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.
Many thanks
Vasso
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vepiskop
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What a lovely, cheering post to read with my breakfast. Sorry to hear about your shoe size, I have no idea about it, but it doesn’t sound as if you kind too much!
Thank you, and good luck👍
Cx
How exciting, I am so happy for you. Best news ever.
Hi. I'm glad to hear your progress on Ibrutinib is a positive one, I have a few aches and pains but nothing too bad. The thing I have noticed is that my once dead straight hair now has a bit of a curl in it, weird!!!
What great news!! I hope it continues for a long , long time! Heres a link to an article from Cleveland Clinic about feet getting larger as we age. Yep, its a "thing" and it explains why.
Your post made my day because to be honest, at 1yr and 9 mos., I was thinking that maybe I had "plateaud" but hearing your good news makes me hopeful I will get similar outcome and if it takes time, so be it because that could be good news in and of itself, since we have "all the time in the world"...right? ;-)!
Your post also caught my attention because just started noticing a little bit of pain with my toes, but then again we just had "Comic Con" in San Diego and walked a lot (although, it seems mainly on my right foot), so we'll see if it goes away or lingers.
Many thanks for your replies! Yes, I believe that if you keep CLL at bay in your blood with ibrutinib, you allow your immune system to recover and strengthen to fight as well and reach the bad cells clones (cancer stem cells) deep inside the bone marrow that actually generate CLL in our blood. I wish you all complete remission or even cure for those of you with good prognostic markers!
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