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Hydroxyurea and Sun Exposure

Blood Cancers & Disorders | Last Active: 13 hours ago | Replies (103)

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@garyr443 That's certainly sounds like at least a correlation in your case. However, it may not be the cause of the spike.

I have never found a correlation in my own platelet spikes from stress, coffee, certain food, how much I exercise, or whether I was failing to keep smilin', all of which I've heard suggested by others over the years. I tried keeping a journal to try to spot patterns. That was very helpful in identifying things that made me feel worse or better energy-wise, but those things didn't affect my platelet counts.

Rather than disbelieve others, however, my conclusion is that ET acts different in every person. And, as the disease slooowwwwwly progresses and as we age, effects of ET and meds change. Saw that with Dad until he died with ET and of COPD at age 82.

One line of research yet to be meaningfully pursued is the typical trajectory of ET in long-term patients who are fairly well controlled with HU, and how ET interacts with pre-existing conditions. Why, for instance, do some people progress to MF or leukemia and others don't, all things apparently equal? And why does progression occur at such different rates?

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Replies to "@garyr443 That's certainly sounds like at least a correlation in your case. However, it may not..."

@nohrt4me All valid points, but my own experience has been that I had ET that was untreated from age 52 to 62, when an accident brought me to the E.R. where my platelet count was found to be in the millions. So, I have survived extremely high platelet count and it has never been below 200,000. As for my expected longevity, with or without ET and Hydroxyurea, it's the same (about 86) according to actuarials based soley on my age and sex. So, I'm not worried about how long I may live. Quality of life is my major concern. Also, I don't have any circulatory, respiratory or other issues.
Getting back to the experience with the cheese, salmon and tuna, replacing my ground beef with these foods and eating nothing but salmon or tuna (varying by cost. Tuna is cheaper) and a LOT of cheddar cheese for over a month is the ONLY factor at play in my platelets rising from normal to 495,000. The cessation of these foods was the ONLY change that brought my platelet count back to normal. I'm no scientist, but I have a pretty good grasp of causality. I'm not saying this would happen with anyone else, but it did happen with me.

@nohrt4me About some progressing to leukemia and others not doing so, I don't think it works that way. As explained to me by my hemtologist in 2014, I am in no danger of leukemia because I don't have the JAK2 mutation. My mutation is CALR Exon 9.