I noticed that ruxolitinib has been filed to the FDA for treatment for PV. Looks like they will publish results december time.
Results appear impressive with 88.5% acheiving Complete hemalogitcal remission after 48 weeks, i wonder this compares with hydroxycarbomide?
What is meant by complete remission. Does this mean the red cells stop proliferation without the need to let them develop and kill them off daily with
Hydroxycarbamide. Does it prevent the proliferation further back in the chain of events?
My understand is that its not a remission from the condition, it means blood counts are being controlled in the normal range without the need of venesections.
Right, so its really the same as hydroxycarbamide in effect. I have PV and take 1000mg daily low dose aspirin and no venesection and this keeps red cells within normal parameters. It would be interesting to know though if ruxolitinib proved to be less damaging in the long-term than the chemo capsules.
Yes and interesting to know what % of people like yourself manage to acheive this, maybe Maz could do a poll
Crazy daisy, I was having real problems .venesection every 4 weeks ,flushing ,fatigue ,I was very sick , so reading the PH diet book seemed mambo jumbo to me .but what's to lose , Strawberries for breakfast , Apricots for snax , salad or lots of vegs ,each dinner time, it's not difficult , then to be offered the Majic trial ,I was given a chance , together with the doctors we can be well ,but we need to try to help ourselves as well. I haven't had a bad result for 12 months now, And more important I feel well.. So it might be ruxolitinib plus the food I eat , I'm convinced it is both ,,, Twinkly.
Hi Twinky,
Was you on hydroxycarbomide before?
Paul
Yes I agree Twinkly. I cannot tolerate the pH diet but have a regime which I believe helps me. If I deviate from it I usually pay the price. I try hard to be logical in my approach to managing my condition in the best way I can. Do what your body tells you to do. I also have to skirt around stomach ulcers and hiatus hernia and diverticulitis so some "healthy" foods are not suitable. But like you I believe in self-help and find I can manage my condition quite well - along with the haematologist's expertise of course.
Thats great news. Makes you wonder if Ruxolitinib may ever been considered as primary therapy.
Paul42,
Great question! Here's what I found from the library of Patient Power:
patientpower.info/video/new.... Dr. Bart Scott is a Medical Oncologist at the Seattle Cancer Care Alliance and a Research Associate in the Clinical Research Division at Fred Hutchinson Cancer Research Center.
patientpower.info/video/dev.... Dr. Ruben Mesa from the Mayo Clinic in Scottsdale, Arizona is a world expert in the field of hematology.
I hope this helps answer some of your questions. Please feel free to browse through Patient Power's library.
Best wishes,
Sheryl
where can one see the report saying 88.5% successful etc for PV
Its here, onclive.com/web-exclusives/... - however i think i may have misread it. It says 24% acheived at week 32, and 88.5% at week 48. I am thinking now its 88.5% of the 24%.
PV stinging itch and Ruxolitinib 
Pv ruxolitinib and ulcerative colitis 
Chemotherapy for pv
Ruxolitinib no response
Ruxolitinib 
