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Fatigue and Frustration with CALR ET
Blood Cancers & Disorders | Last Active: May 10 7:52pm | Replies (24)Comment receiving replies
@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.
Replies to "@mdramsey48 Researchers seem to lean toward "allele burden" (basically the percentage of platelets messed up due..."
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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@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