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Hydroxyurea: what side effects were so bad you had to stop taking it?
Blood Cancers & Disorders | Last Active: 30 minutes ago | Replies (41)Comment receiving replies
@lehall125 Thank you for your post. My name is Gabriel (diagnosed with PV/ Jak2 a little over a year ago; currently taking aspirin only). I so appreciate hearing that I am not the only one who is willing to let my platelets fluctuate btwn 600-800. I suppose I have been lucky in not suffering any symptoms, except for some erythromelalgia (redness, blisters, burning in the toes) which has now mostly disappeared.
Like you, I lead a rather active life physically with daily yoga & meditation for the past 50 some years, to which I recently added the gym. Though somewhat hampered by pesky memory issues, I continue seeing clients as a therapist and wouldn't want to add to the natural brainfog of age by risking HU "brainmush". Also, at 76, I continue to enjoy riding my 1700cc motorcycle -- Luckily I have slowed down with the years, but still thoroughly love rumbling and dancing with the curves. Now, am I recommending that everyone reading this get rid of their HU and buy a motorbike? Not in the least. The choice to take or not to take chemo drugs is ultimately an extremely personal one. Remember, this is a "support group"; may all participants in this group (please) support even those who make a different choice.
Replies to "@lehall125 Thank you for your post. My name is Gabriel (diagnosed with PV/ Jak2 a little..."
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@gajokos Support is great, and declining treatment that doesn't work for you is fine by me. I do, however, think that people sometimes blame unrelated ills on HU, that rationale for alternative treatments should be sourced with something more than "I read somewhere that ..." and that outright misinfo needs to be corrected.
Did you do anything for erythromelalgia? I had this before taking HU, but it still comes back occasionally. Oncology said, yup, that happens, just gotta deal with it. Cool water or compresses about the only thing I've found that works.
Not a motorbike aficionado, but I did some freelance work for Harley-Davidson many years ago. Absolutely nicest, most collaborative clients I ever had. Seemed like a great company. A local Harley Owners Group here does fund-raisers for vets and sick kids. I enjoy chatting with them about their bikes--and then beat it when they crank up the music.