Married with two children (both in their thirties, just!) and one granddaughter. Now retired but worked as an IT consultant for a Swiss bank. Now living in Essex.
I was first Diagnosed with CLL in November 2008 after seeing the doctor because of suffering from extreme tiredness, fatigue, and night sweats. Was referred to a Consultant Haematologist and put on watch and wait with six monthly check-ups. It would be an understatement to say the news of CLL was a bit of a shock but at least it was in it's early stages and possibly may not affect me for some time.
It was nearly two and half years later in March 2011 that I was told the CLL had escalated and I would now need chemotherapy. I happened to be in hospital at the time with breathing difficulties, which was later diagnosed as heart failure as a result of an infection. This infection was thought to have been attributed to the effects the CLL was having on my immune system. A CT scan I had whilst in hospital to confirm Pleural fluid around the lungs also showed a number of swollen lymph nodes and a swollen spleen, hence the need for chemotherapy. I had six courses of Fludarabine phosphate, Cyclophosphamide, and Rituximab (FCR) once a month from April till September 2011. It was not a pleasant six months for me. About an hour after the first session of infusion of Rituximab I began to shake violently all over, my wife called the haematology department and asked if this was attributed to the treatment. Apparently it was and after about 15 minutes the shaking calmed down and I was ok again, just very tired. The shaking happened again after the second Rituximab infusion but to a lesser extent and never occurred again with the consecutive treatments.
In June that year after the third course of treatment I was admitted to hospital as an emergency with a burning fever and high temperature. I was diagnosed with neutropenic sepsis (severe infection of the blood) and placed in quarantine and drip fed antibiotics for five days. I only remember the last couple of days in hospital on that occasion, the rest of the time my family said I was in and out of consciousness and very confused. It took a few weeks to recover from that episode. My chemotherapy treatment was continued and I completed the course in September that year. I did however contract another blood infection (sepsis) in August but it was not as bad as the June attack.
My six month course treatment was deemed successful and my enlarged spleen and lymph nodes returned to normal size. I am currently on the watch and wait again with check-ups every six months. It has been nearly two and a half years since my last chemotherapy course. Current on-going symptoms are tiredness and fatigue with low energy levels but a part of this may be attributed to the heart failure as well. I do worry that in the future when (if) I have to have another round of chemo whether the severe infections will come back?
I note that a number of people on this forum know all about the various prognostic factors and have had the tests to find out what the values are. I myself have thought about these tests but there's a big part of me that really doesn't want to know, and so far I'm happy to be in the dark as it were.