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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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I am taking Hydrea 1000 mg a day for essential thombocytosis. I wanted to ask if I can still get the covid booster and the flu vaccine. My doctor appointment is on 12/13. I would like to get these vaccines as soon as possible if no reaction would occur. Thank you so much for your help! God Bless
I am presently taking 500 mg Hydroxyurea every other day. Hematologist suggested the new variant booster. I did get Pfizer, I had no side effects. I iced and exercised my arm.
Hi Eileen, thank you for your response! Do you have extreme muscle pain
with taking this medication.
I forgot to mention that when I got my flu vaccine they told me wait at least two weeks before getting Covid vaccine.
I am on a much lower Hydro dose than you….right now 500 mg every other day. I do notice that my legs have been aching, I see hematologist in a couple days and hope I can continue on this lower dose.
Eileen
Your story sounds just like mine. My platelets started rising slowly over four years. It hit 621 so he sent me to a hematologist. After extensive labs and bone marrow biopsy I was diagnosed with ET JAK2. I am 78 and was already on a blood thinner for AFib,
I was started on Hydroxyurea 500 mg daily. After two weeks I started with daily headaches. I was taken off it for four weeks and then started again 500 mg every other day, Headaches are much less now and not daily.
An important thing to remember is to drink a minimum of 64 ounces of fluid daily. HU is toxic so this is needed, If you get any mouth sores remember to rinse mouth with warm salt water.
Eileen
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1 ReactionHi all. I’m Jacqueline from NZ. This is my first post.
I have been struggling with various symptoms for quite some time and have just been dx with Essential Thrombocytosis associated with the MPL gene mutation. I’m 63. Actually it’s a relief to know what is wrong … I’m feeling more myself again. Obviously it’s not a great dx but not the worst it could have been either. It has come after months of high platelet counts (over 1000). Have been on low dose aspirin during that time.
I will see the haematologist in five days and indications are that I will be put on Hydroxyrea.
I was SO pleased and relieved to find this group and begin to read of familiar stories, symptoms and experiences, especially peoples’ experience of this drug.
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8 ReactionsUnfortunately, I had bad side effects—extreme fatigue, shortness of breath in situations where it never happened before, and slow but steady hair loss. Not to mention mouth sores I have MPL mutation but my diagnosis changed from ET to prefibrotic myelofibrosis after I had bone marrow biopsy and aspiration. I should add that I am 83 and never had any serious health concerns before this. I was put on 500 mg of HU which brought platelet count down from 611 to 250 ZBut side effects were too much for me. Now seeking another solution with another doctor with specialization in leukemia concerns. Good luck to you. Hope HU word for you. If not don’t give up. Find another solution as I am.
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3 ReactionsWelcome @jacquelineh. You are not alone. If you use the Search bar at the top of any page, you can search for discussions about essential thrombocytosis and for hydroxyrea.
Have you started treatment? How are you doing?
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1 ReactionHello, friends:
I have ET with the MPL mutation, diagnosed October 2022. At first the hemo/oncologist put me on a low dose aspirin, but it didn't bring my platelet count down (high 600's) so now I am on 500 HD plus the aspirin every day.
Last blood test showed platelet count in the high 400's. I have had side effects of nausea, fatigue, and anxiety, which I never had before (except for the fatigue). When I asked my P.C. doctor about eventually getting off the HD, she said no I wouldn't be able to. So I guess I will learn to adjust.
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1 ReactionI have just been diagnosed with ET MPL 515. Looking for any helpful information and advice. Seeing hematology r who currently prescribes 325 mg aspirin. How high do platelets need to be before recommending HU? Mine are at 478 last visit. What are best websites to find sound information on the disease? Thank you all who are sharing experiences.