[Greg H]

Hi Catherine!

Sorry to hear about your diagnosis, though there is some comfort in knowing what it is that you have.

Watch and wait is definitely a very viable strategy for someone without significant symptoms. I had platelet counts in the 85-95 range for 15 years with no worsening. I have no idea whether I had dysplasia at that point, since we didn't check.

Transplant is something that someone with low risk MDS should learn about, but not, in most cases, contemplate actually doing. There are two studies out there that look at the "sooner vs. later" question with transplant for MDS. The first and most famous is by Harvard's Corey Cutler, who found that, on average, folks with lower risk MDS live longer if they delay transplant until the point at which they are about to progress to AML. Folks with higher-risk disease at diagnosis, on average, live longer if they go ahead with transplant.

There is a brand new update of that study that I have not read, but heard explained on an AAMDS webinar yesterday, which found exactly the same thing. Transplanters would, of course, prefer to transplant younger, healthier patients, because it give the absolute best chance of surviving the transplant. But, as I watch webinars and presentations, I hear more and more transplanters flatly say "We don't transplant for lower risk MDS."

It is tough to have a serious disease and to decide to watch and wait -- i.e., to "do nothing about it."

It might help to think about that line in the Hippocratic Oath: "First, do no harm." Almost everything you can do for MDS, aside from supportive care, will make you sicker before it makes you better -- particularly with the kind of CBC numbers you have. Most therapies will lower one or more of your blood counts, and most therapies will provide at best temporary relief from symptoms (which you don't really have at the moment).

Your doctor likely mentioned ATG because you are so young, and younger patients are among those most likely to do well with immunosuppression. But ATG will trash your white cells for a while (that's what it is supposed to do) and leave you vulnerable to infection. You'll like be on cyclosporine after, also leaving you open to infection, plus other side effects that could make your quality of life suffer. You could do Campath, another immunosuppressant, but it will also suppress your counts and leave you open to infection for a while.

It's hard to watch and wait, but, as so many of us have found, it is often the very best approach for lower risk MDS.

If your numbers do start to slide at some point, immunosuppression would be a reasonable option, and you'd want to do that after your counts drop but before you get a lot of chromosomal abnormalities.

As Melissa says, there is tons of research going on about MDS -- from drug therapies for low-risk patients through better transplant techniques. Watching and waiting means you will get the benefit of that research when you do need to pursue therapy.

It's great to have you as part of our intrepid band of bone marrow warriors. I am sure that, as you learn more about the disease, you will be teaching us all a thing or two.

Take care!

Greg