Would you ever or have you ever participated in ... - Fight MPN

Fight MPN

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Would you ever or have you ever participated in a clinical trial? Feel free to reply in order to expand on why you selected that answer.

tclementi•9 years ago•7 Voters

Please select all that apply:

Yes, it saved my life! Yes, but I didn't get the result I hoped Yes, but I had to drop the trial Yes I would be interested but I don't know how to find oneNo, I would feel like a guinea pigNo, I didn't qualify No, I don't need one right now Other

5 Replies

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catbowler19509 years ago

I have Myelofibrosis had taken Hydroxyurea for 2 years when my spleen enlarged causing me severe pain. I decided to go to see aDr that specialized in MPN disease . I decided a trial was my best option.

That was in. 2008-2012 the drug was approved by the FDA . Jakafi

I wouldn't be here today if not for the trial.

tclementi• in reply tocatbowler19509 years ago

Hi! Thanks so much for sharing! Yes, I agree, it's very important to see a specialist and am glad you were on the Jakafi trial! How are you feeling today?

catbowler1950• in reply totclementi9 years ago

I feel great,!

My rbc is low I must get transfusion every month . My platelets dropped very low a couple months ago. My hemo lowered my jakafi from 20mg twice a day to 10 mg twice. My platelets have increased still

catbowler1950• in reply tocatbowler19509 years ago

Platelets still have long way to go

tclementi• in reply tocatbowler19509 years ago

Sorry, for some reason I didn't see your comments back until now! Glad you are feeling well!

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