On Ibrutinib for 1.5 years and doing great! - CLL Support

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On Ibrutinib for 1.5 years and doing great!

Rmiller32x profile image
5 Replies

I just discovered this site. So far I’m an Ibrutinib success story. I was diagnosed in April 2014 at age 62 with atypical CLL. WBC 30K. Over the next couple of years my WBC slowly crept up to 100K. I then had 2 infusions with Rituxin which worked for a while. But by May 2016 my WBC had gone up to 130K.At that time Ibrutinib had been approved for second treatment only, the Rituxin having counted as first treatment for me. So in May 2016 I started on Ibrutinib. Almost immediately my numbers started coming down - and fast. As of today my WBC is 6K with ALC of 1.5. Best of all I’ve had no side effects whatsoever from the med and I feel great (I never had any symptoms from CLL). So for those of you who have just started on Ibrutinib or are pointed in that direction, know that this stuff can really work miracles.

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Rmiller32x
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5 Replies

Welcome. I’ve been on Ibrutinib for 13 months and I feel great. No side effects either. I don’t know how long it will work, but I’m enjoying life now. Sally

Elizabetha profile image
Elizabetha

Thanks for sharing, given me some hope! Best wishes.

fell profile image
fell

Great post and welcome! I just started ibrutinib on Tuesday. I can't say that I haven't had any side effects, unfortunately, but my nodes are shrinking like magic :)

Best,

Fell

JR1964 profile image
JR1964

Thanks , it is always good to hear the positive and uplifting stories . And a Big Welcome!! 👍J.R.

Oleboyredw-uk profile image
Oleboyredw-uk

Hi Rmiller32x,

A warm welcome to our community. Whilst I appreciate you’d rather not have the need to be here it is good to meet you.

Thank you for sharing your experience, it adds to the value of the community and will be a help to those who are new and those facing treatment.

all the best, rob

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