[DanL]

Meri,

Unfortunately the information on long-term survival is somewhat difficult to get by year after transplant. The biggest study that I found started at 2 years post-transplant, as disease relapse, GVHD, and infection were the biggest causes of death during the first 2 years.

At the 2 year mark, 80% of patients would go on to survive 10 or more years.
Between years 2 and 5, 40% of those died, died of disease relapse, while the others had complications of cGVHD, secondary cancers, infections, organ failure. After 5 years, death from relapse becomes pretty rare, although it may occur, so you are left with infections, cGVHD, and secondary cancers in the later years.

Most of the prior research that I had seen really focused on 1 and 2 years because most institutions only publish 1 year survival rates, and probably because if you get past the second year, your odds of long-term survival go way up. After looking further, that 5 year number would really seem to suggest that you are not likely to relapse after 5 years.

Like Ray, I am getting close to 4 years post transplant and still have some cGVHD issues that I am dealing with, so my new immune system hasn't quite settled in to its new home all the way. Fortunately I am not on a lot of immune suppression, and have managed to escape the infections issues thanks to my team of doctors - I have now survived sepsis 3 times, pneumonia 1 time, cellulitis for about 6 months, and both c-diff and vre, and bk, etc. Most of this was in the first 2 years, year 3 was good, year four has had some hiccups.

It can be a long path, but one that is worth it.