? 06/08 Marvin's results are in ? Maybe

[Marvin's Mom - Nat]

Yesterday

IAA - Negative, Insulin Growth Factor = 380 .... seem to recall that the number for acromegaly should be alot higher. does this number make sense? Since vet hasn't dealt with this before, based on what she found she thinks he probably has acromegaly. what she was told anything over 10 would indicated the possibility. However I thought I saw somewhere the the number was suppose to be in the thousands.... mind you not even sure I am talking about the same numbers.... anyways writing this quick, as want to try and find the numbers I thought I saw.... however if you understand the number before I find it, give me your thoughts.

Right now she wants to stay at 7U for a while and see what happens. there is one other cortisone (i think that what she said)test she mentioned that may be worth looking in the future....

 

[Wendy&Neko]

Over 92 is positive for acromegaly. So so sorry for the diagnosis. But now you know what you are dealing with and can move forward accordingly. And BTW, Marvin doesn't know any different. Give his some scratches from me.

Over 10 is positive for IAA, over 1000 for acro if using the UK measuring system. The other test she is probabaly thinking about is for Cuahings. I would apsave your money.

 

[Marvin's Mom - Nat]

Over 92 is positive for acromegaly. So so sorry for the diagnosis. But now you know what you are dealing with and can move forward accordingly. And BTW, Marvin doesn't know any different. Give his some scratches from me.

Over 10 is positive for IAA, over 1000 for acro if using the UK measuring system. The other test she is probabaly thinking about is for Cuahings. I would apsave your money.

Ok, that makes sense didn't think of the measurements would be US and I probably mixed the IAA. Ok so my baby is an Acro Kitty. So basically, for him he would never go in remission, so is the goal green numbers or just under 200? or it shouldn't make a difference? Thinking of his neuropathy too. I am hoping that since I have finally seen some good numbers, that he won't go much higher than 7-10U.... hopefully below.....

Wondering how treating an acro cat is different, from the different meds we give to make them more comfy, to other things I may not have throught of... oh ya making him lose weight lol

 

[Wendy&Neko]

It is possible for an acrocat to go into remission, but I have only heard of a few instances without treatment. There is treatment that can either radiate or surgically remove the tumour that greatly increases the chance of remission. Neko had the radiation treatment (SRT), but just went down to low doses, she remained on insulin. The treatments are pricy, and even more so now than when we first had it done. In Canada, the closest to you may be U of Saskatoon Vet School. There are also places that do the radiation in the eastern US. The majority of people do not treat, but rather try to get to a dose that gives good numbers, and manage any symptoms that arise from the excess growth hormone. There is new research working on drugs that are cheaper and mean you don't have to travel for treatment. But results are not in yet for the cheaper drugs. @Bronx's dad was on the trial for a while.

A good goal for blood sugar is one that keeps Marvin below renal threshold most of the time. Acromegaly can be hard on the kidneys. Below renal threshold varies by cat, but is somewhere low yellow to mid blues. And his dose needs may vary over time as the tumour pulses up and down. It's not an overnight change. I wouldn't hold him too long at 7 units. A dose getting him into upper greens is more likely to meet the target of below renal threshold. For Neko the magic dose was one that had nadirs in the 70's.

Neuropathy should get better in better BG numbers. You also might want to have him checked for arthritis, which is common for acros. Neko's got so bad after a couple years I went to daily buprenorphine for the pain. It was a game changer in her QOL. Another thing to watch for is whether Marvin is reacting to th Lantus. It has an acid base and some kitties notice the sting on injection, especially at larger doses. Many acros switch to Levemir for that reason. With Neko, I also found it made her numbers flatter. But I have seen some on large Lantus doses do fine, ECID.

Don't worry so much about the weight unless he is fat. Excess growth hormone is causing bony and soft tissue growth, he is getting bigger.

I know I had a million questions at this point. Krep asking, you've got lots of support here.

 

[Bronx's dad (GA)]

Sorry about the diagnosis Nat. There are about 6-8 folks here who are active on this board currently dealing with acro cats. Some also have IAA. Bronx is like Marvin, just acro (IGF-1 came back at 434). There are options, Bronx was on a trail drug and I am not sure it was working since I stopped it to do the SRT, but he was trending lower at the end of the trial. From what I've heard from the very small trail, the kitty that was not on a huge insulin amount (like Marvin) has almost gone into remission the last I heard, which was about 1-2 months ago. There was another cat, not on this board or part of the official trial, that went from 110u to 70u from the use of the trial drug (Cabergoline). Official trial is going on in UK being done by the RVC which is on the forefront in dealing with acromegaly in cats.

Like Wendy said, keep asking questions. Wendy has helped me tremendously dealing with the acro condition, she has great knowledge in this area. Here are some things that you may see going on and possible treatments, don't let it all scare you but it is good to know: https://docs.google.com/document/d/1ZkMmEyux5PxLb6I-FUUOCuZPs2MCYQcpHjG747KRK6c/edit

 

[Marvin's Mom - Nat]

thanks, he has alway been big, he is actually losing alot of weight, that is one of the things that was not aligned with acro cat symptoms.... but the only one .... He has lost over 7 pounds in the last 2 years, 5 in the last year, and out of that 5 about 3 since January. Before this diagnosis Vet wanted to get his weight down to help with the insulin, as I guess sometimes it has an impact. To me he isn't fat, but everyone else says he is. I feel just the bones now, specially his back end, feels like just skin.

I won't be going the radiation route, unless I win a lotto, I believe that Guelph University may do radiation for it. The surgery, from what I have heard here and from the vets, is only in the UK .... So insulin it will be. I haven't seen Marvin react to the shots at all. so that should be good.

 

[Bobbie And Bubba]

Ah, sorry about the DX. But, at least you now know what you are dealing with and that info will help you. Sending hugs and lots of hugs.

 

[Wendy&Neko]

The surgery is also being done at Washington State University, in Spokane WA. But I've heard it's north of $10,000 ($US ) and they don't have the experience with the surgery that the folks in London do. Worst part of the surgery option is kitty may have to stay there for up to two weeks. Funnily enough, we drove through and stayed in Spokane one night on our way to have SRT in Fort Collins, Colorado. They weren't doing the surgery there at the time.

Unregulated cats will lose weight - Neko did too until she got into better numbers.

 

[Marvin's Mom - Nat]

Sorry about the diagnosis Nat. There are about 6-8 folks here who are active on this board currently dealing with acro cats. Some also have IAA. Bronx is like Marvin, just acro (IGF-1 came back at 434). There are options, Bronx was on a trail drug and I am not sure it was working since I stopped it to do the SRT, but he was trending lower at the end of the trial. From what I've heard from the very small trail, the kitty that was not on a huge insulin amount (like Marvin) has almost gone into remission the last I heard, which was about 1-2 months ago. There was another cat, not on this board or part of the official trial, that went from 110u to 70u from the use of the trial drug (Cabergoline). Official trial is going on in UK being done by the RVC which is on the forefront in dealing with acromegaly in cats.

Like Wendy said, keep asking questions. Wendy has helped me tremendously dealing with the acro condition, she has great knowledge in this area. Here are some things that you may see going on and possible treatments, don't let it all scare you but it is good to know: https://docs.google.com/document/d/1ZkMmEyux5PxLb6I-FUUOCuZPs2MCYQcpHjG747KRK6c/edit

Thank you Bronx dad.... Looks like the two of you have been through a lot. I hope the radiation works for Bronx's. I noticed you are trying alot of different supplements and meds. Have you found any that you would recommend. Does Bronx have neuropathy? Marvin does, it's severe, he is doing a bit better, with the zobaline and cosequin. Would you recommend looking into the trail even if you didn't see much results? Is it costly?

I agree with you about Wendy, she has been a real godsend for me too. Especially when I am feeling completely lost.

 

[Marvin's Mom - Nat]

The surgery is also being done at Washington State University, in Spokane WA. But I've heard it's north of $10,000 ($US ) and they don't have the experience with the surgery that the folks in London do. Worst part of the surgery option is kitty may have to stay there for up to two weeks. Funnily enough, we drove through and stayed in Spokane one night on our way to have SRT in Fort Collins, Colorado. They weren't doing the surgery there at the time.

Unregulated cats will lose weight - Neko did too until she got into better numbers.

Not sure how much the radiation is, my sister is in Denver... hmmmm.... I would have to save for a long time. Unfortunately even with a good job the finances are tight. If he can get a bit better, stop peeing on the floor, I was about to put the house up for sale, downgrading as a house is too much on my own. I probably could look into radiation, but car + Marvin= terrified kitty and lots of crying and pee. If it's not too personal aprox how much for SRT?

 

[Wendy&Neko]

The costs of radiation vary based on where you go, how many days of radiation and whether they need to do an MRI. They need to do a CT scan to spot the tumor and plan the radiation, and some kitties tumours don't show on the CT scan, so they need to an MRI too. Costs are from $5K to $10K. Remember it might be US$ too. Plus travel costs and hotel. Fort Collins is a good drive from Denver. First time we drove to Colorado (3 full days drive each way), second time we flew. My little girl used to complain on the 10 minute drive to the vets - we were pretty nervous before the drive. After that, she never complained going to the vet again. I used Feliway spray in her carrier and Rescue Remedy drops before we left.

Good numbers will help the peeing and walking.

 

[Bronx's dad (GA)]

Thank you Bronx dad.... Looks like the two of you have been through a lot. I hope the radiation works for Bronx's. I noticed you are trying alot of different supplements and meds. Have you found any that you would recommend. Does Bronx have neuropathy? Marvin does, it's severe, he is doing a bit better, with the zobaline and cosequin. Would you recommend looking into the trail even if you didn't see much results? Is it costly?

I agree with you about Wendy, she has been a real godsend for me too. Especially when I am feeling completely lost.

He doesn't walk on his hocks like neuropathy but I was giving him a Zobaline equivalent mistaken it for his arthritis (from the bony growth caused by the tumor). The golden paste (turmeric based) seems to help him walk better and got him off the drug Gaba which just made him tired. I recently started Yucca and am hoping this helps. (I am all about holistic/herbal approach for myself and for him). Bupe is another drug that helps is what I hear and that will be next if he gets worse. The Cabergoline was about $100 for 37 days at the initial dose, but doubled the dose towards the end. Dosage is based on body weight and Bronx is about 17lbs. He was trending lower at the end but was unsure if I should continue during & after the SRT and SRT vet here in NJ had no clue either. Very possible it was the Cabergoline working but have no way to tell. There were possible side effects that scared me. It is a drug made for female cats/dogs to end a pregnancy and supposed to be administered only once. But the trial started with humans with acromegaly and helped about 1/3rd of the patients. RVC is very helpful if you want to try it and will talk with your vet in Canada. You just have to find a vet willing to do it. If the SRT doesn't work, which is a slight possibility, I will go back to the Cabergoline as a last ditch effort but SRT can take months to work, fingers crossed!

 

[Marvin's Mom - Nat]

I think I will maybe look into Guelph University to see if they do it. I think the internist here did mention that they do. I may not be able to do it now, or even later but would be good to know approximate cost. Maybe have Marvin pick a lotto ticket too.... lol.....

I know I haven't posted his number today, he is still bouncing.... hoping it may break tonight or tomorrow. He seems to like to mess up my work day, and had issue with working remotely last minute last time (boss). I now know why you test at bed time, cause you may get a hint that morning numbers may need monitoring.

 

[Marvin's Mom - Nat]

He doesn't walk on his hocks like neuropathy but I was giving him a Zobaline equivalent mistaken it for his arthritis (from the bony growth caused by the tumor). The golden paste (turmeric based) seems to help him walk better and got him off the drug Gaba which just made him tired. I recently started Yuca and am hoping this helps. (I am all about holistic/herbal approach for myself and for him). Bupe is another drug that helps is what I hear and that will be next if he gets worse. The Cabergoline was about $100 for 37 days at the initial dose, but doubled the dose towards the end. Dosage is based on body weight and Bronx is about 17lbs. He was trending lower at the end but was unsure if I should continue during & after the SRT and SRT vet here in NJ had no clue either. Very possible it was the Cabergoline working but have no way to tell. There were possible side effects that scared me. It is a drug made for female cats/dogs to end a pregnancy and supposed to be administered only once. But the trial started with humans with acromegaly and helped about 1/3rd of the patients. RVC is very helpful if you want to try it and will talk with your vet in Canada. You just have to find a vet willing to do it. If the SRT doesn't work, which is a slight possibility, I will go back to the Cabergoline as a last ditch effort but SRT can take months to work, fingers crossed!

I may look into the tumeric paste, I think I saw some somewhere. I think I saw one of your old posts a few weeks ago. If I recall when you were looking into the trail, part of it was sending the blood work to the UK, and no one seemed to know how to address that. How did that turn out? Did they decide to simply start the trail, with out having to send the bloodwork or accepting you vet's blood work reports? Did they send you the meds or were you able to get it from a pharmacy in the states? sorry just curious, I maybe able to afford that, and since Marvin insulin dos is still fairly low, maybe it would work for him. I appreciate you insight. Thanks

 

[Adrian and Chino]

IAA - Negative, Insulin Growth Factor = 380 .... seem to recall that the number for acromegaly should be alot higher. does this number make sense?

Chino's original vet refused to believe it was acromegaly because his IGF-1 was 317 (under 1000) even though I sent him the conversion factors from the MSU website and calculated the value in ng/mL... 317 nmol/L divided by 0.131 = 2420 ng/mL. (380 nmol/L = 2900 ng/mL.) I finally took Chino to another vet who actually had experience with acro cats. The new vet was also OK with me following the TR protocol (I brought a copy of the spreadsheet to the first appt).

 

[Sharon14]

Oh Nat, sorry for the diagnosis, but, as the others have said, at least now you know and can proceed. You're in the best place to get info on treatments and care. Wendy is an amazing source of info! Hopefully Marvins neuropathy will improve as you get his numbers under control. Colin still has it, but he keeps going and is back to getting on the furniture (using pet stairs) I think I may try the cosequin and see if that helps too. @Bronx's dad let us know about the yucca, I use that along with MSM in the horses for inflammation/pain and it helps them. I saw Karen's post about the turmeric paste and may try that too.

 

[Bronx's dad (GA)]

I may look into the tumeric paste, I think I saw some somewhere. I think I saw one of your old posts a few weeks ago. If I recall when you were looking into the trail, part of it was sending the blood work to the UK, and no one seemed to know how to address that. How did that turn out? Did they decide to simply start the trail, with out having to send the bloodwork or accepting you vet's blood work reports? Did they send you the meds or were you able to get it from a pharmacy in the states? sorry just curious, I maybe able to afford that, and since Marvin insulin dos is still fairly low, maybe it would work for him. I appreciate you insight. Thanks

I got the Day 0 IGF1 test here in the US and didn't do it as often as RVC recommended since they agreed all the tests (like the Day 5 one) was unnecessary. My local vet was going to let her tech draw the blood (avoiding the vet visit charge) so each time would only be $110. I actually only got one test the whole time on Day 0. Since Bronx wasn't part of the official trial, I was just sending RVC updates via email as a courtesy. The internist vet who got me the prescription for Cabergoline was the one who told me I would have to continue the tests to see his progress. But I have learned the IGF# may not change much even if the insulin needs go down. The kitty who did very well on the trial who went from 4u to .5u still had a high IGF1. So basically if I was going to continue the trial, I would've just judged the results based on his insulin needs unless the internist vet insisted I get another IGF test. Here is a link to the thread about the trial and all the correspondence from Chris at RVC: http://www.felinediabetes.com/FDMB/threads/cabergoline-trial.172610/

 

[Glennie]

Nat, so sorry for Marvin's diagnosis. I know nothing about any of it, but I'm so glad there are people on here that can help. I'll be thinking of you and Marvin as you walk through this. My heart goes out to you.

 

[Kris & Teasel]

I'm so sorry you have this diagnosis. You're in the right place to get help from quite a few very experienced people.

 

[Marvin's Mom - Nat]

Thank you all for the wonderful support.

 

[Karen & Lily]

@Marvin's Mom - Nat , welcome to the acro world. Not a place you want to be with your kitty, but FDMB is the best possible place to get help, support, & love. My Lily is also an acro kitty. Her IGF-was 397 and she was negative for IAA. I haven't had the SRT done on Lily. She is being treated with a high dose of Lantus, currently at 48 units. The shots don't seem to sting Lily so far, but I have heard of other kitties switching to Levemir to avoid the sting. I also give Lily her shot while she is eating which probably distracts her from what I am doing! I also give Lily "golden paste" made with turmeric which she gets with each meal. So far she has not had any signs of arthritis pain or neuropathy and still can jump up on the furniture. @Wendy&Neko , @Doodles & Karen , @saltycat , and @Bronx's dad have all been very helpful and supportive. Don't be afraid to ask questions!!!

 

[saltycat]

Sorry to have to welcome you to the acro club. That feeling I got after getting the test results back was not something I want others to experience. Jack is a member of the acro club, he also has IAA. We were intouch with the RVC about the cabergoline trial and there were some miscommunications along the way. Long story short, if you decide to go the cabergoline route, send me a message.

If Marvin seems to be walking a little tender, definitely look into starting something for joint pain. I hear great things about Adequan but it is prescription and a series of shots. Cosequin is very affordable OTC medication I get off Amazon and has helped Jack walk better and make short hops up onto a couch or low bed. I cannot comment on the golden paste, I haven't used it.

Lantus is slightly acidic and when the dose gets larger some cats start to flinch a little from the sting. Levemir does not have that effect and could be a good switch if Marvin starts flinching during shot time.

He needs as much insulin as he needs to get regulated, like Paul mentioned there have been cats on well over 50u per shot, Lily is one of those. Jack is doing good in the 20u's range and a few others need even less.

 

[Wendy&Neko]

In Canada, we use Cartrophen instead of Adequan for arthritis. I would get ore filled syringes and do the injections at home. The vials of Cartophen are horribly expensive and expire before you could use a small part of it on a cat.