CLL Support Association

stopped imbruvica

I was on imbruvica (3 pills 420) for about 3 months and CBC test came back better, however I got so sick my doctor stopped me that was about 10 weeks ago and my CBC tests looked almost normal. he wants me to try one pill a day but there is no way I am taking imbruvica again. I had chemo FCR in 2009 but came out of remission this year 2017 if not earlier This year I had colitis, bronchitis 2 times and pneumonia once. I am exhausted and wondering what the future might hold if I stop all treatments? I exercise 1 -2 hours per day eat little mostly at night after a beer or two.

11 Replies
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It sounds like you've been fighting the good fight and making progress. Have you considered getting a second opinion before you totally abandon imbruvica?

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I think a second opinion is a good idea. Some people appear to do well on a reduced dose and the side effects can be minimised. It would be a pity to give up what is an effective treatment for you if it can be modified.

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Hi,

My mum has just come off ibrutinib because it was too strong for her, she is 85. Is a much reduced dose possible. I think she was on a half dose which was still way to much for her.

Andrew

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See my response below regarding my mother's situation. Hope it helps!

Nan

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Dear Nan,

That is very encouraging thank you. My mum goes into a nursing home tomorrow in the hope she rallies a bit and your experience shows there might be an option to continue with treatment in the future. Weight loss and extreme fatigue is what we hope will turn around soon with a bit of a break from the drugs.

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Maybe you could wait until CLL shows signs of progressing again and then try another new drug such as Venetoclax?

kim

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Maybe your Dr could try another treatment? Or an Imbruvica and another pill as a treatment? I have read that some people can't take Imbruvica, allergy, other reasons and if so there are other things they can do. Sorry it didnt work out for you, but I'm sure there's something else. Don't give up! Let us know how you're doing.

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My mother is 90 and was also not able to tolerate the full dose of Ibrutinib. She went down to two pills a day, which was still too much, and then one pill a day which still was causing multiple side effects. She currently takes 1 pill a day for two days and gets the third day off and then repeats the process. She has no side effects and her labs are completely normal. I totally recommend speaking to your physician about a reduced dose and come up with a plan that works for you. Best of luck going forward.

Nan

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Hopefully you can hold out long enough to wait for ACP-196 (Acalabrutinib). The next step, imho, would be to add an antibody to keep your numbers down. Everybody wants to jump to Venetoclax, but that's a very big gun that we should only use when absolutely necessary. Why? Because if you fail Ven, you're out of options.

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Some patients are started on Venetoclax and do very well. Only your doctor can decide what is best for your specific case.

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Have you had your IgG level checked? If it is low IVIG infusions could help with the infections.

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