My dad was diagnosed in September, so we have known he has MDS for six months. In the beginning, he had transfusions every 1-2 weeks. He never went longer than 2 weeks. He has just completed his fourth session of Vidaza and is having a transfusion today, but it has been a full month. The doctor seems to think this indicates progress. We met with him yesterday, and he said that my dad will need chemo indefinitely, that this disease is not curable, but only manageable. I'm guessing that maybe, for the rest of his life, my dad will hopefully have a few good days or maybe a few weeks per month where he is feeling alive and able to do anything. They say they are trying to get him a point where he won't need blood transfusions, but I don't see that happening yet.
It is all very confusing, and scary, and heartbreaking to watch someone who has been so vital and energetic all of my life suddenly seem so frail and helpless.
My dad's birthday is next Thursday, he will turn 75. I wish I could get more information as to life expectancy and quality of life, but the doctors don't seem to divulge more than necessary.... I'm trying to learn as much as I can on my own, on my computer, and I do thank God for the blessing of this website, my online friends, and the sharing of such helpful information and communicating with others who have this disease.
Feel free to email me at
marixyz@aol.com and perhaps we can help each other get through this....
My prayers are with your dad, and I'm asking you to keep my dad in your prayers as well....
Thank you
~ Mary