For those who have made the switch, did you need to take a break from ibrutinib before starting the Venetoclax, or did you just make the transition without one?
Does it matter if you are switching because of side effects, or because of disease progression?
Thanks so much!
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Mcpill
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I did not take a break. In fact, I took my first Venetoclax pill on top of my last Ibrutinib pills.
If you check this website for "Moving on to Venetoclax after Ibrutinib" you will see my adventures with making the switch.
In a nutshell, I nearly died of a compromised airway due to VERY RAPID relapse symptoms after withdrawing from Ibrutinib. Within a week, I was in the ER for 3 days. My tonsils grew so large, I couldn't breathe. My CLL causes my tonsils to get very large. Venetoclax had a hard time catching up to the ibrutinib withdrawal.
Thanks so much for your response. Your posts have been a huge help for me. I am surprised that relapse symptoms happened so soon, and while you were taking Venetoclax. I really had not expected that. I hope you are feeling much better now. Think of you every day
I start on Venetoclax with Ibruvica in a month. I have been taking Ibruvica for 2 months so far. I will be on both for 13 months and then randomize depending on my MRD status.
I think there's a big distinction whether you are switching because you have to because Ibruvica stopped working or if is it just to get a deeper response.
If you can overlap both might be good as well. That's the idea of my clinical trial.
Thanks ...I will keep a record of plans and treatments and share after my appointment. I have been on Imbruvica for 23 months . From reading your posts, I think we are very similar. I too have 17p and trisomy 12 and was on watch and wait one year before beginning Imbruvica. I was so lucky as it had just recently been allowed for treatment of 17p. I have done well on it -blood wise), but have had constant little issues. Still would stay on forever if I could. The transition to Venetoclax is frightening, though the drug sounds like it is a miracle. I have been following the clinical trial of Venetoclax and Rituxan which also seems to be having excellent results. I will ask about that at my next visit. I read that it is close to FDA approval for treatment.
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