[DanL]

I have been a little remiss in posting updates except as part of other threads, so I thought that I would send out my progress report and see how other people who have gone through transplant in the last couple of years are doing.

At day +483, I have the good news of being able to say that I am still making progress. The biopsy that we completed in late May came back clear of blast cells, mds cells, abnormal clones, etc. This represents 6 months of good biopsies since we detected some relapse back in August of 2014. To get there, I went through 6 cycles of Vidaza to help along the new system.

I have been working with mild-chronic GVHD and have been on steroids, tacrolimus, photopheresis, IVIG, and a few cycles of Rituxan. I still have cGVHD and it flares from time to time, but overall has been pretty manageable. Primary impacted areas are my skin - i have two red zones - my head and arms - and then some recurring folliculitis, my mouth and GI tract, which we control with dexamethasone and budesonide as needed, and then my eyes, which we treat with some really expensive eye drops a couple of days a week.

Some of the other issues that have popped up include acquiring drug-induced type 2 diabetes that I am finally getting control of, edema in the feet and lower legs, some neuropathy which is resolving, and the one that we are working on currently - avascular necrosis of the hips. The avascular necrosis is not new - i had a bout with it back in 2010 where the pain subsided, but between the chemo and steroids, it was bound to come back.

The plan - I have been doing some pain management for the avascular necrosis for the past 4 months, but my left side does continue to deteriorate, so I am electing to go in for hip replacement sometime in the next month, pending doctor approval of course.

I think that one of the questions that comes up for me and for others is - what are your blood counts - is everything normal? The answer - they are good enough for a lot of things in life, but they are not normal. Since transplant, I have been very fortunate not to require a single transfusion, no injections of neupogen and have been pretty stable. My hemoglobin hangs out somewhere between 9.9 and 11, white blood cells (Vidaza cycles aside) hang out in the 2500-5000 range generally - I have a lower lymphocyte count due to the Rituxan rounds - that will probably persist for another few months, and my platelets, bane of my existence, have come up to be in the 80k-130k range over the past couple of months - numbers I haven't seen since before diagnosis in 2010.

Again, the purpose of the update is to share some of the experiences that I have been through and the ongoing decision making, complications, changes in plans that seem to happen post-transplant. Every day I am glad that I was fortunate enough to have a donor, to be able to get the transplant, and to be here again today. The complications I have experienced I view as speed bumps. Need to slow down a bit, but there is plenty of open road ahead.

My hope is that anyone experiencing difficulties or doubts through the BMT and post-BMT process stays positive, encouraged, strengthened, and empowered by every day that they beat MDS or any of the other blood disorders.