It has been a while since I have posted but after my visit yesterday I finally have something to write about. Since I finished my treatment in November my platelets and hemoglobin have remained stable, my white count however, is slowly increasing. What this means is that the AIHA is under control but the CLL is starting to raise up its head again. After my visit with Dr. Kipps yesterday he indicated that a couple of my lymph nodes have gotten slightly bigger, but my spleen has remained down in size. None of this is cause for immediate concern, but does point to the fact that we probably should consider doing something. He would like to see me in good physical shape whenever I begin treatment. Considering how fast this can move it is probably a good decision to start looking at something now. After a lot of analysis (does that surprise anyone?) we have decided to start treatment this time with a Clinical Trial. We started the initial consultation yesterday and will probably get more definite dates by the end of this week. The treatment will require 8 days down in La Jolla the first month and then 3 days a month for the next 5-7 months. End of Short Report.
There were actually 5 different options that we discussed and for a variety of reasons the ABT-263 Trial seemed like the best one for me. A lot has to do with where your counts are, what your past issues have been (AIHA for me) and what your genetic markers are. The clinical trial that I am looking at is one that combines ABT-263 (the test drug) with Bendamustine and Rituxan. Dr. Kipps just came back from a conference of CLL gurus where he gave a presentation on the effectiveness of this drug in the trials they have done so far. Back in July I posted information about the ABT-263 trial in a single agent mode. This new trial uses ABT-263 with a combination of known CLL fighting drugs. The following paragraph details how this drug is supposed to work.
Bcl-2 Family Protein Antagonists (ABT-263) Apoptosis, also known as programmed cell death, is a natural process by which damaged or unwanted cells, including those that are or could become cancerous, die and are cleared from the body. The Bcl-2 family proteins, which are expressed at high levels in many tumors, play a central role in regulating apoptosis and, consequently, in tumor formation, tumor growth and resistance to treatment. ABT-263 restores programmed cell death by blocking the function of pro-survival Bcl-2 family proteins. Pre-clinical data have shown that Abbott's Bcl-2 family protein antagonists effectively kill certain cancer cell types.
I have to go down to La Jolla once before the trial begins to go thru all the screening process (blood tests, cat scan, EKG, echocardiogram, etc) If I pass all of that, then on to the Trial. Based on firsthand knowledge from friends that have undergone clinical trial treatments, they often come with side effects (think the Pepto Bismol commercial), unwanted changes in blood counts, and sometimes just don't work. Based on the trials that have been done with ABT-263 alone the side effects have been mild but there are several things that must be monitored such as liver enzymes and platelet count. As with any clinical trial they want you monitored closely and that is why I will be down there for 8 straight days the first month. After those 8 days I go down weekly to be checked to make sure I am not having any major problems. The next 2 months I go down for 3 days of drugs and then back weekly to be checked. For the next 3-5 months I will go down monthly for 3 days. They are not sure how many cycles that I will be receiving because it all depends on how well you are responding and if there are any side effects. On the plus side the drug company (Abbott) will reimburse me for lodging and travel expenses for the times I have to go down there. I just got my confirmation today and will go to my screening on April 1st, and assuming I pass, will begin my treatment on April 13th.
I am not really happy about doing this trial; I wish I didn't have to do it at all. But I guess it is better than the alternative. I am happy that we are starting to make a definite plan for treatment because I was getting tired of this 'waiting game'. On the plus side, I am feeling really great. Have taken a couple of trips in the last several months and am playing golf on a regular basis. As usual, I rely on Faith, Family and Friends to make this journey easier for me.
All the best,
Terry
