[paperwasp42]

I applaud these researchers, but I have to admit this quote made my blood boil:

>> "I can only do this because I'm a cancer researcher and clinician and so inherently understand the risks," he said.

As a cancer survivor, and someone who lost a loved one to glioblastoma, I despise this mindset. The idea that us "common folk" aren't intelligent or educated enough to make the decision to join risky trials is maddening.

I fully understand and support this mindset when it's regarding minor diseases. But if someone has 6-9 months to live, and zero chance of survival, I think they have every right to choose to be used as guinea pigs.

I know my relative would have LEAPED at this sort of opportunity. She was given 6-10 months, and was dead by 4.

At the time, there was an on-going trial she was rejected for, because she had a minor preexisting condition, and thus is it was "too risky." I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months.

I am hopeful that the rapid development of the COVID vaccine may have flipped a switch in biotech, and may lead to more risky and experimental trials for truly deadly diseases, such as glioblastoma.

If not, I will continue to look to China for hopeful developments. They seem to have more relaxed barriers for trials, and I firmly believe this is one of the reasons their biotech industry is exploding at such a rapid pace.

[jseliger]

I don't know about the situation in Australia, but in the US the FDA is way too slow and arbitrary, and it's costing lives every year, including, soon, mine: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce... (HN discussion: https://news.ycombinator.com/item?id=36827438).

People with what I have—recurrent/metastatic squamous cell carcinomas—are in effect already dead. We should be able to try novel drugs faster, and, if they don't work or have serious side effects, fine, the end result is the same. If they do work, they may prolong everyone else's lives.

[slashdev]

Have you tried obtaining the drugs by other means?

My mom is taking an experimental drug, not FDA approved, which my dad obtained from India after much research and after consulting with her doctor.

Tests have shown she’s a part of percentage of the population that doesn’t metabolize tamoxifen well, so the drug is useless to her. Instead she’s taking endoxifen, which is the main active metabolite of tamoxifen. It’s currently in clinical trials.

[kstrauser]

Sorry to hear that, and I agree completely.

[mortureb]

I’m sorry for what you’re going through. I think there really should be a separate FDA category for people with a few years left to live. Still not available to the general public but something a physician should be able to recommend to terminal cases.

Have you tried directly calling or visiting the trial location and try to get in touch with the person administering these to see if you can get in that way. Alternatively if you’re rich you can commission a lab in India to make these for you. They have a lot of experience making the covid mRNA drugs so should be able to pivot relatively easily if you’re paying enough. Bharat labs made the Covax vaccine so maybe start there but I’m sure a bit of googling should bring up more labs.

You have nothing to lose man. If you’re too sick to call around I hope there is someone in your life who can. Go down swinging, contact an Indian/Chinese lab today.

[mortureb]

As the other commenter mentioned, I knew someone that had fantastic results just getting her “experimental” drugs from India.

[steveBK123]

Same elitist attitude I saw on a recent NYT piece about paid full-body MRIs. "People might find stuff that isn't cancerous and freak out".

OK well, it might also find early stage cancers that show no symptoms until past the point of no return!

MRIs have no side effects aside from the high cost. Even their high cost is reasonably affordable if only done every 5-10 years. As long as doctors & patients make rational follow up decisions with the results, it's a net benefit to be able to get these scans every few years to catch early, slow moving, hard to detect cancers.

There are a wide range of cancers there really are no routine screenings for. Yes we screen for what.. breast, colon, prostate, skin.. But what of liver, kidney, thyroid, pancreas, and various others?

We had a close friend discover they had stage 2 cancer found during a CT scan after a routine medical procedure went awry. They were told that had the slip-up not occurred, they would have probably lived another 5-10 years, and not fallen ill with any symptoms until stage 4.

I don't understand the mindset that we should just pretend the tools aren't available to detect things earlier.

[hgomersall]

It's more complicated than that. Misdiagnosis comes with a high cost. What we emphatically do not have is a way to reliably confirm or stage without additional risky interventions, and that's before we even start discussing the mental health implications of misdiagnosis. So as a doctor, it's not about withholding information for the benefit of the patient, it's being aware that for many cancers, in aggregate, they may very well end up doing more harm than good if they screen for it.

[KaiserPro]

Full body scans have quite some history. If they were effective at routine preventive detection, the NHS would deploy them in a flash, because its cheaper right?

The problem is the false positive rate is >> catching unknown bad things.

its the same with breast cancer in the UK there is a 3.1% false positive rate. https://digital.nhs.uk/data-and-information/publications/sta... which requies follow ups. Now as breast surgery is reasonably uncomplicated (source: wife did breast surgery in training) its not _much_ of a risk and is worth it.

However, if its something in the liver, brain or spinal column, the risk its pretty high. This leads to a higher chance of injury from surgery vs stopping something unknown.

This is why something that actually identifies cancer cells is much better than looking for smears on an image. Unless you have monthly MRI scans, from birth, you are going to get nasty side effects from invasive investigations.

EDIT: also most people don't really understand the difference between CAT and MRI scans. CAT scans are much cheaper, faster, and better at finding cancer (you can use dies and junk). given the difference in cost, time and comfort, a lot of people will choose a CAT scan instead. However regular CAT scans will give you a much higher risk of cancer. Something the kardashians pushing whole body scans will neglect to tell you.

[DrJaws]

that have a reason, as it's been demostrated by a lot of metastudies you can find on cochrane that there is usually much more worst outcomes and long term effects on the broad of the population when misdiagnosed by overdiagnosing than just simply saving an extra 0.01% (not real number)

the same reason of why for example now there is an advocacy to end yearly mammograms on older woman, because the number of them saved by that practice is inferior to the ones that are misdiagnosed and then put under other unnecesary medical practices that end up hurting more by unnecesary practices on a lot of them that would have never developed a cancer or under pressure to the ones that no one will be able to save no matter how sooner they got the diagnostic.

infinite constant and unnecesary medical tests is not the way for now, maybe in the future, but not now.

[giantg2]

"I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months."

But then the numbers won't look as good for the drug company.

But yeah, I agree. I wouldn't be surprised if some people with backgrounds in chemistry and stuff start helping others synthesize some of the drugs by sharing knowledge in the future, renting out equipment, etc. Dallas Buyers Club meets Breaking Bad would be interesting.

[kstrauser]

I’m with you. I understand the ethical dilemmas of giving pharma unfettered access to sick people. Still, sick doesn’t automatically mean dumb. My wife reads medical journals and knows how to interpret them. I have much less (yet still more than most) medical experience than her, and I do risk analysis for a living. I think either of us are qualified to look at the statistics and make a rational decision about our own healthcare.

[mft_]

He’s not telling the whole truth.

It’s not his being a cancer researcher allowing full understanding of the risks and possible benefits that is important. It’s more that being a well-known and well-connected cancer researcher enables him to quickly access the contacts and have the discussions necessary to access unusual treatments.

The shame is that doctors (and hospitals, and nurses…) and the care they offer are like everything in life: on a spectrum of quality. Most people diagnosed with a serious disease (such as cancer) simply don’t have the knowledge, skills, time, and resources necessary to drive themselves further along this spectrum from the median towards excellence.

The system is such that to achieve optimal medical outcomes for oneself requires an understanding of the medical system, and an ability to work effectively within (or manipulate) it, to your own benefit. And it’s easy to understand that a well-connected doctor would be able to do that better than most.

[DrJaws]

I think that it's more in the line of

- I jumped some walls that others won't be able because I knew the right people as we work together and they dedicated some of their personal time and public funds to help me, but they won't do it for you

but without sounding like he used the privileges he really had

[lazyasciiart]

Someone who died of an unrelated condition during the trial doesn’t push the science forward, though. They’re not worried about the risk to the patient when they deny entry to an existing trial: they’re worried about the risk to the data.