[DanL]

@Tracey - all prayers accepted and reciprocated. Everyone on these forums, patients and family go through so much and I am sure that like me, we all appreciate the support.

@Bailie - the studies that I have read about post-SCT relapse are not very thorough, have lots of gaps, lack good scientific data, and have to cover a very wide range of what is called relapse. Examples are ranges of chimerisms, wide range of blasts, wide range of disease -meaning some to low grade MDS, and some to the various types of AML.

The most comprehensive studies I have seen seem to point to an overall cure rate of about 25% to 30% in relapsing patients, and these mostly were treated with Vidaza - with or without another drug, and sometimes with a donor lymphocyte infusion. The biggest problem with this study was size and that it was retrospective, so there were no real controls on the study to show that one treatment was better than the other. A second transplant was used in some of these cases as well.

As for me - I completed my sixth cycle in early February and have not had any additional cycles since that time, and we have not discussed continuing any further as everything seems to be moving along in an acceptable direction, so vidaza may or may not be in my future.

I have talked to a couple of patients that had similar relapse profiles to mine that are doing well 2 and 3 years after the initial relapse and who are no longer on any maintenance type of chemotherapy, so I am holding out hope that I will follow their success.

As for the sleeping and being tired - yep - happens. There are days where I am awake and productive for many hours per day, and days where I probably sleep 16 hours including naps and just flat out melt downs. Hopefully the people around you understand that you give everything that you have everyday - and some days it just isn't as much as you would like. We have to make choices and sometimes they suck - i really like cooking Sunday dinners for our many family members and occasional friends - and sometimes by about 4pm I am on the collapsing side of the day - it has to be all hands on deck to help me get through - but they are getting used to it and coming over earlier - helping earlier.

Life is good. Not always easy, but always good.