[jerryo]

Originally Posted by simey1

Hi all!
I am a 67 year old male, have been dignosed with MDS 5q since 2003. Things stated "acting up" 18 months ago. Revlemed worked for 10 months and my situation has been hit or miss since. the latest was a 3 day infusion of Dacogen which only beat me further up. My counts are fairly low. On a cruise to Alaska last week, I had to get off the ship in Juneau after 4 days and fly home to get a RBC infusion. My WBC is at 1.0 so i got a shot of Newlasta last week.
I'm not going to bore you with further detalis of my CBC.
The doctor that I liked and have been working with for the last few years left 2 weeks ago, and while they are negotiating with an replacement, they brought in a temporary doctor. Understandably, the temp DR. only treats the symptoms and hopefully the new permanent doc will deal more aggressivly with a treatment plan.
I've had 4 transfusions so far, over a span of 8 months.
Bottom line, My family and I are frustrated. We are sitting on a powderkeg.
Some encouraging words from people that are dealing with similar issues would be appreciated.
Mike

Hello Mike

I was recently diagnosed with MDS and I got a 2nd opinion from Dr. Gotlib at Stanford. He confirmed my doc's opinion so we have two doctors who are in agreement on the treatment as well.

Jerry