I saw my haematologist today and as my counts have been low for a bit now and I'm getting more symptoms (post ET/MF) he wants to do the dreaded bone marrow biopsy. I asked for sedation but apparently they can't do that any more but can do a general anaesthetic. That will do me! The low counts could be a sign of progression along with more sweats and more bone aches. The BMB will give more clues. I was a little bit alarmed to hear that with counts as low as mine it would be difficult to tell if it was progressing to AML. He has lowered my dose of Jakavi and reduced the iron chelation protocol (I have very high ferritin from transfusion dependency) in order to help improve my counts. The fact that I have battled my MPN for a total of 23 years now is giving me confidence that I can go on battling but I have to face up to the fact that this is progressive! My glass is still very much half full and I don't like confronting what could be happening - and I have to admit to being just a little scared at the moment. I have four sons who are all doing well in life, one granddaughter and another grandchild on the way so I have a lot of positives to concentrate on.
Sorry, I just needed a bit of a rant to people who understand!
Keep well everyone, Jan