08/30/08 – Third Round Complete

I am pleased to report that the Third Round of treatment went as planned.  My White count is down to 13,600 which is the lowest it has been since around 2000.  My hemoglobin is at 13.6 which is within the normal range for me.  It seems that the Rituxan and HDMP (high dose steroids) treatment seems to be getting the CLL under control, and also controlling the Autoimmune Hemolytic Anemia (AIHA). The problem is that my counts are bouncing around a little, and there was mention of a fourth round of treatment if the numbers didn't look good at my next appointment on September 23^rd. I am generally feeling pretty good, just having the normal reaction from the high dose steroids (tired and cranky). End of Short Report!

 

There always seems to be some sort of hitch associated with medical issues.  On August 12th I had my monthly appt with Dr. Kipps and he said I was on the right path, and my lymph nodes and spleen had both shrunk substantially, which is good.  On the down side, my white count at the beginning of the second round was at 23,000. Two weeks later when I had my appointment with Dr. Kipps it had gone up to 30,000 and my platelets were a little low.  He said he would have liked to have seen a more definite decrease after the second round, but he also said it could just be part of the cycle. For the first time he mentioned that we might want to consider a FOURTH round of treatment.  This was the first time we had heard of this, and so we were a little surprised.  He indicated that if we were almost there it would be better to have one more treatment to get rid of any residual cells in the bone marrow and try to have a more complete response.  Unfortunately it makes it difficult to plan much of anything when you don't know what is going on. He will not be able to determine if I need a fourth round until my Sept 23rd appointment with him.  At that time he will determine if I need another week of treatments which would start on Sept 29^th (which we have already scheduled, just in case).  So for now all of that is up in the air. 

 

While I was down there for the infusion the good doctor stopped by and chatted with me for a while going over the results of my blood test on Monday (the first day of treatment). He once again said he thought things were going well and we would just have to wait until after the 23^rd to make the decision about another round. If you ask me what my 'gut' feel is about a fourth round, I would say I will need it.  I am hoping not, but the fact that Dr. Kipps has already brought it up means that he is seriously considering it. So just when you think you may have a breather for a while, things change.

 
 

Once again we stayed down in La Jolla for the week.  We cooked in two nights, went out to La Jolla for dinner at a GREAT Italian restaurant recommended by my friend Kevin.  We also went out with Lisette and Angelo one night, so it was a nice relaxing getaway.  Speaking of getaways, we are going over to Catalina on Tuesday or Wed for 5 or 6 days (depending on how I feel).  We will be staying in a cabin in one of the coves with our friends John and Toni, and meeting Ro & Sue and Bruce and Connie who are coming over on the Orfila's new sail boat.   

 
 

I am generally feeling pretty good, a little tired and having some residual steroid after effects, but I now know that those will taper off and I will be back to my normal cheery self. 

 
 

All for now.

 
 

Terry   

 

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