First off I want to apologize for not getting this out sooner, but I had a good excuse. I was playing golf both Friday and Saturday. Saturday's golf was an annual tournament that is put on by my friend Dan Gooch, and it supports golf (for the past 36 years) in all the Long Beach Schools, all the way from the high schools to Long Beach State. The amazing thing is that we (my two boys and two of their friends) won the "A" flight. So it was a lot of fun.
So now back to the medical stuff. Last week there were two visits to La Jolla, one on Wednesday (for my IVIG) and one on Thursday (to see Dr. Kipps and figure out where I was and what the next steps were going to be). The good news is that as of last Thursday I was completely off of prednisone, and my hemoglobin was holding at 12.5. This is significant because the taper was so fast, and I still was able to hold my own. The results were good enough that Dr. Kipps decided that NOW is the time to start treatment.
So now the question is: what the treatment will actually be? Dr. Kipps thinks that I will have a very good response to a combination of Rituxan (described in more detail at a link on the right) and high dose methylprednisolone or HDMP. He would like this to be a 5 day regimen every month for 3 months. The thinking is that Rituxan and HDMP will not only treat the CLL, but also have an effect on the autoimmune hemolytic anemia (AIHA). The way this works is that the HDMP induces apoptosis (cell death) by a number of mechanisms while Rituxan sensitizes leukemia cells to apoptosis (die) by downmodulating expression of the anti-apoptosis protein bcl-2. Therefore, it is possible that Rituxan sensitizes CLL B cells to steroid induced apoptosis enhancing the effectiveness of HDMP in refractory CLL. Well, some of you may be interested. It is also scary that I sort of understand all of that.
The expected results are that my white count (currently at 107,000) will drop below 10,000, and that my bone marrow will show no signs of CLL. The big question is what will be the expected remission period? No one really knows that answer and the best guess is 6 months to 2 years. The next question is what happens then? This therapy can be used multiple times, but the effectiveness eventually wears off, and then another type of treatment has to be explored. Although I have read about many other types of treatment, those options haven't really been discussed with Dr. Kipps yet.
Even though I have had Rituxan before, and only had a reaction at the first infusion, there are still risks and potential side effects from this therapy. The biggest single concern is that of infection. This can take the form of fungal or viral, and there is a whole list of drugs that have to be taken before, during and after the treatment. The second issue is the rate of infusion that Rituxan is given. As was mentioned in my post in October, I had a serious reaction to my first infusion of Rituxan and it was all as a result of the infusion being done too fast (plus it took 11 ½ hours). At the Moore's Cancer Center (in La Jolla) they take the rate of infusion VERY seriously. In fact, the first day, they only give you a dose of 100mg (out of 750mg) to make sure you don't have any reactions. However, in most patients, the reactions lessen the more times you are treated with it.
The next question is when will this start? As of today, I still don't know. They are trying to schedule me for 5 straight days (Mon – Fri), but the problem right now is that the infusion center in La Jolla is booked up. The timing of this is a concern to me, because last time, 6 weeks after I went off of prednisone, I started showing signs of AIHA, which is why I had to go BACK on the prednisone, so there is only a small window of opportunity here. I am hopeful that I will hear something on Monday of next week and we will have a schedule, and for right now, it looks like the week of June 30th, or July 7th. Then it would be two more times on a 28 day cycle, which would mean I would get done sometime in the beginning of September.
Today I got the results of my bone density test. My regular doctor had requested the test because of the osteopenia that was found in my chest xray that was taken in January. The results of the test (which is more accurate than an x-ray), showed I didn't have osteopenia, but I had osteoporosis, which is worse. So now, I have that to deal with. Certainly the use of steroids has not helped the situation, and the fact that I will be getting high doses of steroids during my treatment, means that it will probably get worse unless they prescribe something like Fosamax to help keep my bones strong. In case you are wondering, this has nothing to do with my CLL; it is just another medical issue that I have to deal with. Did I fail to mention the kidney stone that sent me to the emergency room in March?
With all of this, there is a lot of uncertainty, and waiting around for things to happen. When I get a definite starting date for the therapy, I will update the blog once again.
Terry
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