Hi fellow MDS colleagues,
I celebrate my 8th year of successful treatments for MDS on April 21. I've had an unusual treatment regimine but it has been very successful in my case.
I was told I might survive 2 years, starting as RAEB-2 with 15% blasts; but here I am at 8 years.
My message is: "Don't ever give up and stay positive".
We all respond differently but I feel a positive attitude always helps.
I'm currently experiencing good blood counts, "good" for an MDS/AML patient. My worst count is the WBC and ANC, WBC is around 1.0. Hgb has been in 10-11 range for over 7 months. Platelets are being controlled in 30 to 120 range by Nplate injections, 2 wks on-4 wks off. Thalidomide at 75mg/day, Dacogen at 10 mg/ one day per week.
It's a unique combination but it's working. I'm now in my 3rd cycle of using Thalidomide, it has been able to make my counts recover when restarted after a few months off. I have had no blood transfusions during the entire 8 year response.
I feel a major component in my success is due to finding great doctors who will "think outside the box" in trying different treatments.