08/02/08 – Round 2 has been completed!

Last Monday (July 28^th), we went down to La Jolla for my second round of Rituxan treatment. If you don't remember, the treatment is a weeklong and is given for 3 consecutive months. So far it looks like the treatment is doing what it is supposed to be doing. Before they start the treatment they run a battery of blood tests to make sure that your numbers are all going in the right direction. It turns out that my numbers are all looking good. It also appears that the after effects are less this time than after the last treatment. (End of the short report)

The more detailed report -- My white count is down to 23,000, which is the lowest it has been since 2003. (Normal is between 5 and 11,000, and mine has been as high as 787,000). My hemoglobin is at 12.9 which means that my AIHA (autoimmune hemolytic anemia) looks like it is under control. My platelets are over 300, which is another good sign. Other than sitting in chair for 6 -7 hours a day it was a pretty uneventful week. I had no real side effects, and the treatments went according to plan. Every day I got
Cimitedine (for upset stomachs, which is really Tagamet, except much stronger), and HDMP high dose steroid, Solumedrol. On days 1, 3 and 5 I got my dose of Rituxan (790mg). On day two I got the nebulizer infusion of Pentamidine, which is an antibiotic to protect me against pneumonia. On day 4 I got my monthly dose of IVIG (immunoglobulin). So as you can see, there wasn't much down time on any day.

This time we decided to just stay in La Jolla for the week (I know, a tough decision). Even though it is not a bad drive down and back, it is still about 1 ½ hours each way and when you have to be there at 8am, it means you have to get up pretty early to get down there. It turned out to be a very good decision because it was just so much more relaxing to not have to worry about the travel (also saved a lot on gas). We wound up staying in a condo, with a full kitchen, so we had two meals in, made all of our breakfasts and lunches, so that saved us some money as well. So when we got done each day around 3:30 we could just drive around La Jolla, or go back to the condo and relax. We also had some time to visit on different nights; dinner with Lisette and Angelo, dinner with Sue and Duane, who also spent the night, and dinner with Rick and Cindy, who were in Carlsbad for their annual stay. All of those visits made the time go much quicker.

I seem to be feeling a little better after this round of treatment. It took me about 3 days to start feeling a little normal last time, and even though I am not 100%, I think I notice a difference for the better after this treatment. So I am hoping the recovery time will be even quicker this time.

In two weeks I will have my monthly visit with Dr. Kipps and then two weeks after that I will have my last round of treatment. So far, this looks like it is having pretty positive results. Thanks to everyone for the text messages, emails, phone calls, visits, and prayers. They are all very helpful and uplifting.

Terry

06/03/08 – Update & Other Musings

Today I had my bi-monthly infusion of IVIG in La Jolla. At the same time they do the standard blood tests, and check to see how I am doing. My hemoglobin has dropped just a little from 12.9 to 12.3. This is what they call an insignificant drop, and my Case Manager told me, "I was doing good". I am doing so well they want to taper me off of the Prednisone completely by June 19^th. They want to do this mainly because that is when my next appointment is with Dr. Kipps. If I continue to hold my own, and get completely off steroids by the 19^th, then the plan will be to start therapy the next week.

The Therapy - We still haven't determined what that therapy will be, but my guess is that it will be a course of monoclonal antibodies. This is not chemotherapy, but is a drug that attacks a specific cell marker. One choice would be Rituxan (generic name rituximab) and high (pulse) doses of steroids. Back in October, I had this therapy, but I only had it one day a week for 3 weeks. When it is used this time it will be done over a 3 month period; the first month will be 4 consecutive days, the second and third months of 3 consecutive days. So there will be a total of 13 days of treatment spread out over 3 months. So you can see that this is a much more intense therapy than I got the first time. The number of consecutive days may require we stay in La Jolla during these treatments. The treatments are given at a VERY slow rate. If you remember, the first time I had Rituxan, it took 11 hours. Who knows if this will take that long or not. They say they you adapt to some of the treatments over time, and are able to tolerate them better (less side effects and faster infusion rates). The other therapy option that was discussed was the use of another monoclonal antibody called HUMAX CD20. At the time we discussed it in February, it was still in clinical trials and Dr. Kipps thought he could get me into a trial. Since that time, I have read that the trial is over and now they are compiling the data. I don't know if the good doctor could or would want to get me into this trial. It is similar in nature to Rituxan, but it does its job differently. I am sure we will discuss this on the 19^th.

Cancer Funding - I know this next topic may incite riots and make some people crazy, but I have to bring it up. I am not making a political statement, but just stating the facts. The Federal Government funds much of the research for cancer related programs. Over the last 30 years, the annual amount has gone up and down, with different administrations and different economies. In 2007 the National Cancer Institute's budget was $4.75 Billion. This week I read an article in Newsweek that stated the war in Iraq has cost us over $340 Billion. Now of course, there will be those of you that say that the war was necessary, and I may not totally disagree with that, but man, that is a lot of money (not to mention the lives lost), and only time will tell if we have done any real good. The article went on to state that the $340 Billion is more than the TOTAL amount of funding for cancer research in the last 30 years. Over 1.5 million people will be diagnosed with cancer this year in the United States. In the U.S. this year, an estimated 560,000 people will die from cancer. The National Health Institute estimated that overall cost of cancer was $219 Billion in 2007. (that is EVERY year folks, and going up all the time). I am sure that there are many other government programs that receive money for questionable reasons, but we are talking about a LOT of people here. It seems to me that we may have our priorities screwed up. And don't get me started about Universal Health Care or the FDA.