marmab, if your marrow is hypocellular with no cytogenic abnormalities or blasts, do you know why you were diagnosed MDS instead of AA? My husband's diagnosis was officially changed to hypo MDS only after they found a trisomy 8 clone. Other than that one mutation, we're still treating it as AA, and all of us (including his doctor) still think of it and refer to it as that.... just with a "twist". He has responded well to ATG/cyclo, so that may be a viable option for you too.
I'm also curious as to why your doctor would recommend either transfusions or growth factors as a "treatment". Neither of those things will actually treat your disease, they'll just buy you some time until you can respond to treatment. For some patients whose MDS doesn't fit the criteria for any of the treatments that are currently available, supportive care may be their only option, but it sounds like you do have other options.
Our doctor used a target of Hgb at 8.0 or Plts at 10k before ordering a transfusion, but those numbers can and should be adjusted according to individual tolerance. If your shortness of breath at 9.1 is severe enough to interfere with your life, what advantage could be gained by waiting on IST while you start transfusing? In general, the less transfusions you need to have, the better off you are likely to be in terms of iron overload and building up unwanted antibodies. I'm not suggesting anybody avoid them if they need them, but if that's where you are, then it seems to me that it's time to start whatever treatment is deemed most appropriate for your condition.
Ken got both Procrit and Neupogen shots for a while too. In retrospect, I don't think the Neupogen was really necessary for him, as he was never severely neutropenic, and didn't derive much benefit from it either. It was started as a matter of course during his first ATG, but by the time he had his second one they didn't bother with it.
The Procrit, on the other hand, did help him keep his Hgb up while his counts were recovering. He was also being transfused when he first started it, so he wasn't relying completely on that when his counts were really low. His doctor never did test his EPO levels (a bone of some contention, since the stuff is
very expensive). He actually said "This doesn't usually work for AA, but let's try it anyway"! Later on we tried stopping it to see if it was really doing anything or if he was just responding to the ATG. It did make quite a difference, so we kept him on it and gradually weaned him off it once his Hgb got up around the 12 level. If you decide to give it a try, I'd make sure that they test your EPO first, and also that your insurance will cover it. Even the pharmacist's jaw dropped to the ground when filling the prescription for a single vial. She said "This is more than my car payments!"
