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@springer44

When I got the results from my annual Medicare checkup last year my platelet count was 900k. By the time I saw an oncologist a month later it was 1.2 million. They put me on hydrea right away. I haven’t noticed any obvious side effects except for itching, although I thought that was a symptom of ET and PV as I had it before I started the drug. I can’t comment on thinning hair and dry skin either. I’m 69, and I’ve had those issues years before I started taking Hydrea.
I’ve been in this forum since then and what I’ve learned is active people have the best outcomes. I’ve got several landscaping projects going and we’re building a cabin; also things that were going before this diagnosis. It all takes longer because I take a lot of breaks, but it seems to me at least part of it is that I’m 69 years old.

My platelet count bounced around a lot for about six months before we hit the right dose and now my platelets are now consistently in the 300k range. I tap the capsules into the cap of the bottle and then right into my weekly pill holder. And daily from there right into my mouth. I do take a sip of water before I take the pills, with more water, just to get them down quickly. I never have to touch them. I feel as good as I think I possibly could at this point in my life, which is pretty good! Although I think about my blood cancer every day when I take my pills I don’t dwell on it. I treat every day the same as I did before my diagnosis, a blessing.
Like you I was freaked out by the listed side effects. Although they sound horrible, they seem to be rare. I’m way more concerned about the blood clot than the side effects. You got this.

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Replies to "When I got the results from my annual Medicare checkup last year my platelet count was..."

Hello, I was diagnosed with PV in Jan 23. I just turned 57. Same situation with the blood counts. Platelets bounced around, on, off, seven days on hydra, then off, then five days and now on three days a week which I’m ok with. Counts seem to be good for over three months now. I had some hair loss and brown spots on my skin and even small sores and sensitive gums in the beginning but my oncologist told me to wait it out and I did. Happy to report that my brush appears to have stopped filling with hair every time, my mouth is back to normal and the spots are less. Saw the dermatologist and he said Hydroxyurea will bring up “old” sun damage from years past and to come once a year and he can burn off anything suspicious. Ok, we go on with life and just stay on top of our labs. If we think about it constantly, we will not enjoy everyday life 😊

Your post is uplifting & amazing. I have been taking 1000mg HU now for 3 weeks. I started on 500mg HU after I had taken a bone marrow biopsy. My platelets were 572 & the biopsy showed no scarring & everything else normal. My diagnosis was ET with the JAK2 mutation at 64. I took the 500mg HU for a month with weekly labs. I had no problems with the medication but it had little effect on lowering my platelets. My Dr then asked me to try 1000mg & again no problems with the medication & my platelets are now at 427. I’m amazed that yours was very high at 1 point but now are in the normal range at 300. That’s great. I just get so depressed from not only going to the Dr’s office each week when for over 50yrs I rarely saw a Dr. I hope to soon not have to go for the weekly tests. Keeping fingers crossed. Your post really helped me cope today. Thank you.