How are you managing Brukinsa side effects?

@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.

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?

@loribmt I have been diagnosed with Waldenstroms

Hi @glueski
I've been diagnosed with Waldenström's too.
I've been on Brukinsa for just over a year and doing well (labs trending in right direction 😊). The most challenging side effect for me is nightly leg cramps which were super painful 😫 My UCSF hema/onco put me on Magnesium and it worked! I'm on 800 mg of Magnesium Glycinate once daily before bedtime.
Other side effects are manageable so I'm grateful for Brukinsa 🙏

@loribmt I have been diagnosed with Waldenstroms

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?

Hi @glueski There are several members here who also have been diagnosed with Waldenstroms Macroglobulemia. A mouth full for sure so it’s easier to refer to this as WM. From what I’m gathering it looks like your doctor has prescribed Brukinsa for you. Starting any new medication can leave you with a lot of questions about side effects and how the drug will it impact your life…along with the new diagnosis! Being able to talk with others who are walking along that same path can be comforting. So let’s get you started meeting other WM members.

I did a quick search for you for links to member discussions about WM. Here are the results: https://connect.mayoclinic.org/search/

You’ve already met @ranchgal4sure. She’s shared her experience having WM and taking Brukinsa with some positive results of nudging her labs in the right direction. This has been a key medication for people with WM.

You mentioned trying to plan for travel and such. As with any mediation there may be some side effects. It can take a little time to adjust. But generally, over time you’ll be able to predict how your body is responding so you’ll feel comfortable in planning for daily activities, trips, vacations and the like. Just so you’re aware this medication may impact your immune system. Leaving you a bit more vulnerable to infections or illnesses. So just keep that in mind when traveling or even attending any event with crowds or intimate settings. It can be helpful to wear a mask, especially in flu/covid/cold season, or if you’re an avid gardner. It’s important to avoid airborne fungal infections. And of course, it’s helpful to keep up to date on vaccinations.

Have you started taking the Brukinsa yet?

Hi @glueski There are several members here who also have been diagnosed with Waldenstroms Macroglobulemia. A mouth full for sure so it’s easier to refer to this as WM. From what I’m gathering it looks like your doctor has prescribed Brukinsa for you. Starting any new medication can leave you with a lot of questions about side effects and how the drug will it impact your life…along with the new diagnosis! Being able to talk with others who are walking along that same path can be comforting. So let’s get you started meeting other WM members.

I did a quick search for you for links to member discussions about WM. Here are the results: https://connect.mayoclinic.org/search/

You’ve already met @ranchgal4sure. She’s shared her experience having WM and taking Brukinsa with some positive results of nudging her labs in the right direction. This has been a key medication for people with WM.

You mentioned trying to plan for travel and such. As with any mediation there may be some side effects. It can take a little time to adjust. But generally, over time you’ll be able to predict how your body is responding so you’ll feel comfortable in planning for daily activities, trips, vacations and the like. Just so you’re aware this medication may impact your immune system. Leaving you a bit more vulnerable to infections or illnesses. So just keep that in mind when traveling or even attending any event with crowds or intimate settings. It can be helpful to wear a mask, especially in flu/covid/cold season, or if you’re an avid gardner. It’s important to avoid airborne fungal infections. And of course, it’s helpful to keep up to date on vaccinations.

Have you started taking the Brukinsa yet?

I’ve been on ZANUBRUTINIB (now Brukinsa) for almost nine years. Minimal side effects.

@loribmt Thank You.
I started Brukinsa about 2 and 1/2 weeks ago.