Recently diagnosed with Essential Thrombocythemia (CALR 2)

Recent diagnosis
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Hello everyone!

Its nice to have found this forum! I have been reading some posts and I am grateful to have a space to hear from actual people what their experiences have been…and its also very nice to see that so many people have been living health/happy lives with MPNs.

A bit about me…

I am from New Jersey in the US and was just diagnosed a year ago with Essential Thrombocyethmia (CALR 2). I had no symptoms, and this was initially picked up at regular physical/routine blood work. I did have a full work up at an ongologist/hematologist complete with transabdominal ultrasound and bone marrow biopsy and so far, all of my labs and imaging are totally fine. No signs of splenomegaly or fibrotic tissue in the the bone marrow etc.

My platelets started off slowly increasing through 2024: February was 500 then last March actually down to 419 then it started back up to 500s in the summer, 600s in the fall and most recently jumped 100K all the way up to 769K.

This past year I have been only on baby aspirin, going in for monitoring and sort of watching and waiting but at my last visiot, my oncologist alluded to the fact that we may need to start a chemo agent.

I am very low risk: I’m under 50 with zero history of cardiac issues. I am highly active… in fact I am a runner and my resting heart rate is often in low 40s and has been since I was an adolescent. I have great energy, my cholesterol has been impeccable, I have no pain etc…so it makes the prospect of going on a toxic chemo agent a little daunting. Esp as I am an avid gardener, we are outdoors often through the year…AND I have family history of melanoma. The whole “balancing” quality of life/what brings one joy against the benefits of preventing a significant thrombotic event is causing me some agitation.

Just wondering if there are any others that are so low risk and at what point did they switch from watching and waiting with baby aspirin to starting meds.

Has anyone incorporated phlebotomy to reduce the risk of thrombotic events and maintained the watching and waiting? What is considered the threshold of “you need to go on an agent bc you are a heart beat away from a stroke?”

Thank you so much for reading.

XO
Erin

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Hi @Ekah welcome to you in the US.
Please just appreciate that we are a UK forum and diagnosis, treatment considerations, treatments and medications can vary.
I hope others will be able to share their experiences for you.
We are also such complex individuals with unique medical histories so comparisons are very difficult.
Perhaps write down all your fears, questions and practicalities and ask your medical team.
Treatment options and quality of life are of course considerations.
Please do let us know how you get on, I reckon the unknown is always scary.
Really look after yourself

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Hi @Ekah My rise in platelets was also a slow process and i was told to take baby aspirins. I was originally told if it went over 1,000 i would need something else. this later changed to reaching 60 or going over 1,500. 2 months after my 60th birthday it reached 1,500 and i was put on interferon injections. These are not classified as chemo but do have side effects. I was also fit and active before this but my activity has been reduced since then through other health problems. Obviously the protocol in the US may not be the same as the UK.

wishing you all the best

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