MPN - ET

FormerMember over 4 years ago

1 reply
52 subscribers
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Hi folks

is this the right group for MPN-ET

I‘m 43, I’m single and have two children (6 and 14). 31 January this year I was diagnosed with MPN - ET after having a bone marrow biopsy. This is after a gradual but increasingly steep decline in my health, fatigue, sweats, unable to participate in high intensity training anymore.

I’ve gone from climbing mountains and doing total warriors and boot camps to gentle flat dog walks for 10-15 minutes and I’m still constantly exhausted.

I’m struggling to accept that this could be my new norm. I’ve put on 3.5 stone in weight and I just feel rats.

I’m not sure if I’m in the same boat as some of you though and I don’t understand all the language you are using.

I guess my first question is, is this the right group for me?

thanks in advance

greg777 over 4 years ago

Hi MB2412,

I am by no means a medical expert but I am not sure that MPN and Myeloma are necessarily linked. They are both blood cancers, Myeloma is a cancer of the plasma cells (the ones which create antibodies) whereas I think MPN is a problem with other types of blood cells (eg, red, white or platelets).

Therefore, it is likely that your treatment pathway for MPN will be different from Myeloma. I just did a cursory Google check (not often advised) and I didn’t recognize any of the treatments. It may well be that you are better aligned to Leukaemia group as I think there is more cross-connection between MPN and Leukaemia?

What I can say though is that I very much recognize the symptoms you are experiencing and the feelings associated with that. I was a relatively fit football-playing 36 year old on diagnosis and so it was very hard to go through the feelings of tiredness and inability to look after myself that a blood cancer diagnosis brought. Are there any other wider family members or friends that you can rely on to support you at this time? One thing I will say with blood cancers is that as soon as you get on treatment and the treatment starts working, the improvements to physical health tend to follow on quite quickly. It was a rough road for a while but I am back now to playing football again and feel almost as fit (95%) as I was before all this kicked off, so I’m really hoping you will find the same somewhere down the line.

Hope this helps

Greg

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