Zanubrutinib

[Nana1961]

can anyone share their experience with Zanubrutinib please?

[lankisterguy Volunteer]

Hi Nana1961,

Did you check out the box on this page labeled: "Related Posts

*Zanubrutinib or ventoclax?

*Starting Zanubrutinib

*Zanubrutinib (BGB-3111)

*Issues starting with Zanubrutinib

-

And here is a link to the 349 previous postings that mentioned Zanubrutinib:

healthunlocked.com/cllsuppo...

-

Len

[Richard_TX]

I was diagnosed at 57 yrs old in Aug. 2016 with CLL and was on watch & wait for 7 years. After reading about all the treatment successes, and once my WBC doubled within 6 months, I was ready for treatment. My markers are; CD38, ZAP70, FISH negative and unmutated. We decided Zanabrutinib/Brukinsa was the best path for me. Below are my Labs before and after treatment with Brukinsa.

7/26/2016; WBC: 13.6 / HGB: 14.6 / Platelets: 232 / ALC: 7.9

11/8/2017; WBC: 17 / HGB: 14.6 / Platelets: 232 / ALC: 7.9

11/3/2022; WBC: 105.4 / HGB: 13.2 / Platelets: 208 / ALC: 86.43

5/11/23; WBC: 201.8 / HGB: 12.9 / Platelets: 199 / ALC: 185.66

5/19/2023; Begin Brukinsa

6/13/23; WBC: 158.5 / HGB: 12.5 / Platelets: 193 / ALC: 153.75

9/12/23; WBC: 50.10 / HGB: 14.7 / Platelets: 273 / ALC: 42.08

11/3/23; WBC: 23.9 / HGB: 14.8 / Platelets: 273 / ALC: 18.88

12/15/23; WBC: 18.1 / HGB: 14.8 / Platelets: 295 / ALC: 10.86

2/27/24; WBC: 10.4 / HGB: 14.3 / Platelets: 228 / ALC: 4.9

I have had zero side effects to date while on treatment. Within the first two weeks of starting on Brukinsa, I noticed Lymp nodes decreasing tremendously. Prior to treatment, my urine stream was weak, and after just 10 days of treatment it was back to normal. I have had no side effects and my Dr's at MD Anderson said most people do not have any side affects so you will probably be the same. Brukinsa is a very effective treatment for CLL. I take 4 capsules (4x80mg) once daily, every morning with my breakfast. No different than taking a handful of vitamins every morning. You should do fine.

[Nana1961 in reply to Richard_TX]

Thanks Richard!

That sounds great. So you started treatment last year?

[Richard_TX in reply to Nana1961]

Yes 5/19/2023

[DRM18]

Hi Nana,

I've been on it for a year and four months. Very mild experience. Labs now largely normal, just a lightly low ALC, which is to be expected, and is actually a good thing.

First six weeks, one of my lower legs was reddish, started a day after starting the med. Just a weird skin thing. A year later, it happened to my other leg for a month or two.

I also get the occasional random red splotch or spot or bruise.

Never felt bad, really. As I'm sure you know, Zanu is associated w/ fewer side effects than its two predecessors, and has also proven to be perhaps slightly more effective, in many cases.

The law of averages tells me it's likely to work quite well for you, and that you'll experience mild side effects, at most.

... There are "horror stories," of course, as there are with any drug, even over-the-counter ones. My sister--a doctor of pharmacology--tells me that, when drugs are being researched, any and every strange symptom reported in trial is added to the list of possible side effects of that drug, making said lists into real horror shows.

Feel free to ask me any questions you might have, either here or via direct message!

--Dave!

[Red49 in reply to DRM18]

Hi Dave,

I am now trying to decide between Acalabrutinib or Zanubrutinib. My specialist wants to know which one by my next appt July 24th. She really has not given me any insight as to which one has “less side effects.” I am currently leaning towards Acalabrutinib as I thought it had less of even the most common side effects. What led you to pick ZANU over Acalabrutinib?

Thanks!

[Canuck901 in reply to Red49]

i would consider zanu or acala , as the zanu has much better efficacy .

[DRM18 in reply to Red49]

Hi Red,

It's more like both drugs have slightly different side-effect profiles, not so much one drug having fewer side effects than the other, but both drugs are highly tolerable. ... If, however, unlikely though it may be, whichever drug you choose ends up being intolerable due to side effects, you can always switch to the other one.

As for why I chose Zanu, I did so out of optimistic naivety. Zanu was newer (3rd generation), so I suspected it'd have to be slightly better, or why exist at all? Turns out the research so far supports as much, but not significantly.

That's about as deep as I got lol.

--Dave!

[Red49 in reply to DRM18]

Thanks for the response Dave! And you’re right I can switch if the side effects are too much, sometimes I just gotta throw caution to the wind.

Laura

[IRN83]

I have been on it for only 3 months. Initially I had upset stomach and fatigue. These have cleared. I do have the little red spots ( broken capillaries). But other than red dots I am well with plenty of energy. But it is too early to know if it is working yet. More tests next month.

[Nana1961 in reply to IRN83]

Did your blood pressure go up?

[IRN83 in reply to Nana1961]

Perhaps slightly. Perhaps too early to tell.

[GRMat158]

Almost 5 years now - when I needed treatment in 2019 I was randomised onto Zanubrutinib in a clinical trial comparing it with Ibrutinib. As I have reported elsewhere the treatment has gone really well - a mountain range of lymph nodes in my neck had disappeared within days of starting taking it.

Side effects have been minimal - random bruising (not painful) being the most frequent. More recently increasing number of Petechiae (the red dots referred to by IRN83) on my face.

During the checks immediately before starting treatment it was discovered that I also had Atrial Fibrillation - which itself is a possible side effect. To the best of my knowledge that has not got any worse from taking Zanubrutinib - but is still there - and I am now taking an anti-coagulant which means that when I get any cuts it takes a while to stop the bleeding. Again that is a known potential side effect, but exacerbated in my case by the anti-coagulant.

All that aside I feel well - long may that continue!

[AM0000]

Sorry for the late reply. My mom has been on it for about 4 months and tolerating it quite well few bruises popping up on her legs. She has been breaking out into rashes and although not one of the 'side-effects', antihistamines have been helping with that. I can provide more updates as she continues with this treatment.

[Nana1961 in reply to AM0000]

Thanks! Best of luck to your mom.