zanubrutinib

[mush56]

hi has anyone had Zanubrutanib . I have been on Ventaclax but had a lot of trouble with my kidneys , Uric acid very high in 500s due to being allergic to allapuranol . I don’t want to have retuximab after the experience I had with it in 2016-2017 so can’t just stay on ventaclax . After reading about Zanubrutanib it has a good review . What have you all to say about it please

[Ellieoak]

I have been on it since December

I have no side effects

I have been diagnosed 11q & 13q mutated

I was w/w for 9 yrs. Bendamustine, then I went onto Imbruvica (which when I was on it terrible side effects) Then I was on Venteclax when that stopped working I started on Zanubrutinib

[WarriorPrincess4]

I have been on Zanubrutinib for five years now and still going strong. I have no side effects and tolerate the drug very well. A few side effects in the beginning but they disappeared within a few weeks. I am active , feel good and I do not mind taking this medication for the rest of my life if it keeps my CLL under control. Good luck to you and your choices.Ellen🪻

[mush56 in reply to WarriorPrincess4]

Hi I’m glad it’s good for you I have found that it’s not funded for CLL in the UK so can’t have it , after reading up on it I was very happy to go on to this . I tried Acalabrutanib but couldn’t tolerate the side effects so onto ventoclax and my kidneys are taking a battering . I had FCR in 2016-2017 they say other than ventoclax there isn’t any other treatment so I searched the web to find what I can have . I have very enlarged nodes all over my body but they found I have a large mass in my stomach so I need to find something that isn’t so harsh . Thank you for your quick reply

[Skyshark in reply to mush56]

Zanubrutinib is in progress for approval by NICE but at present is not recommended for approval even though the draft document says it would be welcome as an additional therapy. The NICE draft document is demanding the scope be increased to all patients and not restricted to a limited number with certain genetic markers. I think they have about 2 weeks to try to reverse this decision. They may have to re-apply with the wider scope which will push the approval into late next year or even '25.

Acalabrutinib is considered to have better tolerability than Zanubrutinib. If you didn't do well on Acalabrutinib you would probably do worse on Zanubrutinib.

"If the goal is best efficacy with acceptable tolerability, we offer zanubrutinib. If the goal is best tolerability with good efficacy, we offer acalabrutinib."

uptodate.com/contents/image...

Drink water! More than 2L a day.

Rasburicase IVs during ramp-up?

[1935husband]

Started Zan in February after 3 years of Ibrutinib. Absolutely no issues. Blood numbers improved. WBC now near normal.

[Jungle-Jim]

I have been on it for over 3 months and consider it a miracle drug. My blood work has achieved a state of virtual normalcy and the side effects are quite tolerable... Almost negligible. We're all different, but for me it's a dream come true. Best wishes!

[scryer99]

On for six months, the last three with another drug in combination.

It had beneficial effect but did not get me to normal; perhaps with continued usage it would have. Still, it improved my counts and symptoms.

Side effects were tolerable. Some mild petechiae (blood spots), some GI issues. Some achiness in joints and muscles after taking it, that seems to come and go over time.

[CoachVera55]

I was on it full dose for 13 days but I was still working out & developed Pleurisy, left untreated led to left pleural effusion/pneumonia/Aetelasis. I stopped & went to Acalabrutinib 1/2 dose for 10.5 weeks but got exposed to a dusty home without a mask when cleaning & chestpain for the 3rd time. Now back on Zanubrutinib 80mg per day 2.5 weeks now & Oncology said stay here until my Lungs & Heart heal.

The original pneumonia was never treated with antibiotics & I went into Pulmonary Edema. Both Pulmonary & Oncology refused to prescribe antibiotics but I got some & feel 100% better. Just using a Nebulizer to deep breath now that the solid consolidation is broken up & coming up.

I felt some palpatations on Acalabrutinib & Zanubrutinib has great dosage flexibility. I think its superb compared to the previous BTKI & that is why I switched back. I am stable & will be patient as I heal. I was W&W 13y 8m BTW so just entering my 4th month of treatment & its been interesting to say the least with 3 ER Visits in 3 months with Chestpain 🤦🏽‍♀️

Hgb 10.8->11.4, WBC/ALC 81->29, Plts 76->77🤷🏽‍♀️