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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4 weeks for me. Platelets are up 10 a week, all others steady. I have bruising around blood draw sites . No swelling.
Flu symptoms and shortness of breath.

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Profile picture for sveta25 @sveta25

@glueski How are you doing on Brukinsa?
its been 2 1/2 month since my husband started it ( 320 a day)with allopurinol once a day.
His WBC is lower but so are hemoglobin, platelets and RBC ( lower then before treatment ), his legs are swollen and he has bruises. His hematologist told him to stop Brukinsa for a week and do another CBC. Test is today so will see what it will show.

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@sveta25 I saw platelets RBC go done and WBC go
Up for 4/5 weeks but nearly a year later have very good results

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Nine years on ZANUBRUTINIB. Minimal side effects. It keeps CLL under control.

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Husband on for 1 week, so far so good.

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Profile picture for ksalvia @ksalvia

Husband on for 1 week, so far so good.

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@ksalvia please keep posting how he is doing, my husband had to stop for now after 2 month on Brukinsa, very low RBC and HGB.

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Will do! I hope they can figure out something to improve your husband’s situation. Kathleen

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Profile picture for glueski @glueski

@ranchgal4sure Thank you for your info.
My biggest issue with W was fatigue.
Would you tell me how long it took to see your number improvement and at what point they reached "normal" ?
I am trying to figure out what to do about travel plans.

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Hi @glueski, I'm taking Brukinsa for Mantle Cell Lymphoma. I have fatigue too. Fortunately that's my only side effect worth noting.

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Husband Brukinsa update - after 2 months it seems to be doing its job and his main concern is getting over a months long respiratory/loss of hearing inflammation/infection (they don’t know which it is but have thrown everything at it from anti-b’s to prednisone). Lack of energy would be the main side effect of one or both the Brukinsa and/or respiratory thing, but the prednisone seems to be restoring his hearing, and energy level is improving.

Re labs: His RBC, HGB etc are gradually rising and almost normal. Neutrophils and platelets plunged (which might have resulted in reducing Brukinsa dose) but came back up again to normal or near so a week later. We are all different, that’s for sure!

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