To continue or stop Venclexta treatment for CLL?

Posted by bostongirl @bostongirl, Jun 15 2:23pm

I was diagnosed with CLL in October 2021 at the age of 59. My Dad was also diagnosed with CLL @ 60 years old. His wait and watch timeline lasted about 20 years before requiring treatment. So, when I was diagnosed, I thought my story would be similar. I figured I'd wait and watch and not have any treatment for many years. In December 2022, my blood work proved that my wait and watch period was over and I was started on Calquence (acalabrutinib). I continued with that treatment until the Spring of 2023 and my Oncologist determined it wasn't working as we had hoped. He discussed transitioning to Venclexta (venetoclax) and I started in May 2023. I followed his strong advice and was sure to drink plenty of water and to stay hydrated. I have experienced minimal side effects (occasional tummy discomfort) and have responded very well to the treatment. I did require two blood transfusions over the summer of 2023 due to low red blood counts, but since then, things have been good. At my last oncology appointment, we discussed since I have been on this treatment for a year and am doing well, I could either continue the treatment or try and stop taking it. I have been told that if I do stop treatment and my blood work starts to deteriorate, I could restart treatment.

Since the treatment is working and I am not really experiencing side effects, do I just stay on the treatment? Or do I try to stop treatment and see what happens? My Oncologist said he supports either decision.
Just wondering if anyone has had the experience of stopping Venclexta treatment for CLL, and if so, what how did things go for you?

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fortunateoldguy | @fortunateoldguy | Jun 15 2:56pm

Venclexta is a very effective therapy. I’ve been on it for many months along with infusions of Obinutuzumab and, yes, it works for me too. My only side-effects are daily nausea about 2 hours after taking Venclexta for which a take Compazine. It also severely suppressed my Lymphocytes and Neutrophils levels to point where I will need medication to boost those levels if they drop any further.

Realize there is no cure for CLL, and Venclexta is typically prescribed for about a year. The goal is deep remission and minimal residual disease. My thought would be to go off of it after a year and be monitored regularly for relapse. If it relapses, then go back on it or try whatever the latest first line therapy is. There seems to be new treatment discoveries on a regular basis.

Colleen Young, Connect Director | @colleenyoung | 6 days ago

Hi @bostongirl, I hope you saw the helpful post from @fortunateoldguy. I'm also tagging other members like @dmc1937 @81ue @marytheresacll @sue58, who have experience with Venclexta (venetoclax) for CLL.

Bostongirl, did you decide to stay on treatment or take a treatment break?

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