12/21/10 - Put on ‘Injured Reserve’

For those of you that aren't familiar with the term Injured Reserve, let me try to explain it and how it relates to me. In professional sports when a player that is on the roster gets hurt, the money grabbing owners put the player on Injured Reserve. This means that he is still a valuable commodity, but he doesn't take up a valuable roster spot until he can become 'active' again. My last blog said that I started a new trial that changed me to a single agent, every day dose trial. This actually lasted 7 days. On the 8^th day they took my blood and my liver enzymes had gone through the roof. They decided to give me a break for a week and see if they come back down, hence, I was put on 'injured reserve'. I had another blood test yesterday and they have come back down, but not quite enough to continue the trial at this time. Dr. Kipps believes that another week off will bring the liver enzymes back to a normal range and we may be able to begin again next week. End of short report.

I feel really good and all of my other numbers look good so I guess I get a drug free holiday. The liver enzyme rise is a known side effect with the Navitoclax (ABT—263) drug. No one is really sure how a person will respond, so when they start me again it may be at the same dose or at a lower dose. I think the sponsor (read drug company) wants to keep me in the trial and certainly Dr. Kipps will have a lot to say about what goes on. One encouraging thing about this break (and the previous one) is that my blood numbers have stayed stable since my last real treatment which was in October. So for almost 2 months without any drugs I have almost been in the normal range. As I have mentioned several times before, it is difficult to live this week to week. There is no certainty to how things are going. You feel great, play golf 3 times in one week, and then they tell you your blood numbers are out of whack. What I would give for some normalcy, some ability to plan longer term.

This last week has not been a particularly good one for my CLL friends. Two people that belonged to the Orange County CLL support group have passed away. Both Bernie and Robert fought courageous battles. They were on two different paths in fighting this dragon, Robert dealing with the after effects of a bone marrow transplant, and Bernie trying to get to a place where he could have a transplant. This makes you take stock of your own situation and how fragile life can be. My prayers are certainly with their families during this difficult time.

Let me take this time to wish all of you a Merry Christmas. I hope you will cherish the times with your loved ones, because every moment is precious.

Terry

 

12/8/10 – Starting all over again

Apparently I am such a good test subject, they want to start me on a different trial. I am not sure I have a lot of answers at this point (and they don't either), but nevertheless I started the new trial today. The only thing I am sure of is that it will be a single agent trial (one drug). The drug will be the test drug from the last trial I was on (ABT-263 or by its new name Navitoclax. So instead of taking 3 drugs I will take one, instead of taking it 3 times a month I will take it every day, instead of taking 110mg, I will take 250 (after the initial week at 100). There is no stated end to this trial. I guess it could go on forever, but that is one of the things they are testing. End of short report.

If you read my last blog, I overcame a scare of dramatically dropping hemoglobin. No one is sure why that happened, but it all came back to normal in a couple of days. The outcome of it all was that we stopped the three drug trial that I was on, and will try another approach. It will require a lot of contact with UCSD in the beginning (weekly trips), and a lot of blood tests (5 per week locally). At any time during the trial my platelets drop below a certain number they will stop the trial. The drop in platelets is the most common side effect of this drug. There is still an issue with liver enzymes rising, but I have yet to get a 'formal' answer on that yet. This was an issue on the last trial because they didn't allow me a glass of wine or a beer. We will see how this one develops.

An interesting note is that I am apparently the only one in the U.S. that has come from the 3 drug trial and has gone to a single agent trial. I guess that is good and bad. The good is that they are going to watch me very closely, the bad is that they 'have' to watch me closely. They really don't know how someone will respond to this drug after they have been treated with the 3 drug combo. So once again I am on the bleeding edge (no pun intended) of the search for a drug that will be effective. They really don't know how long I will be on this trial. I know a woman who has been on this drug as a single agent for a year (Yea, Lori), and she is responding well. One good thing that this drug is not a typical 'chemo' drug, so the overall side effects are less. If you really want to read about this drug, go to the side bar on the ABT-263 topic and you can get all the info you want.

During the last trial I did have some side effects, mostly GI issues. I guess I will see if it was caused by one of the other drugs or by ABT.

Terry