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Fatigue and Frustration with CALR ET
Blood Cancers & Disorders | Last Active: May 10 7:52pm | Replies (24)Comment receiving replies
@nohrt4me I am Jak2+ET and I didn’t notice my fatigue until I was ordered back into the office and forced to make a very long and stressful drive in to work. I tried HU but it kicked my ass and made me very sick. I’m waiting to see what my Dr has next on the list but it’s beginning to dawn on me that I’m going to have to deal with this forever. I also have terrible bruising and bleeding and chronic inflammation. My platelets usually range between 650-750 but recently dropped to 489 then 411 on HU. I had radiation for breast cancer and I was told that was the reason they dropped. It seems so strange that so many others have much higher platelets and no symptoms and I have a variety.
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@mdramsey48 I felt sadness for you to read that you are enduring radiation for breats cancer, as well. I can only imagine the depth of fatigue you feel from having ET, taking HU, and receiving radiation treatments, also. My heart aches for you and my spirit will keep you on my heart and in my thoughts. May peace, stength. and healing be yours in all their fulness.
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@mdramsey48 Researchers seem to lean toward "allele burden" (basically the percentage of platelets messed up due to ET) as a better indicator of symptoms than platelet level. I was surprised to learn that age and mutation type were better indicators of clot risk than platelet counts. Plus lots of things besides ET can affect platelet levels. Apparently radiation in your case?
Do you think the breast cancer treatments might be contributing to fatigue. Sounds like you have been hit with a lot of stuff, and teasing out the cause, much less how to fix it, can take awhile.
Commuting in road work season. Ugh. That'll make anyone tired! I have to slolom thru lane changes and orange barrels for tests next week. I will think of you.