How do majority of CLL patients respond to Rituximab and venetoclax and what are common side effects?

[smirnof]

Calquence not working to clear cll from bone marrow. Can person continue to do rather heavy work while on V and R?

[Fowey2009]

My husband has just finished his two year treatment of V and R. He worked all the way through it and felt better than he had for years. Admittedly his was not ‘heavy’ work but he was exercising and carrying out all normal activity. Just had to be careful of infection as his neutrophil count was very low for the entire treatment.Good luck

Beryl

[Fran57]

Hello. My husband is half way through his 6 months of Rituximab and his daily Venetoclax (for two years)is well established now.He feels perfectly well, although he usually does anyway.

He had an eye infection after the first Rituximab infusion, but that was easily treated and nothing since 🤞🏻

Everyone is different, as we know, but he has been able to continue cycling and felt fine to walk 5 miles home from the hospital straight after his last infusion.

We have been shielding constantly throughout the pandemic (other than medical appointments), so we hope that when his neutrophils are low he is keeping away, as much as possible, from infections. We are fortunate that we are retired, but he says he would have easily felt well enough to be at work.

Here are his before and after three infusions blood results, in case that helps:

Hb 13.3 (12.4)

WBC 87 (3.4)

Neutrophils 3.7 (2.0)

Lymphocytes 81 (0.8)

Good luck with your treatment.

Stay safe,

Fran 😷

[SofiaDeo]

I am not sure there is any way to know ahead of time how one's body will respond. My very first (experimental) treatment was an anti CD20 monoclonal antibody. It stopped, but didn't regress, my CLL growth and was considered a failure. However, it did relieve the awful fatigue I was having to a large extent. "Successful" treatment(s) since then have remissed my CLL but the fatigue has come back, and even when in remission I just don't have the energy I did before. The only treatment that made me feel close to 100% was that drug that never made it to market!

If it were me, I would try to do subcutaneous rituximab if choosing an antiCD20 medication with venetoclax. You will spend less time in clinic, and there will be no risk of "infusion reactions" if you aren't using the infusion route. Plus I personally am trying to avoid people/places during this Omicron surge. A quick SC injection over a longer infusion. But I rejected anti CD20 with venetoclax due to the Covid situation, not wanting to impact my ability to make antibodies during the pandemic.

Potential SE's of rituximab:

drugs.com/sfx/rituximab-sid...

Potential SE's of venetoclax:

drugs.com/sfx/venetoclax-si...

I'll mention I have had very few SE's on venetoclax. Mostly mild headaches initially, maybe once a week or so now. They are mild, and may also be due to the dust in the house (I am allergic); I no longer have household help & my partner is sick, so it's piling up more than usual. Forced air heating contributes to this.

I get an upset stomach/nausea if I don't eat fatty foods with the V.

My treatment with ibrutinib worked wonderfully, but I had GI and skin side effects so awful, I had to stop it. But awful SE's on ibrutinib didn't lead to awful SE's on venetoclax.

There's no way to know ahead of time what SE's you may get, and to what extent they affect you!

[smirnof in reply to SofiaDeo]

Thanks so much for all the comments to my question. This is the first time I have been contributing to the forum. My husband has been on Calquence for four months and this is his first treatment. His WBC and lymphocytes are steadily dropping but his RBC and hemoglobin remain very low and he requires blood transfusions every two weeks . His Doc is the top hematologist/oncologist at the hospital. After a BMB he stated that my husband's marrow is still full of cancerous lymphocytes and therefore would like him to start V and R. However my husband does not want to lose his hair as we have read that Rituxiban does cause this. Has anyone had good results with Calquence and Venetoclax? He has had no issues with Calquence. Thanks