30 days of Zanu

[Nana1961]

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!

[Newdawn Administrator]

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

Newdawn

[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 Administrator 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]

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

combination ?

[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 in reply to Richard_TX]

That’s incredible!

[Newdawn Administrator]

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

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

Newdawn

[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 in reply to Grandadsboys]

Sorry the first one should be zanu

[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 Administrator in reply to Grandadsboys]

No just mono Zanubrutinib for now Grandadsboys.

Newdawn

[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 Administrator in reply to Nana1961]

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

Newdawn

[Nana1961 in reply to Newdawn]

Oh yeah. Sorry.

[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

[Family2017 in reply to Nana1961]

Hi, it's been a long time since here at site. Presently, Oncologist holding back to give Zanubrutinib she says once I start I have to be on it for the rest of my life. Present issues night sweats which seem to become less frequent. Enlarge lymph notes come and go. Sometimes they hurt those at base of my skull. Fatigue which I been told I'm anemic. Several test done. CT scan, brain scan I do get lots of headaches in top and back of head. Igm is very high 1234, Iga 70, Igg 230. Hgb 9.0, Platelets down 153 from 258, CBC 7. Also right now having pain spleen flare up.Well end results that which I mentioned above Oncologist states she doesn't think I need treatment at this time. IDK! I just stay in prayer. Thank you in advance for any feedback

Patti

[Nana1961 in reply to Family2017]

Hello!

I had most of your same issues! I’ve been on Zanu since July. Doing great and my pain is gone. I do still have some fatigue and aches but overall doing much better.

I’m not happy about taking indefinitely, but didn’t want to do infusions.

[Family2017 in reply to Nana1961]

Hi thank you for your reply. I see Oncologist October 28, 2024. My husband and son we'll be discussing with her about treatment. Let you know the outcome. Thanks again 🙏

[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]

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 in reply to akirsch973]

That’s great!!! We are so lucky!

[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 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]

awesome! Continue to feel better!🧡🤗🤎