Nellie's journey has become a part of my journey as well. I made the decision, after being offered Vidaza treatment, and after a less than successful treatment with Dacogen, to not begin Vidaza. Right or wrong...that is my journey at this point. I have chosen to monitor my counts, take Aranesp injections when needed, and if necessary, blood transfusions. At this time, I have been able to go two full months without a transfusion. Every patient is different, cirmcumstances vary, and each of us make decisions based on the little that is known about treating MDS.
I think I have chosen quality over possible quantity of life. I am 66 years old and still very active, despite my illness. As far as I know, only my red cells are affected with no sign of transformation. My MDS is genetic based (Trisomy8) I am hoping that many of the crazy side effects and illnesses that have resulted from the Decagen weakening my immune system will stabilize.
Each of us, both MDS patients and our caretakers lead a day by day life...never quite knowing what to expect. I pray for all of us that more research and a better understanding of MDS is just around the corner.
If anyone should care to e-mail me, my address is:
leonettewalls@hughes.net.