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Anyone diagnosed with ET w/Calr?
I felt confused and freaked out after the diagnosis. It seemed no one knew much about ET. I didn't know that hydroxyurea was chemo in pill form, until I picked up my RX and I had to talk to the Pharmacist who advised me to be careful with the medication-wash my hands, clean the counters it touched, don't let anyone else touch it! (what in the world?) I was diagnosed with ET (Calr mutation) December 2025. I found out, after having my yearly physical exam, that my platelet count was at 1053. After a harrowing couple of weeks, I had a bone marrow biopsy and ET was confirmed. I now take Hydroxyurea 500mg each day and 1 baby aspirin in the AM and 1 in PM. Have had some dental issues, painful foot cramps at night, sometimes lower leg also, fatigue in the afternoon. Also some vertigo. Not sure if the disease or the drug is responsible for the symptoms. I exercise 3 or 4 times a week. My last blood test my platelets were at 553. I am a 74 year old woman, living in Minnesota (about 110 miles from Mayo in Rochester.) I decided to make an appointment at Mayo, where I finally got some answers, felt more hopeful about the future, and found this group.
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I too just got diagnosed with a sense ET/primary myeloid fibrosis with CALR mutation. Did bone marrow biopsy in February that confirmed. I’m on jakifi which brought my platelets from 1,200,000 to 590 within two weeks I have a follow up appointment tomorrow for more bloodwork to see where they are feeling extreme fatigue inflammation and muscle and head pain. I’m 59 years old female.
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2 Reactions"Confused and freaked out" -- you nailed it!
But congratulations on lowering your platelet count by FIVE HUNDRED points! And how smart you are to have gone to Mayo for a better understanding of your diagnosis.
There's a good chance that as the HU continues to lower your county, you'll feel less fatigue, vertigo, and leg/foot cramps.
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2 Reactions@tmth
That's supersonic progress on your getting your platelets down!
Hope your ET symptoms will decrease too.
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1 ReactionI was diagnosed with ET / CALR in 2021. Platelet count was 1.1 million and redid the bloodwork bec they thought it might me a lab error. Nope!
Hydrea is hard to adjust to, but eventually there aren’t side effects.
My dose went from 500 mg 7x a week, to 5 and now 3.
Platelets now between 400 -500k. I needed (unrelated) surgery and pain temporarily increased platelet count.
My hemeonc told my neurosurgeon and me not to worry unless the count goes to 700k. It hasn’t.
The Hydrea side effects of foot/leg pain, stomach issues and fatigue greatly lessen with time.
ET followed later by hydrocephalus was a 1-2 punch, but getting a proper diagnosis was the hardest part.
I was afraid docs would label me a hypochondriac until I was properly diagnosed.
It’s hard, but don’t get discouraged and you are your own best healthcare advocate.
Good luck.
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5 Reactions@janemc Thanks for the encouragement! Its nice to hear from people with similar diagnoses and/or are familiar with ET.
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1 Reaction@tmth Amazing drop in your platelet count, and in a short period time! I hope you see improvement in your symptom as well.
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1 Reaction@janetbender Good news that you have such a drop in platelets and also in the dosage of the hydroxy! Also good to know that symptoms will hopefully lessen with time. I am feeling more hopeful and also glad to hear from others who are dealing with my same issues. Thanks for your feedback.
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2 Reactions@gaildj
thank you. just did blood work yesterday so that’s 4 weeks after taking 20 mg 2x per day of jakifi . now they are 112. so now we backed down to 10 mg 2x per day and do bloodwork weekly as well as 1x iv iron dose.
if it drops more he will stop jakifi .
Sorry you have been diagnosed with this. I was in 2018, a few things that are important to remember, there are several treatments that are effective in to keep platelets in check, I was in HU for about 4 years with decent effect with minimal side effects from the drug (be careful in the sun). Had issues with it and have been on Jakafi since. I can't say that I have issues with Jakafi, but the slow progression of the ET is kinda frustrating - for me it is mostly progressing fatigue (the last couple of years the worst). But in many cases I think that general hematologists tend to overstate the disease, once I started seeing MPN specialists, it becomes obvious it that is is not typically as bad as many other diseases. It is often said you pass with it, not from it (for most). Blood Cancer United has a really good peer-to-peer program that lets you visit with somebody with the same diagnosis, it often helps to know you are not alone ( https://bloodcancerunited.org/resources/patients/peer-to-peer-support ). Just stay positive and know there are resources that can keep this mostly at bay.
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1 ReactionI have ET CALR9 and just started on Hydrea 500 mg twice a day. I also take a low dose aspirin. My platelet count was 822. I started Hydrea April 1 and my count today is 623. Since I just started the medication, I will see my hemo/oncologist in about two weeks as we adjust my dosage. I had no side effects from the medication until today. I am suddenly exhausted. Does this sound normal? I am 74 and exercise 3 to 4 days a week, lifting, stretching, and cardio. I have always exercised and don’t want to give that up. I just wonder if this overwhelming fatigue is from the Hydrea and if it will go away after time passes. Should I keep exercising while I feel so tired? Thanks for any insight!
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