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Essential Thrombocythemia: Looking for information and support
I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!
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Lots of us on this forum take HU.
Many of us have no problems with it.
Unfortunately fatigue, headaches and dry skin are "gifts" of ET itself.
They're indicators that getting our platelets under control is essential.
We are so fortunate there are options to treat our cancer. Work with your own doctor, and you will find the treatment option that's best for you.
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6 ReactionsThis is exactly what I heard from my two ET doctors. According to them it could be real trend. Or it is just because more and more tests are being done to disclose this ET medical condition. Most of the time ET is symptom free.
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3 ReactionsIt will be interesting to follow this .
just want to share what I came across on internet regarding ET and treatment options. This seems to me to be very good discussions among doctors specialized in the ET disease area. The ET case discussion is in Ep 14 to EP 19. I found it very informational. https://www.targetedonc.com/expert-perspective-tumor-board/myeloproliferative-neoplasms
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10 ReactionsThank you so much for proving this link, sdduan.
It's really interesting to hear high-level MPN specialists talking about ET. In just a few minutes, I learned a lot.
My favorite line: The progression of ET to myelofibrosis [MF] or acute myeloid leukemia [AML] is not seen very often.
Cheers!
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3 ReactionsThanks for sharing this information. It was very very interesting.
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2 ReactionsThese discussions are very interesting. Thank you for sharing. I will watch them again. So much to learn when you’re new to this experience.
It is actually way more complicated than I was originally led to believe.
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3 Reactions66 year old male, diagnosed ET with JAK2, June 2024.
Last week my haematologist gave me the choice of starting HU or Besremi.
On his advice, I opted for the Besremi (injection self administered every two weeks) and was told approval takes about one week. Fortunately it will be covered by my health fund.
The health fund has already rung me to tell me once it is approved I have to see my family doctor who needs to order an ECG and a series of blood tests. I also have to make an appointment at the health fund clinic to have my first two injections supervised by a doctor there.
I travel a lot (home to arrival can be 10-20 hours) and am a bit concerned about keeping the injection at 2-8°C (36-46°F) until I use it. It is difficult and expensive (I know in the US it sells for USD8,800) to replace.
Although most hotel rooms have fridges, I often find they are not working properly (or at all) when I arrive in my room. I am looking at buying https://4allfamily.com/collections/all/products/portable-medical-fridge-usb-insulin-medicines
Does anyone have any experience with it? or have any other suggestions?
Hi,
After you visited your ENT, was there any connection between frequent sinus infections and your ET diagnosis because of high platelets? Also, did you any health problems beside sinus issues prior to your ET diagnosis?
Thank for sharing.