Cabergoline trial

Here is the letter from RVC in response to my inquiry about Bronx participating. However, why can't I just get my vet to prescribe cabergoline and do the testing here and then forward the results to RVC for their data collection?

"Hi Paul,

The trial for patients outside the UK is to offer to cover the cost of some of the monitoring while acromegalic cats trial cabergoline. We are recommending cats either receive 5 ug/kg or 10 ug/kg cabergoline once daily by mouth. We offer to cover the cost of running fructosamine and IGF-1 measurements at time points day 1, day 5, month 1, 3 and 6. We cannot cover the cost of any charges your vet may have for blood collection or postage (the samples need to be sent to our laboratory, see attachment). If this means to end up losing money on postage compared to the cost of running these tests in the USA, then you could try to medication and perform the monitoring all with your local vets. I am happy to discuss this further with your local vet if you would like me to.

The main possible side effects of cabergoline are gastrointestinal (diarrhea, vomiting or reduced appetite), other side effects include increased insulin sensitivity and risk of low blood glucose if insulin is given without appropriate monitoring, ,mild sedation, and rare cases of excitability, fine muscle tremors and seizures have been reported, abortion in pregnant cats and dogs (the drug should not be handled by pregnant women), very rare cases of allergic reactions have occurred, such as swelling of the face or limbs, skin reddening and itching.

Please get in touch if you would like any further information.

Best wishes,
Chris

 

Since you are doing home blood testing, you do not need to do the fructomsamine test, just the IGF-1 tests. Wes @saltycat got the cabergoline compounded through his vet. The main outlay of costs for you will be repeated IGF-1 tests. RVC are willing to cover the cost of the test itself, but you have to pay for shipping to them. RVC are a research university, so do not have extra funds to pay for mailing.

 

Besides the seizure side effect which is scary, I don't see why Bronx shouldn't start taking cabergoline and just have MSU do the tests. I paid $222 which is mainly shipping since MSU charges less that $20 for the test. It will probably cost way more to ship frozen blood across the pond. But maybe RVC will not accept the MSU results? Either way, I wonder if any other cats have had positive results from taking cabergoline?

 

Excellent questions for the RVC. Wes @saltycat has explored some of the mailing costs.

 

If you go forward with the treatment, I would be very interested in seeing updates here. Thanks for posting it.

 

I am going to start if my vet is willing to prescribe and I think he won't have a problem with it. Just not sure about the dosage, RVC says 5kg or 10kg per day? That is a big difference. Vet will probably recommend starting at 5kg, just hope it isn't very expensive.

 

This list of side effects is very different from the one I received.

Between potential seizures and scarring of vital organs, it would be nice to know a bit more about the frequency of these side effects since the medication is typically a one dose kind of thing for terminating pregnancy and not a long-term medication.

I was given the impression they still wanted a fructosamine test even for home tested cats since that is one metric they are using to gauge effectiveness of the treatment.

From what I can tell, it is kind of a wash shipping wise. Chris gave some info about IGF-1 testing and there are a few different ways to test it. MSU needs refrigerated/frozen samples which means expedited shipping and extra packing material. I don't think they do a fructosamine test either. The last time I spoke with my vet, it meant taking 2 samples and sending one to antech for fructosamine, and another sample to MSU. It was about $225 just to get the IGF-1 and IAA tests done at MSU.

RVC said the samples can be shipped at room temp, as long as they arrive with 7 days. The estimated cost of shipping usps was around $70. The roadblock I am at right now is what customs declarations do I need / packing requirements for send non-infectious blood samples from US to UK.

The dose I was quoted was 5 micrograms / Kg to start out and if the patient does not show improvement an increase in dose would be considered. A 30 microgram / ml bottle from Diamondback drugs was $250. That would be a one month supply...

My biggest disappointment was the hint in an email that they had not seen much decrease in insulin requirements early on. This could just be similiar to SRT treatment where it takes some time for the tumor to start dying and slowing the release of the GH and IGF-1.

ETA: Chris response on USA testing:

 

Seems they are seeing more side effects as the trial progresses, would love to see the actual results to date with each cat. How long has this trial been going on?

 

Pretty exciting to have another option for treating acro kitties - I'll be following to see how things go with that drug.

 

We are starting the Cabergoline next week. My vet is allowing us to try it on one condition, that I get IGF-1 tests as RVC recommends. Do you think I should get a starting IGF-1# on about the day he starts or can I assume he is probably at about the same 434 he was on 12/16? Thanks!

 

Maybe a question for RVC? The IGF-1 number may be different but I don't know if significantly so. Few of us have retested the IGF-1 cause it doesn't gain us anything. Some retested after SRT, but CSU told me not to bother.

ETA: very exciting on starting the trial. The science geek in me will love to watch how it goes.

 

That is great news. I look forward to Bronx's progress and improved health.

 

The RVC had outlined to me that they wanted a baseline IGF-1 reading on day 0, then start cabergoline on day 1. They then wanted another test at day 5 and day 30. After that they would review the IGF-1 numbers and possibly increase the dose.

 

Yeah, I see they want all those tests. I am hoping too use his insulin resistance as a sign instead of so many IGF-1 tests at $222 a pop. I will shop around to see if another vet may charge less, current vet said it's fine if I use another vet, as long as I do the tests. Adrian paid about half of that for her IGF-1 test. Not sure if vet will enforce the day 0 or day 5. They said I will be getting one renewal script, so we should be good for about 2.5 months.

 

The RVC will do the tests for free, shipping was reasonable to the U.K. But no one can tell me what customs declarations or forms I need for non-infectious blood samples being sent overseas. MSU does a different IGF-1 test that requires more expensive shipping since they need chilled samples, versus room temp for RVC. RVC also wanted fructosamine tests which meant if I went the MSU route I would have to send another sample to Antech or Idexx for fructosamine. It started getting expensive quick adding that plus at least $250 a month for the cabergoline. Not to mention Lev costs at the doses our cats are getting.

My vet gave up and said she would do the blood draw, hand me the tubes and I was on my own after that.

 

I know Jack is a big guy but $250/mo seems high. I am not sure of the dosage on the script, but was told about $95 for 37 days worth and Bronx is 17lbs. I think they said 40 or 45ug/day?

 

Jack's been slimming down, only about 14lb these days. 30mcg/ml, 30ml bottle from diamondback was $250. He would need about 32mcg per day. This was through the vet. They said they would call it in and have me deal with payment and shipping, but ended up ordering it themselves. I know they would have marked it up a bit, but I sure hope it wasn't 100%+ markup or they got some explaining to do.

The starting dose for the trial was 5mcg/kg, so Bronx would need a hair under 40mcg to start.

 

Good luck, Paul!
Will be watching with interest...

 

Hi all, just wanted to give an update. 3/9/17 got blood drawn for an IGF-1 "day 0" starting point. It will be interesting to see if the # has changed much from the 434 on 12/16/16 (I have been trying Ellagic Acid as a holistic approach since 1/4/17). Yesterday, on 3/10/17, we started Cabergoline 0.4mL 1x/day in liquid form. I do not plan on doing a "day 5" IGF test as RVC recommended but will do a "day 30". I will post his IGF result which probably won't be for 10 days or so. So far no negative side effects, but today is only day 2.

 

Good luck with the trial. I will definitely be checking in to see how things are going.

I noticed you also started gabapentin and lactulose the last couple of days too. That's a lot of new stuff to start at once. I used to try just one new thing a week. I hope the gaba works for you - it just made Neko sleepy and did nothing for her pain, but ECID. I've heard it works well for some acros.

 

I have to try something, he walks very gingerly with a hunchback now and can't go far w/o sitting or laying down. I hope the gaba helps. What about cannabis options?

 

I would try a week long trial of gaba and see if it helps. I know there is a range of doses, so it it's not helping, maybe the vet can suggest if a higher dose would be worth a trial. After than I would try a buprenorphine trial. There are other things you can give to help with arthritis, which is what it sounds like he has. Neko had it too. You can give things to help with inflammation (fish oil, Duralactin), or help the joints themselves (Adequan is common in the US, hyaluronic acid, or glucosamine condroitin). For pain, Neko also got regular acupuncture which helped her mobility quite a bit. And the acupuncture vet showed me how to do acupressure which I did daily to supplement. Since Bronx is walking gingerly, it sounds like more serious arthritis, I might try something for inflammation and the joints as well as pain relief. It's ECID what works for each cat. Duralactin worked well for Neko, though I also gave her fish oil. She got the Canadian equivalent of Adequan, as does my civie who has a little bit of arthritis.

 

Hi there,
I used Adequan for my GA Buster, he developed arthritis early on. I also in later years used Zeel injections prescribed by my homeo vet. Those made a huge difference in his QOL with regard to arthritis. His was in his lower spine primarily and in his knees. I did the Zeel injections subQ at home. He never complained so I don't think they hurt at all. (He had been RX metacam which he adored the taste of but I wouldn't give once I knew the hazards, the Zeel seemed to work every bit as well for him at least). He also got accupuncture periodically.
I used the Cannibis drops with Gussie, seemed to really help with his pain, don't know how it would affect arthritis in a cat but hear it works for humans in that dept...
Just a couple of things I can throw out there.

 

Learned that there are 6 cats on the trial being monitored by the RVC. Cabergoline dosage: 3 cats on 5ug/kg 1x/day, 3 on 10ug/kg 1x/day. Only 1 of the 6 cats has shown improvement and she is on 10ug/kg. Was at 4u PZI every 12hrs and now at 0.5u. Day 1 IGF1 was 1000 ng/mL. Been on Cabergoline for 8 weeks, IGF1# not much change.

Bronx's trial:
3/10/17 (Day 1) started Cabergoline at 5ug/kg 1x/day. IGF1: 405, Levemir at 30u/12hrs
4/6/17 (Day 28) increased Cabergoline to 10ug/kg 1x/day as per vet's recommendation since Bronx is now at 36u Levemir every 12hrs.

 

Nice details on the update, I had no idea they only had 6 cats in the trial. Not so nice that only 1 is showing improvement so far. Hopefully Bronx's IGF-1 is coming down a bit on the 5ug and will do even better on the 10ug, keep us updated when you get the results back from MSU.

Has Bronx shown any of the potential side effects?

 

No side effects other than maybe sleeping even more than he was. I may wait a bit to do another IGF1 test since we just started double dosage yesterday. If his insulin resistance goes down for an extended time, then I will get a test. Here is the last I heard from Chris at RVC: " I am beginning to suspect that cabergoline may work best for those with mild disease and mild insulin resistance but only more information / data will confirm or deny that."

I have scheduled a CT scan at the SRT place in NJ, might go that route if no improvement in the next couple weeks.

 

Did they say what the breakdown of male vs. female cats was on the trial? Just curious, as cabergoline was a drug given to female kitties. I wonder what they mean by "mild disease and mild insulin resistance".

I hope you start seeing some downward movement soon.

 

I saw your question here in Chuck's condo from yesterday, and rather than bump up the old thread thought I'd answer here. Here are some links below from the "Where Can I Find?" thread about digestive woes. I was the person who told StephG about the S. Boulardii. I have a civvie, McGee, a short-haired tuxedo cat about 4 years old. He was vomiting pretty much daily and I assumed it was hairballs. He was also extremely constipated. Always. Then Wendy and Marje shared the links below about chronic vomiting and probiotics.

I started McGee on probiotics. We bought the Renew Ultimate Colon Care (90,000 colony forming units) - I took 1 capsule and divided it up among my 3 cats each day. I gradually increased the amount, focusing on just McGee and Anya (another civvie who used to have chronic diarrhea) until McGee was getting one capsule alone, each day. I open up the capsules and mix with his food. He got that therapeutic dose (1 capsule per day) for 2 months, then I gradually decreased it. Now he gets 1 30,000 CFU (still Renew Ultimate brand) daily as a maintenance dose. I've noticed if I miss a day or two he'll vomit. If I get it to him daily, no vomit. He must have slow gut motility - causing both the vomiting and the constipation. It's been an amazing transformation.

He also gets a pinch of ground flaxseed (people quality) every day - the amount also was started very small, just a few grains, then increased until it seems to be the right amount to have pretty well eliminated the constipation. It's less than a measurable amount, but I worked up to it and recognize it as the right amount. The amount I can pinch - I'm sure it's less than 1/8 tsp.

I buy the probiotics at a local health-food type store, but I've seen Renew Ultimate at lots of stores and online. I also bought S. Boulardii - as I told Steph, my youngest daughter has been on multiple antibiotics simultaneously for 2 years because she has Lyme disease. She had one bout of C. Diff, but then we discovered S. Boulardii and since then (more than 1 year since the C. Diff) she hasn't had any recurrences of C. Diff. Once you've had it you are more likely to have it again, but the S. Boulardii has prevented it. The stuff is a miracle in the Lyme world because it is so hard to be able to take continuous antibiotics. Anyway, there are "stop diarrhea" directions on the link about probiotics in IBD cats. Wish I'd known of it when Punkin got C. Diff after taking Clindamycin for a post-dental infection. We buy Jarrow brand.

Digestive Problems:
Constipation, Maggie11 & Ann; Feline Constipation
Hairballs/Chronic Vomiting
Probiotics in IBD (or other) cats
Antacids (Pepcid)

Anyway, hope some of that helps answer your question and gives one example of how to use it in a cat. The Probiotics in IBD cats link has directions as well.

 

@julie & punkin (ga) Thanks for that great info Julie. I guess I will ditch the pet probiotics and give him the same one I am taking (RenewLife Ultimate Flora 50billion). And I also have plenty of ground flaxseed which I eat every day and will start adding a little of that to his food. I guess I should start with 1/2 capsule 1x/day of the RenewLife? Bronx is a big boy, about 17lbs.

 

I don't know that the dose would be size-related, but I started with about 1/3 of a capsule once a day, so that seems reasonable. Go slow with the flaxseed too - starting small and working up. My tuxedo boy had really silky short hair to begin with, but now it's thick and luxurious. Let me know how it works out for Bronx.

 

Good update on the new treatment. I too - hope that his dose goes down soon. If it doesn't then SRT is pretty much in his future if you can afford it. Poor Bronx.

 

Just got an email back since I was inquiring if Bronx should be weened off Cabergoline because he is going under for a CT scan in a few days so also asked about male/female ratio. He said 5 of the 6 cats are male. So that is interesting, only cat responding well is the only female on the trial.

 

Hmm, no idea if it's relevant or not that the female cat is reponding, but with a small sample size it's hard to tell. For a while here, it seemed like most of our acros were female, but now the balance has changed.

Where is Bronx getting his CT scan? Good luck with it and let us know how it goes. Is that for SRT planning?

 

Thanks! Red Bank Vet Hospital in Tinton Falls, NJ, only an hour away & is for the SRT planning. It was recommended I wait until the new machine is ready to go which will be 1st week in May. Dr Dustin Lewis will be performing the treatments, he did his residency in oncology at CSU and said the new machine is one he trained on, so I think it is the same one used at CSU.

http://www.rbvh.net/staff/staff.html/s/44/Dustin-Lewis-DVM-Diplomate-ACVR-(Radiation-Oncology)

 

Nice that a new SRT machine is coming online so close to you. A trip to Colorado would be a hike! Hope everything goes good with the scans and the doc performing the treatment. Bummer on the cabergoline, interesting that the cat responding is female, but like Wendy mentioned, with that sample size it is hard to make any conclusions from it.

 

They told me to cut his food by 1/2 and also lower insulin by 1/2 on day of CT scan, do I really need to cut the Levemir by a half? He will be eating and getting insulin around 8a, CT scan will prob be around 12noon or 1:00p the latest.

 

I would follow their directions, mainly because if that is what they are used to and expecting, I'd want to work within their guidelines. I would make sure that they know that you're giving Levemir, because its action is going to be different than if Bronx were getting ProZinc, for example. If he gets his shot at 8am, at +4 his Levemir will just be beginning to onset, unlike if he were getting ProZinc it would most likely be near the nadir.

 

I too would follow their directions on dosing. Some types of anesthesia lower the blood sugar, and some cats (especially long haired black and white girls), like to do the BG dive at the vets. I wasn't able to give food past midnight the night before, so half food is good! And you do have R in your tool kit.

I would also ask when they'll monitor the blood sugar, following on Julie's comments, and get the test results later. It'll probably be in AT numbers. The info may help you for the subsequent anesthesia days. And take along some of his food, so they can give him something appropriate for diabetics when he comes to.

Dr. Lewis was at CSU when we went there. He's got a great resume. Take your camera - they may give you a tour after.

 

Bronx does seem to have lower #'s when I test him after a vet visit. I assume they will give him half doses the entire 5 days during the treatments. I'll know a lot more after meeting Dr Lewis on Tuesday for the CT scan, what questions should I ask?

 

I would ask if there will be a board certified anesthiologist during the procedure. During Neko's second SRT, she had a heart block incident during the anesthesia for the CT scan. I presume there is a cardiologist there if you need it. Growth hormone damage to the heart can be a concern so you want to make sure all your bases are covered. See if they can give you his blood pressure readings - a good thing to know in the future.

Also ask about any short term side effects you might see, how to spot them and how to treat them, especially since you'll be an hour away afterwards. At CSU I was 5-10 minutes away and had the IM vet's cell phone number, just in case. But there may be meds you might want to have at hand, just in case. Longer term, what symptoms would they expect to get better. What are their recommendations for long term vet care, ie. how often bloodwork, urinalysis/culture. And most important, can you email them with follow on questions you think of later.

 

Thanks for the great info Wendy, will ask all those questions! I will actually be away during the 5-day treatments so Bronx will be boarded there which isn't a bad thing since I was stressing on who would give him his injections if he was home that week that I am away. But it is also not a good thing since if something happens, I am a 2hr plane flight away. The heart thing does concern me but I am sure Dr Lewis has dealt with many acro kitties, will know much more tomorrow. Thanks again!

 

That is good news. The CSU personnel really know their stuff, so I'm sure it was good training.

You can re-read Leo's thread or ask me any questions. Basically Leo got under-dosed during his SRT treatment week. It wasn't great but there was no hypo risk. He really got fried from the multiple anesthesias, but recovered a couple days after the last treatment day.

The SRT is a good treatment. Leo's low doses are now 5.0-6.0. He may never get OTJ, but these levels are more manageable AND we are confident that we have greatly extended the life of our sweet kitty.

 

I hope Bronx responds as well as Leo, how big was his tumor? Have the acro conditions improved? Bronx's arthritis has gotten really bad over the last month or so and am hoping this will improve once the tumor is zapped. His QOL is not good at all now and I have made the decision based on the hope that he will get back to himself somewhat.

 

Leo's tumor from what they told me is listed below. Yes I know there should be a 3rd value for 3D. They said it was 4-5x the normal volume.
normal = 3mm x 5mm
Leo = 5mm x 10mm

All of his Acro conditions have improved. Almost no neuropathy, less hunger, more active and mobile, less insulin needed, less urination. Since he is less focused on food, he exhibits other pre-acro behavior. For example, he plays more and is interested in us and the other cats. His quality of life is drastically improved and he is almost pre-acro on all behaviors. His esophagus issue has cleared to some degree, so his breathing is better and snoring is decreased. His abdomen is still enlarged as is his head. But we caught the Acro early.

He is not 100%. But during Acro, his neuropathy got so bad we were considering the big decision. Now he can climb and run again. The CSU specialists said the mean extension is 300 days. But Janet or Wendy told me that is mostly applicable to older cats. We are hoping Leo (age 10.75) can live to be 15-18. I brush him 3 - 6 times a day...so maybe that will extend his life too!