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Posts (5)

Jun 13, 2017 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

Thanks for sharing. As with the Oncologist, symptoms and progression of the issue seem vague, and individual. Suggestions, although appreciated, can be applied to everyone with or without any health issues. I had expected a reply from someone with the disease, from a personal, but now noticed you are “the personnel director “, not with personal experience. And I will probably not bother with this site again.
The site never accepts a password, always requires me to enter a new password (I always use the same again), but takes about 20 minutes to access.. it seems you could might look into a user friendly site.

Jun 12, 2017 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

Do you mind sharing what symptoms you had besides the lab work? I have “pins & needles” in Lt hand and Rt foot Dr. thinks due to back arthritis. Oncologist at Virginia Mason says this rare disease rarely seen; although he diagnosed the problem. Says no unpleasant side effects from Hydroxyurea1500mg daily although his nurse told me hair loss is common & side effects variable at this dose? Would you be comfortable sharing what you mean by “long journey”? I will be attending a cancer support meeting next week, hope to find someone with same problem.
thanks,

Jun 2, 2017 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

I was diagnosed with essential thrombocythemia Dec 2016, platelets in the millions, put on hydroxyurea, started at 500mg every 3 days, increased every 2 months after blood draw, currently 1500mg daily. Platelets slowly coming down. Anyone out there with this rare disease?

Apr 22, 2017 · Side effects of Hydroxyurea, ET in Blood Cancers & Disorders

Thank you for the info. Initially, Sept, 2016 my platelet count was in the millions & I had what I thought were TIAs — dizziness, visual disturbances, numbness/tingling 3 fingers lt hand — which were temporary, maybe 3 minutes at a time or so, but became more frequent and led me to seek medical help. My oncologist does not think these were TIAs but whatever they were, they were relieved when he put me on a baby ASA/day and the hydroxyurea. He started the hydroxyurea 500 1q3days for 2months, then bid 2 months, now tid for 3months. He thinks the Lt leg peripheral neuropathy probably not due to the ET, and if not relieved in a couple months will order some MRIs & PT. Platelets gradually going down. Wondered if anyone else had these symptoms?

Apr 9, 2017 · Side effects of Hydroxyurea, ET in Blood Cancers & Disorders

I was diagnosed with Essential Thrombocythemia last November and am on Hydroxyurea 1500mg daily in an effort to reduce my platelet count, still in 9000s. Developed peripheral neuropathy & pain left leg, hip to foot. Oncologist thinks due to arthritis back per X-ray, wondered if others have this also, maybe due to the disease or meds?. Dr. says rare disease so difficult to predict outcome/symptoms. Anyone know of support group in Seattle area for this? Have called the local hospitals, cancer lifeline, etc.; no positive results.