Ruxolitinib

[baggies]

Hi is anyone on ruxolitinib trial iam on hydrea but iam having problems with my feet like walking on stones i have been on hydrea 9 years consultant advise me to try and get on trial for this drug any lnformation thank you

[eire]

Hi, I've been on Rux with Panobinistat for just over 3 years. I was diagnosed with MF 7 years ago and went on this trial. They're not sure as yet if taking the Pan with the Rux is an additional benefit. I keep asking for some results as its a world wide trial but so far have not heard anything. Initially I was having weekly transfusions but gradually as my body got used to the drugs I now only need bloods every 6 to 8 weeks. I ended up having to stop work but as every nanny will tel you think I work harder now just all unpaid!!!!!! I'm 65 now and am doing great I lead a very busy life and the few people who know I'm ' ill ' find it hard to believe as I look well. If I do get a tired under the weather day I just take it easy. I eat well, drink plenty of water and walk with my dog!!! I can only speak very positively about this trial. I spoke in depth to a clinical trial nurse prior to agreeing to the trial they are the same nurses I see to this day. My hosp visits are x 3 months now as I'm doing so well I have to travel for 3 1/2 hours to get to the hosp so am delighted. My haem in my local hosp recommended me for the trial but unfortunately they can only be a support I have to go to Dublin for the drugs and check ups. Hope I've helped you any questions i'll do my best to answer. My advice would be to definitely look into it you don't have to make a decision immediately.

Good luck Pat.

[baggies in reply to eire]

Tthank you for your messages i have t o go to heartlands hospital birmingham on wensday will let you how i get on

[daibare72]

Hello baggies...The medication Ruxolitinib is produced by Incyte in Delaware, USA and goes under the brand name of Jakafi, a JAK2 signal pathway inhibitor. This medication gained FDA approval several years ago and is no longer a trial medication, at least in the United States (I'm from the state of Wisconsin) Not sure how FDA approvals work overseas. You can go to incyte.com to read up on the medication and its applications. Good Luck to you.

[beetle]

Hi, Baggies. If you are in UK Ruxolitinib on its own is no longer a trial drug. I live in Scotland where it can now be prescribed by any haematologist but the same does not apply in the rest of the U.K. I believe that NICE, the body that approves medicines for use in UK (except Scotland) is taking another look at Ruxoloitinib after turning it down a couple of years ago on cost grounds. My understanding is that it can still be obtained through the Cancer Drugs Fund although I don't know how easy even that is at the moment. Maz might be able to point you in the direction of other trials that may be recruiting at present involving Ruxolitinib plus another drug as MPNs are apparently finding ways to defeat Ruxolitinib in some cases.

I have been on it for nearly 3years and it is better for me than Hydrea but I have to say I'm hoping for the next drug to come along very soon. I have Post ET Myelofibrosis and do not qualify for stem cell transplant

I hope that information is of some use to you. Best wishes,

Jan

[JSKly]

Hello, Baggies,

I have PV diagnosed in 1999. I am on a ruxolitinib trial in Gloucestershire. I was on Hydroxycarbamide for about 12 years, maybe more. When HU ceased working against the rising platelets and increasing dosage caused too many other problems I tried anagrelide. I didn't do well on it. Felt like a zombie. I was lucky enough to be accepted onto this trial. Ruxolitinib has certainly done well with my platelets but has hammered my HGB. I find it easy to take and haven't noticed any other side effects except from very low red count.

Very best wishes. Let us know how you go with it.

Cheri

[jillydabrat]

Hi luv, you don't specify what condition you have but as a patient with Jak2+ PV I can tell you that the walking on stones feeling is one of the symptoms of the condition, not the meds. I never was sure where I was putting my feet as I felt my feet were wrapped in thick, hot sponge which is very disorientating. Hope you find your answer from all these fab folks, xx