Essential Thrombocythemia: Looking for information and support

Hi my name is Sylvia and I also was diagnosed with high blood platelets about I think 6 months again . Dr also prescribed hydroxy urea generic brand name (hydrae)I had about 1750high platelets It’s down around 540 at one point 380 . I am so confused as to be taking this medication . I asked what caused this to appear and she said she does not know . I notice that when I drink regular sugar , coffee it triggers my body and I get pain all over like kind of swelling pain if that makes any sense . I drink baby aspirin as well . I sometimes think I need a second opinion for I’m afraid taking hydrea might give me another form of cancer … Mysty I live in Austin now but my home town is El Paso …I’m here for you all .. u all are not alone ..

Not certain this is going to post as I still don’t have a password , so this will be brief. I am 80 yrs old and this year was diagnosed with ET. Platelet count has varied between 525 and 625 this past year. My hematologist wanted me to take Hydrea, 500 mg twice a day. I am hesitant to start at this stage of my life and also because my platelet count is not as high as many. I am told I have the JAK2. I have not had a bone marrow biopsy and it hasn’t been suggested. Any thoughts?

Thank you....I will take your advice.

Feel your pain - i had the same whirlwind experience - good metaphor. 🙂
Certainly, get another opinion while reaching out to support group such as The Leukemia & Lymphoma Society, 3 International Drive, Suite 200, Rye Brook, NY, 10573 keeping notes along the way of what works or doesn't work for other people - then share with your oncologist. Be sure you share with your primary doctor as well. ALWAYS research any new drug you are prescribed to ensure it doesn't impact in a negative way what their trying to accomplish. Good luck and hang in there 🙂

Hi @cajunqueen ~ So happy to hear some good news from you with the drop in platelets! It’s always encouraging when the meds start working. It sounds like you have a great hematologist keeping tabs and following through with your treatment!
You have a strong sense of faith and that’s a driving force in your life…together with your positive outlook. I think positivity is a super power. ☺️

Keep us updated, ok?

Hey there! A little update for you all....after taking 500 mg of Hydroxyurea daily for 3 weeks, my platelets came down around 60 points, but it is still in the 780 range, so my Hematologist is having me take 500 mg 6 days a week and 1000 mg once a week (on Saturdays) for 4 weeks and will do labs in November to see where my platelets are again. She will then tweak the meds again, depending on what my body does with the extra dose once a week. Thank you for your comments and health updates and 'medical drama', as Lori stated above! Let's continue posting about our journeys in this season of our lives to help each other with positive vibes and shining His light in all that we do, because He has each and every one of us in the palm of His hands.
Blessings,
Tifnie Queen

Thank you for your response....waiting on iron results to see if it too has gone up. I hope so.

My iron is low and to not disturb my blood count that came down on there own my doctor canceled the iron infusion and put my on every other day iron pills and tested after 3 months ferritin came up slightly and other 2 numbers fell down and platelets slightly raised above normal. Odd same happened with you. I wish I could help. It’s very c

Recently diagnosed with essential thrombocythemia and primary myelofibrosis with MPL mutation.
Blood transfusions and iron infusions due to no iron in bone marrow and very low hemoglobin. Still in a whirlwind. Platelet count keeps climbing, currently 1060. Taking 81 aspirin daily. Meeting again with hematologist on Monday. Not sure what next steps will be or what to ask. Any advice?

I’ve done the very same thing, tonight