I feel very fortunate that after 2 courses of FCR which had to be stopped (pleural effusions, bone marrow and neutrophil problems), I have been referred to a CLL specialist in Oxford who has agreed that I am a suitable case for treatment with Ibrutinib on a named person basis. There can't be too many people in the UK who have been allowed this opportunity.
I took my first 3 capsules this morning and hope with my fingers crossed that this works well for me. I'm hoping that it will improve my pleural effusion problem (breathlessness) in the long term as well as improving bone marrow and neutrophils. That would be marvellous.
I'm 75, fit for my age although tennis is on pause for the time being because of my breathlessness, diagnosed early 2014, 11Q deleted, swollen lymph nodes everywhere, no underlying health problems, FCR started in April and stopped in June. The 2 courses of FCR have reduced my lymph nodes and WBC considerably so I may be starting Ibrutinib from a good base. My wife and I are very positive and hopeful.