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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janemc | @janemc | May 7 5:48am

Hello, dd1949! For some people, HU works quickly, lowering their platelet count and keeping it down.

For others -- like you and me -- it takes much longer, and there's some bouncing up and down in the bloodwork.

And as nohrt4me has commented, platelet counts vary from day to day, even from hour to hour.

As for feeling tired -- lots of us share that too. Be patient with yourself. Rest when you need to.

You're making great progress!

nohrt4me (Jean) | @nohrt4me | May 7 8:17am

Also ET-CALR. Was moving into 800s when I started HU after a couple years on just baby aspirin. Took 6 months to get to 600s. Then 500 mg added M-W-F. I've stayed pretty much in 400s x 7 years now. Doc is happy with that. Once a year or so platelets will spike into the 500s, but they always go back down. Doc is not concerned about this.

I have good and bad days with fatigue. Drink lots of water, get a good night's sleep, try to reduce stress, pace yourself.

I was a very high energy person, and now I'm not. I plan two things I can accomplish every day. Today it's sorting and dusting one of four shelves in the book case and folding and putting away yesterday's laundry.

If I put more things on the list and can't get them done, I feel like a slug. But if I only have two things on the list and get them done or even do *more,* I'm a champ.

It's all about playing the right head games with yourself. 🙂

Lori, Volunteer Mentor | @loribmt | May 7 9:02am

In reply to @nohrt4me "Also ET-CALR. Was moving into 800s when I started HU after a couple years on just..." + (show)

@nohrt4me Or you can try my ‘cheat your way to success’ to-do list. When I actually do something noteworthy, I jot it down, in list format, and then cross it off! By the end of the day it can sometimes look pretty impressive. 😂.
Speaking of head-games; Remember, Dust is a protective covering!

dd1949 | @dd1949 | May 7 9:03am

In reply to @janemc "Hello, dd1949! For some people, HU works quickly, lowering their platelet count and keeping it down...." + (show)

@janemc Thank you, very much. I appreciate your perspective and encouragement. I have a great wife and very supportive children, but hearing from someone who is living with my blood disorder helps me feel much less alone on this journey. Again, thank you!

dd1949 | @dd1949 | May 7 9:05am

In reply to @nohrt4me "Also ET-CALR. Was moving into 800s when I started HU after a couple years on just..." + (show)

@nohrt4me
Please note my reply, below. I send it to you, too!

nohrt4me (Jean) | @nohrt4me | May 7 11:47am

In reply to @loribmt "@nohrt4me Or you can try my ‘cheat your way to success’ to-do list. When I actually..." + (show)

@loribmt "Dust is a protective covering."

Hee, I presume that applies to cat hair, too??

Lori, Volunteer Mentor | @loribmt | May 7 12:41pm

In reply to @nohrt4me "@loribmt "Dust is a protective covering." Hee, I presume that applies to cat hair, too??" + (show)

@nohrt4me Cat hair…even better. It’s more like a felt covering. LOL.

bluehorse | @bluehorse | May 7 12:58pm

I am 81, have CALR ET since 5/2024 and currently am on 1000mg Hydrea nightly . Fatigue hits occasionally pretty hard but it is sporadic every other week or so. Platelet levels go up and down but my haematologist has not found it necessary to adjust meds since being on this dose. I recommend taking your hydrea at bedtime to avoid most of daytime fatigue.

janemc | @janemc | May 7 2:37pm

In reply to @dd1949 "@janemc Thank you, very much. I appreciate your perspective and encouragement. I have a great wife..." + (show)

@dd1949

Having a diagnosis (ET) that literally labels us aliens -- has a way of making us feel alone!

But your fellow Extra Terrestrials are right here, 24/7/365.

dd1949 | @dd1949 | May 7 2:44pm

Thank you, @janemc, I appreciated the chuckle. As my primary Dr said, "Wouldn't be nice if ET went home!" ... But, as a retired liberal pastor, when I asked myself, "Why me?", I answered, "Why not, me?" I could have it much worse. My beloved cousin, with whom I had a particularly close relationship for 50 years, died at 70 a year-and-a-half ago from ALS. I will make it on this journey because of the wisdom of this group and its support, and others dear to me. Bless you, all!

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