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Thanks to all of you who replied. Both of my oncologists believe my counts should have rebounded by now. My medical onc first mentioned MDS and made it sound like a little cold or infection, nothing really to worry about. When I started finding out about it through other sources and since have had a friend die from it in my cancer support group, I became alarmed. Now, I am really not as worried--it seems my counts are stable or slightly improving. However, the fatigue is unmanageable. I am a 54 yr old woman with a young family and I just can't cope. Well, I can cope,but I've learned to rest frequently and spend my energy wisely.
Zoe, are you saying the lab made a mistake with my reticulocyte values? The report I have clearly states 0.2 for reticulocytes and abs retic at .0076. It also references them as low. Because my onc is away right now, I was only able to talk to her assistant, who told me the doctor notes that said she was ordering the retic count because my MCV was consistently high. The assistant said she would be doing a bmb if the reticulocytes were high. But she is brand new at the job, and frankly, I don't believe she understands. I do wish I could talk to my onc, but I was hoping that in lieu of that, perhaps someone could tell me if the low reticu. values perhaps show why I am constantly exhausted even if my hgb and hct are ok? When I google low reticu, I seem to keep reading that my bone marrow is failing to make rbcs? But why would the other hct/hgb be just low normal?
Marlene, my internist checked all of those last year, and I was so healthy, it blows my mind. My B12 was off the charts for high. She refuses to investigate it any further because she believes it's in the realm of oncology/hematology.
My oncologist has compared my right before treatment counts with what followed, and I was normal.
I have been fearing getting the bmb done because it really looks painful. She wants to do it in the office--she says it feels like getting a tooth drilled. And that I will just feel a little prick. In one way, I want to know, because I'd like to have an excuse for the fatigue and inability to function in everyday life; on the other hand, I think that as long as my symptoms seem so mild other than frequent infections and debilitating fatigue--why worry?
Marlene, is your husband's mds a result of prior chemo? Zoe, is yours? One more thing my onc said several months ago is that I could just be one of the 5% of people who never bounce back from chemo--that my counts are permanently low. But the other things like MCV,RDW-SD and MCH concern her.
Thanks for listening to my rambles...
Connie
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