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Fatigue and Frustration with CALR ET

Posted by dd1949 @dd1949, May 6 12:54pm

I had a bone marrow biopsy on July 8, 2025, which confirmed my CALR ET. My highest platelet count was 987. I've started taking 500mg of Hydroxyurea, immediately and daily. The numbers lowered to 877 three weeks later, but only gradually came down to 489 on April 19, 2026 - 9 months from the start. My Dr gradually increased my dosage to 1000 mg (M-F) & 500mg (Sat& Sun). Then, last week, April 30, 2026, my number when back up to 564. I am now taking 1000mg (Sun through Sat) and hoping this brings my numbers down. Fortunately, the Hydroxyurea is my friend - and I take it as such - every morning. I'm blessed to have no other impacts or effects from it, other than I get fatigued more easily than I would like. Definitely! Have you experienced the up-and-down numbers? What helps you with your frustration of them not coming down more quickly? Do you get fatigued, too? Still adapting after 9 months.

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Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | May 10 7:13am
In reply to @1pearl "Hi @nohrt4me , It is interesting that allele burden might be thought to be a larger..." + (show)
Profile picture for 1pearl @1pearl

Hi @nohrt4me ,
It is interesting that allele burden might be thought to be a larger factor in symptoms. I am not sure if that is true or not as I have a pretty high allele burden and high platelets but no symptoms. I have not had other treatments for anything though and hope to never need them. My younger and only sister had chemo for TNBC about five years ago and still has fatigue, neuropathy in her toes, and sometimes tingling in her right fingers.
I only work part time so less work stress for me than many. I spend lots of time working in the yard with the garden, doing tons of exercise, and learning new material with my daughter in her two college classes. I will continue to count my blessing and stay very busy with no time to worry about what I might or might not have that makes my platelets high.
Wishing everyone well and Happy Mother’s Day to all the moms.

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@1pearl I don't know if that's true either, only a theory. Clinicians are not using allele burden as a treatment basis as far as I know.

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dd1949 | @dd1949 | May 10 4:29pm
In reply to @mdramsey48 "@nohrt4me I am Jak2+ET and I didn’t notice my fatigue until I was ordered back into..." + (show)
Profile picture for mdramsey48 @mdramsey48

@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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dd1949 | @dd1949 | May 10 4:34pm
In reply to @1pearl "Hi @nohrt4me , It is interesting that allele burden might be thought to be a larger..." + (show)
Profile picture for 1pearl @1pearl

Hi @nohrt4me ,
It is interesting that allele burden might be thought to be a larger factor in symptoms. I am not sure if that is true or not as I have a pretty high allele burden and high platelets but no symptoms. I have not had other treatments for anything though and hope to never need them. My younger and only sister had chemo for TNBC about five years ago and still has fatigue, neuropathy in her toes, and sometimes tingling in her right fingers.
I only work part time so less work stress for me than many. I spend lots of time working in the yard with the garden, doing tons of exercise, and learning new material with my daughter in her two college classes. I will continue to count my blessing and stay very busy with no time to worry about what I might or might not have that makes my platelets high.
Wishing everyone well and Happy Mother’s Day to all the moms.

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@1pearl I admire your spirit and perseverance!

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mdramsey48 | @mdramsey48 | May 10 7:52pm
In reply to @dd1949 "@mdramsey48 I felt sadness for you to read that you are enduring radiation for breats cancer,..." + (show)
Profile picture for dd1949 @dd1949

@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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@dd1949 That is literally the sweetest thing I have ever heard. I cannot thank you enough. I started 2025 with back and knee issues then ET and breast cancer. It is literally a blur. I am blessed with a wonderful family and blessed to have contact with people like you❤️

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