Ibrutinib + whatever helps not having side effects

My mother is about to start treatment with Ibrutinib, I couldn´t convince the hematologist to start directly with Acalmbrutinib because is not aprove by the FDA in frontline. Today we have a new study and find out that she has 17p deletion/p53 positive. I know there are some other things you can do to avoid nausea, diarrea, bleedings, muscular pain, and low platelet counts, like lower the dosis to 140mg per day, grapefruit juice and Cannabis Oil. Also Celebrex. Do you know what to do?

Thank you!

11 Replies

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  • Acalabrutinib is not approved for use in CLL anywhere

    I recommend you read the Ibrutinib patient guide, so you don't get your mother into difficulty.

    Grapefruit and grapefruit juice is absolutely prohibited... and dose reductions need to be discussed with your mother's doctors...

    Most side effects can be managed by the doctor.

    Patient Guide

    imbruvica.com/docs/librarie...

  • There are many Ibrutinib posts on this site. Some people have no problems, others have to stop taking it. I just started about 10 days ago. I try to get in almost a gallon of water a day. So far, (knock on wood) I have not had anything that noticeable. I would 100% recommend getting to see a CLL specialist prior to treatment, especially with 17p del/p53. You may also want to look at clinicaltrials.gov/ct2/home To see if any trials are available in your area.

  • Thank you, I´m checking the post you mentioned.

  • Most important, in terms of achieving a good, sustained response, is to take Ibrutinib without any dose reductions or stoppages as far as is possible in the first year. Obviously sometimes side effects mean it can't be helped but your haematologist should be the first person to call if you're Mom is having problems.

  • Thank you for your response. I hope the haematologist would be able to deal with the side effects

  • Gratefruit juice is a no no. I have been on ibrutinib for four months and have no side effects. She should take whatever doctor recommends.

  • That´s excellent news, are you taking the full dose of 420mg ?

  • Yes

  • Lots of water!

  • Yes drink lots of water. I drink a litre before taking the pills and a litre after so far all is good. Noticed lymph nodes in neck disappeared first week of taking it hope I continue doing well.

  • Thank you for the advise Mamere. I will pray for you and for all CLL patients. I hope that Ibrutinib and Venetoclax together will finally get us all to the cure or al least to remission for a long time, till next therapy or may be the cure.

    This site is a way for me to still hoping, from far away, here in Buenos Aires, this is my wish

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