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Myelodysplastic syndromes (MDS): When do you need to start treatment?
Blood Cancers & Disorders | Last Active: Aug 5 7:58am | Replies (26)Comment receiving replies
I just went from blood work monthly to every three months. I think either God is healing me or bone marrow is not the same at every location in the hip. One oncologist is uncertain about my theory, but the other agrees with me. Maybe you can ask a pathologist where you work? Right now my blood work is stable. White blood cells are coming back to normal. Red blood cells are not terribly worse. Hemoglobin is hovering about 10-11. Oncologists are talking about the mentholating agents. I want to avoid becoming transfusion dependant. I may ask for another biopsy sometime next year. The differences between the 3 I had are a little concerning. My Ipss-R and -M are both low, even with the biopsies showing rxcess blasts because my CBCs are not horrible. I had an aunt who had Myelofybrosis and then developed AML.
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Hi @janetlen. It’s interesting that you had 2 questionable bone marrow biopsies and the 3rd was clear. That would be good news. From my understanding (and I’ve had 13 of them) a bone marrow biopsy is basically a point check…looking at a single point in your marrow. So there may be differences if biopsies were taking from other areas. It can take a while for conditions such as MDS to proliferate so not every area may be involved at one time.
The samples taken are a core specimen of the marrow and an aspirated sample of the peripheral blood also from the marrow. When analyzed, these detailed results give your doctor a picture of the condition of your marrow and its ability to produce healthy blood products. But again, it is from a single area.
A better barometer is the overall condition of your peripheral blood…blood taken from a routine blood draw. The reason being is that blood changes come from within your bone marrow. When there are an excess of defective cells within the marrow they begin to spill out into the peripheral blood. If the peripheral blood is normal, blood numbers are stable, and the biopsies look good, then this condition most likely isn’t proliferating very fast which warrants the watchful waiting/active surveillance mode. The fact that your doctor has lengthened the leash between visits says that they’re confident that this isn’t developing very quickly. So you may not require a transplant any time soon unless things change.
Just keep up with your routine blood work and in the meantime live life like you did before the diagnosis. What led you to the diagnosis? Were you experiencing symptoms or was this from a followup to routine blood work?