New diagnosis of MPN - possible MF

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Hi,

Today I was told by the consultant that my many blood tests have revealed I have MPN, probable MF but awaiting bone marrow biopsy to confirm. 

I feel so lost and confused. I have been suffering daily headaches and swollen lymph node in my neck for a year now. My bloods showed elevated levels so my doctor referred me for further testing. 

The consultant said she is worried that the MPN may have caused blood clots in my sinuses or may have developed into other cancers especially the lymph node. 

I am struggling to take all this in, and to understand what this could mean for me and my family going forward. 

Sorry for the rant but thank you for reading, if you have any tips for coping then I would be grateful for any advice you are willing to share. 

Thank you all in advance. 

  • Hi , sorry to hear that you have had to join us, you're in a great group for support and friendship. 

    I also have a blood cancer, MDS, but mine is quite the opposite to yours in that my blood constituent figures are low. I was diagnosed in March 2015 and I have treatment every week in the form of a self administered injection. 

    I don't know if you have heard anything about a bone marrow biopsy, before I had mine I hadn't heard of reports that it was very painful. There's a lot of prodding and probing by the doctor performing the biopsy and a sharp pain as the needle goes in but I have had worse when I used to have injections in my wrists. That was painful. I suppose it depends on how painful you think anything is. 

    Yes, at the outset everything is confusing and worrying, I was 57 and didn't think I'd reach 60.but now I'm 64 and still here. You'll know more in the coming weeks how your haematologist is going to treat your cancer so I wish you good luck and I'll keep an eye out for a post for you. 

    Just one thing before I go, don't apologise for ranting, it allows you to let some steam off.

    Take care and stay safe David

    Tvman 

    Love life and family.
  • Thank you so much