I am 49 and was dx. In April 2015. I have been on watch & wait or should I say watch & worry. I am being followed by a cll doctor at Dana Farber in Boston. My markers are 11q (less than 10 per cent), CD 38 positive, Zap 70 negative an unmutated ighv.
My only symptoms are many swollen lymph nodes ( neck, jaw line, under arms, groin) and a little tired at times. So, I went to see my doctor yesterday and after a ct scan he told me that I should start treatment soon ( he suggested November). I am so confused by this, as I understood that I long as I felt ok I should hold off on treatment. He does not want to start having issues as lymph nodes in liver area are swollen. He suggested 3 treatments
1. FCR ( 6 months)
2. FCR plus duvelisib aka. Ipi-145 (6 months of FCR plus 2 years of maintenance with duvelisib)
3. FCR plus ibrutinib ( 6 months of FCR plus lifelong maintenance with ibrutinib)
2 and 3 are trials
Has anyone done any of these?
What put me over the edge was that he said that FCR alone would only put me into remission for 2-3 years.
I thought that some people even with these markers were able to get much longer remissions.
Need to decide soon, I am pushing treatment for after the holidays, but he stated he wants to see me before to be sure things are ok.
Any help is greatly appreciated. Sorry for the rant.
Thank you in advance.