Have any of you changed from another BTK inhibitor to Zanubrutinib?

[Mogal]

Due to daily headaches from acalabrutinib, I have just switched to Zanubrutinib. Has anybody else made this change? Did it go well? Anything unusual I should be aware of? The side effects look the same except for no mention of headaches with Zanubrutinib.

[Justasheet1]

Mogal,

How did you manage a switch to Zanubrutinib? It is not approved yet for CLL.

Is your doctor prescribing it off label and then your insurance company is paying for it?

Jeff

[Sushibruno in reply to Justasheet1]

Jeff do u know the difference between these 2 drugs and even ibrutinib? Does this one have less side effects?

[Justasheet1 in reply to Sushibruno]

Lydia,

They all target BTK on the surface of B cells. BTK is over expressed on CLL cells and are a great target.

Ibrutinib is a first generation BTK inhibitor and tends to produce more side effects such as joint pain, bleeding, high blood pressure and even a heart arrhythmia called a-fib.

It isn’t a slam dunk that you will have any of these issues. I’m doing great on ibrutinib for 2 years and only had joint pain for the first month but will bleed if I get cut which might be the same with the others.

Ibrutinib has been around for almost 9 years and Acalabrutinib for half of that and the new kid is Zanubrutinib.

Acalabrutinib and now Zanubrutinib are second generation BTK inhibitors that are more targeted and potentially can cause fewer side effects.

But they all work the same and as well. Zanubrutinib may even work the best but the drug is new and not approved yet but will be soon.

onclive.com/view/safety-and...

Jeff

[Sushibruno in reply to Justasheet1]

And since it's early days, we don't know what other potential side effects may come with it, am I right? Just trying to be educated🙂.

[Justasheet1 in reply to Sushibruno]

Perhaps but because it’s basically better ibrutinib, I would think it’s pretty darn good and as safe as the others.

Your specialist is listed on the video I linked. You could get a better explanation from her, I’m sure.

onclive.com/view/safety-and...

[Sushibruno in reply to Justasheet1]

Thank u so much Jeff.

[SofiaDeo in reply to Justasheet1]

I wouldn't say so much it's "better than ibrutinib," as, it's an attempt to be "more targeted" as well as "change the side effect profiles". And 2nd or 3rd generation may not necessarily be "less" side effects, just different. These may still make it to market, if there is a therapeutic rationale even with a more severe side effect profile. For example, some of the 3rd generation cephalosporin drugs have "more severe" side effects compared to the 1st generation. Another example (antibiotic, not cancer drug), we still use chlormamphenicol occasionally when other meds have failed, but it's not the first choice. Second and 3rd generation meds are simply slightly different, and as we find out the side effects of the first generation medications, there are alterations done to the molecules that affect the receptor sites to try to change these effects. Sometimes a later generation medication works much better with less side effects, sometimes not. Since the unsuccessful ones never make it to market, it's not reported in the news.

[Justasheet1 in reply to SofiaDeo]

Sofia,

Let’s hope that we’re talking about apples and oranges with regards to the comparison to the antibiotics.

I feel pretty good about these targeted agents being more selective as you mentioned but time will tell.

Anything that keeps us on effective treatment till it ultimately fails is a win.

Jeff

[SofiaDeo in reply to Justasheet1]

Oh yes, I am just trying to use a simile that non-medical people may understand better.....antibiotics, and the "newer" ones, and why their doc may start with an "older" one, are generally understood by people IMO. We obviously can't do any kind of test to determine the best targeted therapy to start with, like we can with an antibiotic culture test!

Apologies if my intent was off-base!

[Justasheet1 in reply to SofiaDeo]

Thanks Sofia, that makes perfect sense.

[Sushibruno in reply to Justasheet1]

Hi Jeff are u still on ibrutinib?

[Justasheet1 in reply to Sushibruno]

Lydia,

Yes I am and I’m doing, knock on wood, fabulous. This drug works phenomenally for me.

Jeff

[Sushibruno in reply to Justasheet1]

🙂👍glad to hear Jeff.

[AussieNeil Partner Administrator in reply to Justasheet1]

Hi Jeff,

As you noted, because zanubritinb is FDA approved for MCL, it can be prescribed off label for CLL. Per this CLL Society update from 4th January 2021: cllsociety.org/2021/01/nccn...

"The well respected NCCN (National Comprehensive Cancer Network) publishes treatment guidelines for many cancers including CLL and in Dec. 2020 made the following updates to their CLL recommendations:

First-line therapy of zanubrutinib as a single agent is recommended for the treatment of CLL/SLL with del(17p) and TP53 mutations in patients with contraindication to other bruton tyrosine kinase (BTK) inhibitors who have indications for treatment.

For second-line treatment and subsequent therapy, the NCCN recommends the indication as a single agent for the treatment of CLL/SLL with or without del(17p) and TP53 mutations in patients with intolerance or contraindication to other BTK inhibitors who have indications for retreatment.

:

The reasons for this NCCN recommendation are based on its safety and efficacy data and on its ability to be used with many commonly used other drugs without fear of significant drug/drug interactions."

Neil

[Sushibruno in reply to AussieNeil]

The thought of first time treatment is so terrifying to me. I can only imagine how im going to react to the first pill I put into my mouth. I don't think I would feel this way if side effects didn't exist.

[AussieNeil Partner Administrator in reply to Sushibruno]

Lydia, change your mindset to imagining all those dreaded CLL cells disappearing from your body. Modern drugs are very targeted. Our members who don't have much in the way of side effects don't see a need to post about that, though we all appreciate those that take the time to reply, sharing their good experiences.

[Sushibruno in reply to AussieNeil]

Yes Neil you're absolutely right sometimes I let my thoughts get the best of me, and it all comes down to this anxiety I feel all the time. I respect and take your comments to heart🙂. Thank you

[Bixilon in reply to Sushibruno]

hola. Voy a responder en castellano , ya que me es mas facil expresarme. Hace un poco mas de 3 años que tomo la dosis completa de ibrutinib y superado los primeros dias de miedo a la reaccion del medicamento , solo agradezco que este remedios hayan llegado a mi. Hago una vida normal de una persona de 76 años. Soy bastante agil y activa. Tengo achaques, propios de mi edad, hace 6 meses se me redujo la dosis a 2 pastillas pir dia y sigo bien . Mi humilde sugerencia es que confies y vivas positivamente . Es un milagro las nuevas drogas. Aprovechalas y disfrutalas porque seguramente te van a ayudar a vivir despreocupada y controlada la enfermedad. Es mi experiencia y deseo que la tuya sea igual de buena. Confia

[Sushibruno in reply to Bixilon]

Muchas gracias por tu buen comentario Bixilon. Yo se que debo apender a superar lo que me ha estado pasando por 5 anos desde que fui diagnosticada. Ha sido un tormento mentalmente. Principalmente el miedo me atrapa y me paraliza. Quiero ser lo contrario de lo que he vivido ultimamente pero ha sido un reto. No se como ser la persona que fui antes de este diagnostico. Pero estoy intentandolo porque es sumamente dificil por lo menos para mi. La anciedad domina mis sentimientos. No lo cojas como que soy una persona negativa eso es lo que no quiero. Solamente lo que mas deseo en este mundo es vivir en paz. No pido nada mas. Te admiro por ser valiente y enfrentar esto como lo que percibo una persona que no se deja derotar. Muchas gracias por tu mensaje lo tendre muy presente en mi guerra contra esto que no he logrado superar🙂.

[Bixilon in reply to Sushibruno]

solo me gustaria transmitirte lo que despues de algun tiempo de sufrimiento aprendi.... a convivir con una enfermedad cronica que tenemos la suerte de poder tratarla , ojala puedas superarlo porque mientras tanto la vida sigue y disfrutarla aun con algunos limites vale la pena. Te deseo lo mejor,.

[Sushibruno in reply to Bixilon]

Te lo agradesco de todo corazon🙂. Que Estes bien, Suerte.

[Justasheet1 in reply to Sushibruno]

Lydia,

This sounds strange but I was always less anxious about my CLL when I was actively on treatment.

Sure there might be side effects but I’m not good at waiting around while the cancer multiples. I take my ibrutinib every day and I know that I’m killing the cancer every day.

I have a friend who is mrd- from Venetoclax and obinutuzamab. He worried before treatment and now after. I think he would have done better mentally on a continuous treatment like ibrutinib if there were no significant unmanageable side effects.

Your doctor is awesome and you will do phenomenal. 15 years ago things were different. Thank God for the doctors, researchers and even Big Pharma in our case.

Jeff

[Sushibruno in reply to Justasheet1]

I know Jeff, I know. i appreciate your comment very much and i completely agree with all you've said. I know things will be different once i start treatment. The unknown is very much scary but i know i will come out winning at the end. " your doctor is awesome and you will do phenomenal ". I will remember this🙂 thanks Jeff.

[Youngen in reply to Justasheet1]

Jeff- I completely agree with the positive psychological impact of knowing that I am actively doing something everyday to keep the CLL away. W&W was very challenging for me mentally!

For the first time since dx, I pop my pills and manage to mostly put the CLL in the back of my mind!

[MovingForward4423 in reply to Sushibruno]

I felt like that. Took the first pill and all the cLL symptoms melted away in 24 hours……I get the odd side effect from time to time but it’s a great trade off for being alive.

[Sushibruno in reply to MovingForward4423]

🙂 thank you.

[Mogal in reply to Justasheet1]

I am not sure it is still off label for CLL- ....my oncologist thought it was worth trying since I was still having daily headaches after being over a year on acalabrutinib.

[Justasheet1 in reply to Mogal]

It is.

[MovingForward4423 in reply to Mogal]

Did you take Ibrutinib or go straight to acalabrutinib?

[Mogal in reply to MovingForward4423]

I started with ibrutinib a couple years ago , but my B/P kept creeping up, so switched to acalabrutinib . My B/P went back down to normal , but I couldn,t shake the headaches, hence decided to try Zanubrutinib, which does not list headaches as a common side effect. Fingers crossed!!

[Justasheet1]

Neil,

Thanks for your reply. I mentioned that to the original poster in my reply to him though not nearly detailed like yours.

Thanks for reemphasizing that point.

Jeff

[AussieNeil Partner Administrator in reply to Justasheet1]

Sorry Jeff, I missed reading your second sentence about the off-label use of zanubrutinb/Brukinsa . I've updated my reply. I thought it would have been approved for CLL by now!

[Justasheet1 in reply to AussieNeil]

Neil,

I heard from a reliable source that it will be approved next month. Apparently the rights were bought out and that was the hold up on submitting the paperwork.

I hope that I’m right.

Jeff

[Zia2 in reply to Justasheet1]

Hope so too!! I’m going to email my doc.

[Zia2]

My doc is considering it for me. Months ago she said they’ll have to have a good argument for it since it’s not approved yet. I’m curious to see if anyone answers your questions too. If Jeff is correct I’ll switch next month.

[bayside64]

I was on Acalabrutinib and developed a serious hematoma. I was then switched to Zanubrutinib and also developed a hematoma but it was very mild. I can’t take any other BTK inhibitors. I now am on Venetoclax. I am super sensitive to any meds. You should be fine.

[WarriorPrincess4]

I have been on Zanubrutinib for almost three years now. At the start of treatment I had a few mild side effects that disappeared within a week. I am now enjoying life symptom free, my CLL is under control, blood works are good despite this there is still a 8,772 % detection of CLL cells. My specialist assured me that this is normal for therapy with a BTk inhibitor.

I feel wonderful, better than before I started treatment. I have zero side affects and feel very healthy! 🙂

Hope this helps you in switching to Zanubrutinib.

Ellen

[Mogal in reply to WarriorPrincess4]

Such encouraging news! Thanks for sharing.

[Zia2]

How much are you taking a day?

[Mogal in reply to Zia2]

The usual dose is four 80 mg. Tablets A day. Two tabs in the morning and 2 tabs 12 hours later.

[Davidcara]

changed from ibrutinib to Zanubrutinib. The only advantage to ibrutinib for me was longer term data, and one pill a day compared to two pills twice a day for Zanubrutinib. Otherwise, prefer Zanubrutinib, less side effects than ibrutinib, which were not to bad for me