Hey Janice!
I just hope I'm not leading you astray here . . . I'm sure if others have contrasting data to add, they will jump in.
I think what you suggest makes a lot of sense. In fact, when I was first diagnosed, my local doc initially wanted to put me on Vidaza. But I did the research and found out it really didn't make sense. So we adopted a watch-and-wait posture, while consulting with a transplant center, until I found out about IST and the Campath clinical trial at NIH. Because of the theory behind the use of IST for MDS, it made sense for me to dive into that, before my T-cells created any more havoc in my marrow. (You can read about that whole concept
here.) Otherwise, I would have stuck with watch and wait, even though I was having transfusions every six weeks.
Through consulting with the transplant center, I discovered that I have no sibling donor options, but have at least three solid matches in the registry. Knowing that is sorting of like having an ace in the hole; it gives one a bit of comfort about waiting a while for transplant.
Though my very aggressive fireball transplant doc would have me in the transplant ward tomorrow if I'd let her, I'm waiting until I see clear signs of disease progression. This is a very personal decision for everyone, so I am in no way suggesting that my line of thinking is the only correct way of thinking -- heck, it might be just plain dumb.
Risk - You can read all kinds of statistics about transplant, but the overall impression I walk away with is this: there's about a 50 percent chance that either A. the transplant will kill you, or B. You'll get some really nasty GVHD that's worse than monthly transfusions, or C. You'll relapse in two years. There's maybe a 25% chance that you come away with only minor GVHD that's about as annoying as a transfusion every month. And there's maybe a 25% chance that you come out with utterly no problem, better than you were before.
Do not try to take any of those percentages to the bank. It is just my overall impression from watching all those videos and reading a ton of stuff.
Until my transfusion requirement becomes unbearable, or my platelets or neutrophils decline into the danger zone, or I get a bunch of blasts or some nasty chromosomes, I'm probably not going to have a transplant, just based on the odds as I see them.
But, you can improve your odds. The things that really hurt your odds in transplant are being older, in poor physical condition, or having other diseases (co-morbidities). So, figuring at some point I might need a transplant, I have lost 30 lbs, exercise more, and eat better than I used to.
You sound like you have it all covered in that department.
Life - I'm 54. I run a small community newspaper -- a real Mom and Pop where there's no way the operation as currently configured can run without Pop. I depend on that business for my health insurance, as well as my income. So I'm not in a good position to take a year off (or even six months off) to have a transplant. Knowing that I might have to have a transplant at some point, I am carefully working to bring other folks into the operation and training them to cover bits and pieces of my job, while trying to expand the business to pay for them, and getting it in a position where, if worse came to worse, I could try to sell it.
That's where I'm at in my decision-making. My disease is in a bit of a transition mode right now. You can read more about where I've been and where I am on my blog (link below).
Sometimes you folks north of the border use blood count units that aren't exactly the same as the ones customarily used down here, so I'm not sure whether I know what I'm looking at with your counts. If the units are the same as ours, your platelets are getting on down there and your neutrophils are at about the level that my docs at NIH would have you on Ciprofloxacin to prevent infection. Can you post the reference ranges on those counts? It could be just that we are using different units.
From my perspective, I always feel lucky that it's mostly my reds that give me trouble. Sure, that makes me tired, but MDSers get into real problems when they have bleeding caused by low platelets and infections from a low neutrophil or lymphocyte count.
Sorry to blather on, but responding to your questions is actually helping me put some stuff down that's been running around in my brain.
Take care!
Greg