I have been following Nellie's journey for quite sometime. I have never met Eli or Nellie; yet, there is a connection that those of us with MDS share, no matter what the exact diagnosis is. It seems that many of you have experienced treatment on Vidaza; I began on Dacogen, September, 2008, after beginning only on Aranesp injections. Like Nellie, I bottomed out the very first round. After 2 units of platelets, four units of blood, and other care...and 10 days in hospital, a few weeks later, we tried, again with only three doses, with not much better results. I continued until February 1-3, 2009. I think I finally got a total of three reduced rounds completed. Platelets were jumping around, so the doctor suggested Vidaza. Because of my intolerance to Decagon and other health factors, I declined to receive Vidaza when scheduled to begin in late March. Not much has changed since I took the chemo. I suppose each of us wants to try what might work.
Have I questioned my decision? Very, very little. Will I change my mind? Probably never. I am 66 years old(8-17-42); on chemo , I was not worth a lot. I feel I have found a large part of myself, again. My last transfusion was March 12, 2009. My counts are not by any means normal, but I am functioning with Aranesp every three weeks.
Learn all you can about your condition, your prognosis, what level of treament the body can handle....then, make the best decision you can. The best treatment for me is prayer, my close circle of friends and family, continuing my musical career in performance, teaching, and playing for church.... and fighting the days of occassional depression, and trying to not be too discouraged.
I have said that I feel many times, it takes more faith to stop treatment, then to continue. God's blessings on us all..we all have a part in this life...Live it as best you can.
Feel free to e-mail me directly:
leonettewalls@hughes.net
To Eli and Nellie:
You have been stars in my book. The patient has a difficult time and the caregiver role is tough. We will continue to pray....People in Alabama who don't know Nellie are praying for both of you and others who are facing our common struggle.