Myleofibrosis

[Erik]

Hi ,
i am new to this forum

I am 61 y , and 3 y ago i had a diagnosis for ET ( i had 900K platelets ) .
I started with hydrea ( 2 pils /day ) ; 4 months later i got severe pain in my hips ; lowering Hydrea to 1 pil/day solved this ( platelets where then 700K );
later on the platelets decreased ( +-570 K ) and i continued hydrea ( 1 pil in 3 days ) .

Till 9 months ago ; my WBC ( before 14K ) were up to 24K ; platelets were 480K ; Hema 10.
I stopped taking Hydrea.
I did a BM test in may and they found nothing special ( they did 5 different tests on it ) . They asked advice on the best external specialist , and he said its Myleofibrosis.
The bloodtest 6 and 3 months ago and now showed the same : WBC 24K , platelets 470K and Hema 10.
The doctor told me there where some things in my blood that shouldnt be
there ; blasts was 1,5%.
At present i have not much symptoms ; faster tired and short of breath sometimes .
Does anyone recognize this situation ? Is this MF or something else ?

[Birgitta-A]

Hi Erik,
You know there are several support groups for patients with Myelofibrosis - most patients at this forum have Myelodysplastic syndromes (MDS). Here is a link to one of the groups for Myelofibrosis: http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=MPN-NET
Kind regards
Birgitta-A
73 yo, dx MDS June 2006. Dx changed after BMB to Myelofibrosis. Dx changed again to MDS after neutropenic fever Sept 2007. Thalidomide + Prednisone with positive results since 2010.