Hi all!
After a reminder today of a member, I simply steal the time in my hectical life to finally write some, as promised earlier, about my treatment with FCR.
Part One:
After a lot of researching, I finally felt that FCR was the right path in the treatment of my CLL. It took some time for that decision and do not yet know if it was correct. Wrote some about my considerations in a previous thread.
healthunlocked.com/cllsuppo....
The first FCR-round started in the morning of the 13:th of October 2016 after being in the hospital for some checkups since the 11:th.
During the first infusion of Rituximab, I was under constant surveillance of a medical team with several MD, nurses and apparatus. This due to some very rare, but existing life threatening side effects of the preparate. Everything went quite well, other than some side effects of getting very tiered, constant hiccup for 5 hours and a headache. Left the hospital the day after, with more than 40 tablets of cyclophosphamide and Fludarabine in my pocket to take the next two days. The same day as the infusion I also got them later that evening, so three consecutive days totally.
Two days later the first really unpleasant side effects took place with a seveare nausea and anorexia that hit me as a sledge hammer. I costantly vomited several times per day the first week and every time I brushed my teeth for the next two weeks after. I was fatigued, but more or less used to it due to the CLL before the treatment started, but that was nothing compared to what was waiting.
The WBC went down from 87 (87 000) to 52 and then 14 the first tree days and then 2,4 after a week.
After the first treatment the Thrombocytes, Red bloodcells and everything else looked good.
Rather the same side effects round two and three, but after round four in January 2017 things started to happened. I complained to the MD´s of severe fatigue and that it felt very wrong to take round five. I even spoke to my partner not to take the treatment anymore.
Remember all to well sitting in the kitchen with the tablets before me and saying to her that it feels like the tablets are going to kill me. Was near to abort the whole treatment. I was indescribable ill. Fatigue out of explanation, severe nausea and anorexia.
But, I swallowed the pills.
Two weeks later the hospital called and asked me to come immediately for hospitalization. The latest blood samples was low. Examples of that was haemoglobine 73, White total 0,1 (100!) and thrombocytes (platelets) 13. It was a life threatening situation they told me. They did not had to say it. I felt it.
Three possibilities was explained. Either my bone marrow was suppressed, a autoimmune reaction or transformation. I hoped for the first and later (in June 2017) it proved to be the case.
After infusion of thrombocytes and blood, I felt a little better and was at home two days later. The following days I was awake for around two-four hours a day.
Two months later in May I was forced to get an ambulance to the hospital after more than 40 C (104 F) in fever and unable to walk.
Part two later…
I was diagnosed with Squamous Cell Carcinoma on my chin today.
White count increased after starting Brukinsa
VACCINATIONS FOR PEOPLE WITH CHRONIC LYMPHOCYTIC LEUKEMIA (CLL/SLL)
Ivermectin
