Anyone diagnosed with Essential Thrombocythemia (ET) with CALR?

Posted by gaildj @gaildj, Apr 15 9:13am

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

donnadarling | @donnadarling | Apr 27 3:18pm

Hi! I'm new here. Happy I found this site! Thanks, all, for sharing your info. I was diagnosed with ET three years ago. Just dipping my toe into learning about and experiencing ET. It's been very stable until recently when numbers started to go a bit wonky. My fantastic "team" at Wilmot Cancer Center suggests hydroxyuria but I was told (by an oncologist!) the side effects are miserable. I'm allergic to aspirin (ulcers) and also have A-Fib so am on Warfarin which also can cause clots and strokes. Xarelto (wow! $$$!) has been suggested instead of Warfarin. Not how I planned to spend my retirement but life has been good, my partner's an angel and my friends are a hoot, so all is good! To you who are bumping heads with anxiety, unknowns, and let's face it FEAR, it sounds like you're doing all the right things and we, out hear, are wishing you well. Does it seem strange that MPNs and genetic cancers showed up about the same time that "forever chemicals" began infesting the world? What kind of research is happening? Enjoy the sunny days! Nice to get to know you!

janemc | @janemc | Apr 28 4:48am

In reply to @donnadarling "Hi! I'm new here. Happy I found this site! Thanks, all, for sharing your info. I..." + (show)

@donnadarling

Unless an oncologist specializes in ET, she probably knows less about it than those actually living with it. HU can be problematic for some, but I, along with tens of thousands of others with MPNs, sickle cell anemia or throat cancers, am grateful for every therapeutic capsule.

There is so much real life experience being shared here. Make yourself at home!

And thanks for sharing your wonderful positivity!

ally6lucas1 | @ally6lucas1 | Jun 1 1:26pm

Hello everyone who has Et with clue mutations? Plus Anton have the kras mutation added?

nohrt4me (Jean) | @nohrt4me | Jun 2 7:43am

In reply to @ally6lucas1 "Hello everyone who has Et with clue mutations? Plus Anton have the kras mutation added?" + (show)

I have CALR. Don't know what KRAS is except that it is sometimes associated with other types of cancers. I know researchers are trying to refine the mutation profile for us. Did yr doc tell you more about it these mutations?

1pearl | @1pearl | Jun 2 9:37am

In reply to @ally6lucas1 "Hello everyone who has Et with clue mutations? Plus Anton have the kras mutation added?" + (show)

Hi,
I have CALR1. Sorry, I do not know what KRAS mutation is.

garyr443 | @garyr443 | Jun 2 1:53pm

In reply to @ally6lucas1 "Hello everyone who has Et with clue mutations? Plus Anton have the kras mutation added?" + (show)

Yes, I have the CALR Exon 9 mutation.

Lori, Volunteer Mentor | @loribmt | Jun 2 2:10pm

In reply to @ally6lucas1 "Hello everyone who has Et with clue mutations? Plus Anton have the kras mutation added?" + (show)

Welcome Mayo Connect, @ally6lucas1 You popped into the right support group for members who have ET (essential thrombocythemia). This is a blood condition where there is slight change in a gene, in your case the CALR gene. This defect then allows for the over production of platelets.

It looks like your blood tests for possible mutations also discovered another genetic mutation referred to as KRAS. This mutation is a change in the KRAS gene that locks a key growth-signaling protein in the “on” position, causing cells to multiply uncontrollably. From my understanding it’s an acquired genetic mutation more often associated with cancers which may involve tumors more so than a blood condition.

Were both of these a recent discovery for you? Have you started any treatment for your ET?

Return to first page

Please sign in or register to post a reply.