It's late, but I slept about 10 hours today and I find that it's best just to wake up and read or do something instead of tossing and turning trying to sleep. On the left is a picture of me, Annie, Johanna and Joe. You can see how puffy my face is from the steroids I'm taking. The puffiness along with my black eyes makes me look pretty weird, I think, though it doesn't look so bad in this picture.
The docs made their rounds this morning and were thrilled to see the skin GVH mostly gone and the lack of fevers for the last few days. I'm still swallowing food, my mouth is hanging in there, and their faces lit up when they realized I had walked a total of 42 miles in the 3 weeks since I've been here. Since I can still swallow and eat food, they started writing up orders to taper me off the IV medications so that they can be replaced in pill form. In fact, as I'm writing this, I haven't been hooked up to my IV pole since 8pm! This is so awesome, and means I will probably be going home in the next day or so. WOOOOHOOOO!!!!!
Counts are also continuing to go up: platelets are at 214 and ANC is at 5.24! These are squarely in the normal range. We still expect the counts to go up and down a bit in the next few weeks, and the immunosuppressive drugs I'm on doesn't mean my immune system is ready to go out and battle the world, and also because they are infant cells and have no learned immunity, but they sure are off to a good start.
Today I got my first infusion of MSCs, or Mesenchymal stem cells. What, you're asking? Didn't you already get stem cells? Well let me explain. The stem cell transplant I got 2 weeks ago consisted of HSCs, or hematopoietic stem cells. These HSCs can reproduce themselves and are the basic building blocks for all blood components, but blood components only. There are other types of stem cells which are building blocks for other things, such as tissue and muscle. MSCs are stem cells that help regenerate tissue and have been shown to be a big factor in reducing graft vs. host disease. Unlike HSCs, MSCs are universally compatible and don't have to be closely typed. It's a Phase III clinical trial for which I'm eligible, and if it means not having to suffer through several years of GVHD, I think it will be a wonderful thing. I'll be one of 850 people so far in the trial. Essentially the way it works is this: MSCs live in the bone marrow awaiting instruction from the immune system. They interact with the immune cells in your body and react to inflammatory signals in various parts of the body, then leave the bone marrow to travel to the damaged areas and actually help regenerate lost tissue and muscle. How cool is that?
It's a double-blind test, meaning 50% of patients will get the MSCs, and the rest a placebo. Not even the nurses and doctors administering the transfusion are supposed to know. The transfusion bag and even the tubes are covered in dark plastic. But apparently there is a very distinct fishy-smell that goes along with the MSCs that sort of gives it away, and my room smelled fishy all day. So much for double-blind tests! I'll be receiving 6 of these MSC transfusions. What's funny is that I was already zonkered out this morning after walking a mile and sleeping very well when the nurses and trial coordinators came in to administer the MSCs. They started by loading me up with 50mg of Benadryl, which immediately put me back to sleep again. The trial researchers were these 2 guys who were required to supervise the the whole operation, which took about 2 hours, and they stood at the foot of my bed the whole time. So I would wake up groggily and see these 2 dudes standing there, all serious and bored looking, like secret service agents, which I'm sure affected my dreams. At one point there was a cleaning lady in my room, and I remember asking her some random technical question about my IV medications. She just shrugged and kept mopping. I didn't end up waking up until about 3:30 pm, when my parents showed up to walk another mile with me. Then Johanna showed up, we hung out for a bit, and I slept again from 7 pm until 1 am. It was great.
Right now I'm feeling pretty good, with some fatigue, but hoping my recovery is speedy and that the GVHD is suppressed and not debilitating. I've been reading lots of blogs about people at day 80 and beyond who are still suffering from serious cases of GVHD with things like diarrhea every 10 minutes, bad gut infections, and skin rashes that get increasingly worse and don't respond to steroids. Cross your fingers that my GVHD is kept to a minimum with the steroids, and that these magic Mesenchymal stem cells help regenerate any damaged tissue and muscle that's likely to occur.
Over and out!