Meaning of 4.4 myeloblasts, all MDS stidies Neg

[Susan]

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.

[bailie]

Good idea to see another Dr.

[PaulS]

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?

[Susan]

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.

[bailie]

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.

[Susan]

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!