[Greg H]

Janice,

My initial response to you got way off into the general philosophy of transplant and didn't really answer your more practical question. So I'll take a stab at that.

Transfusions - Having RBC transfusions shouldn't really interfere in any way with your ability to work or play. The typical practice at my hospital is to transfuse two units of packed red blood cells at a go. Each unit takes two hours. When you figure the time to get registered, set up, etc. it winds up being most of the day in the hospital or day surgery unit or treatment room. Unless you have some sort of reaction to the blood (very rare), you can go from the hospital straight to work. The issue that usually confronts folks is frequency -- how often they have to get a day off from work because they need a transfusion.

Transfusion and transplant - This is a can of worms. I think there's data out there indicating folks with a lot of transfusions don't do as well with transplant. And I know there's data out there that says folks with very high ferritin counts (which tends to go up with every transfusion) don't do as well with transplant. My doc at the National Institutes of Health says you have to take all this with a grain of salt. It's all based on after-the-fact analysis and, in that situation, you don't know what other factors might be coming into play. Maybe the folks with a lot of transfusions were just generally in worse shape. So, you will find some transplant centers that will give you Exjade or some other drug to bring your ferritin down before transplanting. They don't do that in the transplant unit at NIH. As my doc said, "There not a lot of good data on this, so people have a lot of strongly held opinions."

Vidaza & Dacogen - All three of the major MDS drugs, Revlimid, Vidaza, and Dacogen, are unfriendly to your bone marrow. In other words, they are almost guaranteed to make you sicker before they make you better. Vidaza and Dacogen are similar: you have to go into the doctors office or treatment center for 5-7 days in a row once month Some people do okay during the treatment and right afterwards; some people feel like crap; almost everyone sees their counts go down. Doesn't sound all that work-friendly, at least during treatment week, to me, but I don't have any personal experience with this. You can search for "Vidaza" in the threads and get a good idea of the range of experience. The studies that got these drugs approved were with high-risk patients. There's no good data that I have seen that justifies giving Vidaza or Dacogen to low-risk or INT-1 patients. Some centers use it as a bridge to transplant: you're high-risk, have a lot of messed up chromosomes, and they want you to take it to try to suppress those bad clones before starting the transplant process. So, taking these drugs isn't going to hurt your chances for a successful transplant. But, if you're on them, it's probably because your disease is progressing.

Revlimid -- Revlimid is approved in the US for folks with deletion 5q, but there are on-going clinical trials of it in low-risk, red cell transfusion dependent patients. It tends to lower platelets pretty significantly, so is a less happy choice for low-risk folks who mainly have platelet problems. Aside from the platelet issue, my doc (who has a lot of experience using it in multiple myeloma patients) says it is "very well tolerated." It's a pill, so you can take it at home. Unless you had an allergy to it, I wouldn't see it interfering with work or reducing your chances for a successful transplant.

IST - Immunosuppressive therapy -- the ATG plus cyclosporine that a lot of AA folks wind up doing -- is a possible treatment for lower-risk MDS. In fact, folks with hypocellular marrow are one of the groups that have a higher probability of success with IST. I did a clinical trial with another IST agent called Campath. The ATG part of the treatment is going to put you in the hospital for several days (I'm not sure exactly how many). The cyclosporine is a pill you take afterwards. It has some pretty nasty side effects and there's a whole complex deal with trying to slowly, slowly wean you off of it. I haven't had it myself, so I can't relate how it relates to work and play, but you can search marrowforums for "cyclosprine" and get a ton of info. IST should interfere with transplant, according to most folks. My transplant doc, who uses ATG in the transplant process, didn't want me to use it prior to transplant. That was one of the reasons I went for Campath instead.

Looking ahead -- You don't even need transfusions now, so you are in the catbird seat. If you eventually need RBC or Platelet transfusions, which one you need may tell you which drug therapy makes the most sense -- and whether your disease is progressing.

All in all, I don't think any of the drug therapies are, in themselves, likely to make a transplant less successful. Whether a few years of monthly transfusions will complicate transplant seems to be a matter of significant disagreement among the experts.

(If any of you other MDSers out there think what I have just written is bunk, I do hope you will jump in and set me -- and Janice -- straight.)

Good luck!

Greg