New drug trial at the RVC for cats with acromegaly

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Wendy&Neko

Wendy&Neko

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The Royal Veterinary College in London, England is at the forefront of research on cats with acromegaly (acrocats). They have done more hypophysectomies (pituitary removal surgeries) than anywhere else. They just hit their 50 milestone. Although that procedure is the gold standard for treatment, the procedure is rather expensive and available only to those folks located near them. In their hope to find a solution available for more cats, they have been researching medical (drug) solutions. The first, pasireotide, has success with some cats going into diabetic remission, but the drug is very expensive. As a side note, I explored the cost in Canada last year and it would cost me $5000 for a 3 months supply. :eek:

They are now starting another drug trial and are looking for acrocats near them to participate. The drug they are testing, carbergoline, is much more affortable and likely available through vets as it is used to terminate pregancies in cats. Anyone interested can contact them at: fdrc@rvc.ac.uk Here is the poster they have on the FB page.

They want to recruit cats with confirmed acromegaly which means IGF-1 testing and an advanced imaging scan confirming a pituitary mass. The trial will measure IGF-1 at the beginning of the trial, days 5 and 35. The medication is given once daily by mouth. Frequent blood sugar testing will be required. And of course your vet will be on board with the trial. Their preference is for cats near them, but may be open to including other cats who are struggling with this condition.

My acrogirl Neko has enough on her plate at the moment that I am not considering it for her, but I really hope they can someday soon find a solution.
@suki & crystal (GA) and others, please spread the word.
 
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@Wendy&Neko thank you Wendy for tagging me, I too am happy to support any initiative that might help alleviate the suffering our acrokitties have to go through. The RVC do wonderful research and I hope this new trial brings some good results that will benefit any cat with acromegaly in the future, it really is a horrible disease. I shall certainly pass on the info to my vet, now that she has had first hand experience of seeing the pain it causes.
 
Thank you for posting this Wendy. I hope their research is fruitful for future cats with Acro. I'm taking Leo the route of SRT starting 9/19/2016.
 
I just found out that even though RVC is in London, England, they are accepting cats from here in the United States for the trial.
 
Yes, they did tell me they would consider cats from elsewhere. But Neko's got so much going right now and there is a possible side effect of the drug that impacts the heart so I ruled it out for her. The issue with the trial is that the turn around time for IGF-1 testing is slower in the US, but they were open to working with that on their test schedule.

Let us know if you are going ahead with the trial. All paws, toes, fingers crossed for this!
 
Just come back from the RVC as Louie is hopefully going on to the Exanatide research trial, however, after a series of tests and histology the vet thinks he may be acro. We have to wait for the results to come back and then if they are positive he will go back for a CT scan to confirm absolutely as they can show false positives. If he is positive his options will be discussed and if it's possible he will go onto the acro trial instead. I'll keep you up to date on progress but just wanted to say what fantastic work they are doing and how happy I am to have taken him. He was only diagnosed with DM a week ago and there is no way my own vet would have even been discussing Acro yet and none of this has cost me a penny yet.
 
I would love to hear any updates on the trial. They are doing amazing work at RVC. Good luck with Louie's diagnosis. So true that most regular vets wouldn't even be thinking acro until many months into the diabetes treatment.
 
Spoke to the vet at the Royal Veterinary College this evening and Louie's IGF-1 has come back positive so we're certain given his symptoms as well that he has acromegaly. She loosely discussed options, surgical removal/the expensive drug I can't spell/joining the trial. He'll go for a CT scan and, unfortunatly, to be signed off the Exanatide reaserch trial as he no longer qualifies, in early January and then, depending on how far advanced it is, we'll decide on the best course of action to take. I did his first curve today and it looks like he is responding to even a low dose of insulin so that may be a good sign. If the tumour, or as we are now calling it 'Gary the Growth', is small and not too advanced I would really like to go on the trial. The drug they are using doesn't seem to be working as quickly as the expensive one does but it's very early days. The cost difference between the two drugs is enormous - the existing expensive one costs, in the UK, around £3200 a year whereas the trial drug costs around £360 a year so fingers crossed for a good outcome. There is little difference between the cost of surgery and a years worth of the expensive drug treatment so a decision will have to be made based on risk if he cannot join the trial. There are very few cats (I think she said only a couple) on the trial so I would encourage anyone who has an eligible kitty to consider it.

The positives I take from this are that 'Gary the Growth' has been diagnosed super early and that the clinical lead in Louie's treatment will be Dr Stijn Niessen who is the worlds leading expert on acromegaly. I'll keep you updated on what is happening and hopefully he will be ok for the trial
 
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Hi Larry

I haven't got the figure but I'll find out from Katarina who's his vet carer and post it under that thread when I speak to her. It would be interesting to see if there is any correlation between the figure, his symptoms and the size of the tumour. Dr Stijn Niessen who's the clinical lead at the RVC and world expert on acromegaly has put a video up on their Facebook page today taking about it and the work they are doing. Looks like they've isolated the gene that causes it and want to progress to finding a treatment to prevent it. I know they are also working with human acromegaly experts at hospitals in London ok n as the disease is very similar to how it progresses in humans so this research is not just going to help felines but also hopefully humans.
 
Very interesting information Rebecca! I'll be popping over to their FB page shortly. When I talked to the folks at Colorado State University who did Neko's stereostatic radiation therapy for her acromegaly, they said that in their experience, the IGF-1 number had nothing to do with the size of the tumour. And just before Neko went for her SRT, two other kitties from FDMB went in for SRT. Both of them had significantly lower IGF-1 numbers than Neko, and both had much larger tumours on the CT scan.

BTW - The North American IGF-1 numbers use a different scale than those in the UK, so keep that in mind when you look at the thread Larry posted. Most of us posting regularly lately have not posted their IGF-1 numbers to that link, but it'll give you an idea of ranges.

Tagging @saltycat who's cat Jack is also going to be entering the drug trial next year.
 
Hi Wendy, first of all I'm so sorry to hear of Neko's passing, I know it was time but it never gets any easier :bighug:. I guess we won't really know how the land really lies until he has the CT. He's been dx unusually early on so it will be imteresting to see if that makes any difference to treatment or the outcome. The RVC doesn't offer SRT presumably because they have the facilities to offer the surgery. I'm in touch with someone whose cat had the surgery to remove the pituatary at the RVC last year. Her boy still has some mobility and weight issues but the diabetes has completely gone (he was on 18units of Prozinc a day), he's no longer going crazy for food and has a much improved quality of life. He went undiagnosed for at least 18 months. It's good to get the experiences of people who have gone through different types of treatment in order to try and decide how best to proceed. The surgery seems the most complete solution obviously but financially it's horrendous (thank God Louie has insurance but it won't cover it all) , the risks are obviously much greater than alternatives and he will have to have daily hormone treatment to compensate for the loss of the pituatary. The very expensive medication has less risk but costs, for one year, almost the same as the surgery plus the diabetes is unlikely to go into remission so he will still need insulin, financially it doesn't make sense so it's down to risk. The trial drug is 90% cheaper over the year than the expensive drug, again, if it's successful, it's unlikely to put the diabetes into remission and of course no one knows whether it's going to work. We of course could have the surgery after the trial if the medication didn't work but then the acro could have progressed and the post surgery prognosis may not be as good. This Christmas is going to be one of deep contemplation :banghead::arghh:
 
I priced out the pasireotide (expensive drug) in Canada last year, and it was a ridiculous cost. Over $1000 a month. Surgery is only available in a couple locations in North America, and the surgeons do not have any of the experience of RVC. I've heard of a couple of cats who had the surgery here and both had complications. So, in North America the current solution seems to be travelling ot a place that does radiation therapy. Which is why the drug trial is so exciting. Neko lived with acromegaly for five years, which is a relatively long period of time. Her insulin dose got below 1 unit, which I was quite happy with. But in the end, the SRT did not completely stop the growth hormone side effects, just slowed them down.:( After SRT started to work she wasn't as crazy for food, though still a good appetite as she did from year one. Arthritis was the worst of her acro side effects until recently.

The experience with cats who have had SRT is that the earlier into diagnosis that they have the treatment the better. Paws crossed the same goes for Louie and his treatment.
 
Update on Louie - he had a CT scan at the RVC on 5th Jan which initially looked like he didn't have a tumour on his pituitary :arghh: because of this they immediately did another IGF. The results took 2 weeks to get back but I think that was more to do with the behind the scenes discussions between neurologist and radiologist on CT scan findings. The IGF result came back higher than the first one (over 2000) and the neurologist has said, on closer inspection of the CT, that he can see a very small lesion on the pituitary. It seems IGF results and acro symptoms do not correlate to the size of the tumour but to how active it is and that even in the first signs of abnormal cells it can cause extremely high values. Louie has beeen caught in the earliest stages they have ever seen in terms of cell activity. He was only diagnosed with diabetes on 28th November last year so only 2 months ago tomorrow. We have considered all our options and given the size of the tumour/abnormal cells and the effect this will have on the success rate of surgery we have decided to go for a hypophysectomy. He is being admitted to the Royal Veterinary College, Queen Mother Hospital for Small Animals on 3rd Feb, a week today, and will have the surgery on Feb 6th :nailbiting:. The estimate for the cost is £6000, £3895 will be paid by the pet insurance company. I've spoken to the insrance company today and they have said that the estimates are normally quite exaggerated and they have seen the surgery come in at as 'little' as £3000 - £4000. He will be in the best hands and have the best care in the world but brain surgery is brain surgey and I am panicking slightly, well more than slightly.
 
Thanks for the update Rebecca. I wish you and Louis the very best with the surgery. I am so glad you'll get some coverage from insurance which makes you able to consider it. It really is the gold standard of treatment. Keep us updated. He will be in good hands. :bighug: I had briefly considered getting it done here (Washington State) but the level of experience is no where near what it is in RVC.

As for the CT scan, Colorado State University folks told me they's seen a number of acros that didn't have a tumour show on the CT scan, so they had to do MRI as follow up. Their quote usually includes the cost of MRI in case they have to do that too. Thankfully they didn't either time for us.

Did you hear an update on the drug trial while you were there?
 
Hi @Wendy&Neko I think they are really struggling for candidates for the trial. Hopefully it will pick up but you've got to get vets to recognise that acro is not rare in diabetic cats. The latest figures show that around 30% of sugar kitties have acro. I don't think it will be long before the idea of doing an IGF-1 test as standard when diabetes is diagnosed starts to be thrown about. If it's caught early enough treating it is easier. The cats they do get on the trial are at such a point where you wonder whether a less effective drug will have much of an impact anyway so what are you measuring. The drug is aimed at cats that aren't insured and whose owners can't afford pasireotide or surgery but they are coming through as a last resort rather than to actively trying to reduce the tumour or activity of it. It's a bit of a catch 22 situation. Knowing what I know now I can honestly say that I would demand and pay myself for an IGF-1 test on any cat I had that was newly diagnosed with diabetes. Yes it's an expensive test but it's something that should be influencing treatment from the word go. I'll ask them when he goes in if they've had any success at all.

We paid for the CT out of our own pocket knowing that it was highly unlikely he didn't have a tumour and that the surgery would completely swallow up our remaining insurance limit. They did discuss maybe doing an MRI but deemed it unnecessary in the end due to the highly suspicious lesion on his pituitary and the IGF-1 result. The MRI would have been another £1700 and we said that if he did have to have an MRI we would not be able to do the surgery until July when his insurance limit reset. Luckily they've decided they don't need it. From taking to someone whose cat had the surgery at the RVC a couple of years ago it is the post op care that costs the most, he will have to stay in for up to 2 weeks afterwards and some of that will be in intensive care.
 
Thanks for bumping this thread up, I just contacted RVC. Hopefully they are still doing this trial and will respond. Any idea of the costs? So far only test I have done is for IGF-1 & IAA. Looks like first step is a CT to see if tumor is present before Bronx can participate. Any news if other acrocats have responded positively to the trial drug? I tried to join the acro FB page, but was never accepted.
 
Step one is getting your vet buy-in to being a part of the trial. The main costs are those associated with getting the blood send to the UK for the IGF-1 tests. Wes @saltycat is part way through the process. He has priced out the drug costs. I don't think he needed to have a CT scan to confirm - as Jack's dose pretty much says acromegaly.

I think that there will be people not in the UK interested in participating in the trial. In the UK people have the option of getting the hypophysectomy, which is the gold standard of treatment. A drug solution is ideal for those who cannot travel elsewhere for treatment, and pasireotide is so expensive you could pay for a flight to the UK and the surgery and probably be ahead of the costs of pasireotide for a year.
 
Rebecca Thomas said:
As I understand it the cat should be diagnosed with acromegaly. If your vet or yourself contact the RVC by email at fdrc@rvc.ac.uk they will be able to tell you exactly what they require.
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LOL. I have gotten so many different answers it makes my head spin. First it was samples had to be sent on dry ice, then it was room temp is fine. Shipping assistance was available, then it turns out it is not since it is not a funded study. A cat/mri scan was needed to verify the tumor, now it is just recommended but not needed. The lack of clarity has been frustrating.

From the latest reply
If the cost of shipping is too much then you could continue to trial cabergoline and still use the monitoring suggested below and use USA laboratories to run the tests. I will still be very happy to find out whether there is an improvement in IGF-1 and fructosamine levels.
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Info on IGF measurements they are using:
There are some labs that offer “free IGF-1” levels (a fraction of IGF-1 can be free floating in the blood while others are protein bound, and it is the free non-protein bound IGF-1 which is the active form of it) which requires specific sample handling such as being frozen. We offer “total IGF-1” which does not need to be sent frozen but can be sent at room temperature. IGF-1 and fructosamine are quite stable so as long as we get them with 7 days we can process them
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The problem with that for me is now we are sending out 2 samples to 2 different labs. It looks like if I can ship the samples at room temp, the cost is much more affordable, but trying to figure out what UK customs requires for shipping bloodwork from US to UK is proving challenging and my vet has no clue on how to accomplish it. I have the cabergoline, but am stuck figuring out shipping right now.
 
I'm afraid I can't help. It's the RVC who are doing the trial. It maybe that you are the first person from oversees to try and get on the trial and therefore they are working out the best way to do it. Please also be aware that the RVC is and academic institution and, unless the trial is being funded by the UK government which would mean that you wouldn't be eligible for it at all, they are relying on charitable donations to fund both themselves and their research so financially it is very difficult for them.

I had to have bloodwork sent over to TMU from the UK a few years ago when they were the only ones who could do the pLI test (same situation part of research trial) I had to pay for everything myself and it was my own vet that sorted out the shipping details, not me or TMU, although I did have to pay for it myself.
 
@Rebecca Thomas
Sorry if it sounded like I was directing any of that your way. I knew upfront I would be covering a lot of the costs, including the medication. I appreciate all the work that the RVC does. My vet has kind of given up and said if I figure it out she will do the blood draw and hand me the tubes to mail. I've been in contact with Chris at the RVC and we have had numerous discussions. It has just been more difficult then I originally anticipated to get the trial underway for my acroboy.

I hope the surgery for Louie goes smooth and he has a speedy recovery.
 
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