please share experience on Rituximab combined with Venetoclax oral tablets and side effects

[attarintiki]

Hello everyone,

I was diagnosed with CLL in 2013 and was under W&W. After two cycles of BR (discontinued the rest of the BR cycles due to severe side effects), from 2019 to 2023, I experienced a good remission. However, my WBC count has steadily increased over the past 10 months. Currently, my leukocytes are 148.7, with lymphocytes at 135.35. I have no significant symptoms apart from fatigue, malaise, and body pain. There is no lymph node enlargement, my spleen is normal, and I have not experienced night sweats or weight loss.

Given the rising leukocyte and lymphocyte counts, my oncologist has recommended starting treatment with R+V (six cycles of Rituximab infusion over six months, combined with Venetoclax oral tablets for two years. Hoping that this treatment will lead to another good remission.

Has anyone undergone a similar R+V treatment? I would appreciate your sharing your experiences, particularly regarding any side effects.

Thank you!

[lankisterguy Volunteer]

Hi attarintiki

You may find some useful information in this list of past postings: healthunlocked.com/cllsuppo...

Len

[attarintiki in reply to lankisterguy]

Million thanks Len for referring me to the link. I went through the past postings which were more informative and helpful. 🙏

[Jackpot]

I am on my second line of treatment- Rituximab and Venetoclax. I completed the Rituximab therapy last June. The first treatment was through iv and though the day was long, it was uneventful. The next five treatments were subcutaneous injections into the belly fat, once a month, I am quite slight, so those injections were uncomfortable but I managed well. No real side effects. I learned to take it easy for a few days after each injection. (I went cross country skiing the day after my first subcutaneous injection and THAT was not a good idea. Quite painful in the abdomen).

I have been on the venetoclax part of the treatment since Dec. 2023. The side effects have been relatively minor for me. I find drinking copious amounts of water (8 cups a day) a challenge at times. I have also experienced constipation with this treatment. Easily resolved with otc treatment when needed.

I am able to live my life, stay very active, travel, etc. I am vigilant about masking when indoors with lots of people (concerts, etc) and I stay away from people who have coldlike symptoms.

This treatment has been working very well for me. Best of luck to you.

Cindy

[attarintiki in reply to Jackpot]

I sincerely appreciate your thoughtful response and for sharing your experience with the R+V treatment in such detail. Reading your message has greatly relieved my anxiety, and I now feel much more reassured.

[Tangolover]

I had some nausea when doing the Rituximab infusions but meds helped that and I would go home and sleep. The rest of the month, I was fine and had no symptoms. On Venetoclax, I often had diarrhea, but I would take it at night so that I would be close to the bathroom. Then mostly, during the days I would be fine to do whatever I wanted. I feel very fortunate that the treatment worked with minimal side effects. All the best to you!

[attarintiki in reply to Tangolover]

Thank you so much for sharing your experience with Rituximab and Venetoclax. It’s reassuring to hear that the side effects were manageable and that the treatment worked well for you. Your insights help me feel more prepared and optimistic as I navigate my own treatment journey.

[Cll12]

I have been on this same regime since September The 6 infusions didn’t have many side effects and as it went along it there were none. The first 3 months of Ventoclax I had severe spontaneous diarrhea. I switched to take my 4 pills at nite and that helped stop it or was it that my body got used to it. In either case those were not happy days. My doctor hinted that that this combination may only work for 2 years. Here’s hoping she is wrong

[virdieblue in reply to Cll12]

I was on Ibrutinib for 5 1/2 years till it syopped working. Went on to V&R. Not really any side effect but thinning hair. After 2 years I was umrd and went off treatment. The average time in remission this way is 2 or 3 years. Then back on to treatment. When I was first diagnosed in 2012 there was no remission like this. It is a blessing!

[attarintiki in reply to virdieblue]

Many thanks for sharing your experience with VR. Prepared a small sacrifice of hair loss for the greater benefit of remission.

[attarintiki in reply to Cll12]

Thank you very much for your feed back on your personal experience with VR. It was encouraging.