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.

[Floxxy]

I was diagnosed in 2018. My first line treatment started a year later, FCR for 6 months. I have been on V and R for nearly 2 years after lymph nodes in my neck enlarged. I have been relatively fine with V and R. The only problem has been with my low neutrophils so I have weekly Filgrastim injections. Also I do get tired but this is manageable. I complete my 2 years at the end of this month. Good luck to you x

[DavidDay22]

I had 6 infusions of Rituximab, things went smoothly after the first infusion, when they had to get my premedication figured out.

[JT67]

Hi attarintiki, I started on V & R last August. Apart from tiredness, the rituximab did not cause me any problems. I have now finished it and am just on venetoclax for the next 18 months. It has taken me about 6 months to get used to the regime and the fatigue is wearing off. Everyone is different but the potential difficulties with starting Rituximab and Venetoclax are well known so that they are administered slowly and I would not have too many concerns about starting. I wish you a smooth journey on these two effective medications.John

[attarintiki in reply to JT67]

Many thanks, JT67, for your positive feedback over RV. Your post is encouraging and supportive. I am now reassured. 🙏

[roszika]

I was on Veneteclax for 2 years from April 2019 to March 2021 , after 5 weeks from initial dose of 20mg to 5 weeks later ramped up to 400mg daily. That bought me to May 2019 when I commenced on rituxa -once every 6 months which bought me to November and the last of 6 monthly rituxa infusions and I have been in remission every since . I did not suffer many side effects except for nausea every morning from the V and sometimes I was fatigued after my rituxa infusion but no major side effects. I wish you the same luck.

[attarintiki in reply to roszika]

Many thanks Roszika for your kind feedback on RV. It’s encouraging and reassuring. I will start the RV in three weeks time. Much grateful to you.

[Sanders9]

Hi attarintiki

My husband is 8 months into this treatment. I was very anxious about the Venetoclax rampup. However. It was great to see how closely he was monitored. He had one weekend where he had a high temperature and felt unwell but he didnt need to he hospitalised. Turns out the venetoclax was working so well it dumped his defective cells very quickly

Rituximab infusions went fine. He has moved to consultant appointments every 3 months until he finishes treatment in June 2026.

This treatment has been a lot easier for him than FCR. I hope my post makes you feel better about your upcoming treatment. Wishing you well

[attarintiki in reply to Sanders9]

Hello Sanders9,

Heartfelt Thanks for Your Encouraging Message. I sincerely appreciate you taking the time to share your experience and offer reassurance. It means a great deal to me. Knowing that your husband has been closely monitored and is responding well to Venetoclax, despite initial concerns, is truly encouraging. I’m relieved to hear that he managed the treatment without hospitalization and that Rituximab infusions went smoothly.

Your words have provided me with much-needed comfort and hope as we navigate this journey. Thank you for your kindness and for sharing such a positive perspective. Wishing your husband continued strength and good health as he progresses towards completing his treatment in June 2026. Warmest regards,