What is the average length of time ibrutinib is effective for CLL I have been on it for 5 years.
windemere: What is the average length of time... - CLL Support
windemere
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Windemere
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I dont know the exact answer to your question, but I do know that the answer can be very different if you are talking about ibrutinib as a first treatment or as a treatment for relapsed cll.
I think the average progression free survival (pfs) is around 5 years for pretreated people, perhaps less than 5 on average for 17p previously treated cll and over that for non 17p cll.
I recall reading somewhere that for ibrutinib as a first treatment, PFS was not reached yet as 7 years. I know may people are over 10 yrs out on ibrutinib and there is some talk by doctors that for some people with cll, ibrutinib might be the only drug they ever need.
Since many of us are diagnosed in our 60s or 70s, and then some go several years without treatment, its easy to see that some people will live normal to near normal lifespans on ibrutinib only.
I have been on Ibrutinib 7.6 years and with no issues. I’ve had FR, BR and now IB. I plan on continuing as long as it works. I feel blessed that it has given me my life back. Best of luck to you. Sally
My friend was part of the trial and has been on it 12 years. She just went off it and so far in remission & blood work is stable. Everyone is different. Seems the average is changing...used to be 5-7 years before relapsing. Some are closer to 10. And some may not need it any more but their doctors aren't taking them off to see what happens.
my husband has been on Ibrutinib nine years as his first and only treatment. Still doing well.
