My journey (so far…)
I am a 65 year old man living in the UK and currently on the FLAIR trial (Rituximab / Ibrutinib).
Two years ago, my then partner, who was a homeopath suggested that I had my lymph nodes checked as they had been swollen for some time. I thank her for that.
After numerous procedures including CT Scan, Bloods, Ultrasound, fine needle aspiration etc I was diagnosed with SLL stage 3A / CLL Binet stage B. Enlarged lymph nodes and spleen but essentially asymptomatic. I may have been like it for some time, possibly years.
I was then put on watch and wait which I did not find too depressing. Probably because I considered that I was lucky to have this instead of the Lung Cancer which took my wife in 2011.
At the end of March 2017 my WBC and Lymphocyte counts were rising quite quickly and I was offered a place on the FLAIR trial.
I was lucky and started on 24th April with a Rituximab IV infusion plus Ibrutinib tablets and a cocktail of supporting medication. (Aciclovir, Alloprinal and Co-Trimaxozole)
On the 9th May I went to the CCLSA conference in Liverpool and started to feel the effects of the CLL and or medication. Occasional difficulty getting up and down the stairs quickly etc.
The main side effect I have had, possibly from Rituximab or Ibrutinib has been joint pain which occurs in various parts of the body for a day or two and then disappears. Worst was a lost night’s sleep to a wrist that would not stop sending the pain in spite of Ibuprofen which is my last resort medication. I think I am full of enough drugs already
At the end of May I ran the London 10K and completed the course in 65 minutes. This is quite slow for me but the warning signs were in the training as I could never manage to keep running for long.
However, the treatment proceeded and by the July things were better. I completed the Wimbledon 10K in 59 minutes which puts me back to normal fitness.
My Rituximab infusions are complete and I am now on Ibrutinib for the foreseeable future.
I feel blessed to have a restored quality of life and intend to make the most of it.
I feel in some ways that CLL has been the reminder and that I may achieve more because of it.
Let us wait and see.