It's been a year or so since I last posted about my Ibrutinib progress. Here is my latest situation.
After FCR failure, I was put on Ibrutinib. This did its work and I was on the miracle drug for 21 months. Then suddenly my kidney function deteriorated dramatically and my blood calcium level became raised so my CLL consultant took me off Ibrutinib in June (bloods normal at that stage).
Now, six months later, my blood scores are still all in normal range and I am feeling really well. I appear to be in progression free survival mode and I hope that will last for longer. I have a blood test and consultation every two months.
I have had bi-lateral pleural effusions since I was diagnosed with CLL. After many drainages, I still have some fluid in my lungs which the doctors can't access but I manage quite well with reduced lung capacity and will have to put up with that. At least I can walk up hill slowly with my stick (I'm 77) and after getting home, my breathing returns to normal after a minute or two.
Despite having been in hospital twice this year (pneumo chest infection last Christmas and then kidneys in March), it is so good to feel well again although I can't help wondering what treatment will be appropriate for me when I relapse. Might it be Idelisibib and retuximab or maybe venetoclax if I can wait that long until it is approved.
Happy Christmas everyone. Cheers.