Ibrutinib is not working any more

[Marymary19]

Hello everybody, my mom has been taking 3 capsules Ibrutinib a day since June 2018. After a few months the neutrophils dropped and according to the doctor this depended on Ibrutinib. That's why from November 2019 she switched to two capsules a day. And so we were living ... but today's blood count has showed a strong increase in white blood cells. I have the sad feeling that Ibrutinib is no longer working anymore. I don't know what the hematologist will propose, but I think we need to change treatment soon. From your experiences are there alternative therapies to Ibrutinib for those who are not young? I was reading about Venetoclax but my worry is that my mother is too old for such medication (she is 80s). Thank you

[Hidden]

Try to get a test done that confirms actual resistance. i forget the name for it.

sometimes just going by wbc or alc is not correct.

it happened to me. i had venclexta added and then a specialist thought i wasn't actually resisting ibrutinib.

However since i had already been on the venclexta for 2 months she decided no point to do it then

[Marymary19 in reply to Hidden]

I will try to get the test that confirms the resistance. Thank you for your suggestion

[81ue]

My doctor says there are many new drugs in the pipeline but what is an appropriate drug for your mother will have to come from her specialist.

What is the WBC and neutrophil levels? It seems that the goal of raising neutrophils by lowering the ibrutinib dose may have worked over the past 6 months - what did the doctor say? Sometimes an illness can raise the wbc levels too. Is there no option to try to raise the ibrutinib up again to 3 capsules and see the response? How often are blood tests?

[Marymary19 in reply to 81ue]

Hi 81ue, today WBC are 20,39 (last 19 months were around 9,00) and neutrophil are 1,97. yes, the past 6 months we reached the goal of not dropping too much the neutrophils. I just received a call from the doctor. He told me we should try to switch to full dose and if the neutrophils will drop again below 1,00 just go for G- CSF injection. She is not having any infections at the moment. Blood test are every 10 days -20 days (it depends on the neutrophils). Thanks

[81ue in reply to Marymary19]

I hope she is successful on the full dose. Watch for side effects with imbruvica. I just reduced dose of venetoclax from 300mg to 2oo mg (instead of the full dose 400mg) due to my WBC and neutrophils dropping too low. Even if your mother gets on a new medicine, the neutrophils might still tend to be low, so again, i wish her success on the imbruvica full dose

[Marymary19 in reply to 81ue]

My mother neutrophils have always tended to be low even when she was in wait and wacht. I hope that the full dose will work and we will be able to manage the side effects.

Wish that you reach the goal of raising neutrophils by lowering the dose of venetoclax.

All the best

mary

[Canuck901]

If she is tolerating full dose of ibruntnib, she should be able to tolerate Venetoclax . It does have some side effects but as I know it’s well tolerable ,

[Marymary19]

Hi Cunuck901, she is taking 2 capsules in a day at the moment. Tomorrow we will switch to full dose to try to control the CLL again. I hope it will work. Otherwise we have to go for a new therapy. Best wishes

[Ellieoak]

I am 66 and on Venteclax for 1&1/2 yrs. I don’t have any trouble with it and I think it might be fine for your mother. They watch you pretty closely when you first start on it so I think they would be able to know if it was going to work for her or not. I’d say try it. Good luck stay safe Anna

[Marymary19]

Hi Ellieoak,

happy to know that Venteclax is working well for you. I hope that when Ibrutinib is not working any more, my mother's doctor will find an option for her.

Best wishes and thank you for your words