Meaning of 4.4 myeloblasts, all MDS stidies Neg
 

I had my first bmb in 5 years. I have PNH, in early 60s. Cellularity 25%. Fish MDS panel, cytogentics, karyotypes all negative.

Marrow is absent neutrophils (new). ANC suddenly fell from 1.1 to 200-300, had my first neupogen shot.

How worried should I be? Last (2009) bmb had zero blasts. My local hem didn't give me a dx. She just said 5 or more blasts...leukemia. But I know the blasts need to be much higher to be leukemia - correct? I know low risk MDS dx includes <5 blasts but what if everything else looks normal?

Will definitely keep on eye on this -repeat bmbs and see an MDS/leukemia expert within a couple of months, probably Mikkael Sekeres at Cleveland Clinic.

Good idea to see another Dr.

Don't worry until you have to - and before worrying too much it seems like you need to see a specialist who will provide you with a diagnosis and can answer all your questions. I think 4.8% is within normal range - you need much higher blasts with MDS to be considered to have converted to leukemia - I think 25 or 30% - I don't know anything about neutrophils or why they'd be low with AA or PNH -or what the significance of blast counts are with those problems. Who made that diagnosis - your local hematologist? Have you seen the BMB report?

Yes the local hem did the bmb and told me it's neither AA or MDS. Then she said it's not frank AA. She pointed out the blasts and then mentioned 5% and leukemia but I didn't hear exactly what she said. It's a medium sized decent hospital. I have appts with different hems at the best 2 local teaching hospitals in January and will see what they say. I did see the report.

I do know a correct dx is difficult and I know how rapidly some cases can evolve. So for sure I feel I have to go to a very specialized hem/onc and center for a repeat bmb and evaluation and not wait too long. I just was surprised since I'd assumed AA was back. I was already researching where to have ATG done. But at age 62 I know MDS is a really possibility, if not now then in the future. I used to go to aamds conferences so I do know the resources out there.

Ha, 17 yrs ago I was wrongly dxed with MDS and told to get an immediate transplant. It was a real ordeal to find the right dx. I hate having to go through that again.

To give the Dr. the benefit of the doubt, I would guess you heard wrongly. I was diagnosed on my first biopsy as MDS/AML because my blasts were at 19 percent and close to the recognized threshold of 20 percent. Within a week I had my second BMB which showed 9-11 percent and MDS. I think under 5 percent is something to note, but doesn't necessarily indicate MDS if all other factors are "normal".

Good luck and keep us posted.

Thanks. I'll clarify with the doctor. I agree she must know her stuff, she does quite a bit of oncology work. Most importantly she promptly managed my infection risk and did a full work up right away.

Have a good new year everyone!