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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (747)Comment receiving replies
@kat260
I've not been back in this thread for awhile and am trying to catch up.
A belated welcome to the group and a belated reply.
While what is done is done, I'm fairly convinced my JAK2 mutation/ET may have been brought on by the Covid shots (they aren't traditional vaccines, btw) too. They affect our RNA. In my My Chart medical records from my doctors, I can view numbers and graphs of my lab test results going back to the beginning. My platelet and some other blood count graphs were flat until the tests done at my next routine appointment four or five months after taking the Moderna shots, when my graphs spiked and started going crazy. I showed the graphs to a relative with a doctorate degree who works for the CDC and she agreed this looked very likely. It's just too much of a coincidence otherwise, happening so suddenly after years of flat normal results. (I haven't mentioned this before, because "tin foil hat," but just know you aren't the only one with such suspicions.) Of course there's nothing to be done about it now re our ET, so no use crying over spilt milk. (However, I don't take the Covid boosters and to my knowledge have never had Covid.)
Your post also highlights the different protocols that different doctors use in treating ET. My oncologist started my Hydrea (hydroxyurea) when my platelet count first went over 600k, a dose of 500mg every day, earlier this year. I'm also on 2 low-dose 81mg coated aspirin tablets a day to make my platelets more slippery and less likely to clot. I have a family history and am now 79, so at high risk for several reasons.
Prayers and best wishes for a good outcome with our blood disorder. I'm thankful there are treatments for it even though I don't like the notion of a "chemo" pill for the rest of my life.
Now I'll continue reading other posts in the thread to catch up more, then I'll update some on my treatment.
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@cec2 Hi and thanks for your reply. I haven't checked in here for a while either.
Interesting. As time goes on, I'm sure we'll find out more about the effects of the covid shots and covid itself. Fyi, I had 3 shots of Astra Zeneca (the one related to thrombotic events about 2 weeks after the shot, in people over 50). My platelets started increasing a few weeks after my first shot. I only know this because I had regular blood tests to monitor other conditions and my GP showed me on a graph which was pretty obvious. I have had covid 3 times and don't do any covid boosters.
Regarding the different protocols in treating ET, I thought I'd give you an update as my treatment plan has changed dramatically.
With my original Haematologist I was only on 1 asprin 100mg, platelets 900's. When I changed to an MPN specialist 3.5 months ago, I increased to 2 aspirin and added 2 x 500mg Hydroxy per day. My platelets dropped from high 900's to high 200's in just 8 weeks. I was then reduced to 1 aspirin, 1 Hydroxy. I'm currently on 1 Hydroxy 3 times per week but I also started Pegasys 45mcg mid July. I've now had 2 increased doses of 67.5mcg. So far so good with main side effect being fatigue but it's manageable. I feel very lucky so far and hope I will remain well as the dose is increased with the aim to drop the Hydroxy altogether.
Platelets 326 last week, white cell count had been increasing slightly but now in normal range. Liver numbers also slowly increasing, still higher than normal range but nothing crazy. I'm now 61, also have family history and a moderate calcium score so I am also high risk.
Wishing you all the best in your treatment. It really is a lottery and there seem to be varied treatment plans depending on who you see. My MPN specialist is confident that there will be other treatments upcoming in the not too distant future so I am ever hopeful for that.