As John Fogerty, that Rock N Roll philosopher, so eloquently said in "Centerfield", I'm ready to play once again. Yesterday was my appointment with Dr. Kipps to figure out what we should do next. One of my liver enzymes is still a little elevated, but nothing to cause alarm. So the big question was 'what do we do now'? Well, I am now back on the single agent trial and so we will see how it works this time. End of short report.
All of my blood numbers are looking good except the one liver enzyme. I am feeling well and my physical exam yesterday was excellent. But you have to understand that in my particular situation of being on a unique clinical trial, there are no right or wrong answers. You know you are in uncharted waters when you and the doctor are going back and forth on options and pros and cons. I think I could have swung the vote either way, but in the end it boiled down to trying to get the most out of this drug that I can. Since I am having minimal side effects and the results are pretty amazing, we decided to try the single agent trial at a slightly lower dose. We will once again do blood tests almost every day for this week. If the platelets drop or the liver enzymes rise to an unacceptable level, then we may stop it all together. The other issue is that my wine club friends will have to continue to taste without me, and I will be unable to test my son Jeff's first batch of 'home brew' beer of the season.
My appointment yesterday seemed long, maybe the longest since my first visit with Dr. Kipps. We spent a lot of time talking about all of the new and exciting drugs that are on the horizon. We also spent a lot of time talking about what we should do with me. On one hand, I am stable right now, even with not having any drugs for almost 8 weeks and what benefit am I going to get by continuing? What if we can squeeze a longer and more complete remission out of more rounds? The bottom line is that no one knows; no one has ever followed my path. (See Bob, there is a reason you call me Pathfinder). In many ways I feel fortunate that I can contribute to this process.
I feel like I need to talk about the Bone Marrow Registry program. In many cases the last hope for a blood cancer patient is a Bone Marrow Transplant. People sign up to be donors thru a simple cheek swab process, and then they get put on a National Registry. If the time comes that someone is a match to you, you will be asked to donate bone marrow cells. It is truly a life saving process. The problem is that the National Registry does not have a lot of people on the list, so many people do not have a perfect match and have to settle for something less than perfect, which of course means that there is less of a chance that the transplant will take. For those who can't find a donor within their family, the chances of finding a perfect match become grim. Only 30 percent will receive a transplant from the Be the Match Registry, operated by the National Marrow Donor Program. There are currently only 8 million people in the United States registry. That is less than 3% of the US population. The National Marrow Donor Program covers all hospital and medical expenses for donors if they are called upon to help. It is not a very invasive procedure which is performed as an outpatient procedure and you usually go home the same day. If you would like more information on how you can participate go to
http://www.marrow.org/
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