9/18 Hyde Acro/IAA dx confirmed AMPS 425 +3 406 +6 431 PMPS 391

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Anne & Hyde (GA)

Member Since 2015
http://www.felinediabetes.com/FDMB/threads/9-18-hyde-amps-459-pmps-529-3-278-6-306.144506/

Well, it is official. Acromegaly and IAA. Her IGF-1 was 517 mmol/L and IAA 30%. Vet will be calling MSU next week to get some more info and will then pass it on to us.

I have read a lot of information on diagnosis but not a lot about the treatment for either condition.

I think she would be a good candidate for the SRT (no other health issues other than being 14). I don't know a lot about what the prognosis is for either having the SRT or not. If she has the SRT, can she go into remission or will she become a lower dose diabetic. Is it possible for the tumor to come back after the SRT?

What about the IAA? I vaguely remember reading that if you give enough insulin, the issue will "break" and their insulin needs drop.

If anybody can point me to more reading material, that would be helpful.

As for Jekyll who had the vet appt this morning, he has gained .75 lb since May. He had more blood drawn and they will run a series of tests looking at his thyroid, pancreas, liver, viruses etc until we find something. He could use some vines too!
 
Oh Anne I'm so sorry! At least you know now though, and can start moving forward with treatments. I don't have any answers for you, but wanted to send some love and hugs and purrs over. Please keep us posted on Jekyll too! :bighug:
 
@julie & punkin (ga) and @Wendy&Neko are among the people with acro kitties. I'm sure they will be along. Basically, follow TR. What you need to keep in mind though, is that the tumor associated with acromegaly can pump out growth hormone (which keeps BG numbers up) and then it can shut off, which means you may need to drop the dose in larger amounts than is typical for TR. Cats can go into remission with acromegaly. There was a kitty here some time ago that ended up on whopping amounts of insulin (maybe more than 60u) and went into remission. Acro isn't FD in the truest sense of the diagnosis. Rather, FD is a consequence of the acro.

IAA is more a matter of there being a resistance to insulin. You raise the dose you see (or don't see) a response and then the response disappears. It's a matter of raising the dose in order to get ahead of the IAA. If @Sandy and Black Kitty is around, she can provide you with first hand experience. Black Kitty was one of the first cats on the board with IAA.

 
(((Anne))) so sorry to hear you got the diagnosis, thought not really surprised given the dose. But now that you have the duo confirmed, we can help you figure out what is next. Knowledge is power. I will do a longer post later, as I am off to a race today. If you look at the new to the group sticky nearbthe bottom are a couple of links to acromegaly posts with lots of info. Short answer on your SRT options is yes to all, though tumor coming back is reserved for a lucky few. We don't have an IAA post yet but it is supposed to be self limiting over time, around a year. Treatment of the Acro tumor or change of insulin can trigger a change there too.

Btw, not much more info the vet will get from MSU. Remind me,where do you live? It is always better if you can do treatment, to do it closer to home.

Great news on Jeckl gaining weight! Scritches to sweet Hyde, she is the same sweet cat she always was.
 
Sorry to hear that you got the confirmed diagnosis Anne. You sound as if you have the option of SRT close by if you choose that route, but whatever you decide you can rely on lots of experienced guidance and support from the acro mums here. Hugs to you both :bighug: and vines for Jekyll.
 
Now you know. Not what any of us ever wants to know, but we can't change what is, we can only figure out how to deal with it. And this is the place to be for help.

MSU did our testing, but they were not the place to go for additional help. They suggested we switch to Vetsulin!!! Nooooooooooo! Even my local vet didn't think that was a good idea.

I think she would be a good candidate for the SRT (no other health issues other than being 14). I don't know a lot about what the prognosis is for either having the SRT or not. If she has the SRT, can she go into remission or will she become a lower dose diabetic. Is it possible for the tumor to come back after the SRT?

Polly had SRT at Colorado State a year ago (Sept. 11, 2014). They told us that 50% go into remission, 40% have significantly lower insulin needs.

And, yes, it is possible for the tumor to come back. Wendy suspects that Neko's tumor is active again three years after her SRT.

At a year after treatment, Polly has gone from 10.5U down to 0.5 today. Where will she be in a year or two? I don't know.

What about the IAA? I vaguely remember reading that if you give enough insulin, the issue will "break" and their insulin needs drop.

Yes. I doubt that Polly's IAA impacted us much since the aggressive dosing for acro probably kept the IAA in check until it no longer was an issue. Self-limiting within a year or so is what I've heard.

Additional info:

http://www.felinediabetes.com/FDMB/threads/acromegaly-interesting-posts-from-the-past.46820/

Other posts near the above linked one but I can't get them to hot link here.

Our best info came from this board. Better than my local vet, better than MSU, better than the doctors at Colorado State. @Wendy&Neko and @julie & punkin (ga) were/are our guiding lights.

Whatever you decide about treatment, you are in the best place available for helping Hyde.

Yes, not the diagnosis any of us wants. But we play the cards we're dealt. And you can deal with this! So can Hyde.

Marilyn and Polly
 
I'm sorry about the diagnosis, but at least now you can plan treatment. I hope you can get some answers for Jekyll. Sending prayers. :bighug::bighug::bighug:
 
I'm sorry the news wasn't what you hoped, but I'm glad you know what's going on and can make plans to deal with it. This really is the best place to get guidance - Wendy is a huge font of knowledge, as is Julie, and Marilyn has been that route, too. I know they will all help you deal with this.

I'm sorry Jekyll is needing all those tests. I'm afraid I missed it if you mentioned what led you to take him in. Has he not been feeling well? I hope you find an answer and that it's something treatable.

Sending vines and :bighug:
 
I'm afraid I missed it if you mentioned what led you to take him in. Has he not been feeling well? I hope you find an answer and that it's something treatable.

Sending vines and :bighug:
He has been losing weight for unknown reasons. His first set of blood work came back with no obvious issues so now we dig deeper.

Thanks for all the responses and vines - they are very welcome
 
You've already gotten lots of good info. I'm sorry to hear the diagnosis, but the good news is that you know what it is while she is on a relatively low dose. This tells you why ProZinc seemed to not work, and why your initial weeks on Lantus seemed also to be doing nothing. Now you know that she needs more insulin than others might - but if you look at spreadsheets in this ISG, the dosages are all over the map, from 0.1u to close to 100u. The focus is not on the size of the dose, but upon the blood sugar numbers. You already know all of that, but I'm saying it as much for lurkers - anytime someone posts "acro" or "iaa" in the subject line, it brings lurkers from all over to see what the story is.

As far as moving ahead, you've got several balls in the air that you'll be balancing. The overall dose seems to be better controlled if the cat is kept in normal numbers. Just like a non-high-dose cat, if the cat spends a lot of time in higher numbers, glucose toxicity develops and you have to increase the dose to get action that moves the cat's BGs down. On the German Katzen forum, their kitties seem to peak out under 10u and they don't encourage people to test for high dose conditions. I think there is something to be learned from that. I like the way Tilly's Diabetes page spells out some of the Tight Reg guidelines. On the other hand, an acro tumor's production can ramp up or down, putting out more hormone requiring more insulin, putting out less hormones and then requiring less insulin. With iaa, the insulin is bound up (think taken captive) by antibodies, which then release the insulin after a period of time. As others have said, it seems to be self-limiting and we've seen a few times that is has been visible on the spreadsheet when the iaa has broken.

One thing that can seem to help that is adding R into your toolbox. With using a depot insulin, you know that the depot can continue to give out after the dose is reduced, or a shot is skipped. One strategy that Sandy began using under Jojo's guidance (former adviser here and vet tech) was to hold the Lantus dose steady and fluctuate the R dose. The advantage of that is that if the iaa breaks and releases insulin, you have less of a depot to continue giving out. Suzanne did that with Cobb - basically she refused to go over 1 syringeful (31 units) and instead held that and adjusted the dose by using R. When cats build antibodies, it seems to be to a specific insulin. When Punkin was being treated at Colorado State, Dr. Lunn said that most cats do develop some level of antibodies - you're injecting a foreign substance into them. Adding R into the mix is introducing an insulin that wouldn't have antibodies created to it yet.

R - which is Humulin Regular insulin (or I think also Novolin R) can be bought at drug stores typically without a prescription. It's inexpensive and it lasts for ages. I bought 1 vial of it for punkin for something like $35 and it lasted the rest of his life and then I passed it on to another FDMB member. If you want to learn how to use it, say so and we'll arrange it so an experienced R user is with you while you're using it to help. They can also help you understand the test results you get. The goal of R isn't to replace the depot insulin, but to provide a quicker response when you have high numbers. It typically lasts in the body around 4 hours, although with iaa it can last longer. It's the speedboat that can turn quickly, as opposed to the depot insulin, which is a barge. Make a small change to adjust the direction, then wait to see where you're going!

Back to treatments - Wendy's updated that link in the bottom of the "New to the Group" sticky and there is a bit about the newer treatments in there. Dr. Lunn (from CSU) started the SRT program at CSU and then moved to North Carolina to start a treatment program there. She has my deepest respect - when I was trying to figure out how to move ahead with punkin, she talked to me multiple times on the phone, explaining all the details. So if I had the chance, I'd to go her.

There is also a newer treatment that is actually surgery to remove the tumor. One FDMB member, Perry, had Sooty who had the biggest dose I've ever seen - more than 100u per shot. He opted for the surgery and Sooty did go OTJ within a very short time.

Not everyone can afford to treat the acro, however, and Dr. Lunn did tell me that it was acceptable to just give the cat the amount of insulin they need. When Punkin was diagnosed, Lauren's Tommy was diagnosed at the same time. Lauren opted to just give him insulin, and she kept him tightly controlled for years. Literally. He lived 4 years after becoming diabetic and he died at the age of 20. That's pretty amazing.

Punkin had the SRT (you can look in my signature line to the links that include all of the details on SRT, including my daily condos while we were at CSU) and his insulin needs dropped considerably, but he didn't go OTJ. He was at 15.5u while we were at CSU and dropped to about 4-5u, although then we started back up again. He lived 20 months post-SRT, a total of 29 months after being diagnosed with diabetes. We think he was about 15 when he passed away. He didn't die from diabetes or acro, however, but most likely from cancer. His heart was enlarged from the acro, but probably not much of a factor in his death. The tumor's hormones cause the body to continue to grow, and soft tissue is easiest to grow first. Eventually even the bones try to grow, typically causing the lower jaw to grow out and the forehead to come forward and be more vertical than it was before. Punkin's feet became "clubbed" and large, he developed megacolon . . . it's not a pretty picture. I suspect he had headaches, but his tumor, at that point at CSU, was the biggest one they'd seen.

Dr. Lunn was on vacation when we were at CSU, but the entire team there was amazing. I can't say enough good things about them. I imagine she's set up the same sort of team at N. Carolina. I don't know much about the other potential treatment places, although I'm sure we can pull in people who have used them to help you.

Which by the way, my understanding is that the IGF-1 number isn't indicative of how "bad" the acro is. Punkin's was 281, if I remember correctly, and his tumor was big. After the SRT we had his IGF-1 rechecked and it was over 300 at that point. Apparently it doesn't come down after the SRT, although the growth hormones do decline. They used to have a test specifically for growth hormones, and that declined, but no one does that test anymore.

I do want to clarify one thing. I specifically asked Dr. Lunn if punkin was considered a true diabetic, since the acro caused the diabetes. She said absolutely. Diabetes can be caused by any number of things, from steroid use to obesity and dry food, and acro is simply one more of the causes. Acro cats are considered type 2 diabetics. They need insulin and have the same potential issues as other diabetics.

I've written a small book - hopefully others will add their experiences. @Suzanne & Cobb(GA) I'm trying to tag Lu/Grayson but not getting the right thing, so I'll send her a msg on facebook. She has a wealth of experience also. As you know, there are many cats here with acro, iaa, or a combination of the two. You'll have lots of help.

Hmm, i'm looking for Tommy's ss for you and will have to look further. In the meantime, let me just get this posted for you.

Hang in there, Anne. I'm just glad you know what you're dealing with. :bighug:
 
Hugs Anne, so sorry to hear you got the positive diagnosis. Take a few days to get used to the idea, and remember that Hyde has no idea that anything is different.
Both Wendy and Julie are a wealth of knowledge and are extremely helpful when it comes to Acro and IAA. And there are many others of us here to lend and ear when there are issues and cheer each other's successes.
It is the best place to be, if you need to be here.
 
Based on what I've read I would seriously consider the operation IF you can get to a vet experienced with that surgery. It seems that how successful the results are is very much dependant on the surgeon.

Vines for Jekyll, I hope they can work it out soon.
 
So Sorry to hear Hyde is Acro. Never had Toby tested but suspect he probably is too. He just passed his 2 year mark of being 2 yrs. diabetic.
 
So sorry about the diagnosis and hoping treatment whichever one you choose will work well. Other than weight loss does Jekyll have any symptoms? Prayers and vines for both of them.
 
hi anne. we already met on the acro site. im in nc, snd worked with dr kathy lunn for more than 2.5 yrs. post igf-1 n iaa tests, and pre srt at csu, she saw grayson at ncsu before we went to csu for srt in july 2012.
 
...sorry, phone not cooperating. i had lunch with kathy n another former acro mum friday. i would encourage you tou speak with her. they are now trating at ncsu... my vet said their linear accelerator is the best one in the state. not available yet when g was dx, and csu had treated more thaacros than anywhere else in the us. surgery, 2 of the group went to pullman washington, another had surgery at royal veterinary college in london. perry took sooty to yonkers for cyber kbife srt, slightly diff than srt at csu. others have gone to yonkers n achieved complete remission. another had her acro treated at red bank in nj. more facilities are offering it, imrt and variations. 1-20 treatments. ck n srt are typically 3. thats 3 consecutive days, and another for ct scan n plannng. some cats dont/wont teavel well, others not candidates due to advanced issues, primarily heart disease. many have opted to treat as long as they can. also a drug, very expensive, but successful with 2 from our group. one was in a test trial, the other in a european country w/o treatment options. . lots of treatment options, if you choose to go that route. grayson went from 50u Levemir +3u R, down to .5u. we are confident that the abdominal mass, and eosinophilic leukemia were the reason he didnt achieve full remission. but i would def do srt if i had it to do again. i considered it successful.
 
OK, I'm back, and here is the information on options for treatment. There is a lot of reading, but I'd start with the two articles by Dr. Stijn Niessen that are posted here. His 2013 and 2014 articles have a good description of various options. Dr. Niessen is at the Royal Veterinary College (England) and they have an acromegaly cat clinic. They also have a Diabetes Remission Clinic and tested every cat going into that clinic for acromegaly, as they wanted to exclude them from the study. From that large numbers of cats, they discovered that 1 in 4 diabetic cats has acromegaly. I consider Dr. Niessen to be on the forefront of acromegaly research. Dr. Lunn that Julie mentioned above is also one of the top researchers in this area.

As Marilyn mentioned, I do suspect that Neko's acro tumor has returned. It's not as common for that to happen but I have heard of it. Lu-Ann @Grayson & Lu was trying to organize a meeting with Dr. Lunn and may have some updates for us there. As is turns out, DH and I were discussing options for Neko last night. What you choose to do with Hyde is based on many things; the age and general health of the cat, financial ability to pursue treatments (most are pricy), and ability to travel to one of the place that offer treatment. The first option and something you should do regardless of whether you also pursue other options, is to manage the diabetes (I've seen it referred to as a type 3 diabetes) and get the blood sugar under renal threshold as much as possible. Julie described a good process for doing that.

The other treatments you can follow are SRT, Cyber Knife, Hypophysectomy, and Pasereotide. Regular radiation was the only early form of treatment. That is now improved with SRT. There are now more and more places offering this option. Personally, I'd chose a place that has experience treating acrocats before but that's me. Cost ranges at locations from somewhere around $3500 to $10,000. It conists of a 4 day stay, one day of CT scan and planning and 3 days of radiation. Lu-Ann's Grayson had SRT 3 weeks before Neko did at CSU. CyberKnife Radiosurgery is like an even more specialized SRT and is only available at Yonkers New York. Again around the $10,000 range from what I've heard. A few acrocats have gone there - I don't know how many, but most have gone OTJ. Perry's Sooty had CyberKnife I believe.

Hypophysectomy is the surgical removal of the pituitary gland. As Dr. Niessen says, the success of the surgery is directly related to the experience of the surgeons. RVC has the most experience, and probably also at Utrecht, Netherlands. In the US, the only vets who have done this are at VCA West LA and Pullman WA (Washington State University). Surgery is definitely the treatment of choice in the RVC in London, UK. However, I've heard that the surgery is close to $10,000. A much longer stay is required than for SRT and costs two and a half times what we paid for SRT. If successful, the results are better. The excess growth hormone is almost immediately stopped (unlike with SRT), and that means going OTJ.

But there are more side effects and the success rate of surgery depends on the experience of the vet surgeon - one reason few places offer it yet. Kitty then has to go on meds for life, which works as long as kitty is easy to medicate. One kitty who had the surgery recently, they did not get all the tumor. Summary, it's newer, more bleeding edge, riskier and pricier (for now) but better results if successful.

A CT scan is required to see if kitty is a candidate for surgery. I have a few links to articles on the surgery:
http://vetbook.org/wiki/cat/index.php/Transsphenoidal_hypophysectomy
http://www.rvc.ac.uk/small-animal-r...g-edge-brain-surgery-featured-in-the-guardian
http://www.theguardian.com/science/2012/nov/06/surgery-pets-save-human-lives
This one quotes the cost in the UK as 5500 pounds, not much cheaper than the US price.

And lastly, the newer treatment that has so far still in the area of research is Pasereotide, a drug. Here is an article describing it. Again, research done at RVC. They recommend surgery over pasereotide, mostly because of the cost of the drug, but that may vary from country to country. It may be an option for some places where neither SRT, or hypophysectomy is offered, or kitty can't travel. The top article on the RVC Facebook site now talks about a cat in Slovenia undergoing pasereotide treatment. Neko's acupuncture vet said she'd be willing to work with me on this option. I've been thinking of at least contacting RVC to discuss this option. I'd like to at least see what this drug costs in Canada. RVC is currently looking at a pasereotide option that is just one dose a month.
 
((( Anne)))

It's a tough pill to swallow but the way I look at it, once you know what you are dealing with, then you can make a plan and move forward. And you have a ton of help and support here.
 
Hi Anne,

Julie tagged me up above. You've already gotten such great advice. And you have seveal great options you could pursue.

I can give you the perspective of having a confirmed IAA cat who we did not have tested for acro, but we all are pretty positive he had. Cobb had higher IAA% than Hyde.

Like Julie mentioned, we drew a line in Cobb's Lantus dose that we weren't going to cross. A lot of my decisions were made based on where we were/are in our life. Cobb was originally diagnosed with diabetes when I was 7 months pregnant with our first child. We treated him for months on Prozinc (and dry food) before I joined the board. We switched to Lantus and this board was my last ditch effort to save him. We got him off the dry food and everyone started encouraging the high dose testing. We tested him for IAA when we reached 21u of Lantus.

We really treated Cobb's IAA with the R insulin, as mentioned above. We kept his Lantus dose at 31u for awhile, and manipulated the R to get his numbers down. Eventually his IAA broke, we think, and his dose started coming down. Once his dose started coming down, we rarely used the R again.

Having a diagnosis is a double-edged sword. On one hand, you know what you're up against. On the other, you don't know which option to pursue, will it work, etc. Definitely ask as many questions as you need! We are here (some of us more often than others) to help!

~Suzanne
 
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