Can any forum member give me any information on query below, it would be much appreciated. Thank you. Johnj

[Johnj]

I have been invited to take part in MAJIC Clinical Trials for patients who have PV or ET. I have ET and have been treated for this condition since Aug 2000 I am 75yrs age. The drug being tested is Ruxolitinib. Does any forum members have experience of this drug? Over the period 13years I have been on Hydroxycarbamide, Anagrelide and Aspirin in various permutations I am no longer on aspirin due to stomach bleed. Presently on a combination of Hyd. and Anagrelide

[Jo_L]

I don't have any experience of this drug but I am also going to take part in the trial. I have an appointment for my BMB, ultrasound etc on the 14th January and will find out soon after that whether I will be on Ruxolitinib or the best available treatment.

I am 49, was diagnosed with PV and ET in July 2010, and am currently on hydroxycarbamide and aspirin.

[Johnj]

Hi, Jo_L,

Thank you for coming back to me so promptly, I note that you go for your BMB on 14th January which is the day I go down to BCH Haematology for routine check up. I have not made up my mind whether to take part in the trials but I will let you know as soon as I decide.

I was previously on clinical trials when when Anagrelide was being tested. Again it was randomised and I finished up on Hydrauxurea as it was called then but now known as Hydroxycarbamide. I wish you well for Monday and hope everything works out well and if you get the Ruxolitinib that this drug works for you.

Best wishes for the future.

johnj

[JediReject]

Hi Johnj. You may be aware that there is extensive info on the internet about this drug as 'Comfort' trials for peops with Myelofibrosis have taken place over the last 18mths -2 years in the US and UK which resulted in the drug being approved for use in the US. It may be of interest to read some of whats gone before as I guess there will be many similarities to draw from.

Whilst it is not yet approved for use in the UK I have seen a NICE scoping document which refers to it. Good Luck to you folks who decide to take part in the trial and fair play to for being guinea pigs for the rest of us. Actually there is a chance I may be put on Ruxolitinib or Jakafi which is easier to say, in the next few months as my Hydrox isnt working too well for my MF. Cheers for now.

[beetle in reply to JediReject]

Hi JediReject. When you say there is a chance you might be put on Ruxolitinib in next few months is this wishful thinking or have you been told that by your Haematologist? The reason I am asking is the I am coming up against a brick wall with it. It is only licenced in UK for registered users and I am getting increasing worked up over the fact that it is now being trialed for ET & PV when it is still not actually available for MF where it has proven to be useful although not curative. What is the point is extending the trials if the drug will not be available - I understand it is very expensive. Where do you live? I am in Scotland and have been told that the Scottish Drug Council will be considering Ruxolitinib in the next quarter although this is not confirmed on their website. I have Post ET MF and have sought an upcoming consultation with Prof Claire Harrison and will be asking her about ruxolitinib. Are you considering BMT for your MF? I have an appointment to discuss this but am noway conviced that I want to go down that route and am almost hoping that the decision is taken out of my hands on grounds of age or something. Take care

Beetle

[Johnj in reply to JediReject]

Hi JediReject,

Thanks for the information, it is interesting that the USA has approved the drug, and I will certainly look at the site on line.

Thanks again.

johnj

[JediReject]

Hey thats ok im happy to pass on any info I can.Theres plenty out there and some is heavy going very technical stuff way over my head.

Beetle - I have sent you a message regarding your questions. Cheers

[fleetpete]

Hi, I think I'm going to be taking part in the trials - I live in the North of England - later in the year. I'm on Hydroxy & Aspirin...and would be very interested in any comments/thoughts you have over the next few weeks.