Essential Thrombocythemia: Looking for information and support

I'm not aware of migraines being a known symptom of high platelets but in the 5 years leading up to my ET diagnosis there was a steady increase in my platelet levels in my annual physical's CBC. My husband, who has had migraines since he was in his 20s (he's 75 now), recently experienced an increase in his migraines with an elevation in his platelets. His count is still well within the normal range for platelets but there does seem to be a correlation.

Hi,
I was diagnosed with ET 6 weeks ago and started on HU and low dose aspirin due to my age. I’m interested in your report of migraine. I had rare incidents of visual migraines over the years prior to menopause, then an increase in frequency this past 2 years to experiencing episodes twice a week. I noted a sharp drop after being on the Hydroxyurea, having had only two brief episodes this month. Does anyone know what the relationship is to ET?

My ET was discovered through blood tests to diagnose other issues (I ended up being diagnosed with collagenous colitis and pancreatic enzyme insufficiency which were the basis for the symptoms I was experiencing. The ET diagnosis was a by-product of this journey). The only ET-related symptom I had prior to diagnosis was bi-monthly migraines. They occured like clockwork every two months. Prior to menopause in 2008 I had migraines but they were random and essentially stopped at menopause. They started up again in June, 2022 and by that Fall began occurring bimonthly. ET was diagnosed in the Fall of 2023 and once I started HU they stopped and have not reoccurred.

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.

66 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?

These 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.

Thanks for sharing this information. It was very very interesting.

Thank 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!

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

It will be interesting to follow this .