I realise that Zanubrutinib is a newish BTKi to the market, especially in the UK but if anyone (in or outside the UK) has any experience of this drug, good or bad, I would be grateful if you could share it to assist CLL Support in their submission for the appraisal.
NICE do like to hear of real patients' experience of any drug that they are evaluating. You can either reply to this post or send me a PM over the next few day if you can (the timeline is a short one).
Many thanks in advance
Jackie
Hi Jackie
It's been around a while did know someone in Australia who received it early days but unfortunately it didn't work for him .
Here is the link from ash they talk about its superiority over ibrutinib hope this helps
patientpower.info/chronic-l...
Thanks for that, I have all the technical information I need and references, just need some patient experiences now.
Not sure if it can be used for relapsed patients who have failed ibrutinib. Which I'm still on myself. Did ask my consultant what next when ibrutinib fails for me and I'm sure he said another btk inhibitor which surprised me as you wouldn't think they would work . Previously a few years ago when I asked he told me veneticlax as a pathway to SCT .so things have moved on .Anyway hope you are well and all is good for you
Cartwheels,
I also asked the same question and was told Venetoclax. I just, sadly, like to have plan B in my mind, but let’s hope we won’t need to know. I am going to ask again at my next face to face in a months time.
Colette
Nothing sad about it. Shows you are thinking ahead,I first asked the question after around 2 years on ibrutinib, I'm now coming up to 6 years and each year advances are being made . I hope you get as long as meon ibrutinib and at present I'm still good
Me too 🤞
it’s being evaluated for RR CLL too
I developed a hematoma and stopped it right away.
Hello Jackie. After 2 years on Venetoclax and a resulting 2 1/2 year remission I started on Brukinsa/Zanubrutinib in mid-November. So far all good. No annoying side effects . I'm told that success takes time. Getting your lymphocytes back to their normal range apparently will/can take months.
Jackie I took it. Will my bio help? I’m more than willing to.
After two chemo treatments I went on Ibrutinib for six years. I then relapsed and mutated to P53. I have been on Venetoclax for the last two years and in March I'll be taken off it.
Will Zanubrutinib work for me? A friend has been on it in NYC for a few years with no side effects and a good remission but he was previously untreated.
Splash,
I would say that it would not work for you if you relapsed on a BTK. You would either be rechallenged with Venetoclax when you needed treatment again or you could look to a new BTK called Pirtabrutinib which binds to a different site on the B cell. It also is not officially approved yet by the FDA.
Jeff
Thanks Jeff, great to know I have options when the time comes.
It may work but that will depend on why you relapsed. Were any tests done to see if you have any BTK mutations?
Jackie
I was Tri12 before coming off the Ibrutinib. I was advised to come off it earlier than six years as my cells were going up but as it suited me so well I clung on somewhat. I was taken off Ibrutinib suddenly and within three days my Leukaemia cells had rocketed up, the hospital thought I had Richters although the tests showed it wasnt but I had mutated to 17p. After I was put on Venetoclax the cells came down and after two years I'll be taken off it in March. It would be good to know what my options are after that though.
Your situation is similar to what happened to me. It was a very worrying time and I'm sure it has been for you too.
Yes not knowing what treatment options lie ahead is indeed worrying. I would be interested to know where you are with your CLL path.
I'm almost 1 yer into my 2 years of V+R treatment. I'm having a CT scan and BMB soon to see how I've responded and then we'll make a decision about next steps which may be a transplant.
Any other drugs will have to be via a clinical trial from now on, sadly we will have run out of NICE approved options but there are exciting new treatments on the horizon.
Jackie
I’m pulling for you Jackie as I’m sure many others are, too. There are countless people you have touched who appreciate the knowledge and time you have shared both on Healthunlocked and as a patient advocate. The world needs more people like you.
I was at Dana Farber in Boston today and I read the below quote on a lobby wall and it resonated with me. Clearly, you have been operating in the spirt of this quote for a long time. I’ve committed to doing so as well.
"It has been said the purpose of life is to spend it on something that outlives you.
No man finds his ultimate end in himself, but does so by sharing with others.
- Sidney Farber, MD
I hope your doctors are able to figure out a good treatment path for you to follow. Good luck with your testing.
Thank you,
Mark
Good luck with your treatment options ahead Jackie.
I found there are trials happening for new drugs in the pipeline, although they take a bit of detective work to find.
Five UK CLL Patients to Sound Off
Ibrutinib Trial 
Zanubrutinib My doc wants to start me on this when my numbers are good UK NICE Approves Ibrutinib +Venetoclax for First Line treatment for ALL Patients from today
WARNING to CLL patients about the UK shingles vaccination campaign - CLL patient's are immune compromised and should not be included.
