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Essential thrombocytosis with MPL mutation
I’m 83 and in pretty good health. I first noticed my blood platelets were around 450 about 3. years ago. Doctor said nothing serious. Over the last 3 years it has slowly risen. Last April hit 588. So it was recommended to see hematologist. I let it go for a few months. Finally went on 10/21. Blood sample showed it was 612. And samples sent to Mayo came back with diagnosis of essential thrombocytosis with MPL mutation. I took my first hydroxyurea pill last night and scheduled for bone marrow biopsy on 12/1. I’m very hesitant about taking the pill because of its side effects but doctor says I have no choice. My age makes me a candidate for stroke and heart attack. Which made sense. So I’m doing it. Anyone have any advice or thoughts about my diagnosis? Thanks in advance for any replies.
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Welcome @flynnconn, I'm tagging fellow members @create @granniet @heartspace as they also have experience with myeloproliferative leukemia virus oncogene (MPL)-mutated essential thrombocythemia (ET).
You may also be interested in these related discussions:
- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
- Myeloproliferative neoplasm Anyone else have a similar diagnoses? https://connect.mayoclinic.org/discussion/does-anyone-else-have-a-similar-diagnoses/
I can understand your concerns about the side effects of hydroxyurea. Did your doctor tell you signs to watch for to help alleviate your concerns about stroke or heart attack risks?
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2 ReactionsNo. He didn’t. But I’ve made a list of the side effects to record if I get any, how severe, when etc. The fact is I’ve already experienced some at age 83. Have had hair loss but not extreme, just don’t want any more, if possible. For a number of years have had peripheral neuropathy in my feet— started with just toes on right, now both feet. Fatigue and weakness comes and goes. I do have arthritic right knee but have avoided surgery successfully so far with periodic cortisone shots. And I’m slowed up but still mobile. And I am only in my first week of taking hydroxyurea so really don’t know anything yet. Not looking forward to bone biopsy on 12/1
Thanks for contacting me and for the additional information. Hoping I can muster through as I feel pretty good now and am optimistic despite this surprising diagnosis!
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1 ReactionHi, Flynn. I too understand your hesitancy to take the Hydrea. I am 81. I have ET w/JAK2 and platelet count is in the low 600s. Right now I only take baby aspirin…that is my choice, not the hematologist’s. I will be interested to see how you fare with the Hydrea. Good luck with the bone biopsy. I have read/heard that the doc can give you something that will ease the experience. Best wishes,
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3 ReactionsGood morning Pumpkin.....I posted a message to you the other day but I think I touched the wrong button and it went into cyber space because I could not find it so I will now try to repeat it.
I too have jak2 with ET and MPN. I been taking Hydrea for four years and seriously I would never stop. It keeps my platelets at a safe number and although I still have fatigue it is better than in the beginning.. Hydrea also helps with the other symptoms such as headaches, numbness in the legs and feet. Maybe it does not work the same for everyone but it works for me.
I hope you find the right treatment for you. God bless and I hope you find your answers
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4 ReactionsI am 68, been on hydroxyurea for 4 years, ET CALR mutation. I was told that hydroxy is pretty safe for most people for 20 years.
My dad also had ET. His platelets were over 1,000 when he was diagnosed at 75 with a leg clot, and he was hit with a big dose of hydroxy right out of the gate. It made him feel sick until he got used to it. I started hydroxy when my platelets inched up to 800, and I am on a relatively low maintenance dose of 500 mg per day. Platelets in 400s for three years now.
It might be helpful to ask your doc if taking a small dose now might keep your platelets low so that you can avoid a bigger dose later on.
Just a thought.
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1 ReactionGood morning morning Nohrt4me......I take 500 mg per day and I feel pretty safe with that. Sometimes my hemoglobin gets too low but taking a Hydrea every other day for a short period corrects that. I had to go off Hydrea for 4 weeks when I got the covid vaccine and I did not feel good at all during that time frame
Out of sheer dumb luck, I have never had any blood numbers that have been "off" except platelets.
I had the same mild cruddy feeling after covid, flu, shingles, and pneumonia vaccines.
The inflammatory nature of the ET itself can cause a variety of nuisance issues. For example, I am more sensitive to allergens and asthma triggers. I have had to go to unscented products for sensitive skin. I have very mild eczema flare ups if I forget to use moisturizer. I use Benadryl lotion or hydrocortisone cream for itching. But all this stuff is manageable.
Didn't know about connection to vaccines. I have been taking hydrea for 9 years. I had a flu shot and COVID booster a couple of days ago and last night my entire body was in pain. Never had a reaction before.
Hi Pumpkin1. Only been taking hydroxyurea for 10 days now, but no unusual side effects yet. I already have peripheral neuropathy in my feet but have had it for years. And it doesn’t hurt or sting I also don’t feel weak or fatigued. At least no more than usual. Biopsy 12/1. I’ll keep you informed! Don’t want to jinx it but feeling good so far. Hope you are as wel!
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1 ReactionDid you stop the Hydrea for three weeks after the covid vaccine. My doctor had me do that and I had a very rough three weeks. Don't know if I want to have the fifth vaccine if I have to follow the same procedure