Hi Randy. My doctor put me on Calquence when we first discovered that I had CLL. It worked wonderfully for several months, but I started having some skin issues on my face and neck. It was like hives, very itchy and almost intolerable. Next he tried me on venetoclax and after a while that also presented the same problem with itching. Next, we tried Embruvica but I’ve had the same issues. The Calquence did a great job on my blood counts and got rid of the lymph nodes but the allergic skin rash and itch was a problem. So now he’s taking me off everything for a couple of months and what comes after that I do not know. Maybe I won’t have to take anything for a long time Since my blood work was good. I’m hoping!

I have stage 3 CLL and extremely low antibodies. I am taking Calquence plus I get IV Immunoglobulin every 6-8 weeks.

Was diagnosed with CLL in December 2021. In April 2024 started on Calquence, taking two a day. It took a year to get my lymphocytes back in range. Was not as tired but still felt tired. My red blood cells dropped a bit out of range when I started the calquence. In January I asked to reduce to one pill a day. Since then my red blood cells have improved to just in range. Before I was diagnosed I was having pain in my joints but I kind of feel it has sped up the deterioration but I have no proof of that. I am a pickleball player so that may have something to do with it.

Have you tried dose reduction? I reduced to one pill a day of calquence with no loss of effectiveness. Might solve your skin irritation problem.

Hello Randy. I took Calquence for 18 months before stopping. After taking the medication for 6 months my WBC and platelets had gone to normal. Stayed normal for 12 months. My hematologist suggested stopping because my body could become intolerant to it. So we did. He did labs that showed 6.7% residual cancer cells still in the bone marrow. A year later, my WBC and platelets have stayed normal. It will return, we don't know when. I still see him every 3 months and IVIG infusions every 42 days to keep my immunoglobulin within somewhat normal range. I recently read FDA had approved Calquence and another oral medication to be used together. Take care.