[DanL]

It has been a while since I provided a meaningful update and thought that writing this today while I have seen some improvements and putting the obstacles in context was the best time to write. I know that at times our news and experiences become negative, and with me, I always try to live with balance, so here is my update with a little bit of both.

Since about May, I had been seeing a steady decline in my platelet count from 140k down to 53k, while red and white counts were doing well. I had a persistent rash on my arms and neck, but really nowhere else. I was starting to show some signs of GVHD of the gut and mouth, and probably the eyes as well. About 5 weeks ago, we took a skin biopsy and found that the rash on my arms was indeed GVHD ranging from grades 2-4. We hadn't really staged the gut symptoms as I had been taking budesonide for a few weeks and it seemed to be helping. Because of the declining platelet count and the mouth GVHD and the skin GVHD, it was suspected that I might have a little more going on than meets the eye. As a result, sirollimus was added to the tacrolimus that I was taking. We were trying to avoid adding steroids as I have some avascular necrosis, which steroids do not help.

My 90 day marrow biopsy was clean and looked good, but platelet production was down.

After two weeks of sirolimus, I was experiencing more fatigue, and my platelets dropped to 23k, which was a little alarming since I had not been that low since being in the hospital for transplant. Red blood count and white blood count also dropped, and there appeared to be a hemolytic anemia developing, lots of marrow stress, and even NRBCs in the CBC differential, which I had not seen since transplant.

Fortunately, when I went in for my regular checkup, the doctor recognized that I might be experiencing a reaction between the tacrolimus and sirolimus, so we stopped the sirolimus and started on prednisone. The doctor pulled a peripheral chimerism study to see if there were any engraftment issues as well, and was ready to order another marrow biopsy. Two weeks later, platelets have doubled, red and white counts are back up, and I am feeling a whole lot better (never thought I would say that while on prednisone, but it is completely true!) I still have GVHD symptoms, but my arms almost look normal, gut is doing better, and vision is clearing up a little - enough to see the computer screen pretty clearly today. The chimerism study came back 100% donor still, so the declines are being attributed to systemic GVHD, which appears pretty obvious now.

We have been decreasing prednisone each of the past two weeks and are seeing where it takes me.

Along with all of the other changes, my team of doctors has really been working on the nutrition and supplement front -- meaning that I am on insulin to take care of the spikes in glucose levels from the prednisone and budesonide that I was previously on, I am beginning to take prescription strength vitamin D and have been on IV magnesium, I have been to an endocrinologist to check hormone levels and bone density, and see a nutritionist weekly to every couple of weeks as needed to make sure that I am doing what is needed to reduce infection risks, eating well, and maintaining as much muscle mass as possible while on steroids.

Although the only constants are adjustments and changes, the open communication, responsiveness, and consistent interaction with my team has been tremendous, and it feels like they are helping me take care of the many needs that are present post-bmt. I know that there is a long way to go and that there are many potential risks and obstacles ahead. I am not a person to share much about my health or life as a whole, but given the number of people going through transplant, making life-altering decisions, and the relative paucity of information explaining post-transplant life and expectations, I wanted to share a little bit about my ride. I fully expect more change to come, probably new treatments and a continuation of various bouts with GVHD, but see these as acceptable and necessary parts of my recovery.

Last thought for today, I am so appreciative of the members of this forum, you, your health, strength, and courage are in my prayers daily.