Thursday, May 29, 2008

What Will Be My Next Step?

We are weighing the merits of my next treatment. I've failed two so far, meaning my CLL cells are quite resistant to treatment.

My plan at the beginning was to use less toxic treatments with the idea that this would preserve my immune system as long as possible, and save the more powerful treatments for when I needed them. The downside to this approach is that mild treatments won't give a long remission, and meanwhile the clone is more and more unstable, leading to a complex karyotype, meaning a mixture of more and more chromosomal abnormalities, i.e. 6q del, 11q del and perhaps a mixture of even more abnormalitites.

This can make treatment more difficult.

The positive news is that I have not had any more real problems, I continue to work, I've not come down with any additional infections, and I've gotten permission at work to move to a more isolated part of the building, where I will come into contact with fewer sick people. This is one strategy I am attempting to prolong a healthy life.

I have an appointment June 6th to consider my next move. Dr. Kipps says he does not want me to get into an emergency situation with my growing abdominal nodes, perhaps requiring intervention here in Sacramento.

Monday, May 26, 2008

An update

I've been getting slightly worse as time goes on :(

I finally succeeded in getting into the Ad-ISF35 gene therapy trial offered through UC San Diego. Dr. Castro is the principal investigator.

I had a rough time of it during the aftermath of the injection process. I had significant chills and vomited three times during the night and the next morning. I would recommend not eating lunch and dinner the day of the injection. According to staff, you will be sick.

My results were good for about a week! Two weeks after the trial, I noticed all of my nodes were down about 1/2, and my terrible abdominal nodes seemed to be smaller, to the point I was actually thinking of going back down a couple of waist sizes.

Unfortunately, that was not to last. At this point, three weeks after my trials and tribulations, my nodes have returned to pre-treatment levels, and I've grown a new, large node at the mid-line of my abdomen. This is proving to be very painful and troublesome. I am worried at this point about abdominal obstruction. I've been taking medication to make sure I don't get constipated.

At this point, I'm not sure what I will be doing. I am a bit worried about Richter's transformation. It is more common in patients with 11q del (me), large abdominal nodes (me) and increases with length of time with CLL (me).

I am trying a heating pad morning and evening to try to 'soften' the lymph nodes. Maybe it is helping as I don't feel quite as bad today.