skill and depth of caring. Blue, my silver tabby had hypophysectomy in 2018 (Feb 7). He had SRT in November 2020 for a regrowth and as of April 2021 is totally off insulin.

Eddie is Blue's actual brother. He was diagnosed with acromegaly in late 2020, had hypophysectomy in Dec. 2020. He had complications for two reasons. He had dehiscence of the incision twice, which resulted in him having to be in hospital for 28 days. He was in rough shape but that was not due to the hypophysectomy but rather to a complication caused by him eating and opening the incision. The other complication was that the tumour was too large and too close to the hypothalamus to be entirely removed with damage to the hypothalamus, hence the SRT in Feb. 2021. The thing is, SRT is more precise than surgery could ever be but that doesn't mean don't go for surgery if it's a viable option. As they say here, ECID.

Eddie's had a tough time as you can see if you check posts in the last few weeks but the crisis was a function of sedation for a checkup CT.

There's so much to say but I stand behind WSU. Even today I am able to arrange a Zoom call with these three highly skilled vets who are also teaching veterinary medicine at WSU.

I hope all goes will for you. If ever you do speak with Tina Owen, just mention Blue and Eddie. Honestly.
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I don't think I've ever asked - for Blue, did they think they got it all and it was a "surprise" regrowth?
 
FrostD said:
To put it bluntly, it really comes down to what you can "live with" or "handle" and you have to be honest with yourself. Same as any other major decision for healthcare. I am not completely familiar with the full list of possible complications but -

For surgery - could you handle if something bad happened? Could you handle the complications (ill tag @Jodey&Eddie again, things have calmed down a bit for her)? If it did regrow, how would you feel? Could you handle a cat with a different personality if something happened?

For SRT - can you live with the timeframe it may take for tumor to completely die off? If he starts to develop acro complications in that timeframe, would you regret your choice of SRT? If it regrew, how would you feel?

I'm not trying to send you down a rabbit hole, just looking at it objectively.

I am naturally pretty risk averse. I personally could not handle the risks associated with surgery. Cats heads are so small, the tumor even smaller. I know there are people in the world with those skills but ...no. Not for me.

For me, the SRT "risk" of waiting for it to die off is more palatable. And then they obviously both carry similar anesthesia, etc risks.
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FrostD said:
Wendy raised another good point about the other health issues (just look at my signature). Thyroid could have been another 2k+ surgery or radiation if he could even undergo anesthesia, no guaranteed cure for IBD/SCL but that's a "slow burner" usually, and I assume CKD incoming. Not to mention the bills we've already piled on with ER, insulin, and everything in between. While we are comfortable, for a young family we do unfortunately have to factor finances into the equation.

I hate to reduce a cat to cost, finances, and time left but realistically based on the studies that are out there I've got maybe another year with him. So just for us personally, that money on SRT would have been "wasted" (I really do hate to use that word because I am not that cold, it's just 5-8k that had we known the other stuff would crop up, would have used elsewhere). But you really just don't ever know the future, I surely didn't know a cat could have all these challenges before this last year.
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My cat Mister is only 8 years old and I literally love him as much as a human son or daughter. The two other cats my family had when I was growing up were my exact same age, and both of those cats lived to their upper teens. I refuse to believe my Mister is at the end of his life, if anything he's got half his life left.

To answer your question, no I could not handle if something bad happened, it would devastate me. But I also want the best possible chance at him living a long life. For example, SRT reduces IGF-1, but it doesn't normalize it. Elevated IGF-1 leads to congestive heart failure.

So I guess whichever option affords him to live as long as possible with the best possible health outcome is the option I am gravitating towards. I am going to buy an airline approved pet carrier and start mentally preparing both of us for the possibility of going to RVC or AMC.
 
MisterBillie said:
My cat Mister is only 8 years old and I literally love him as much as a human son or daughter. The two other cats my family had when I was growing up were my exact same age, and both of those cats lived to their upper teens. I refuse to believe my Mister is at the end of his life, if anything he's got half his life left.

To answer your question, no I could not handle if something bad happened, it would devastate me. But I also want the best possible chance at him living a long life. For example, SRT reduces IGF-1, but it doesn't normalize it. Elevated IGF-1 leads to congestive heart failure.

So I guess whichever option affords him to live as long as possible with the best possible health outcome is the option I am gravitating towards. I am going to buy an airline approved pet carrier and start mentally preparing both of us for the possibility of going to RVC or AMC.
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That makes sense. I too thought Mr Kitty had a long time left at the initial diagnosis, then everything just piled on. Call it bad luck, who knows. He may surprise me yet. And to be clear - it's not that I don't love him. It's that my hands are tied with the variety of things he has going on, and a family to take care of.

And you are right, elevated IGF can lead to lots of things, not just heart troubles. Unfortunately none of us can really weigh everything for you, it's a very personal decision. In a perfect world where nothing bad happens, yes the surgery seems to align best with your goals. That said, the other thing to consider is quality of life, not just a long life. So if something did happen - like a changed personality as we've seen a few times - what's the quality of life in that scenario?

But again if it regrows or they can't remove it all, you're sort of back at square one, still secreting growth hormone. I don't know the statistics on regrowth or incomplete removal (probably a good question to ask them and look for in studies) but we do know there isn't really a link between tumor size and IGF value. So the piece that's left or comes back could theoretically still be putting out quite a bit of growth hormone.

I think I would also ask that if it does regrow in either scenario, what's the next step? Do you pay for a full second surgery and scans? Pay for full SRT? Are they even willing to do repeat procedures?

How many cats post SRT develop acro-related complications? What's the average time to see full results? We know it can take up to two years, not sure what the average is (Wendy may know)

I'm truly not trying to sway you either way. Just asking the questions I'd be asking, running through the scenarios I'd be running through before making a decision.
 
I emailed the people at RVC (fdrc@rvc.ac.uk) and they were always quick to reply. I know the people who went to AMC also had conversations with the vet there before going there. From what Jodey said, it sounds like the folks at WSU are also open to a conversation. Probably time to put together a list of questions. The answers to regrowth for surgery are in the hypophysectomy paper I linked above. Sounds like RVS was also trying pasireotide. Both SRT and hypophysectomy it's a small minority. And yes, you repay if you need to get a second type of treatment. Which includes new CT scans as the tumour will look different. Details on SRT and statistics are here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6060317/

Some more threads you might find interesting as some people have already gotten some questions answered that might be the same as yours:
About Sophie (AMC)
https://www.felinediabetes.com/FDMB/threads/trying-to-figure-out-the-next-step-for-sophie.200362/
https://www.felinediabetes.com/FDMB/threads/sophies-new-york-adventure.204204/
Schmee (AMC)
https://www.felinediabetes.com/FDMB/threads/shmees-pituitary-gland-removal-surgery.200421/
Do keep reading further down this thread. Note, as of 2018 when John took Titan to RVC, they had done 80 hypophysectomies on cats. Obviously a much higher number now.

Titan (RVC)
https://www.felinediabetes.com/FDMB...t-diabetes-cured-by-pituitary-removal.200701/ the surgery story starts about post 27
 
My vet is willing to give me the Cabergoline prescription, but he has no experience with it. He mentioned the following:

Strength: 100 micrograms per ML
Dosing: 75 micrograms orally every 48hrs

It's $120 for 40 days worth via Wedgewood Pharmacy. Does that price and dosing seem right?
 
MisterBillie said:
My vet is willing to give me the Cabergoline prescription, but he has no experience with it. He mentioned the following:

Strength: 100 micrograms per ML
Dosing: 75 micrograms orally every 48hrs

It's $120 for 40 days worth via Wedgewood Pharmacy. Does that price and dosing seem right?
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How much does he weigh?

I'd double check the dose. The standard dose is 5-10mcg/kg, every other day. I think a lot of us start at 10mcg/kg every other day.

Mine is compounded at 250mcg/mL, 16mL bottles (so it's 4mg cabergoline total in there). Mr Kitty is about 5kg, so it's 64 doses in there. Every other day, that's 6+ months. I pay about $35 for the pills and extra $10 to compound. From what I understand the vet is essentially doing it at cost for me

@Suzanne & Darcy did you get yours from wedgewood?
 
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