As some may know, I am 25 years old diagnosed with CLL 11q deletion.
One of my recent consultants has been Dr. Aman at the James Center who works under Dr. Byrd. We had a phone call and he told me, as I've come to expect, that he would treat me with the next 50 years in mind vs. A traditional CLL patient where managing the disease is far less years. This of course has me very worried about my options for treatment.
From my understanding, traditional chemo therapies will not work on my subtype. I've narrowed it down to a few options:
1. One of the newly drugs like Ibrutinib. The problem that I'm finding is that this drug you have to take for the rest of your life, which isn't an option for me since I am so young. Money is definitely a reason, but is there any concerns with taking it long term (toxicity)? I believe there are studies going on to see the long term effects and the possibility of taking patients off it once they reach acceptable MRD. Does anyone have any information about this?
2. Clinical trials. Dr. Aman suggested that it would be worth it to me to go on a clinical trial before I actually need treatment. He said that my first treatment will be the most critical decision in my life, which has me taking most of my energy to think about. I know of ventecolax and acalabrutinib but are there some other drugs in the pipeline that have you all excited? Dr. Aman said he is coming out with a research paper in December that has him very excited, but didn't tell me what drugs would be included.
3. CAR T-Cell or stem cell transplant. These have me very interested because they appear to be our best chance of a "cure" which for someone my age is very appealing. My thought is, is it possible for me to be in a management mode for the next 10 years or so till these therapies are more refined? Is it something worth asking about now? My local oncologist, Dr. Winter, said that she wouldn't consider me for a stem cell transplant, but I assume that's because I haven't had any other treatments and have minor symptoms (just enlarged nodes).
Appreciate any input.