01/29/11 - Take a Vacation Kid!

This week I saw Dr. Kipps to figure out what to do with me. My liver enzymes have been climbing steadily since I started taking the trial drug on a daily basis, and they actually told me to stop taking the drug last Friday. So when I went to see the doctor this week it was no real surprise when he told me that he thought I should stop the trial. He told me to ‘take a vacation’ from all of this and let’s let everything settle down and see where I land. End of short report.

The strange thing is that all my other blood numbers are in great shape. My nodes are all normal and my spleen is normal. His comment was that I had an EXCELLENT physical exam. But his concern was that my liver enzymes showed no sign of leveling off or going down. He felt that the risk was not worth the benefit. He did not want me to have permanent liver damage. So what now? For now I will stop all treatments except for my monthly immunoglobulin treatment. It doesn’t seem like the last 9 months of my life (or body) have been dedicated to medical science, but I guess time flies when you are having fun. Since there is no track record for anyone that has followed my treatment regimen, there is no way to know how long this may last. Of course, the hope is that it will last a long time, but you are always looking over your shoulder to see who is creeping up on you. I will go back in a month to have the trial ‘follow-up’ checkup, and then go back in 2 months for a bone marrow biopsy which is the real measure of how deep a remission I am getting. At my appointment we talked about new trials that are coming up and possibly one of those may be in my future. He does think that it may be a while before that happens.

I was a little late in getting this out because we have been getting ready to celebrate my Dad’s wife Lois’ 80th birthday bash, which is happening as we speak at our house. It is going to be a great gathering of all sides of the family. Happy Birthday Lois, and many more.

I continue to feel good other than minor aches and pains that may or may not be related to the CLL and/or the treatment. But, as they say, it is better than the alternative. So I am going to enjoy this break in treatment and try to improve my golf game (which may be impossible), and do a little bit of traveling.

Terry

01/04/11 – Put me in Coach, I’m Ready to Play, Today

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/