IB vs venetoclax

[Hawaii2018]

My mother has been living drug free with CLL for past 12+ years...until now. Her spleen has gotten so large that it's making her sick and losing a large amount of weight. Docs said if she were to fall it would rupture the spleen and they wouldn't be able to do anything about it. They started her on Ibrutinib 420mg daily today. They are hoping to shrink the spleen and lower the blood count with this drug. But after reading so many stories within this community, people seem to fair better with venetoclax vs. IB?? My mom is almost 77 years old, 5'5" and 130 lbs. She is a fighter like me, but I'm concerned about this IB drug. Can anyone please help me or guide or offer suggestions?? Scared and confused!!

[cajunjeff]

Ibrutinib and venetoclax are both good choices for someone starting out treatment for Cll. There is more data on ibrutinib and less risk of a dangerous side effect called tumor lysis syndrome.

Ibrutinib will very likely rapidly reduce your mother’s spleen size. The side effects of ibrutinib are tolerable for most people. At her age it might be the only drug she ever needs.

If she does have intolerable side effects, she can switch to venetoclax. I think most Cll doctors would start someone your mothers age on ibrutinib over venetoclax, that might change as more data on venetoclax is accumulated.

You might ask her doctor about acalabrutinib instead of ibrutinib. They work the same but there is data to suggest acalabrutinib has less problems with side effects. I am in my third year on ibrutinib and am doing quite well on it.

I am not a doctor, but I think ibrutinib, acalabrutinib or venetoclax would all be reasonable choices for your mother. When you think about it, while having Cll sucks, we are fortunate to have the ability to control our cancer with oral meds that can work very well.

[lankisterguy Volunteer]

IMO I agree with cajunjeff - many of the recent video and panel discussions have our CLL experts leaning towards Ibrutinb first, unless there are strong reasons to want limited duration treatments - like higher risk of Ricthter's etc.

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Also, there is some early evidence that Ibrutinib can help improve one portion of the immune system by resolving "exhausted T-cells", and that may make other treatments more effective while reducing infection risks. The theory of using Ibrutinib first and adding Venetoclax later is being tested in clinical trials, but I don't think there are any published results yet.

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Len

[Shepherd777]

Depending on your blood work numbers, size and number of lymph nodes and their location, they may have chosen Imbruvica, because it avoids a hospital stay during the covid-19 events. Second reason, if your numbers and lymph size are in the upper range, Imbruvica is a safer approach to lower the cancer cells prior to the Venetoclax that destroys cancer cells so fast it can produce other challenges.

[Hawaii2018 in reply to Shepherd777]

Thank you!! I'm so thankful to hear some positive things about IB. The Chemo Teach has us so frightened as to what to expect from using this drug.

[rcusher]

I have been on Ibrutinib for 3 years now with a few very minor problems, I am 74 years old

[Hawaii2018]

Thank you for sharing! This is so good to know. Did you experience any major side effects ie: hair loss, nauseous, rashes? Are you taking it 1 x day? Did they start you on a higher dose than lower it? Has it changed any of the CLL symptoms to the "better"?

[rcusher in reply to Hawaii2018]

I am taking 3 pills (420), once a day and it's not been reduced. All side effects have been minor and some have just gone away on their own. I get brittle nails for which I take Biotin which helps a lot, I also get muscle spasms but take magnesium pills which also reduces them other than that nothing else. I am trisomy 12 so middle of the road markers and had 6 months of FCR 3 years previous to being put on Ibrutinib and so far blood work is for the most part great and I go every 3 months to have it checked and go to my Onco/Haem every 6 months so I am very happy so far with everything. I hope your Mom has the same results but as you know we all have CLL but everyone is somewhat different in how they react.

[Hawaii2018 in reply to rcusher]

You are an inspiration to others! Thank you for sharing this with me.

[Shepherd777]

Hair lost is not one of the side effects of Imbruvica or Venetoclax.

[Hawaii2018]

Thank you. It was one of many symptoms they had informed my mom that may happen

[Canuck901]

Did she look into trials ? Gazyva and Venetoclax is becoming front line therapy and has excellent results.

V plus 0 or AVO, the combinations seem to give the best results

[Hawaii2018 in reply to Canuck901]

Hello Canuck901, she has only been on Ibrutinib for a week. She goes back on day 28 for blood work then day 30 for doctor follow up. When at the doctors appointment, he will advise her of the results from taking Ibrutinib and if it is getting better or ? We will be sure to ask the doctor about the trails and the drugs you spoke of. Thank you so much!