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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 1 minute ago | Replies (417)Comment receiving replies
@hipsu5 @colleenyoung ; @janemc
I have received results from my BMP. And I am happy to report that there were no leukemia tendencies and also no myelofibrosis or scarring. So it's just ET/JAK2. My platelet count came down a little in the last test in the beginning of March, but my hem/onc doctor asked me to take 500mg HU now 7 days a week. I really feel those two days! My head is very achy, congested in the afternoon/ evening. I also have a little bit of stomach uneasiness. Hopefully I get used to it again. All and all I feel lucky.
- Hipsu ..
Replies to "@hipsu5 @colleenyoung ; @janemc I have received results from my BMP. And I am happy to..."
@hipsu5 I started out on HU 500mg 7 days a week had headache but I have a lot of seasonal issues that give me a headache. After 10 months on HU Doctor changed me to 3 days a week I really don't see the difference yet it has only been a couple of weeks. Now after being on a 2 month testing schedule I am back to 4 weeks to see how I am doing on the 3 days. MY platelets were 700 and after 10 months they are back to 240. Hope the 3 days work I think I feel a little better . Good Luck
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@hipsu5
Congratulations on this wonderful news!!!!
HU can upset our GI systems. As nohrt4me advises, drink LOTS of water each day. I like yogurt's soothing effects too. You always take your capsules with food, right?
Your headaches may be from the ET itself. Have you ever sprayed lidocaine on the back of your neck? That can help. For me, HU greatly reduced the severity of my headaches. Hope that will be true for you as well.
ET may also be responsible for your congestion. Our mutated platelets are so weird that they can trigger our histamine response. With permission from my oncology nurse, I take an allergy relief pill every morning. Makes all the difference!