First experience with Brukinsa

[Vacationmountaintop]

I will be starting treatment with Brukinsa in a few days. Would like to know if anyone has experienced fatigue while on it and how they deal with it. I was told I may be on this indefinitely but it is possible I could go into remission in a year or two also. Is the fatigue temporary or will I feel it as long as I am on this med.? Someone made the comment sometimes worrying about how you react to some of these medications is worse than the drug itself. I can not stop thinking about how Brukinsa is going to affect me. Trying not to be a big baby about it but it does worry me how I am going to feel .

[Newdawn Administrator]

I hope your experience of Zanubrutinib (Brukinsa) is as positive as mine. Apart from a bit of fairly inconsequential petechia, I’ve found it to be a non intrusive drug that really does the business! Massively fewer side effects than Ibrutinib.

Let’s hope it keeps working for all of us for a very long time!

Newdawn

[Vacationmountaintop in reply to Newdawn]

Did you experience any fatigue and if so for how long?

[Newdawn Administrator in reply to Vacationmountaintop]

In truth it’s hard to say because I’ve had other issues including a major operation whilst taking it but I’m not aware of Zanubrutinib making me excessively tired and I certainly was before I started it!

Good luck,

Newdawn

[Vacationmountaintop in reply to Newdawn]

I spent a good hour at oncologist office yesterday. It was explained to me all the side effects that could happen and how to handle them. I realize it doesn't mean they will all happen to me but it was just overwhelming and worrisome to hear. Thanks for your reply.

[Newdawn Administrator in reply to Vacationmountaintop]

They could do the adverse effects speel for every single drug and even food we injest. I was so relieved to start them because I was very unwell and apart from being a monster size to swallow, I’ve found them to be absolutely fine.

Don’t be spooked. They’re actually life savers!

Newdawn

[Vacationmountaintop in reply to Newdawn]

Newdawn, Thank you. It helps to hear postive comments like yours

[Walkingtall62 in reply to Newdawn]

Noooooooo. I am just about to start, having stopped the tablet form of Acalabrutinib. Don’t like big tablets🤷‍♀️🤨. Or moving forwards maybe have to say ‘just swallow and see’😉

[Newdawn Administrator in reply to Walkingtall62]

I’m not sure if they do alternatives but I take 4 pretty large plastic coated capsules (that can’t be split). Just make sure you have plenty of liquid and lubricate your throat before taking them.

Newdawn

[Vacationmountaintop in reply to Walkingtall62]

Hi there, are you going to be starting Brukinsa too? I was given my first bottle of it and they are not large pills. They are normal size capsules.

[Vacationmountaintop in reply to Newdawn]

Newdawn I forgot to say I was addressing this question to you about the fatigue. Did you experience any and if so for low long?

[Sunfishjoy]

on it for 1.5 years. No fatigue at all. But for me the constipation is now chronic. I deal with it via diet and under control.

[Vacationmountaintop in reply to Sunfishjoy]

Sunfishjoy, You give me hope. I already have it in my head that my first few days on this that I am going to be a total wreck. Meaning I will be sick to my stomach and be so tired I will not be able to function. I am trying not to think like that even though I'm aware I could get nauseated, etc. That is why I love this forum. The support and experiences of others helps sooo much.

[Walkingtall62 in reply to Vacationmountaintop]

Oh heck. None of those came to my mind. Swallow and smile, and good luck 🙂

[Sunfishjoy]

I wonder why you are anticipating these effects. Have you had them before from other treatments? I’m no expert but haven’t read here or elsewhere that folks are having strong side effects. Rather, most report mild bruising. Be sure to avoid grapefruit and Seville oranges. Drink a lot of water. And enjoy this beautiful life. 🎈

[Vacationmountaintop in reply to Sunfishjoy]

I have never had treatment for my CLL. This is my first experience. I guess I am expecting the worse because I seem to be sensitive to different meds and have had diarrhea from them. I have heard that you should drink alot of water like you said and I plan to do so. Thanks for the reminder. Enjoyed your comment.

[Sunfishjoy]

you’ve got this! And you’re reminding me of how terrified I was before my first treatment, Rituxan. Terror subsided when my labs quickly became normal. How fortunate we are to have these treatments and more in the pipeline. Keep me posted on your progress please.

[Vacationmountaintop in reply to Sunfishjoy]

Thank you so much for the encouragement!!! Yes you are most certainly right about these different treatments being available and hopefully more to come, even though there may be some side effects to them. I will be posting how my first week goes. Appreciate your thoughtfulness😀

[MisfitK]

To get more answers, you might want to lock your post to this community.

In the mean time, I have a series of posts related to this issue if you want my feedback.

[Vacationmountaintop in reply to MisfitK]

Hi Misfit, Please explain how to lock my post. I thought I did that already , but apparently I didn't. When I logged in this morning I had option of selecting who I wanted to see my posts and I chose community. That wasn't enough to lock in? I would love your feedback too.

[MisfitK in reply to Vacationmountaintop]

That is how to do it, but if you look at your top post, you should see a literal lock icon next to the the name line - on the end next to number of replies (and it's not there) - it may not have saved correctly. I'd edit and try it again.

[AussieNeil Partner Administrator in reply to Vacationmountaintop]

This post explains how to lock your posts. healthunlocked.com/cllsuppo...

You can't set an option in your profile to set your post share default - you need to follow this process for each of your posts.

Neil