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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (491)Comment receiving replies
Hello,
I'm 77 years old live in Seabrook, Texas I have PV JAK2 positive diagnosed 3 years ago but sure I had it sooner. I'm a patient at MD ANDERSON, Houston..I'm on hydroxurea and baby asa, the standard treatment. I did have a bone marrow but honestly don't recalled being asked but possibly was. ..I just went along with the treatment. If you are asked to have or want a BM I was nervous but it was not painful as I expected and have not been asked to do a repeat. We have a rare disease which makes this site more valuable. I have a medical background, did a deep dive (using AI) to learn everything I could about PV JAK2, what to do and what not to do always checking with my care team before making any changes. I'm used to my dose of hydrea it doesn't bother me at all anymore. I did snuggle in the beginning..I find few if any physicians in the community outside of my care team have not ever had a patient with PV JAK2 and don't understand it. BTW there is a difference in having just PV or PV JK2 positive im sure everyone is aware just thought I'd mention it.. If anyone would like to communicate or meet for coffee I would love it...Jacqueline Carey...
Replies to "Hello, I'm 77 years old live in Seabrook, Texas I have PV JAK2 positive diagnosed 3..."
@jackiecarey
Hi Jackie, please tell me more about the difference between PV and PV-JAK2. I've not heard of that distinction. I've heard of ET JAK2 which I was diagnosed with in 2023 but now told I have PV. They never say PV JAK2.
But obviously, I still have a positive JAK2. I'll mention this to my hema/oncologist during my next appointment.
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@jackiecarey hi Jackie I also am 77 and like you have never heard of PV or met anyone with this condition so all the info I’m getting on this site is super helpful, I think I had this for at least 3yrs because since been diagnosed a lot of the symptoms I’d had bone pain ,night sweats ,and itching and have spent a fortune going to see lots of different specialists and it was my local doctor who queried something on my blood tests that ended up giving me my diagnosis, I’m waiting to get the bone marrow biopsy and hopefully it won’t show much scarring I’ve starting 500mg hydrea and aspirin so hopefully I’ll tolerate it well and the next blood tests will be ok , I wish I lived near all you wonderful people so that I could meet up for a coffee and have a chat , I live in Ireland so that’s not possible but we can form our own little online club 😊