Off Treatment Thoughts

[Davidcara]

Wondering if anyone has experienced this or has thoughts: 13 q Muted. Was on ibrutinib followed by zanubrutinib for consecutive 24 months. Labs normalized and stayed that way within 6 weeks of initiating treatment. So was on BTKi therapy for two years

Have been off zanubrutinib since July 2022. Was taken off due to a covid infection; my oncologist thought I should be off medication while covid positive. I was positive for several weeks. I turned negative in October 2022.

Even though I became covid negative, I have remained off treatment since July 2022. I feel ok, my labs have remained normal. The plan is to stay off treatment until my labs or physical well-being indicate a reason to restart treatment. The re-treatment will likely be zanubrutinib.

Wondering if anyone has any experience with something similar; being off BTKi treatment for prolonged period of time. Additionally, wondering if I do need re-treated would I need new FISH testing. Am I at greater risk of having deletion or mutation changes while off treatment.

Thanks for your reply

[HopeME]

There have been reports of HU members coming off of BTKi drugs and having immediate flair ups. Others have stopped and managed to go a year or more before the disease returned. Like everything CLL it is patient specific. Did your doctor recommend staying off or was it your decision?

Best,

Mark

[Davidcara in reply to HopeME]

Thanks for the reply Mark. My Physician originally wanted me to stay off Zanubrutinib until I was covid negative. We thought it would be a week or two. Because it took approximately 8 weeks to become completely rapid test negative, and my labs were normal and I felt ok, he said let’s keep you off treatment until things change.

[HopeME in reply to Davidcara]

Long may your drug holiday continue 😀.

[Britam]

I am 13q but unmutated. I was diagnosed in 2016 and started treatment in early 2019 because of low hemoglobin with AIHA. My WBC was over 200,000 and my lymph nodes were enlarged at the time. To try and treat the AIHA I was given several infusions of Rituximab in January and February which helped shrink the lymph nodes but did not help improve the hemoglobin which went down to 6.3! I was then prescribed Imbruvica in March 2019 but after several months developed AFib so my CLL specialist told me to stop taking it in December 2019 so was only on it for 9 months.

I have not had any treatment since 2019 although my WBC has slowly been going up while my hemoglobin has been going down and my lymph nodes are currently enlarged. I have enjoyed not being on treatment for three years but tomorrow when I see my CLL specialist I will be discussing possibly starting treatment with Zanubritib as my WBC is about 140,000, my nodes are large and my hemoglobin is in the low normal range.

As long as you feel well I would enjoy the “holiday” from treatment. To set your mind at rest, continue to have regular blood work done with your oncologist which is what I did with my local oncologist/hematologist. As you were on a BTK longer than I was and are mutated, you might achieve an even greater “remission” than I did.

[Davidcara in reply to Britam]

wow, off treatment since 2019, that’s pretty good! Yes, I am thinking and hoping I could be off treatment for a while. While off treating going to try to get caught up with shingles vaccine, and another bivalent booster it it is ever approved.

[terryI_uk]

Hi David, I was on the flair trial, ibrutinib/rituximab arm and stopped ibrutinib in 2018 after two and a half years. Have remained in clinical remission since. Latest bloods due this month, Terry

[Davidcara in reply to terryI_uk]

nice to hear

[cll2013-2025]

I was off Ibrutinib for 18 months before needing to restart treatment, which was Calquence.

[Zia2]

I’m 13q. My first treatment lasted approximately 1 1/2 years (we tried three Brutinibs). I discontinued tx Dec 2021 due to side effects/adverse events. My labs are trending towards treatment again as they did in w&w. CLL specialist didn’t think I’d get two years treatment free especially since my labs were not in the normal range for long after treatment. I have labs again this month. CLL specialist is not recommending brutinibs again for me and I’m not sure yet what she’s considering. Wishing you the best.