cll trial

[Grandadsboys]

hi

I have recently started a trial of zanutrinib& sonrotoclax.I have been taking zanutrinib for about 7 weeks,sonrotoclax will be added in about a month.I have had no side effects up to now & feel fine.

I go for blood tests every Monday & see the haemotologist every 4 weeks. I live in Tauranga which is 1 of only 3 hospitals in the country offering these 2 drugs on a trial.

Thank you

Jack

[Kiwidi]

You are so lucky to be on this trial. Are you aware of CLLANZ? We have a webpage and a Facebook page. We are advocating for the drugs we need to be funded but as you probably know it may take a while. There are others who are on clinical trials also- it’s a lifesaver if you happen to time your need for treatment with the trials available as otherwise it would be chemotherapy as the first line treatment. Good luck!

[scryer99]

Good luck - there are several participants from that trial around the world on the board. Reported results have generally been good, though some take longer than others. The rampup for sonrotoclax is kind of a pain, but the side effects are manageable. (More in my profile if you're interested).

[Grandadsboys in reply to scryer99]

What side effects on sonrotoclax are you experiencing ?

[scryer99 in reply to Grandadsboys]

Been some moderate GI issues, significant bone/joint aches, and some periodic skin rashes/irritation. Neurology has confirmed the joint aches are not from some other issue like arthritis or spinal wear-and-tear.

I needed prescription medications for the skin irritation. The rest I'm addressing with the same medications anyone else would.

I had thrombocytopenia and mild anemia as well, but those were present pre-sonrotoclax so I don't chalk that up to the drug. After about a year on both drugs, those symptoms have improved to near-normal, as have many of my blood counts. Bone marrow, however, we still have a ways to go.

Others have had faster progress, so keep your chin up.

[Phil4-13]

Grandadboys, so glad to hear your treatment is going well. I'm 75, in W&W 4 years since diagnosis. Sonrotoclax is a new one for me. Keep us informed please. It truly is exciting to read about the new treatment combinations. Those in research are doing a fantastic job!😊Sandra

[Stamphappy]

This is exciting. Thanks for posting. I'll be watching for updates. My best wishes for a terrific response and smooth journey.