Zanubrutinib / BGB-3111

[VLAD11]

Hello everybody,

I should go for the first line treatment. My choices are Ibrutinib or try to get into Clinical Trial with BGB-3111/ Zanubrutinib, new BTKi drug from China. Does anybody have any experience with this drug?

Thanks for sharing.

Vlad11

[baq724]

First line results with Ibrutinib have been very positive. A high percentage still progression free 5 plus years out. However, I would be intrigued to do a clinical trial of a "newer" agent. Newer agents are supposed to be tailored to have less side effects based on data from previous therapies. I think this is a great discussion to have with your specialist. Though treatment is never desired, this looks like a win/win situation as far as treatments go. It is so good that more and more options are here now.

Let us know your choice!

[closh]

Hi Vlad

A friend of mine has been on the trial of BGB + Obinituzamab for a couple of years now. He is doing really well and hasn't had any side affects. His standard blood results are all in the normal range, but he still needs IVIG top ups.

BGB is unlikely to get you to MRD- but seems to work at least as well as Ibrutinib as a single agent (there's a lot more data for Ibrutinib though).

Graham

[Fastone]

Hi Vlad11, I ( 64y young male, 17p delition ) have been on Zanubrutinib for 2 years 3 months now and have very little side effects, mainly petechia on arms. Its was my saver after climbing out of a very deep hole after diagnosis. From all I read, and I try to read as much as possible, it has generally very little side effects.

Hope this helps.

Fastone

[MrMidnight]

Hi Vlad,

I have been on Zanubrutinib (like Fastone, I am also 64 years old, 17p deletion) for 2.5 years and it has worked well for me. It has taken this long for my blood to clear and I had severe fatigue for two years, but the haematologist said the fatigue is not because of the drug. I have had no other side effects. The haematologist says the only common side effect is petechiae; he also said none of the 45 participants on this trial in Auckland, NZ, had progressed so far (although I am one of the early adopters and many will have been on the drug for a shorter period than me).

[UkeDuke in reply to MrMidnight]

63 years young. I have been on zanubrutinib for only 6 weeks. I am having some sever fatigue bouts some lasting 3-4 days. I too am told this is not a side effect of the drug itself but more to do with the process the drug undertakes on the CLL. I was told that the drug is doing what it is supposed to do. I have also had some bouts of severe wretching, not vomiting that can last for up to 20 minutes and blistering on the sole of 1 foot. I am hoping the fatigue wont last 2 years. My understanding is that I should feel significantly better after 6 months. We will see.

[MrMidnight in reply to UkeDuke]

Here's hoping you don't have serious fatigue for too long! I have read the Dr Constantine Tam in Australia (who is supervising my clinical trial) reckons zanubrutinib is a better drug than ibrutinib, which is encouraging.

[tsvieps]

I am on Ibrutinib, along with much other stuff. My combination of things are working well with little adverse effects. So I will not switch from the devil I know. But the trials seem to show BGB-3111 and Acalabrutinib as at least a bit better targeted and therefore somewhat more effective and less likely to produce adverse effects. So if starting fresh, I would try BGB-3111. But will you get it for sure in a trial? What is the other arm? If you do get it, it will be free to you. My Ibrutinib is costly, even with Medicare D drug insurance.

[Awksom]

I am currently contemplating a first line Phase 2 trial involving three drugs: BGB-3111, obinutazumab and Venetoclax. I am 13q deletion. Have been on W&W for 2.5 years but have had two bouts of AIHA anemia in past 9 months that are nasty and the prednisone, which helps, has its own issues. Does anyone have any information on a triple trial like this? Thanks. I am in the NE US.

[cajunjeff]

Vlad, I faced the same decision recently. I had signed up for an I/V trial for my first treatment and failed out of the trial before I started when I got a bout of AIHA.

I am on ibrutinib now and doing great. A disadvantage of a trial is there is little flexibility and all kinds of bmb's and scans and other obligations.

While I was disappointed to miss out on the trial, I think for me it was a blessing in disguise. I am doing great with ibrutinib alone and my doctor can watch how all the other trials go and have the flexibility to add drugs to my ibrutinib without being tied to one drug or one certain dose as he would be if I were in a trial.

My opinion would be to do ibrutinib alone. It has a high probability it will work for you for a long time and you can add drugs to it later after seeing how all the combination trials shake out.

[jorum]

Hi Vlad, I am on BGB-3111 trial and have been for 25 months. The drug has been very kind to me, delivered fantastic results and the trial protocol is quite reasonable (I have posted elsewhere on this). 4 CT scans in the first 12 months was the most onerous part. Drug continues to be supplied with a doctors appointment every second month.

[AvatarX]

Dear Vlad11 and others,

My elderly mum in Australia has been on BGB-3111/ZanuIbrutinib for 15 months. It's been a real lifesaver, her haemo levels have risen from low 80s to as high as 114 (currently hovering around 107-108) and her IGM was at 21 and is now 5.5!!

We have seen some adverse effects (AEs) such as petechiae on the head, and upper respiratory tract infection (URTI) due to her lowered immune system. I waited until BGB-3111 became available in our area as i knew it was more targeted (BTK) and recent than Ibrutinib. I have done a lot of research, before we put her into the worldwide trial. We used Allopurinol for a few months, to manage gout as the white cells get destroyed and flushed through the liver system.

It's been an excellent drug with a very high overall response rate ORR worldwide and manageable side effects (dosage is 4 tablets per day, but i think this can be reduced substantially once the haemo levels are over 105 and IGM down into the 5 to 6 range.

There is a possible cure as nearly all patients exhibit mutations in the MYD88 (Waldenstroms), we are just waiting on the CRISPR technology to develop further so gene-editing this lymphoma is more than likely in the next decade. Hope is certainly on the horizon, maybe the Chinese will find this out first as they seem less restricted by the ethics we have in the West.

Very best wishes to you all in your diagnosis & treatment!

Avatar