I wondered if anyone’s aware of any meaningful research in to CHRONIC MYELAMONOCYTIC LEUKAEMIA - or is active in collecting evidence/symptoms etc from fellow-diagnosed folk like me.
Diagnosed 2019 - likely 5 year life-span.
Just to start things off:- two significant factors in my case
- My Monocytes readings - the evil one to watch - hasn’t changed much.
- Anaemia is my problem. Frequent transfusions are so far the answer.
To lessen frequency of transfusions I was given a 4-weekly course of RITUXIMAB. It ain’t worked!
Symptoms prevailing change like the wind - and attack and disappear suddenly and at random.
Known ones are bruises - with no cause
Nose-bleeds and inevitable slow-to heal cuts ( via essential blood thinners
Fragile thin skin - with the appearance such as my 102-yr old late Mother-in -Law’s- (I’m 72) due to (albeit low dose know) steroids.
Won’t list the lot but would be interested to compare notes as well as participate in any research
I have kept a diary-blog since day 1!
A dystopian book in the making!!