How are you managing Brukinsa side effects?

Posted by sveta25 @sveta25, Feb 6 12:35pm

My husband is taking Brukinsa for 3 weeks now and so far so good, no bad side affects, WBC is lower but so are platelets so minor bruising and also constipation.
Any comments on using it longer than that ?
TYIA

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Profile picture for siagolfer @siagolfer

The platelets will go down
WBC will go up
After a few months the numbers will get better
My platelets went down to 80
After six months up to 125
WBC went to 145
After 7 months down to 20

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@siagolfer thank you and good luck!!!

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I’m taking two drugs with Burkinsa; acyclovir & sulfamethoxazole/trimethoprim. The first one helps balance the reduction in immunity caused by Brukinsa on viral prevention & the second one is an antibiotic that helps ward off pneumonia, immunity also weakened by Brukinsa.

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My husband started treatment for CLL with Brukinsa, he was also prescribed Allopurinol once a day to prevent or lower uric acid level due to Brukinsa side effect.
Does anybody else take it for the same purpose?

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My husband started Brukinsa more than a month ago, for a month there were no side effects but now he has a couple, diarrhea and swollen feet.
I wonder if somebody on this treatment have the same symptoms and how do you deal with it?

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Profile picture for sveta25 @sveta25

My husband started Brukinsa more than a month ago, for a month there were no side effects but now he has a couple, diarrhea and swollen feet.
I wonder if somebody on this treatment have the same symptoms and how do you deal with it?

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I am taking Brukinsa .Im in my second or third week of it and im getting marks that look like bruises on my arms.something im taking is making my skin thinner and more prone to bruises.i just woke up one morning with all of these marks on my arms .the usual with these strong drugs, diarhea like symptoms but when I take imodium they disappear. i also take Ozempic and metformin which have made me immune to the diarhea ive gotten used to it and it has subsided.I actually had to go into the hospital after I got a disease named CDiff which severely dehydrated me from all of the diarhea . so ive been through the gauntlet. things have slowed down though and no more problems with that .

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Profile picture for sveta25 @sveta25

My husband started Brukinsa more than a month ago, for a month there were no side effects but now he has a couple, diarrhea and swollen feet.
I wonder if somebody on this treatment have the same symptoms and how do you deal with it?

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Thank you, best wishes to you.

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Profile picture for sveta25 @sveta25

My husband started Brukinsa more than a month ago, for a month there were no side effects but now he has a couple, diarrhea and swollen feet.
I wonder if somebody on this treatment have the same symptoms and how do you deal with it?

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Everyone is different. Discuss side effects with your CLL expert. I was on an early clinical trial of ZANUBRUTINIB and have remained on it for almost nine years. (Still a clinical trial to determine long term efficacy and side effects.) My side effects are minimal—mainly easy bruising. Good luck!

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Profile picture for minnesotajim @minnesotajim

Everyone is different. Discuss side effects with your CLL expert. I was on an early clinical trial of ZANUBRUTINIB and have remained on it for almost nine years. (Still a clinical trial to determine long term efficacy and side effects.) My side effects are minimal—mainly easy bruising. Good luck!

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@minnesotajim Do you know what happened to the rest of the clinical trial participants ?

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Profile picture for glueski @glueski

@minnesotajim Do you know what happened to the rest of the clinical trial participants ?

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Hi @glueski While you’re waiting for a reply from @minnesotajim, I thought I’d drop in to welcome you to Mayo Connect. Have you or a loved one been diagnosied with CLL?

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Profile picture for glueski @glueski

@minnesotajim Do you know what happened to the rest of the clinical trial participants ?

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@glueski The initial trial was very small at Mayo--Mayo only was allotted six slots and included people with other blood cancers. I have no idea what happened to the others. It was a worldwide trial. The drug received FDA approval first for Mantle Cell Lymphoma before being approved for other blood cancers including CLL.

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