Scott or Art
It appears to me there are ways to look at it. If you
are planning for a long remission you would need
to reach a MRD negative status so staying on
the drug longer could get you there. If you are
using the drug just to keep your lymph nodes from
growing and keeping your blood work in normal
range "possibly" it could work but wow you
would need a lot of blood test to monitor yourself
Have you done Clonoseq testing?
If side effects are so bad maybe a discussion
with your specialist to lower your dose might
be good. My dose was lowered in trial and
I still got MRD neg in one year. I don't know,
just thinking .... GB

Art, I have wondered the same thing as you, and I believe that is weighing heavily in my decision to stop using the BTK inhibitor family of drugs. I am very seriously considering switching to Venetoclax very soon because I know that it has a determined time to start and a time to cease taking the medication. I have a pre-determined aversion to taking medication indefinitely.

Hi Art
Acalabrutinib (Calquence) works like Ibrutinib It is a Btk inhibitor but is not supposed to have the side effects like Ibrutinib There have been clinical trials where people stayed on Ibrutinib for 4 or 5 years and then went off and they did achieve MRD negative status and are in remission Tis My opinion but I would not go off and on your drug unless it was necessary for a surgery or for taking Covid antiviral
What side effects are you getting from your drug?
We all have different markers and we are all different Did you have the enlarged nodes marker? Maybe that’s why your oncologist told you that you would need to stay on it At this time there is no cure or total healing for CLL only remissions If one gets MRD status they actually have a chance for a cure It takes 10 years of no active progression to get a cure They have found combining drugs like Ibrutinib and Venetoclax (BcL2) can possibly give you a long remission
There are other combinations also that can work plus there are other options
Art, It could be this is not the right drug for you
Discuss with your specialist I read a lot about drugs and trials
Happy to help you if I can
GB

Thanks GratefulBarb!

Yeah that happens sometimes especially when you read a lot. It probably helped others who were at the beginning of their road.