New CLL Regimen after 6 years on Imbruvica - CLL Support

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New CLL Regimen after 6 years on Imbruvica

Gisygirl profile image
3 Replies

I was diagnoses with CLL with 17P deletion in Oct. 2013, was on W&W 1 year and have been on Imbruvica until this month. My white cells have gone up the last few lab tests and radiology is showing lymph nodes slightly enlarged. SO the last two days I had IV infusion of Gazyva (obinutuzmab) , then will go to hospital tomorrow for monitoring , lab work severdalys. Then I see my hemotologist on the 20th, have 2 more infusions on the 22nd 29th of this month. Then I will start Veneteclax early in May, preceded by taking a pill called Allopurinol 4 days before the Venetoclax to protect by kidneys. All this matches all the webinars I have watched on Patient Power and LLS.org so I am praying that my body responds in the right way. Has anyone on here had this same experience?

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Gisygirl
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MrMidnight profile image
MrMidnight

Yes, I am 17p deleted and began treatment with Zanubrutinib (Brukinsa) in February 2016. That was successful until October 2020, when my lymphocyte count had risen to 32, and I started Venetoclax. The ramp-up went smoothly and I have now had 5 months on Venetoclax. I have a persistent problem with fatigue, which is common, but I did on Zanubrutinib as well. My bloods are normal and I have no other issues.

So far, so good!

Jm954 profile image
Jm954Administrator

What a disappointment to relapse after 6 years. :(

However, that sounds like a good plan and I wish you all the very best.

Jackie

MSUdawgMom profile image
MSUdawgMom

Hi Gisygirl..... I was diagnosed with CLL (TP53, 17p del, unmutated) in March 2013. Began Imbruvica in June 2014, with wonderful results until March 2020, when it began to fail. Continued Imbruvica for a little while, as it was working “some”. Switched to Gazyva in September with Venclexta ramp up started in October of 2020. No problems at all (except occasional nausea since being on 400 mg). CT scans & all labs normal except for neutropenia (take Zarxio injections when it drops below 1.0)Good luck! Im sure you’ll do great!

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