Update on possible transformation to M f

[lizzziep]

After worrying all night about what the clinical specialist nurse said to me yesterday I phoned back this morning for clarification.

She said maybe she shouldn’t have inferred it was changing to leukaemia! Also that it may not be changing but because I’m still anaemic even after an iron infusion the consultant wanted another bmb to check whether the fibrosis noticed in the bmb in July had got worse. She said changes in the bone marrow could be leukaemic but might not be, could be mf.

I asked for my blood results, she said she wasn’t able to email me them but read some out -

Platelets earlier this year were 474 but after Anagrelide was reduced to help with anaemia have now risen to 578 (on Tuesday) I have got a streaming cold at the moment so that might allow for some increase.

White blood count over the last year has varied between 7.8 and 9.1, so on the high side of normal

Hgb has been as low as 97 and even after the iron infusion is still only 108, so still low.

I have always been iron deficient, apparently my body doesn’t absorb it properly.

So I do feel a bit better for that information. I particularly wanted the white blood cell count as one reply mentioned that leukaemia involves high white counts.

Thank you for all the replies and info.

[katiewalsh]

hi Lizzie. Sorry you’re anxious about your blood work. All MPNS are a type of leukemia; ET, PV & MF. So what you were told is confusing. I think you need to get the information clarified. From what I’ve read on here, it’s when your numbers are extremely low that your bone marrow is filling up with too much scar tissue. And that’s when MF has progressed. Hope this relieves some of your concern. Katie

[lizzziep in reply to katiewalsh]

Thank you, it was how the nurse spoke about it that worried me. I know there was some fibrosis in my July bmb, if it’s increased at least they’ll know and can act appropriately with medication.

[monarch5000]

A WBC of between 7.8 and 9.1 is totally normal! In acute myeloid leukemia, the WBC is far higher - like around 50 - 200 ! I'm not a doctor, but you appear to have a routine and mild case of ET. In the USA and especially in Denmark, some hematologists are open to prescribing low dose Pegasys interferon for mild cases of ET because the drug would likely bring your Platelet count down to normal, maintain or reverse your moderate fibrosis level and in that way possibly help enable your Hgb to rise on it's own, thus helping to maintain or improve iron levels.

[lizzziep in reply to monarch5000]

Thank you. I think the nurse got carried away with telling me my marrow could have changed. If it has at least they can change the medication.