05/05/10 – At the Starting Line

Using an analogy that 'the lights are yellow and we are waiting for the Christmas Tree to turn to green' (that's for you Jack). Does anyone else get this? I have passed all the medical and administrative hurdles and am scheduled to begin the treatment on Tuesday, May 11^th. It looks like I will be down there for 5 nights for the first month of treatment. They proceed very slowly to watch all of your blood levels and reactions for the first doses.

Other than the fact that I have been diagnosed with shingles, I am doing fine. I don't have any of the redness or blisters but just have the stabbing pain. After two visits to Prompt Care and two incorrect diagnoses, I finally got confirmation on Tuesday when I went to La Jolla. I apparently don't have any of the classic symptoms because I am on an anti-viral, and that probably stopped the outbreak. It was interesting to hear their comment at La Jolla ' oh yeah, we see that all the time' to the comments at Prompt Care 'hmm, never seen that before, must be a pulled muscle, it can't be shingles because you have no rash'. I did have to increase the dosage of the anti-viral to help get rid of it. I was afraid they were going to postpone my Trial again, but they said with no outbreak, I am good to go.

I have talked to a couple of people that have been on the Trial drug by itself and there are minimal side effects. A few GI problems and some fatigue, but that goes away in a couple of days. Since we are adding two additional drugs to the trial, I also have to be aware of any side effects from those as well. One of the two, Rituxan, I have already had many times, with no problems at all. The last drug, Bendamustine is given in a smaller dose than it would have been if I was just getting it alone, or in combination with another drug, so I expect there to be few problems with that as well.

The Trial will last 6-8 months depending on how I respond and if there are any drops in blood levels that would cause a concern. There is a woman at UCSD that is on this same protocol and after 4 cycles she is responding quite well. So we can hope for the same response from me.

I will keep everyone updated more frequently next week during the trial.

Terry