Hi Gary,
I will try to answer your questions. You know MDS foundation has a very good handbook for patients with much info about MDS.
1. Modern clinics transfuse for symptoms of anemia. Planning for transfusion should be made on an individual basis by the patient and the physician, taking into account co-morbid illness as well as quality of life issues. No universal trigger or target for transfusion is recommended. Tell them at your clinic that congestive heart failure is a common death cause in MDS and that patients with too low HGB can develop congestive heart failure.
2. It is common that we need transfusions every two weeks.
3. It is not common to be very tired after transfusions. I don’t know what the reason can be. Most patients feel better about one day after transfusions.
4. As you suspect it is the heart that will react early if the HGB is too low but also the brain that needs oxygen to function (like all cells in the whole body).
5. If Aranesp (an EPO drug) isn’t enough it should be combined with a drug that stimulates white blood cells like Neupogen – more patients respond to that combination. Here is a report:
http://jco.ascopubs.org/cgi/content/full/26/21/3607
6. Your platelets are low – in my clinic you should get platelet transfusions and your doctor should look for treatment for example Vidaza. Have you seen the warning list for patients with low platelets – I have posted it many times to this forum. Low grade fever and night sweats are common symptoms in all malignant haematological diseases either you have low platelets or not.
You don’t write anything about your white blood cell count? Even if it is OK you should try to avoid infections that will lower all your counts.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen for low white blood cells, Thalidomide and Prednisone for bone marrow fibrosis.