Has anyone out there been fortunate enough to get on to the JAKAFI trials........

[Joprv]

[marianela]

Marianela

Hi Joprv - I did not get on the JAKAFI trials because I have not tried to - did you apply?

At present I am only on aspirin and my platelets stand at 516 which my consultant is pleased with, so I thought I would leave well alone.

[JediReject]

Hi Joprv i was a tad disappointed to learn of the trials via an email after they were done and dusted as primarily they were aimed at peops with Myelofibrosis. Of course my cynicism says if you live north of watford you get to hear about bugger all. I4m not sure I would have qualified but I dont think there are many candidates as it affects about 1 in a 100,000. But I was cheesed off that I knew nothing of it. The drug might not help everyone and has side effects but its a major breakthrough in my view. Trouble is unless it has a wider application it mite be cost prohibitive because in the US it is 96000 dollar a year. ok if youre a squillionare lol. Cheerz

[ourlife]

HI Joprv, I think that at the moment to get on a trial you either have to be in a bad way or intolerant to available medication.It also helps to be with a Haematologist who is up to speed! I am currently on a trial SAR302503 as I was becoming intolerant to HU. I am interested as to how you are getting on with your trial both mentally and physically,and what criteria you had no meet to be accepted.

[nspann1]

Hi ourlife, I'm about to start a SAR302503 trial next month, I go through the pre trial examinations towards the end of the month. I'm interested to know how you're coping with the trial and is it of any benefit?? I'm participating at the Heartlands hospital in Birmingham, is this where you go...

[ourlife in reply to nspann1]

Hi nspann 1, No I'm under Guys in London and have drawn the 400mg dose. I had to come off all meds for 3 weeks prior to starting the trial and this was very worrying for me, as I didn't know what to expect - my counts went from 380 to 585 in that time, which was not too bad. After the 1st week on the new drug I felt great, however after the 2nd week counts were 800 and I'm currently feeling more fatigued than I have felt for a long time. I understand it is normal to take 6 weeks before we see a reduction in platelets - I have noticed that some of the side affects from before (previous drugs) have gone, so overall I am optimistic that when my counts stabilise I will feel a lot better ! The worst thing by far about the trial is my imagination !