Maybe there is a better route out of this?
I am a man in the UK and was diagnosed with CLL aged 38 in 2007. I had six rounds of FCR and achieved MRD. In January 2011 ill with EBV for a year. June 2012 started FCR again. Five times. January 2013 0.0 neutrophils for eight days. May 2013 dexamethasone and rituximab. PCP pneumonia. September 2013 bendamustine and rituximab three times. January 2014 quite well but 40% CLL in bone marrow still. June 2014 started ibrutinib, 3 tablets per day. I experienced some diarrhoea throughout the use of ibrutinib, and definitely arthralgia. I managed the bowels with imodium and buscopan and the arthalgia with ibuprofen. In January 2015 I struggled to walk and was severely neutropenic. A short break with GCSF and then two tablets per day. March 2015 acute diarrhoea. April 2015 diagnosed with pancolitis. That is ulcerative colitis throughout the system. The gastroenterologist has said that the colitis has come more likely because of a weak immune system not because of ibrutinib in itself. The leukemia doctor has warned me that I might die this year. The problem is I have only three options now. 1. back on ibrutinib, managing the colitis, could cause a perforated bowel for example. Almost certainly add rituximab every two weeks for six months as well....which is depressing! Just sitting in the chemo ward and recovering gets to me. 2. clinical trial....but will any have me? 3. dexamethasone and campath followed by stem cell transplant if I get through the chemo and it takes the CLL down enough.
I have 3 lovely kids and a lovely wife. Kids 13-18 now.
Just throwing this out there!