Summer vacation is here for a school employee like me, which meant plenty of time this week to visit NIH. I've put in full days there each of the last three days, and will head over to Bethesda tommorrow for a quicker visit. I've entered a new study at NIH that is not therapeutic, but involves tests in order to collect data on chronic GVHD. I've visited a slew of disciplines for this, including dermatology, dental, opthamology, and more.
I've visited the skin and mouth doctors plenty of times in recent months, and there isn't much going on there. Both of those areas have improved with the introduction of prednisone recently, so that is a positive. The opthamologist was happy with everything he saw until he got to the final part of his GVHD examination. He flipped back the upper eye lid and noticed some scar tissue on the inside of the lid. He felt that this could have explained the runny eyes and crustiness that I had recently. While the prednisone has cleaned up those eye issues, he was still concerned that the scar tissue there could have a negative effect on the eyeball. He prescribed me some eye drops as well as a steroid ointment for the eyes. I'm not happy about having to medicate my eyes, but at least this might prevent a more serious future problem. This makes me thankful that I chose to participate in this study.
So the prednisone is slowly easing the discomfort and pain of the GVHD, and this study is helpful because there are a lot of talented doctors weighing in on how to best treat this issue. Meanwhile the cancer is still there and my family is praying and hoping for that to improve. Today was another PET scan and like always its a big deal to hear what the results are. The meeting to discuss my situation was scheduled for 3:00, but it was closer to 4:00 by the time it got started. We have learned that waiting for the results hasn't been a good sign, so that raises the anxiety. My dad was the only person with me at the meeting, which was probably a good thing. Kate and my mom would have been stressing having to wait that long to hear the results.
The lead transplant doctor and several other familiar medical faces were there for the meeting. He looked exhausted and stated in a beat-up voice, "The scan showed significant improvement." It was great news to hear but the voice he said it in was somewhat depressing. One of the nurses and another doctor kind of gave each other an odd look when they heard him give such positive news in that type of voice. My Dad appeared to match the doctor's emotions and seemed ready to take in some more worrisome news. However, hearing "significant improvement," no matter what the delivery was like, was an immediate great feeling. The doctor explained that the previous spots near the tumor had all disappeared on this scan! Great news. He also stated that the size and the intensity of the tumor had significantly decreased as well. EVEN BETTER NEWS! There was a spot on the sternum that lit up on the PET, although it was barely measurable. He had no explanation for that, but was unconcerned about it considering how much the tumor mass had responded.
So while the phrase "No Evidence of Disease" has not been mentioned, this is still a great result. My new immune system is doing its job quite well! Since the transplant I have had a PET scan every month in order to closely monitor the tumor site. PET scans this frequently definitely aren't commonplace, but this was the doctor's decision considering how quickly I relapsed last year after experiencing a full remission. It was a positive sign today that he felt it wasn't necessary to have a PET scan next month. He was willing to wait a longer period of time before the next scan, which is always a milestone for a cancer survivor. I decided to go ahead and have a scan in a month anyways just to be on the safe side in monitoring the cancer. However, its an amazing feeling to know that enough progress has been made that the doctor is willing to increase the amount of time between scans.
So I remain on the prednisone and I am taking other topical steroids in order to control the GVHD. Its not a pleasant deal at all, but there is some sort of satisfaction in worrying more about this than the cancer. I'll continue to visit NIH a couple of times a week most likely through the summer. However, I am hoping that when work resumes in the middle of August that I'll be healthy enough to put a lot of my current struggles behind me.
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