Janice,
You have asked the $250,000 question. This is an area of hot debate amongst the experts -- and patients. And, ultimately, it all comes down to a matter of your own tolerance for risk and for living with a disease.
Transplanters will tell you that your best chance for a successful transplant is to do it as quickly as you can. And they will be right. You take a strong 50-year-old with relatively mild symptoms, a low blast count, low transfusion requirements and you transplant them. Or you take a 60-year-old whose MDS has just converted to AML, put them through a few courses of Vidaza to try to get rid of the chromosomal irregularities and you transplant them.
You can probably guess which patient is going to have the best chance of success, get through transplant with the fewest problems, and have the least chance of dying in the transplant process.
But, on the other hand, that 50-year-old may be doing just fine. So why does she want to take a one in three, or one in four, or one in five chance that she'll be one of the folks who gets labeled "transplant-related mortality." Why does she want to take a year out of her life to go through a life-threatening and life-altering process? Why does she want to risk getting seriously bad GVHD and taking lots of meds for the next ten years that will make her feel worse than she feels right now?
Someone would decide to do that because they want to be cured. Some folks simply cannot live with the knowledge that they harbor within their bone marrow a deadly disease that, a year from now, six months from now, or a week from now, could explode into something truly terrifying.
Others will do that because they have a strong positive outlook, have read the transplant success stories of folks on marrowforums or elsewhere, and they feel lucky, or confident, or blessed.
There's a ton of research out there on transplant, but there's not a lot that can really answer your question. One study that tried, and many MDS doctors will refer to, is a big, complicated, statistical study led by Dr. Corey Cutler at Harvard. He looked at a bunch of MDS patients who were transplanted, and did some sophisticated statistical analysis to figure out life expectancy for folks transplanted right away, two years out, or at the point they progressed to AML.
Low-risk patients transplanted at progression lived and average of 7.21 years; those transplanted at diagnosis, 6.51 years. For INT-1 folks, like you and me, transplanted at progression, life expectancy was 5.16 years, versus 4.61 years if transplanted at time of diagnosis. So lower risk folks might want to delay transplant.
On the other side of the coin, INT-2 and high risk folks lived longer if transplanted right away.
If you're like me, you look at those numbers and think: Heck! I plan to live a lot longer than any of that! Plus, the data that those numbers is based on was all collected before Revlimid, Vidaza, or Dacogen were approved (in the US, at least.) And the transplanters are improving their procedures, and their numbers.
In other words, that's all pretty interesting, but it doesn't do much toward helping an individual decide what to do.
That's enough from me for now. I hope it's somewhat useful, and I'm sure others more knowledgeable will chime in.
Two other thoughts:
I strongly recommend you watch a lot of webinars and presentations done by transplanters. In particular, go watch to
this page and watch the one by Matt Kalaycio, MD, FACP. He's very matter of fact about the risks, which can be rare in a transplanter.
Second, I can't put my browser on the link right now, but I saw a presentation by Bart Scott, another well-known transplanter from up in Seattle. He said that, if he were diagnosed, he'd want a transplant right away, ASAP. "But I've learned to learn from my patients," he said, and then related the story of a 50-year-old guy, diagnosed with MDS, who wouldn't go for transplant right away, because the most important thing in his life was his daughter's upcoming bat mitzvah, about a year in the future.
That's the way I see it: you have to listen to everyone's story, listen to all the experts, listen to know-it-alls like me, really understand the risks, really understand the potential benefits, lay down your money, and make your choice.
Good luck!
Greg