30 days of Zanu: Hey y’all, Just completed... - CLL Support

CLL Support

22,956 members39,419 posts

30 days of Zanu

Nana1961 profile image
21 Replies

Hey y’all,

Just completed first 30 days of Zanu! Feeling good. Lymphnode pain minimal, more energy!

Lots of bruises, a few rashes, nausea, all manageable!

WBC is now 258k Hgb 8.2

Feeling much better!

Written by
Nana1961 profile image
Nana1961
To view profiles and participate in discussions please or .
21 Replies
Newdawn profile image
NewdawnAdministrator

That so good to hear seeing as I’m starting Zanubrutinib next Thursday 😊

Newdawn

Nana1961 profile image
Nana1961 in reply to Newdawn

I was so scared to start but so glad I did now!

Hope all goes well with you too!

Where are you?

Newdawn profile image
NewdawnAdministrator in reply to Nana1961

I’m in the U.K. and this is my second treatment. I’ve had CLL 12 yrs. This latest post explains how I came to be prescribed Zanubrutinib;

healthunlocked.com/cllsuppo...

Hope you continue to do really well.

Newdawn

may04cll profile image
may04cll

Why was Zanu recommended and not one of the other's or a

combination ?

Richard_TX profile image
Richard_TX

This is my results on Zanubrutinib (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

7/23/24; WBC: 8.9 / HGB: 14.3 / Platelets: 215 / ALC: 3.52

And absolutely no negative side effects.

Nana1961 profile image
Nana1961 in reply to Richard_TX

That’s incredible!

Newdawn profile image
NewdawnAdministrator

Just reading this very encouraging article about the clinical efficacy of Zanubrutinib;

cancer.gov/news-events/canc...

Newdawn

Grandadsboys profile image
Grandadsboys in reply to Newdawn

Hi Sonrotoclax is great,no sides and levels started to return to normal,will you be starting on Sonrotoclax as well .?This also has been very good

Grandadsboys profile image
Grandadsboys in reply to Grandadsboys

Sorry the first one should be zanu

Grandadsboys profile image
Grandadsboys

well done,have been zanu since March ,no side effects at all,started Sonrotoclax on a slow ramp up ,I am now on 80 mill both my haemoglobin & white cell count now both normal,no side effects at all,are you going to start sonrotoclax?

Newdawn profile image
NewdawnAdministrator in reply to Grandadsboys

No just mono Zanubrutinib for now Grandadsboys.

Newdawn

Nana1961 profile image
Nana1961 in reply to Newdawn

I’d love to! However, my doctor said once I started Zanu I was no longer eligible for trial with Sonrotoclax. Are you on the trial?

Newdawn profile image
NewdawnAdministrator in reply to Nana1961

I don’t think that reply was for me perhaps Nana?

Newdawn

Nana1961 profile image
Nana1961 in reply to Newdawn

Oh yeah. Sorry.

Grandadsboys profile image
Grandadsboys in reply to Nana1961

Yes I was very lucky,I get tested every week & every 6 weeks I have CT scans,even my travel expenses are paid for,luckily I only live about 6 miles from the hospital.Hope everything is going well for you

Nana1961 profile image
Nana1961 in reply to Grandadsboys

I had been waiting to start trial but my CLL progressed. My Dr said once I started Zanu I was no longer eligible for the rial combination. They were hoping to have trial open in July but got delayed.

akirsch973 profile image
akirsch973

I have been taking Brukinsa for 3 weeks and feel great. No fatigue, no nausea, no diarrhea , no bruising. Only a rash on my arm, waste, forehead and top of head. No itching, burning or pain. Quite manageable. I have an appointment with my CLL specialist next Friday.

Nana1961 profile image
Nana1961 in reply to akirsch973

That’s great!!! We are so lucky!

Graya1 profile image
Graya1

So pleased to read this. Thank you for posting. I too have been on Zanubrutinib for around the same length of time. I’m very happy with my results . Most of the time feeling good, definitely more energy. My only negatives are very bad headaches which can last for two or three days. I also have occasions where I get up in the morning shower, dress and then have to lie down feeling really unwell. Most of the time I’m fine again within half an hour or so. I just wonder if anyone else has these symptoms?

Nana1961 profile image
Nana1961 in reply to Graya1

I’ve had headaches too! Mostly nausea, sone diarrhea, some rashes and mild abdominal pain. A lot more energy and most pain is gone.

Danie50 profile image
Danie50

awesome! Continue to feel better!🧡🤗🤎

Not what you're looking for?

You may also like...

When will I need treatment? Is Watch and Wait still the best option with newer treatments?

Recent updates 2023: https://www.patientpower.info/cll-answers-now-should-i-still-watch-and-wait...

Privigen 45g/4weeks !!!

I was diagnosed in November 7th 2019 following a bone marrow biopsy. Was on Wait & Wacht...

Over reactive 1st Obin Treatment.

First dose of 100 mcg July 8th and 900 mcg July 9th. After treatment never came back to feeling...

starting O+A in a couple of weeks

I've been on watch and wait going on 7 years. I feel very good and I wouldn't know I had anything...

Newly diagnosed with Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma - CLL/SLL or just found us? This post is for you!

Welcome to the CLL Support community on HealthUnlocked, a very active community with 23,000...