[tytd]

Dear Patti and Dean,
I have followed your story and am very sorry that the Dacogen is no longer working for Dean. I felt compelled to write and tell you to perhaps confront your oncologist about his strick cut-off of "below 8" for transfusion. It sounds to me like he is treating a number instead of a person. I think some oncologists apply the same guidelines for RBC transfusion that they use for patients on chemo ( who may have a normal bone marrow capable of regenerating normal RBCs) to MDS patients whose marrows are sick. I would refer him to a recent article by Dr. Fenaux entitled "How I treat low risk MDS". ( I know Dean has high risk disease). In speaking to the question about RBC transfusions when other therapies fail he writes, " anemia will eventually become resistant to all available drug treatments,......and will require repeated RBC transfusion. For those patients, it is recommended to administer transfusions at sufficiently high Hemoglobin thresholds (ie, at least 8 and 9 or 10 in cases of comorbidities worsened by anemia (e.g. coronary artery disease, heart failure) or in cases of poor functional tolerance). In addition, a sufficient number of RBC units should be transfused each time, over 2 or 3 days if needed, to increase the hemoglobin level to greater than 10 and thereby limit the effects of chronic anemia".
I know he is talking about patients with low risk disease but I think this would also apply to patients like Dean to preserve his quality of life. I think, too, that in males, especially elderly males who might have heart and lung issues, that a trigger below 9.0 instead of below 8.0 might be more reasonable especially if he is symptomatic. Does he get 2 units at a time?? If your oncologist will not listen to you maybe you could have Dr. Lancet at Moffitt speak with hem about this issue. Do not be afraid to stand up to your M.D. -- you are partners. Good Luck tytd