I am lucky to be on ibrutinib for 4 years now. I am delighted to inform the CLL community that my blood results show no signs of CLL the last 9 months and I wait the more sensitive blood results for minimal residual disease. I will keep you posted on this.
I enjoy a good healthy life with no side effects and without suffering from infections. I do have mild joint pain on thumbs and the toes of my right foot but I don’t believe this is due to ibrutinib. Almost all my friends and relatives, similar age as me (60s), suffer joint aches.
However, I would like to report something really strange and amusing: my shoe size increased by 1cm with the first 2 years on ibrutinib. I am not sure if this was cause by ibrutinib but my weight did not change much: I was 63kgr before ibrutinib and now I am 66krg. I am a woman and I know that hormones or pregnancy can cause this. I was in menopause when I started ibrutinib and I did not take hormone replacement. Let me know if others on ibrutinib observed this.