[Steve Kessler]

Hi Steph,
I'm now 71 and my MDS was diagnosed 10 years ago. At the time, I was weak and had a grayish complexion. I didn't think I was sick and was living my daily life. We went to a hemo/oncologist who did both a BMB and a "Fish" analysis, both of which confirmed the diagnosis. He referred me to the Fred Hutchinson Cancer Research Center here in town (Seattle). I saw Dr Deeg who said that if I didn't have a stem cell replacement, I would likely die in 2 - 2 1/2 years. At that time, there were no effective drugs like there are today, but the likelihood of a cure was outweighed in my mind by the promise of rejection of the new cells and a low likelihood of living more than 100 days if the procedure was unsuccessful. I decided to let nature take its course and I didn't start to need transfusions regularly for over two years. Later research confirmed that patients with 5q- chromosomal damage would likely live a long time with the disease and then Revlimid came along to further help the survival picture for many people (although it was not effective for me).

Now I'm 71 and, even though they have improved the techniques of stem cell transplantation, I am not in good enough physical condition to have a transplant. I'm starting a new drug trial next week and hope it is effective for me. You never know what will come along!

If it were my decision to make at age 40, I would go ahead with the BMB. At worst, you'll have a sore butt for a few days and at best, you'll have a definitive diagnosis.

The success rate for transplants is much higher for people your age and you could have a permanent cure in a short period of time rather than having a sword hanging over your head for the next 20 years. A BMB doesn't commit you to anything and may just decide to wait it out, but at least you will be informed as to your choices.

Best of luck, whatever your decision.

Steve