Hi JoanMarie,

I have CLL and I am currently taking part in a Phase 3 Clinical Trial of a new, 3rd generation BTK Inhibitor. I was randomly selected to take the trial drug, Nemtabrutinib. I have been taking this new medication for 6 months. My last set of CT Scans showed that all my enlarged lymph nodes had returned to normal size. I am optimistic that my blood work will soon start to show improvement as well.

Not long after I was diagnosed I asked about likely treatment if I should need it. At that time it would have been Ibrutinib (1st generation). The standard treatment at my oncology clinic is Acalabrutinib or Calquence (2nd generation). That progression has been within 6 years or less. There’s also a new combination therapy for CLL patients who have never taken treatment before.

Things are changing quickly.

But hopefully you will stay in Watch and Wait and not have to deal with treatment and possible side effects.

I have been taking Brukinsa for the past few years. Last October my dose was reduced to 50% or 160 mg which is one pill versus two pills a day. My blood tests have been 100% normal. I have read that there are others who are taking reduced dose with good results. The other news is that people are taking two different medications but also at reduced doses. There are many medications which can control those bad cells. I hope you can see the videos on YouTube which explains how the different medications BTK inhibitors or BCL functions to kill those bad cells.

I have been taking Brukinsa for 2 1/2 years. last October I began taking only 50% dose or 160 mg or one pill a day. I have noticed other people reporting they are only taking 50% dose. There are other people reporting they are tking two medications but at a lower dose with very good results. My blood test indicate all things are 100% normal. I finally realized in December I was normal and CLL was not a problem?