ibrutinib and pembrolizumab: hi All, first post... - CLL Support

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ibrutinib and pembrolizumab

Otis_245 profile image
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hi All, first post and looking for some advice please. I have been taking Ibrutinib for almost 5 weeks

Pembrolizumab for 2 via IV.

My doctor said if I end up in hospital it’s most not working.

Do anyone have a suggested alternative?

I have the ritchers syndrome mutation

Thanks

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AussieNeil profile image
AussieNeilPartnerAdministrator

Welcome to our community!

Are you able to share more about your specific diagnosis? Given you are taking ibrutinib, I presume you have a B cell lymphoma, but which one? There are quite a lot of lymphomas with CLL being the most common adult Non-Hodgkins Lymphoma. You've shared in your bio that you have the TP53 mutation and say in your post that you have "the Ritcher's Syndrome mutation", but what mutation specifically? That, along with other markers, determines your risk of RS. The checkpoint inhibitor pembrolizumab/Keytruda hasn't performed to expectations with CLL, but that doesn't mean it won't work for you.

How often are you having blood tests? The reason I ask, is that I would hope that knowing more about why your specialist thinks you might end up in hospital, would mean that you would know what to track to hopefully avoid that upsetting end to your current treatment.

Depending on what lymphoma you have, I'm not sure to what extent we can support you, but I hope that at least we can help you work out what additional information you can ask of your specialist, so that you can be more in control of your lymphoma management. With a 2 year old son, you have a very good reason to beat your lymphoma and thankfully, new treatment options are flowing faster than ever before.

Neil

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