Dear Coralee/Cam:
Is your onc aware that your HGB is below 8? I am amazed that you aren't being treated for anemia. While I know that the exact level at which ProCrit or Aranesp is prescribed can vary from doc to doc and patient to patient, I think it would be very unusual for someone to fall as low as you are without some type of intervention. When I began to see Dr. Rubin of Florida Cancer Care who is my "local" onc (I also see one of the "wizards" at MDACC) he shared with me the National Comprehensive Care Network (NCCN)Practice Guidelines for Chronic Myelogenous Leukemia (You can find these at www.nccn.org). These suggest that Grad 3-4 anemia (which you definately have) be treated with Erythropoietin (the generic name for ProCrit and Aranesp). The NCCN guidelines for anemia treatment also suggest that at lower levels of hemoglobin, a transfusions with packed red cells might be appropriate. So you should definately talk with your onc asap about why you are not being actively treated for anemia. Just a bit of my story... I was diagnosed in December of 2003, and almost from the beginning I have had to take either ProCrit (most of the time) or Arenesp (for a short time - the every other week was too infrequent for me to maintain counts). In April of last year I was "off" ProCrit when my counts dropped below 8.5 and they slapped me in the hospital and gave me 2 units of packed red cells. I have been back on ProCrit (40,000 units once a week) since then and finally got my Hemoglobin up to the magic number of 12.1. So I have been allowed to back off and try taking a ProCrit shot (40,000 units) every other week. But when (not if, but when) the counts fall below 10.0 I will be back to every week. I can function well as a long as I am above 10, below 10 I feel a little tired, but in the low 9sI really feel the fatigue. When I was in the 8s I was dragging. If you were fatigued at diagnosis, you may have adjusted to feeling tired, which is a bit of a blessing, but I would guess that you would find you had much more energy if you were not as anemic. If you next appointment to see your onc is very far off, I would encourage you to call the office and talk with the nurse or P.A. who works with your doc about this. I would be interested in what they have to say. Cheers, Kathie (formerly in Kentucky) in Naples dx 12/06/03 800 mgs Gleevec 12/03 to 4/06 600 mgs Gleevec 4/06 to present 40,000 units ProCrit weekly (or biweekly) ccr since 7/20/04 pcru since 7/19/05 #676 in Zero Club --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
