Yesterday I had my two month visit with Dr. Kipps and the results were not as great as we had hoped they would be. My white count continues to rise (now at 67,000 from 38,000 in March), my lymph nodes and spleen are slightly larger. All of these things point to the disease returning. Although I feel good and have no other blood count symptoms, it is a sign that some treatment will have to begin sooner than later. Dr. Kipps gave us two papers on two new Clinical Trial therapies that are having promising results. He wants me to review them and at my next visit in June probably make decision if I would want to begin one of these two clinical trials. End of Short Report.
All of this is not really unexpected, but the waiting for another round of treatment to begin is frustrating at best. It is perplexing that I feel so good, yet in the background the beast is lurking. One question that some people may ask is why not just starting now, since you know that you are going to have to have it anyway. According to Dr. Kipps, right now there is no 'red flag' that is pointing to immediate treatment. I am nowhere near where I was in October of 2007. Also the two clinical trials are both ending Phase I status, and will begin Phase II in the next month or two. I think he is waiting for that to happen.
The whole issue of Clinical Trials is a bit of a complicated situation. Since there is no standard treatment for CLL, Clinical Trials offer the best hope for a longer lasting remission and ultimately a cure. I have always thought that I might like to be a part of a Clinical Trial as part of my treatment. The complexities of the two Clinical Trials that Dr. Kipps is offering to me are very difficult to explain let alone understand. One has to do with removing some of my white cells, treating them, and then reinjecting them back into my blood stream. Then after that is done, a light course of chemotherapy is given to go after the remaining cells. The second treatment is an oral drug that targets specific markers on the blood cells. This is the most simplistic explanation that I could come up with. Another issue that makes a Clinical Trials decision difficult is that Dr. Kipps is not pushing either one, he is letting me choose. On one hand you could say, well he is the expert, what does he think?, but on the other hand, you can't 'force' someone to go into a Clinical Trial, it has to be their 'choice'.
I could be retreated with the Rituxan and HDMP, but that will probably only give me a short response. I could also do a more standard treatment, but that would probably also have a partial response.
On an upbeat note, May 21st was the four year anniversary of my retirement. Even with all the medical issues that I have gone through during that time, I wouldn't trade my situation for anything. Just this week I played golf twice and walked both times. May 21st is also my aunt Evelyn's birthday, but being a gentleman, I won't say how many years. My Dad continues to improve medically, and although he still has a feeding tube in his stomach he is taking most of his food by mouth (although very slowly). The hope is that the tube will be removed very soon, and he will be all on his own. He and Lois actually went to the symphony for the first time in 9 months last week, so you know he is improving.
So, in the next month, I will have my monthly IVIG, study up on the clinical trials and try to form an opinion on which one might work the best for me. Some of it might come down to logistics, how many days I would have to spend in La Jolla. Since it is a Clinical Trial, the drug costs are covered by the Cancer Center and the drug company, so that is not an issue.
Terry
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