Hi Everyone,
Happy New Year!
I was diagnosed with ET and JAK2 in August 2021. My platelets had been rising (although low end) for approx 18 months and every time I queried this with my GP, I was told it was fine. I got a second opinion, then asked for a Haematology referral.
The Haematologist confirmed my condition to me and told me I was at high risk of a stroke. Too late, I'd already had a stroke12 years ago, aged 38 (which was touch and go) and another one 9 years later. It took me over a year to recover from each stroke and to gain confidence in speaking to people as my speech and thought process was badly affected.
I was started on Interferon injections in September 2021 and my platelet count started dropping, but for the last 2 months it's rising again!
Recently I've been experiencing pins and needles in one finger, then they move into my forearm. I'm also tired all the time and suffer from severe migraines, neck and jaw pain. Also I keep getting swellings/sores in my mouth :-(
Unfortunately none of my friends can relate to this as they have never heard of ET or JAK2. When I explain it's a form of slow growing cancer they then ask how long have I got and what's my prognosis!
I'm actually petrified of having another stroke as I don't think I wouldn't survive another one and think that the Interferon isn't working.
On a positive note, I have a Haematology appt coming up soon :-)
Hi gchick and welcome to the Online Community although I am so sorry to hear about your ET diagnosis, ET is on the rare side and I do understand the challenges of living with a rare blood cancer as I was diagnosed back in 1999 with a rare type of NHL
The New to Community is like our reception desk where we can signpost you to our various support groups and services so can I recommend you join our MDS/MPN/ET/PV/myelofibrosis (MF) group. This will be a safe place to talk to others who may have a similar diagnosis or treatment experience.
If you'd like to connect in with a group, you need to join the group. First click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New (Computers) or + (Mobile Devices). You will then see a dropdown menu so hit ‘Start a Discussion in New here, say hello’ and you are ready to go.
You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via web chat. This service provides cancer information, emotional support, benefits and financial guidance or just a listening ear.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
Talking to people face to face can indeed help a lot but during these strange times it’s not that available but do check to see if you have any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as they all tend to run Heamatology Support Groups and we have a few folks with ET in our local group.
Always around if you need further help in navigating the community.
All the very best.
