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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 3 hours ago | Replies (419)Comment receiving replies
@colleenyoung ; @janemc ; @lea123
Hi Colleen, Now I have had my BMB and ultrasound for spleen. The BMB went well. I had conscious sedation and local lidocaine, - so minimal pain. All BMB results are not out yet.
My spleen was normal size as well as other organs like liver etc. 🙂
I am still on HU 5 days a week and the platelets have not really come down much in 3 months. The last count was 646. 🙁 I have an appointment to see my hem doctor in about 3 weeks.
Hanging in there.
- Hipsu
Replies to "@colleenyoung ; @janemc ; @lea123 Hi Colleen, Now I have had my BMB and ultrasound for..."
@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 ..
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@hipsu5
So glad to hear your BMB procedure went well, and that all is well with your organs.
Of course you are eager for your platelet count to go down.
Please be aware that, while HU works very quickly for some people, for others patience is required.
It took nearly 2 years for HU to bring my count down from the 700s to the 400s.
Hang in there! Hope your next appointment brings more good news!