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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 2 days ago | Replies (400)

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@treeore

Lori, You have a good memory! My medical leash is longer, perhaps because the new doctor is of a different frame of mind, perhaps because my HCT levels have (as of last test) remained in good zone. My platelets swung right back up during this drug free interlude, but, as I have said before, my platelets have been that high for decades, so I am not so prone to freak-out. I consulted with a Mayo doctor, and he and the local oncologist agreed to try me on a much lower dose of Besremi. I was at 300 when the liver enzymes exploded up. I won't go back to that level. I hope the 100 will be more than maintenance, since my platelets still need taming. Perhaps duration will make the difference, time will tell.
So far I've only used my SUP board as a kayak, as all my local water sources had too much movement in them for a beginner. (My 22 year old can stand on it, tho!) I'm learning but being cautious, as I've lost some vigor through this PV ordeal. Don't want to paddle out and struggle to return to shore. It's been lovely out on the water, though, and the inflation process is good for upper body exercise, I warrant!
Be well, stay cool! It's going to be over 100 degrees F here in Oregon for quite a few days. Hopefully you are in a cooler zone.

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Replies to "Lori, You have a good memory! My medical leash is longer, perhaps because the new doctor..."

I’ve had to reduce levels of meds too to keep my temperamental liver happy. Sometimes that reduction is all it takes to treat the disease and keep all the organs chipper. ☺️.
I applaud your efforts on the paddle board! I wouldn’t be too keen on anything less than a lazy lake either. But sitting with feet dangling or paddling about ‘like a kayak’ would be fun and cooling. Oy, I’m not good with high temps anymore and tend to lose my cherub-like demeanor. Thankfully we’re struggling to reach 60 today and a light drizzle in the north woods of Wisconsin. Stay cool!! And best wishes going forward with your treatment! Keep us posted. ☺️