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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (747)Comment receiving replies
@leene808 I think one of the questions researchers are trying to answer is at what point can the mutation be detected before platelets start rising. The theory is that the mutation may occur many years or even decades before ET becomes evident.
Anecdotal info only, but I've met a number of women like me with a history of miscarriage who then started running high platelets in their 50s or 60s. Women with ET do seem to miscarry at higher rates, but maybe only correlation, not cause.
Glad to hear you are holding your own without TIAs and headaches! It's been 18 years for me, 8 on HU. So far so good, but I am 72, so didn't ET wasn't "active" when I was young, except maybe the miscarriage mysteries.
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@nohrt4me I went to a pulmonologist two days ago and he believes I have possibly pulmonary fibrosis now.. cause.... LONG TERM use of Hydroxyurea. Please look at other options if you can depending on how long you plan to be around. Hydroxyurea is not the best solution long term, but maybe only short term. I have since switched to JAKAFI per the recommendation of the Mayo clinic consult. IT has changed my life, now that I am almost 70. It seems my doctors did not tell me that I would eventually have poor lung performance due to the long term use of hydroxyurea. First I have heard of it, and I have been getting treatment for over 35 years. Come on ! explain this stuff will ya? So frustrated at times, but carrying on anyway!
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@nohrt4me
The bit about miscarriages is very interesting. I am not really sure how long I have had ET (tripple negative) but I also had a miscarriage with no explanation, in my early 30's. Have 2 daughters. Now 75 in July, going back on to Anagrelide from one year on HU. See hematologist next week, currently on both tablets, hopefully can drop HU then.