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 4:16pm

In reply to @dd1949 "Thank you, @janemc, I appreciated the chuckle. As my primary Dr said, "Wouldn't be nice if..." + (show)

@dd1949

That is a terrible way to lose a loved one.

I am so sorry.

dd1949 | @dd1949 | May 7 5:28pm

In reply to @janemc "@dd1949 That is a terrible way to lose a loved one. I am so sorry." + (show)

@janemc
Thank you.

nohrt4me (Jean) | @nohrt4me | May 8 8:06am

In reply to @bluehorse "I am 81, have CALR ET since 5/2024 and currently am on 1000mg Hydrea nightly ...." + (show)

@bluehorse Yes, my hemo also recommended taking hydroxyurea at night. Just curious what your platelet swings look like. In the 8 years I've been on HU, mine can run from 420 to 530, though mostly they stay around the 450 mark.

My dad also had ET, and he had wild swings that I think we're as much the fault of the meds as the ET. At that time (30 years ago) much less was known about ET, and his docs started him on heavy doses of both HU and anagrelide to get platelets down asap.

Now docs are more likely to start on a lower dose and gradually add as needed.

nohrt4me (Jean) | @nohrt4me | May 8 8:16am

In reply to @dd1949 "Thank you, @janemc, I appreciated the chuckle. As my primary Dr said, "Wouldn't be nice if..." + (show)

@dd1949 I am 72, but have outlived four cousins who died of cancers in their 60s. One was doing ok, but lowered immunity from chemo was an issue, and COVID got him.

HU does lower immunity, and docs may not bring up vaccines any longer because they've become such a fraught topic. Most docs will encourage you to get flu and COVID if you ask their advice.

dd1949 | @dd1949 | May 8 9:40am

@nohrt4me (Jean) My Dr has been monitoring my immune system and all is well, so far. I do continue to get my flu and COVID vaccines. I'm handling the HU well, though my daily medication for my GIRD may be helping lessen any stomach and intestinal issues. I'm also on 325mg and Warfarin, daily, because of my AFIB. I get my INR for blood viscosity tested every 4 weeks. It's staying in a healthy range. I'm also living with Type 2 Diabetes, so I'm well aware of my increased chances for a heart attack or stroke. So far, all is balanced well. I've learned I have to be a well-informed and strong advocate for myself in relation to my health care, and I am.

dd1949 | @dd1949 | May 8 9:42am

In reply to @nohrt4me "@bluehorse Yes, my hemo also recommended taking hydroxyurea at night. Just curious what your platelet swings..." + (show)

@nohrt4me My Dr is hoping to get my numbers below 400. He said, earlier, "Your body is being problematic." I will get there. It's just a longer journey than I expected.

mdramsey48 | @mdramsey48 | May 8 10:02am

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

@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.

nohrt4me (Jean) | @nohrt4me | May 8 2:38pm

In reply to @mdramsey48 "@nohrt4me I am Jak2+ET and I didn’t notice my fatigue until I was ordered back into..." + (show)

@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.

mdramsey48 | @mdramsey48 | May 8 3:36pm

In reply to @nohrt4me "@mdramsey48 Researchers seem to lean toward "allele burden" (basically the percentage of platelets messed up due..." + (show)

@nohrt4me Thank you! I had fatigue prior to breast cancer and active treatment. I have no doubt the radiation contributed as well. The drive to my job is over an hour through several 3 year road construction projects so yeah, stress does exacerbate fatigue for sure. Where do you find your allele burden? I’m assuming it’s on the BMB somewhere. Oddly, I noticed I was ‘unmotivated’ about 3 years ago but went to my PCP last July because of super easy bruising and bleeding. That led to my dx. The symptoms have not improved however, during the 30 days on HU, the bruising and bleeding did seem better. I’m right back to ‘abnormal’ now lol

1pearl | @1pearl | May 9 11:37pm

In reply to @nohrt4me "@mdramsey48 Researchers seem to lean toward "allele burden" (basically the percentage of platelets messed up due..." + (show)

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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