I just wanted to provide a brief update on my results on Ibrutinib after 10 months of treatment for those starting Ibrutinib. I’m 61, living in Canada and my markers are 11q and 13q deletions and unmutated LgHV.
To summarize, Ibrutinib continues to be working really well for me so far. While I had a few side effects early on they were fairly minor and manageable. For the last few months I have been side effect free.
Bloodwork taken in early January shows my WBC is 12 (normal range 4 – 11) and Lymphocytes at 6.4 (normal range 0.8 – 3.5) so getting very close to normal ranges. All other bloodwork is in the normal range. At start of Ibrutinib treatment in mid March 2020 (my first treatment) my WBC was 148 which spiked to 238 after the first two weeks on Ibrutinib before it started coming down after the first month. The last time my WBC and Lymphocytes counts were this low was way back in May 2015 – about a year after first diagnosis!
The latest side effect I was experiencing was heart burn almost daily for a few months which I could easily mange with antacid pills. But I have not experienced heart burn for the last few months now. I tried changing my diet, which did not work but I think I may be drinking more water which could be helping matters.
So, I continue to be very happy with the amazing results!
Stay safe everyone.
Mike
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Lakeviewg
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Great news. With being on Ibrutinib, do you know if you have effective T Cells. I'm on Acalabrutinib and although it is working well, I don't know if I will have effective working T Cells. Has you oncologist said anything about this. Question driven obviously by covid and whether the vaccine will work on us individuals treated with a BTK inhibitor.
No, I don't know about that, my doctor has not mentioned anything about a test for T cells.
We did talk about the Covid vaccine at my last visit of course and he is recommending I get it. But he also admits it is not known how effective it will be for CLL patients in general, which I already knew. But we both agree that any immunity it may provide is better than nothing.
Just curious, do you know what sort of test is done to find out the number of effective T cells you have? I assume it is not part of regular blood testing.
Great news and not surprised inbrutinib is a wonderful life saver 4 years for me now and still doing great and like you the only mild side effect now even four years on is heartburn but it's not bad and I deal with it , well done and I think you can now look forward to many years on inbrutinib all the bed
Congratulations on your initial success with Imbrutinib, and I hope you continue to do well. Have they stopped treatment, or will it still continue until the Lymphocyte number and percentage are within totally normal range?
No I will continue with Ibrutinib, likely for a number of years as long as I can tolerate it and it continues to work. I am hoping though that if I stay on it for a few years I will then eventually have another medication added (Venetoclax maybe) so that I can then reach UMRD and be off all medication for a while.
But for now my hematologists (and I agree) does not want to change what is working so well at this point.
Great to hear your good news story. I’ve been on Ibrutinib for a year and am also showing near normal blood numbers. Like you, I’m hoping to add another drug at some point and be off medication for a while if the combo works. The when and the what remain undetermined, with the feeling that, if the Ibrutinib is working, why mess with things until it isn’t.
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