01/17/08 - Slowly moving forward

I have not updated my blog in a while because there has been nothing much going on for the last two weeks. After the last doctor visit (on Jan 3rd) I had started decreasing my Prednisone to see if I could keep my red blood count up. After 7 days I had a blood draw but didn't get the results back until 11 days (go figure). My counts are still going up (14.6 from 14.1) so that is good news. After we got those results back they lowered the Prednisone again for another week. Next Monday (the 21st) I will have another blood test to check my levels, and if they are still good, we will lower that dosage once again (I am currently at 40 and 20 on alternating days). This continues until I get down to about 5 mg / day, and then the tapering off becomes much slower.

So it appears that the anemia is slowly getting under control and because this was the greatest area of concern right now, that is good news. We all hope that I will continue to keep producing the red blood cells (and not kill them off), so that we can get over the AIHA issues. AIHA only occurs in about 11% of CLL patients, so I guess I am one the lucky ones (?). The good news is that Prednisone seems to get it under control in about 60% of the patients.

I have had some upper respiratory issues for the last two weeks, and have been on high potency antibiotics to keep me from getting anything serious. Dr. Kipps said that with all the steroids that I am taking I could have pneumonia and not even know it because the Prednisone would mask all the normal symptoms. They even did a chest xray to see if I had any fluid in my lungs, but that came back negative. Although they did see my 4 broken (and healed) ribs, osteopenia (decrease in bone density), and collapsed alveoli (the small sacks in the lungs). I told them that I didn't want to hear about any other problems because I have enough to deal with right now. Apparently none of the things they found are cause for immediate concern, but should be followed up at some point in time.

So, other than a slight cough, I actually feel pretty good. Even played golf with my Back9 buddies this week. I am also gaining my weight back (up 13 lbs from my lowest). This could be from the Prednisone because I seem to have a great appetite. So we will see if I lose some of it after the dosage goes down.

Yesterday (the 16th) I went to La Jolla and had my 5th round of IVIG treatment that took the normal 5 hours. As usual, it was uneventful.

On the 29th I have my last IVIG treatment and an appointment with Dr. Kipps. If things continue the way they are now, he will probably outline a treatment plan and timetable.

There is some good football on this weekend. Go Chargers and Go Packers.

Terry