Day +178

After my appointment last Tuesday, I returned to NIH on Friday for the doctors to check on my GVHD symptoms and discuss the next step in treatment. My Dad was able to come to the meeting as well, with some questions he had for the doctors. The meeting was in the afternoon and I was pretty exhausted at that point. My fatigue seemed to be getting worse the previous few days, and my mouth was irritating me as much as ever. Not only was I still having trouble swallowing, but I was developing sores on the top of my tongue that made putting anything in my mouth, even room temperature water, uncomfortable.

So the nurse practicioner I saw on Tuesday initially thought I looked worse when she saw me Friday. She had me weighed and I had lost two and a half pounds in the three days since my last visit. This is my lowest weight since I was first diagnosed back in September 2007. In the last three weeks I lost thirteen pounds, which is more than a pound every two days. I think its safe to say I wasn't heading down a healthy path.

When the doctor saw that I wasn't rebounding in the last few days he decided it was trime to start the systemic treatment with Prednisone. I was prepared for this and it was a relief to know that I would be getting some relief. My father asked about losing the graft versus tumor effect when starting the Prednisone, which was a concern of mine as well. The doctor explained that statistics show an improvement in graft versus tumor effect with mild GVHD, but that there is no correlation between greater graft versus tumor effect and more severe GVHD. Since I have already had the minor GVHD symptoms, his thought was that I likely already received as much of the graft versus tumor help as I can get. This was a relief to my father and I to hear, and made it clear that there really would be no reason to not start the Prednisone treatment at this time.

My father brought up his thought that more tumor-fighting techniques could be used to help eliminate the tumor because of its tough nature and the aggressiveness with which it came back last year. He brought up the idea of radiation with the doctor, who did not rule that out as a possibility in the future. Most patients who have a mediastinal lymphoma receive radiation after their initial chemotherapy. I did not receive this after chemotherapy because the original study I was in was testing if the therapy I was given would eliminate the need for radiation. The idea of radiation certainly isn't pleasing, but there are plenty of people who have been through it and are doing well. If that is something I need to have done in order to improve my chances of living cancer free, then it would be worthwhile. For now the doctor wants to focus on improving my GVHD symptoms, and possibly thinking about radiation further down the line after some more scans.

So in addition to the Prednisone the doctors gave me some morphine to help with the pain of swallowing and some encouragement to keep nourishing myself despite the discomfort. I started the Prednisone Friday evening, so while I write this I have only taken three doses of it. Its pretty encouraging though that Kate has already noticed an improvement in how I appear to feel. I feel its made a big difference already as well. The most obvious sign that I've noticed is that my skin rash looks better. I had a rash on the back of my hands that were raised purplish/reddish bumps, and those are barely noticeable now. My throat feels better although it is still uncomfortable and occasionally painful to swallow. Taking the morphine before meals seems to help a little bit. My fatigue has also seemed to improve, although some of that might be explained by the energy boost that Prednisone tends to give you.

So I will be interested to see how I feel as I continue to take the Prednisone. Returning to a more normal state would be great, and keeping the GVHD from giving me further problems is the most important issue right now.