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Comment by mcbain | Hacker News Reader

I'm not sure if they've said publicly what immunotherapy they used. I have seen it referred to as a combo, so I would guess ipi/nivo - that is Nivolumab (Opdivo) + Ipilimumab (Yervoy). They've been trialling those as neoadjuvant for melanoma: https://melanoma.org.au/paper/neo-adjuvant-immunotherapy-eme...

Nivo is generally well tolerated, ipi less so. I only got to my 2nd cycle of ipi/nivo before we discontinued it. (I'd already had more cycles of nivo on a trial.) It can have neurological effects and encephalitis in rare cases, so maybe that's what they are referring to. I wouldn't say "poison" though.

As it happens, Prof Long is my medonc. We don't sit around chatting about Richard though, she's a bit busy on clinic days!

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My wife recently fought and unfortunately lost a battle with metastatic melanoma.

I would agree that the nivo/ipi combo isn’t poison, but it’s no joke, and given that disease like melanoma sprouts mets like crazy, and the side effects of the treatment can result in significant side effect to critical organs.

I think it’s fine to critique the FDA process, but I also think that a conservative approach to approvals is important, because ultimately bad outcomes will cause the pharmaceutical people to get more conservative internally - imo we’re better with a external entity putting the brakes on.

It’s a tough business. I’m uncomfortable with the “fuck it give me the newest whatever” attitude that you find in online forums. I’m an IT exec, my wife was a finance professional in healthcare. It was difficult for us to navigate the decisions and risks. Most people are not well equipped to make risk decisions, and dumping experimental consent and other decisions on people facing death with adequate support is a really vicious thing to do.

One thing that Molly felt deeply was that the hope she was able to have about beating the cancer was built on the shoulders of those before her. And folks even 10-15 years ago had no hope at all. We have a duty to honor the sacrifice made and be cognizant of what is real and what is not.

Thanks for sharing, and I'm really sorry for your loss.

Yours is a really balanced take on why maybe it's not so good to have a "wild west" approach to this.

I've gone to two funerals in the past month for friends who lost battles to cancer. I can only hope we're getting closer to radically better treatments.

Thank you and sorry about your friends.

The most difficult thing is accepting that you cannot control the universe and you can only make the decisions that you can make at the time. With what we do professionally, sometimes we think we have power that we don’t.

My wife was blessed with being treated by an incredible team of doctors at one of the finest cancer centers in the world. They expected full recovery and were shocked when things took a turn. These things are really complex. With advances in scientific computing, genetic analysis is getting faster and better and treatments are improving.

Thats a double edged sword. “OK” in the world of a cancer patient is a relative concept. My experience with the sadness and struggle is that I will remember that these decisions are difficult, and hope is a concept can be both liberating and cruel.

If it doesn't come out beforehand it'll likely be presented at ASCO: https://x.com/profglongmia/status/1753650640847597930

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