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Hi @casevin7 JAK2 is an acquired mutation so it is possible to develop it in the future. But it’s not something to dwell on. It would drive us all crazy trying to predict what mutation could happen in any of our millions of cells.
While the JAK2 mutation isn’t passed down generationally it possibly may run in families. The suggestion from some research is that there “could” be a link through generations of being potentially genitally susceptible or there could be a vulnerability in a genetic pattern that might run in families. Mostly they’re just random: a stray gamma ray passing through the earth, a DNA strand that didn’t split perfectly, who knows… but my hematolgist said it perfectly “S*** happens” and there’s just no point dwelling on the hows and whys.
https://www.healthline.com/health/myelofibrosis/what-is-primary-myelofibrosis#symptoms
With your familial history of blood cancers it’s pretty reasonable to want to know what could potentially happen down the road. Would you be open to getting a second opinion?
Are you following any treatment plan besides the occasionally phlebotomy? Any aspirin therapy or Hydroxyurea?
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I have pv cancer and am experiencing breathing issues. Evan with my oxygen level saying I'm great. But still not getting enough air
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Thanks for the reply. I am trying to find answers. I am on my second oncologist/hematologist. I really liked the first one but he moved two states away. I also live in a small town with limited access to doctors. I tried to get into MD Anderson in Houston but was denied access.
I tried the aspirin route but it was too hard on my stomach so I had to quit. I am not on any other meds for this condition as my doctor seems to believe that I do not have it. But my symptoms are all listed on PV sites. I did not know I could get a video appointment so might look into that.
I am due for labs tomorrow and expect a phlebotomy next week since my hematocrit is always high. And my symptoms are pretty unbearable just now. They usually improve slightly after the blood draw.