As a 'newbie' I hope I can share my experiences with you. I was diagnosed with MF 4 years ago and am now on a Clinical Trial taking Ruxolitinib (15mg in the morning and 15mg in the evening) I also take Panobinistat 25mg 3 days a week every other week!! The Panobinistat is quite severe but after 6 months on the trial I'm able to plan my life around the problems. My spleen has shrunk enormously but the downside is that I need a lot of Blood Transfusions. I joined this trial at stage 7 and was attending the hospital on a weekly basis for ECG's and blood tests. I now have a review once a month where I have an ECG, blood test and medical with my Haematologist. Because of the problems with low bloods I tend hospital weekly for blood tests and transfusion if needed. It would be good to share with any-one else on this trial?
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