As someone who has been 'fobbed off' by GP's in the past only to go on to have a couple of major surgeries - not MPN related - I am very particular about asking questions at consultations with my haematologist.
I thought one of the four 'gold standards' for confirming a MPN (Myeloproliferative Neoplasm) was a BMB (bone marrow biopsy).
However, apparently this is not required these days because a full blood count is taken as well as a more specific blood test which may pick up mutation(s) and, if present, will shows the allele burden as a percentage. That's what I was told.
OK, this does save us the pain of the BMB but I don't think a blood test would show if there was any fibrosis or progression.
Looking at other MPNers stories on other sites, it seems to be a lottery of where you live, if you have one or not.
Sorry, I just wanted to get that off my chest. Thanks for reading.
Hi SUZE 99dff196 and welcome to this corner of the community.
I am Mike and I help out around our blood cancer groups but my journey is rather different as I have been on my journey with 2 rare types of T-Cell Non Hodgkin’s Lymphomas for over 25 years.
I can’t give you an answer to your question but let’s see if any group members have been told the same.
You may want to check out MPN VOICE UK for some good information and have various support platforms as well as their support line Monday – Friday between 8 am & 5 pm: 07934 689 354.
Hi Suze SUZE 99dff196 yes my journey was rather challenging due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am over 9 years 10 month out from my last treatment, I turn 70 this year and I am living a great life.
