2/26/08 - Still 'Looking Good'

It seems like some people like the detail of my reports, and some just want to cut to the chase. So in order to satisfy both camps, here goes:

Short and sweet:
Dr. appt today, good report, red count stable, and white still going down. Plan to taper off Prednisone in a month, no other treatment right now, go back in 2 months to see the Dr.

Verbose Version:
Today I had my monthly appointment with Dr. Kipps and all is going well. As you might remember, I have been tapering off the Prednisone for the last month. I am now down to 5 mg / day (from 60 mg / day). I was having blood tests every week during this time to make sure that my counts didn’t start to drop (the hemoglobin – red), and the white count (WBC)didn’t rise. At the end of last month, my hemoglobin was 14.3 and WBC was 111,000. Today my hemoglobin was 14.3 and my WBC was 63,000. So even with the decrease in Prednisone dosage, my hemoglobin stayed the same (which is at a normal level) and my WBC has dropped. My WBC is now at the lowest level it has been in almost 3 years. Now before everyone gets too excited, this probably is temporary. With the combination of previous Rituxan, Fludura and Cytoxan treatment, and the Prednisone, and the IVIG, it has scared a bunch of those bad old lymphocytes to get out of Dodge.

For right now, Dr. Kipps wants to wait and see. He wants me to taper completely off of the Prednisone and see how my numbers hold up. He has put me on an alternating dosage of 5mg one day and 0 the next. We will do regular blood tests and then at the end of a month if all my numbers look good, I will go completely off of the Prednisone, but still keep doing regular blood tests. At my current counts and with my current condition (lymph nodes, spleen, etc), Dr. Kipps is in no hurry to begin additional treatment. But because we have not really completely treated the ‘cause’, we need to be ready when and if the WBC numbers rise. So today he gave me additional information about two treatments that he may want to try once the time comes. It is very encouraging to know that even though I am stable right now, we are looking forward to the time when I may need additional treatment, and we will already have a plan in place.

I just can’t stress enough how impressed we are with Dr. Kipps and all the staff at UCSD. We are certainly blessed to have someone so competent, close in geographical proximity, and so caring. It certainly takes some of the burden off of dealing with my CLL. He is constantly researching ways to treat and ultimately cure this disease. He just had his latest study published the week of February 11-15 in the Proceedings of the National Academy of Science. To learn more about this study click on the INFORMATION LINK on the right side of the page, and then click on ‘Dr. Kipps and Gene Therapy’.

02/16/08 - Still Decreasing Prednisone

Unlike Roger Clemens, I am admitting the use use of steroids. The good news is that I am continuing my tapering off schedule of Prednisone. As of today, I am at 5 mg per day (remember I was at 60 mg per day). I will continue this dosage if my numbers continue to stay up. I am still having my weekly blood test to make sure that I am not killing off my red blood cells. As of this week my hemoglobin is at 14.4, which means that it is increasing even with me decreasing my dosage of Prednisone. Another effect of Prednisone is reducing the White Count. I am now at 86,000, which is lower than I have been since December of 2005. It will be interesting to see how my White Count behaves when I go completely off of the Prednisone.

I am still feeling pretty good, and I even played golf 3 times this week, which is the most that I have played since September. I still have a slight cough and some mild congestion, but nothing that is too serious.

I will have my weekly blood test next Tuesday and then my next appointment with Dr. Kipps is on February 26th. At that time we will probably discuss what the options and next steps might be. He will either keep me on the 5 mg dose of Prednisone, or taper me off of that. He may also discuss a treatment of Rituxan to reduce the white count even further.

All for now,
Terry