12/29 Dx Acromegaly (Rui)

Status
Not open for further replies.
katieroc

katieroc

Member Since 2014
Hello all--I recently posted on the regular forum (under "haven't posted for a while-looks like acromegaly") and it was suggested I post here. My cat Rui (dx FD 9/14) just had an IGF-1 test (results >521). A/o today he's on 10 u Lantus twice daily. Numbers rarely lower than 300's, now into 400's. I took him Saturday to Red Bank Veterinary Hospital in central NJ for a consult. Not sure of next steps (the doctor I saw will consult with the radiation oncologist; should be getting back to me shortly). I know some of you have had success with SRT for your acrocats, but I have so many questions and I really value the information and experience of those who have gone through this.
--Anyone who has not opted for radiation therapy, what is your experience? (Treatment is very, very expensive)
--What should I expect after therapy if we opt for SRT and it's the right treatment for Rui (based on the diagnostics)? Any long lasting side effects?
--I believe the doctor said he'll need steroids after surgery to reduce brain swelling. I'm afraid of that since it will raise his BG even more, but it looks like there's no choice.
--Since Rui is only 6, the doctor indicated even if radiation is successful, there is a chance the tumor will return. Does anyone have experience with that?
--Has anyone had IMRT vs SRT?
--Has anyone opted out of radiation and had the pituitary removed? If so, where did you have that done?
--Has your kitty gone into remission after radiation?

Any suggestions of questions I should be asking the doctor is greatly appreciated.

Thanks to all.

Susan
 
Hi Susan!

Glad you made it over here! Since the move to the new board last week the links aren't working, but I detailed everything about Punkin's SRT at Colorado State for people who it might help in the future.

Here's a beginning: http://felinediabetes.com/FDMB/threads/srt-to-treat-acromegaly-punkin-9-2011-csu-presentation.52744/

I'll flag down Lauren to come and tell you about Tommy. Tommy & Punkin were diagnosed at the same time with acro - we opted for the SRT and she opted to treat via dosing. She had a great success with him - in many ways (every way?) better than Punkin did. It's definitely an option and I think it's worth considering.

I'll get back to you later today, but just wanted to let you know you've found the right spot and we'll give you a hand.

What symptoms does Rui have, other than the need for more insulin? Did you have a chance to look at the information on the New to the Group sticky before all the links broke? Robert is supposed to be fixing them soon, so hopefully they'll be back up and working in the next day or two. In the meantime, the one http://felinediabetes.com/FDMB/threads/sticky-lantus-levemir-new-to-the-group-please-read.18139/ that's listed as the report below still has a hot link and if you click on the link (from the new to the group sticky above) there is a section on acromegaly that is pretty good.


  • 2014 ~ 39th Congress of the World Small Animal Veterinary Association (WSAVA) ~ many thanks to Larry and Kitties and Wendy&Neko for sharing:"

    • Which Insulin in Cats - p 156
    • Management and Monitoring of the Diabetic Cat - p 160
    • Feline Diabetes - p 229
    • Diabetes Mellitus and Quality of Life - p 730
    • Acromegaly in Cats – p 733
    • Insulin Resistance – p 737 (description of mechanisms of resistance on p 738 under heading Pet)
    • Medical and Nutritional Management of Diabetes Mellitus – p 739 (description on p 741 of glucose toxicity and lipotoxicity)
 
Here's your last post with more of Rui's story: http://felinediabetes.com/FDMB/threads/havent-posted-for-a-while-looks-like-acromegaly.130326/

sorry no one got back to you after your questions. I am still learning to navigate this new site and didn't see your earlier response.

For food - you've got 2 things going on. One is that high blood sugar makes them hungry. The nutrients (glucose) is floating around in his body instead of getting into the cells to nourish him. That's true of any diabetic cat when their blood sugar is high. they are eating but not getting the value of the food, so the cat is literally starving and might be losing weight in spite of eating a lot.

Then Rui has the added problem of the hormones being put out by the pituitary tumor. It's like being a teenage boy all the time - starving because your body is trying to grow.

The best you can do is hit a happy medium - you want to feed him enough that he doesn't lose weight. He won't know when to stop because of the hormones. If he's at a healthy weight right now, you don't want him to gain weight. It's not like he would grow and then stop and be satisfied - the hormones will keep him wanting more. The trouble with feeding as much as he wants is that you need even more insulin to deal with the carbs in the food. So that's the balancing act you've got to negotiate.

Punkin weighed about 14lbs and i fed him 3 cans of fancy feast per day. One cat with each shot + 1/2 can at +3 both cycles. Then I added boiled chicken breast (minimal/zero carbs for pure meat) to help him make it through the day. They were his pokey treats (small cubes like 1/2") but often i gave him more than just one because he was always hungry until he'd had the SRT done.
 
sorry to keep posting - i keep thinking of things. hahahaha

I just wanted to say that you are going to want to get in the habit of getting a mid-cycle test in every cycle with Rui. Lantus dosing is based upon how LOW the dose gets him, and that typically is going to be somewhere in the middle of the cycle. Right now you are measuring what is likely the high points, at preshot.

The next time that you get blood drawn, I would get the iaa test done at Michigan State Univ - same lab as the acro test. IAA is more common than vets have thought - most don't suggest the test, but we've found that a good percentage of our high dose cats have iaa. It's helpful for dosing strategies to know if iaa is in the picture, or if it's just acro.

The other high dose kitties on the forum are Suzanne/Cobb, Marilyn/Polly, Wendy/Neko, Maria/Keiko, Peg/Toby, Suki/Crystal - not sure if i've gotten everyone, but those are the ones active in the past couple of days. Feel free to post and ask people questions.

Many people with high dose kitties do make the switch to Levemir - not all. I stuck with Lantus mostly because of my schedule. Lantus nadirs a little earlier in most cats. But if Punkin were still alive now, I'd make the switch. I've seen some remarkable success in flattening out curves after switching to Lev. I wouldn't switch til I'd used up the Lantus, but it's definitely an option to keep in mind.
 
Hi Susan & Rui

I also have an acrocat, Crystal who was dx in November this year, and this is all new to me but I just wanted to say that I have great faith in the advice given here, especially by Julie, Wendy and Suzanne. Crystal is also on 10 u Lantus and has consistently high numbers and it all seems so frustrating at times but hang in there, you are in good hands. I don't have much in the way of experience to offer you except that I'm in the same situation but unfortunately without the option of any medical treatment. I live in France and there is just nothing available here, my vet has just opted for pallative care and has no experience of acgromegaly (Crystal is the first case she has seen) so the FDMB has been a real lifeline for both of us, I don't know how we would have coped without their help. We are now following the TR protocol quite aggresively in the hope of a breakthrough so you might be interested to see how Crystal does without SRT.

Good luck with your meeting with the doctor, I hope it works for you both, whichever decision you take.

Suki & Crystal
 
Hi Susan. I know you are probably feeling a bit overwhelmed right now.
big_hug.gif
I was like you, I was reading everything and wanting answers now. I've been meaning to update some of the acro posts here, but with the board switch has broken a few links (hopefully temporarily). In the meantime, I did find the one called Acromegaly, the basics. In addition to the WSAVA 2014 paper that Julie referenced above, Dr. Stijn Niessen (runs the Acromegaly Cat Clinic and Royal Veterinary College in England) also wrote this one in 2013. Lots of good pics and info in that one. According to that article, studies in the US and UK have shown that up to 1/4 of all diabetic cats have acromegaly.

For treatment options, Suzanne is treating Cobb with the insulin he needs. He also had IAA and got up to 31U of Lantus. Not long after he switched to Levemir he came tumbling down the dosing scale and is below 10 units now. IAA is supposed to be self limiting in that after a year-ish, it can break on it's own. But as Julie says, sometimes we'll dose a bit differently with IAA in the picture. Neko has both IAA and acromegaly and I didn't do anything different. There weren's as many beans with high dose cats posting here when I got the Dx. In fact, it was just Julie and she saved my sanity.

The surgery option for acromegaly in cats is fairly new. It's been done for ages with humans (preferred option), also done with dogs for Cushing's but with cat's smaller brains it's not been done much until now. The Royal Veterinary College now says it's their preferred option, but the tumor can't have grown too large. AFAIK, Dr. David Bruyette (VCA Animal Hospital Los Angeles) is the only one doing hypophysectomy in North America on cats. As Dr. Niessen states in the article I referenced above, successful outcomes in cats are directly related to the surgeons experience in the surgery. I wouldn't want to be someone's first couple of patients. I have no idea how much the surgery costs, but I have found a bunch of papers describing it if you are interested and I can post them.

Neko had SRT about 2.5 years ago. I had it done at Colorado State University, which is a much cheaper option than on the east coast. There's a clinic in Canada that does SRT too which is closer to home, but it was $10,000 vs. a little under $4000 at CSU. SRT prevents the neurological issues from acromegaly and your mileage varies on the physical changes. With Neko, I'm pretty sure there are still a trickle effect happening from the grown hormones. Dr. Niessen's paper says it can take up to 3 years for the full affect of SRT. Not sure we'll ever go into remission although 30% are said to. We are on a regular diabetic cat sized dose now. Given where she could have been had we not had SRT, I'm happy we went to CSU.

As for medications, we had none after SRT. Some cats can have a temporary brain swelling and need a short course of prednilisone. The other possible side effect is that some have gone hypothyroid, but that is treated with daily meds. Don't worry about steroids if you need to, we have several cats here on them (including Toby) and you just need to increase the dose a bit to compensate.
 
Hi Susan,

You are definitely in the right place!

Julie and Wendy have given you great information, as they did with me.

I'll share with you my experience with Cobb and his high doses. As they both mentioned, Cobb was dx with IAA back in April. We opted to not test for acro. Several factors went into that decision. First, I knew SRT was not an option for us. At the time I was 8 months pregnant and such a costly procedure was out of the question for our family. Secondly, knowing I wouldn't treat with SRT, I didn't want to know and feel like I could have done more. I decided I would just follow where the insulin needs took us, and make a decision based on what Cobb needed that day. We followed the TR protocol, although the more aggressive increases since we were knowingly dealing with IAA, and I knew about IAA breaking.

I do agree with Julie about Levemir. We switched back in August. Cobb was at 31u of Lantus when we switched. While he never really flinched when he got his shot, some cats are sensitive to Lantus' acidic base and it can sting. Lev is neutral so it doesn't hurt when you're at higher doses. Again, that's a ECID.

Personally I also think, if your cat also has IAA, those antibodies can be insulin specific so an insulin switch may find you needed less insulin simply because the cat is not longer reacting to the Lantus.

Anyway, Cobb is now on just 7 units of Lev, compared to his 31 units of Lantus.

I wrote way more than I intended, I apologize. Please ask lots of questions. You'll find many knowledgeable, helpful, supportive people on this board...who care about you and your Rui.

~Suzanne
 
Susan and Rui...you have found the right place to be! My Polly is an acro cat with iaa as well. She was somewhere beyond 12 but less than 14 when diagnosed in April with diabetes, on insulin at the end of that month. Odd numbers, odd reaction to insulin. My vet was stumped.

Julie and Wendy guided us though those early weeks and by mid July when Polly hit the 7U mark, I had her tested for both acro and iaa. I opted for SRT at Colorado State, completed on September 11. I couldn't have done any of this without FDMB.

Two months later she started coming down the dosing scale. From a high of 10.5U at one time to 5.75U right now. I don't expect her to go off insulin (would be o.k. if she did!), but I wanted to prevent the other possible effects of the excess growth hormone. She has some thickening of her throat membranes and her kidneys are a little larger than they should be (although her b/w is fantastic!). No problems with her heart, slight jaw growth but not really noticeable, and she's always had rag-doll feet so it's hard to tell if they've grown!

CSU doctors told us that about 50% of treated cats go off insulin. Another 40% see significant decreases in dose.

Polly's on Lantus. Local vet prescribed that when she was first diagnosed. After several weeks at higher doses (10 U) Polly began flinching with injections. Now, on the lower dose, no reaction. I just don't want to mess with any insulin changes as long as she is still sliding down the dose needs. (Well, and I have four Lantus pens in the refrigerator.)

Doctor's at CSU mentioned several unlikely but possible side effects, having to do with necrotic brain tissue. We've seen no effects of concern. She's doing great!

That's our story. And I'm sticking to it.

Wendy and Julie and Suzanne are amazing with their knowledge, their commitment to our cats, and their respect for our decisions. Their experiences and willingness to share with us is the gift that has my little girl currently curled on the bed sleeping soundly and feeling pretty great. And when she feels great, I feel pretty good, too.

Whatever you decide, it's the right decision. And you have people here who will support and guide you whatever you decide.

Marilyn and Polly
 
katieroc said:
Hello all--I recently posted on the regular forum (under "haven't posted for a while-looks like acromegaly") and it was suggested I post here. My cat Rui (dx FD 9/14) just had an IGF-1 test (results >521). A/o today he's on 10 u Lantus twice daily. Numbers rarely lower than 300's, now into 400's. I took him Saturday to Red Bank Veterinary Hospital in central NJ for a consult. Not sure of next steps (the doctor I saw will consult with the radiation oncologist; should be getting back to me shortly). I know some of you have had success with SRT for your acrocats, but I have so many questions and I really value the information and experience of those who have gone through this.
--Anyone who has not opted for radiation therapy, what is your experience? (Treatment is very, very expensive)
--What should I expect after therapy if we opt for SRT and it's the right treatment for Rui (based on the diagnostics)? Any long lasting side effects?
--I believe the doctor said he'll need steroids after surgery to reduce brain swelling. I'm afraid of that since it will raise his BG even more, but it looks like there's no choice.
--Since Rui is only 6, the doctor indicated even if radiation is successful, there is a chance the tumor will return. Does anyone have experience with that?
--Has anyone had IMRT vs SRT?
--Has anyone opted out of radiation and had the pituitary removed? If so, where did you have that done?
--Has your kitty gone into remission after radiation?

Any suggestions of questions I should be asking the doctor is greatly appreciated.

Thanks to all.

Susan
Click to expand...
Hi Susan,
I know a lady who took her cat to Red Bank for SRT and her cat's doing exceedingly well!
She is not a member of this forum, so just let me know if you want to contact her.

There is the option of surgery to remove the tumor, finally, in N. America; I know another lady who is set for surgery in January.
Again, she does not belong to this forum.
Gayle
 
pollydoodle said:
Susan and Rui...you have found the right place to be! My Polly is an acro cat with iaa as well. She was somewhere beyond 12 but less than 14 when diagnosed in April with diabetes, on insulin at the end of that month. Odd numbers, odd reaction to insulin. My vet was stumped.

Julie and Wendy guided us though those early weeks and by mid July when Polly hit the 7U mark, I had her tested for both acro and iaa. I opted for SRT at Colorado State, completed on September 11. I couldn't have done any of this without FDMB.

Two months later she started coming down the dosing scale. From a high of 10.5U at one time to 5.75U right now. I don't expect her to go off insulin (would be o.k. if she did!), but I wanted to prevent the other possible effects of the excess growth hormone. She has some thickening of her throat membranes and her kidneys are a little larger than they should be (although her b/w is fantastic!). No problems with her heart, slight jaw growth but not really noticeable, and she's always had rag-doll feet so it's hard to tell if they've grown!

CSU doctors told us that about 50% of treated cats go off insulin. Another 40% see significant decreases in dose.

Polly's on Lantus. Local vet prescribed that when she was first diagnosed. After several weeks at higher doses (10 U) Polly began flinching with injections. Now, on the lower dose, no reaction. I just don't want to mess with any insulin changes as long as she is still sliding down the dose needs. (Well, and I have four Lantus pens in the refrigerator.)

Doctor's at CSU mentioned several unlikely but possible side effects, having to do with necrotic brain tissue. We've seen no effects of concern. She's doing great!

That's our story. And I'm sticking to it.

Wendy and Julie and Suzanne are amazing with their knowledge, their commitment to our cats, and their respect for our decisions. Their experiences and willingness to share with us is the gift that has my little girl currently curled on the bed sleeping soundly and feeling pretty great. And when she feels great, I feel pretty good, too.

Whatever you decide, it's the right decision. And you have people here who will support and guide you whatever you decide.

Marilyn and Polly
Click to expand...
Hi Marilyn,
I just wanted to let you know that acros very well DO go OTJ, on their own.
I know of several who have gone off and on insulin... one cat went OTJ times in his life.
Another acro was on insulin for just a few weeks then went OTJ for over a year, but did come back on later.
One acro got one shot of 6u at his peak, then from that point on, he never tested high enough to need insuin.
One of my own acros got very ill after his vaccines, and he dropped from 21u to 0 in 10 days, and he remained off insulin for the rest of his life.

If the tumor stops secretion, no insulin is needed.... think of a faucet - turn it off, no water.
Most humans with acromegaly never need insulin.
And I know of at least one cat who has not been on insulin ever, has great BG, but because he LOOKS a bit like an acro, he was tested.... you guessed it. He's positive.
 
To all of you--thank you. The information and weath of experience you provide is invaluable. I spoke with the internist at Red Bank this morning and made an appt for Tuesday to take Rui to see Dr. Lewis (who's name has been mentioned on this site) and that is very encouraging. Just knowing there are others out there who have been through this and have positive outcomes makes my heart lighter. You have different stories to tell but they all point to one thing. Dedication and love. Doing the best for your kitties according to your individual decisions. We have much to discuss with Dr. Lewis about treatment and which is best for Rui. I'll be sure to ask about the IAA testing. I will keep you posted. Again-thank you all
 
I'm a little late, but I wanted to chime in as a former acro caregiver too. My foster kitty Jazzy was diagnosed with acromegaly. SRT or surgery weren't an option, but she did very well with Levemir and some R occasionally. She was getting pretty darn close to going OTJ when she died - I think her last insulin dose was 1.75u, down from I believe 16 units at the highest. I actually thought she was the easiest of my cats to regulate once I got used to the idea of drawing up bigger doses of insulin. Of course it helped that she was my 2nd diabetic cat so I had already learned a lot about diabetes and insulin, so I just had to learn how to apply what I knew to treating her specific quirks.

Good luck!
 
Glad you're getting an appointment to talk about options, Susan. Let us know how things go or if we can help. We'll be cheering for you and Rui!

Oh and by the way, Lauren has lost her log in info but as soon as she hears back from Robert the webmaster she's going to come share her story. You'll find Tommy's spreadsheet linked on the info post on Acromegaly. Look in the New to the Group? Sticky then scroll to the bottom where there are single topic posts linked. There are 2 there on a roll that have lots of info in them. The one by Libby who just posted above, has Tommy's ss linked. Lauren kept Tommy tightly regulated in mostly all green numbers all the time and he lived 4 years post-across diagnosis til he was 18!
 
Status
Not open for further replies.
Back
Top