Brukinsa

[brooklyn7672]

My wife is starting Brukinsa today with 1 pill 80mg in the morning and 1 at night. Please post who has been taking this and how they are doing.

[Justasheet1]

Is she on a clinical trial?

[brooklyn7672 in reply to Justasheet1]

No. She was taking 140mg of Imbruvica but the side effects was too strong they paused her treatment for 4 months 1/2 months and now want her to take the Brukinsa which her Dr said is less evasive.

[Justasheet1 in reply to brooklyn7672]

I hope that it works for her. I didn’t know that it was available yet. I suspect it will work great.

[Smith123456 in reply to Justasheet1]

it;s not approved for cll but is approved for other blood cancers-mantle cell lymphoma

[Justasheet1 in reply to Smith123456]

Thanks for that. I wasn’t sure.

[cllady01 Former Volunteer]

There are several members who are or have been treated with Zanubrutinib (Burkina) so you should get some response from someone who has experience with that BTK inhibitor.

The reported news is that it is milder in relation to side effects. I hope that will be that will be your wife's experience.

[brooklyn7672 in reply to cllady01]

Thank You. I hope so.😀

[Dancelu in reply to cllady01]

do you know if or when the FDA in the US will approve Burkina for CLL treatment? Have there been any articles in any government or medical publication indicating any dates for their approval?

[cllady01 Former Volunteer in reply to Dancelu]

The following links show the NCCN has recommended Zanubrutin for CLL/SLL in specific profiles, perhaps. So, it will most likely be being used when Drs. and insurance companies agree on its use, and with continued successes the FDA will most likely follow with approval per the CLLSociety take on the Ajmc report.

Zanubrutinb has been FDA approved as "emergency" for Mantel Cell. These approvals take time to get through the system, but off-label uses are not uncommon before FDA approves esp. when NCCN has already recommended.

cllsociety.org/2021/01/nccn...

ajmc.com/view/nccn-recommen...

[Dancelu in reply to cllady01]

thank you for the articles and information. I am so grateful for all of you and the others for keeping this website as a go to place for the latest CLL information.

[Silvafoxe in reply to Dancelu]

My oncologist said it was recently approved.

[Phil4-13]

Wish for good results. Sandra🙏

[Davemich]

Hi, I started Bruniska 3 weeks ago at the same dose reduction and so far so good. I was previously on Acalibruitnib and the diarrhea and joint pain were very bad. Both of these side effects are drastically improved on the Bruniska, and fatigue is also less.

Hoping your wife does well on this new drug-all the best!

Dave

[brooklyn7672 in reply to Davemich]

Thank you for your response and all of the other responses from everyone else.. If anyone is out there who has a spleen condition, I would like to hear from you.

Thanks

[brooklyn7672 in reply to Davemich]

Dave, did you get the diarrhea and joint pain the first or second day? How long did it take until you started seeing positive results

[Davemich in reply to brooklyn7672]

I experienced diarrhea and joint pain on Acalibruitnib, even dose reduced. Both of these side effects improved almost immediately on Brukinsa and I am dose reduced on that as well. So as of now, I do not have diarrhea and I still have some joint pain but it is mild compared to what it was, and I’ve only been on Brukinsa for 3 weeks. Just hoping things stay this way but it’s hard to say with these drugs. My creatinine did tick up though, so that’s a negative side effect so far and I drink ALOT of water.

[curlscurls]

I started on Brukinsa a week ago. I haven't tried other BTKs. Had Rituxan before.

I'm pretty uncomfortable. For about 3 1/2 hours I'm unable to *think,* dazed like with a bad cold. Muscle aches are slight but making it harder to breath and effect walking for exercise during that time and somewhat the rest of the day too. Pressure on my eyes. No rash but a slight itch. Slightly warm at times. Increases sleep with morning dose, saying awake after night dose. Slight headache during. It effects my mood (more down/less joy) during, but not once it clears up.

I meet with a doctor mid-week. Beigene hasn't called to follow up. (Their nurse program was good at 1st, but seems like someone else has taken over managing it.)

I'm on 320mg in a day, 2 pills 12 hours apart.

I've read the fatigue, mild muscle aches, and early symptoms usually go away after 2-3 months. Be really interested to hear experiences, and if that's true for other BTKs. I.e. it'd be worth plowing through?

At 1st I had very little reaction and thought I'd be in the clear. This started about 2 days in. I've wondered if it's a "die-off" effect, as cells are being impacted (hopefully dying), if it's body processing of them. And that's why as the bulk is down, in 2-3 months it gets better.

Taking with a lot of food seems to help, a little food doesn't change it. I've heard something about caffeine helping with acalabrutinib and wonder if there's tricks that work with this.

[WarriorPrincess4]

I have been on Zanubrutinib for two years now and doing very well. Before I started with treatment my spleen was so enlarged that it reached to my bellybutton! I had some discomfort because of this, I could barely put on my shoes without feeling uncomfortable. Spleen is almost back to normal. In the beginning I experienced a few small side effects but they quickly disappeared. I feel wonderful. I take 360mg per day, 180mg in the morning and 180mg in the evening. Zanubrutinib is working wonders for me. Hope it will do the same for you. Ellen ⚘

[brooklyn7672 in reply to WarriorPrincess4]

I'm glad you are doing well. My wife's spleen is big (Maybe 27mm) and she can barely walk around before she has to lay or sit down. He spleen pain is about a 2-3 in the morning and by late afternoon is a 7-9. How soon did you see your spleen reduction after you started with the Brukinsa?

Ben, her husband

[WarriorPrincess4 in reply to brooklyn7672]

Hi Ben, if I remember correctly it shrunk very quickly! I take 160 mg in the morning and 160 mg in the evening. Within a few weeks the results could be felt. Within a month I was feeling a lot more comfortable. I'm sure your wife will notice a big improvement too. Good luck to her.

[MrMidnight]

I began 320mg of Zanubrutinib in February 2016 and although it reduced my nodes quickly (and my lymphocyte count slowly) I had debilitating fatigue for nearly a year. I had to use a wheelchair to get down long hospital corridors and could barely leave the house.I was the only one of the 50-odd patients on the clinical trial here in Auckland, NZ, to have fatigue... others, the haematologist told me cruelly, were doing Spin classes at the gym!

After a year the fatigue gradually reduced to a much more tolerable level (but never disappeared).

But it lasted me nearly five years before I needed to switch to Venetoclax — which is an excellent result for someone with 17p, I think.

[brooklyn7672 in reply to MrMidnight]

Wow. Sounds like you had a rough go of it. Thank you for the information.