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.

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