3 ms·
> Part of this is due to the fact that many of these are drugs for refractory or late-stage cancer; this in turn may be due to regulatory or medical-ethics issu
by beefman 9y ago
> Part of this is due to the fact that many of these are drugs for refractory or late-stage cancer; this in turn may be due to regulatory or medical-ethics issues that make it hard to directly compare a new drug to the standard-of-care old drugs.
My best friend's younger brother is currently dying of sarcoma. I think it should be illegal to give therapies (and false hope) which are proven to extend agony and proven not to extend overall survival. Meanwhile, studies of new therapies must be performed on relapsed patients with hardened cancers. As long as this is true, the rate of discovery of effective therapies will remain staggeringly low, and the rate of human suffering from cancer staggeringly high.
It's easy to blame regulations, but in my opinion they are ultimately a consequence of our inability to speak honestly. People I've known all my life, through thick and thin... yet it seems impossible for us to acknowledge the truth of his treatment: progressively increasing suffering and death, at tremendous financial cost to his family and society.
I recently forced myself to break the ice a bit in a conversation with a mutual friend. It was harder than I imagined but went better than I thought it would. Paul Erdos had a way of talking extremely honestly about things... I tried to channel him a bit. I encourage everything to think hard about breaking the status quo of discourse about cancer.
I'm left wondering whether, if I get cancer, I will have the ability to choose experimental treatment in lieu of "protocols" which are proven to be unsafe and ineffective. (If anyone has advice on that, I'd like to start getting a plan together.)
Background: My parents were both pharmaceutical chemists. My father is named on over 40 patents. I invest in pharmaceutical and "biotech" companies with a focus on new cancer therapies.
- specialist 9y ago"I think it should be illegal to give therapies (and false hope) which are proven to extend agony and proven not to extend overall survival." I used to agree with you, emphatically. Now I'm not so sure. I had a bone marrow transplant 30 years ago. At the time, one year mortality was 95%. Let's just say it was hard, both physically and mentally. And the doctors absolutely lied by omission. I see that look of hopeful desperation in new patients every time I go back for a checkup. No doubt patients (research subjects) are being exploited. But... Whereas I was a boy in the bubble, similar treatment today is practically an outpatient therapy. Like a comment upthread, one of my bffs was diagnosed with terminal cancer, qualified for a clinical trial for immunotherapy, now three years later is "cancer free". Seeing how far we've progressed, now I think our sacrifices were probably worth it. I'm certainly less angry about it.
- beefman 9y agoThanks for sharing your story. BMT is a surgery though, and surgery is always experimental in a sense, and has been improving at a satisfactory rate in general. Drugs are a little different. Great to hear about your friend. A close friend of mine died last year of cancer while enrolled in an immunotherapy trial. He wasn't enrolled until after he'd failed two rounds of conventional treatment, and I wonder if it might have been better to do things in a different order. Edit: Completely wrong; thanks maxerickson.
- maxerickson 9y agoBone marrow transplants are chemotherapy (and maybe radiation treatments) to kill existing bone marrow and then infusion of new cells into the bloodstream. It's not a surgery as such. https://bethematch.org/patients-and-families/about-transplant/what-is-a-bone-marrow-transplant-/ https://bethematch.org/patients-and-families/about-transplan...
- beefman 9y agoThanks. I've invested in a new ablation agent for BMT but I never knew the second step was nonsurgical.
- jessriedel 9y agoIn my anecdotal experience, giving patients the brutal facts about experimental cancer treatments doesn't shift their decisions much. Regardless of the exact odds, some people are predisposed to fight long odds with painful treatment, and some are predisposed to stop fighting and optimize quality of life. Both choices are legitimate and it's not worth bending the truth one iota to try and get more research subjects (or to bend it the other way to avoid "false hope"). Most lying in this context is driven by the speaker's (partially unconscious) desire to avoid short-term social tension.