I was recently released from a clinical trial because of too many “newly measurable” areas of tumor. I was offered CAR-T but was told that it comes with a high risk of possibly fatal infections and is not guaranteed to work at all for my cancer (HER-2 positive lung cancer, stage 4). I turned it down. I have a wife and 3 kids, I’d rather spend an unknown amount of time being fully present with them than risk my life today.
My husband is going in to start a second try at car-t tomorrow (HGBCL DH/TH). We got all the same warnings and we were scared the first time. It wasn't that bad. Besides the 3 days he was out of it due to neurotoxicity (which looks much scarier than it is), he has been fully present with me and the kids. The treatment weakened his body but he got up and started building his strength back up. It only took a few weeks to get moving around again. The biggest hassle for him was not being able to drive for 60 days but even that brought us together more. Car-t or any treatment for that matter is not guaranteed to work. Chemo knocked the cancer back so much that it gave him another year of life and we's made the most of it. He felt better than he had in years after chemo. Then he relapsed and we did car-t, and that gave him another 5 months. This next car-t may give him yet another span of time. Sure, a cure would be ideal but 'getting down the road' far enough to try something hasn't been a bad strategy. We are living in a state of hope. Hope helps.
Is this really a good idea? I’ve been thinking about doing this for a while, but a part of me tells me it’d just be weird and morbid for them, and maybe interfere in their ability to let me go and live their life to the fullest.
I don’t mean videos of us together doing stuff (I.e. memories) but videos meant directly for them to watch. I’m thinking about giving them advice for adulthood and telling them about who I am, and also tell them about who they are as kids (so they can remember it after they grow up). But I’m still not convinced it’s a good idea.
There's an old episode of RadioLab or This American Life (I can't remember which) that explores this very topic. If memory serves, there was a woman who lost her mum at an early age but her mum recorded videos to be shared with her at certain points in her life (birthdays, graduations, etc). I recall her mentioning she came to dread those events knowing she would have to relive losing her mum by watching the video. I can't recall if she felt it was a net positive or not.
The biggest thing people who have lost someone close to them have to say is that they start to forget what the person looked like and sounded like. I am doing it - I think if you keep it casual, like "hey, I was just thinking about you and the day you graduate high school, and I'll bet....." kind of thing, you're making it less morbid.
I have located different bits of old media recorded of my grandfathers on both sides. One example being a long form interview about my maternal grandfather’s Korean War experiences. I enjoy watching or listening to these from time to time. If my father passed early I am sure I would’ve been very grateful to hear his words too.
My mother passed away from lung cancer about 2 years ago.
I wish I had more videos and audio recordings of her. I wish I had handwritten letters from her. I wish I had audio/video of stories and family history only she would know. Above all, I don’t think I would have found any of the above weird or morbid, and I doubt your children (or spouse?) will either. I know my siblings feel the same as I do. You should feel safe in knowing that they will deeply appreciate any artifacts you leave behind for them to think about when they miss you.
I’m sorry for what you’re going through, and I wish you and your family the best.
My Mum went through CAR-T for lymphoma earlier this year. It's a brutal therapy but can offer benefits in the long term.
As you mentioned, the big issues are around infections. It completely wipes out the immune system, including all vaccinations. Every vaccination needs to be taken again, once the body is recovered from the initial therapy.
My Mum recently contracted COVID and is in hospital being given Paxlovid. She had COVID a while ago and it was nothing compared to her current state. CAR-T made it significantly worse but will hopefully be worth it in the long term.
I'm saddened by your news but - given what I've experienced with my Mum during her cancer journey - can understand the difficult decision you've made.
Sorry for being too direct and perhaps offensive, but I'm curious. Was the cancer detected much later? I'm assuming that if it were caught in the early stages, you might have been able to get treated with trastuzumab.
No problem, I don't mind talking about it. It was stage 4 when it was detected. Right lung, pleura, up my lymph nodes to the opposite side. There was a lot of it. And I've had Stereotactic RadioSurgery a few times for metastases in my brain.
Herceptin (trastuzumab) is mainly for HER-2 overexpression, whereas I have HER-2 mutation. However, we did try it last year alongside another chemo whose name I cannot remember, and IIRC that's the combo which gave me neuropathy in my feet (I now take lots of gabapentin every day so my feet don't feel like they're on fire).
Other than the clinical trial drug, which helped for a few months, the one thing that did help but eventually gave me pneumonitis so I had to stop it, was Enhertu.
Cancer really sucks like that. A lot the treatments definitely keep you alive and even cure you but leave you with nasty side effects. Oncologists measure changes in Quality of Life (QoL). When you have some kpi that attempts to model something as subjective as your quality of life you know it's quite bad already.
Of course on a completely different level, but I think this will be similar to how e.g. antibiotics or biologics have played out. First generation has awful side effects as researchers focus on getting anything to work at all. Then once a certain baseline of efficacy is reached, they can focus on reducing side effects.
There's a bunch of different immuno types for melanoma (and other cancers). That one is a combo of nivolumab (aka Opdivo) and relatlimab.
Nivo is used a lot for melanoma, also commonly in combo with ipi (ipilimumab, yervoy). Pembro (keytruda) is the other common one.
Anyway, any of these can have adverse effects so patients are closely monitored.
For me, my thyroid didn't like nivo much but recovered. But we stopped after a couple of cycles of ipi+nivo because I was starting to develop colitis. And more importantly it wasn't slowing development of my melanomas.
(not a doctor, not medical advice, just connecting dots, please take citations to a highly competent practitioner in this specific medicine domain such as the oncologist care provider/team of the patient you are advocating for, this is simply due diligence to prevent potential blindspots, we are all just human)
I’m an amateur but have read a bunch about the new targeted therapies, like immunotherapy. Immunotherapy seems to only work in a small percentage of tumors with a lot of mutations. It’s easier to get your immune system to attack those.
There are other targeted therapies depending on the genetic makeup of the tumor.
BRAF, RAS, KRAS, NRAS, HER2, BRCA, …
Maybe start here. There’s an incredible amount to learn.
I actually wrote my thesis on this. Ovarian is very commonly studied for immunotherapy, but there isn't anything out there outside of the clinical research realms. The data is pointing more and more to solid cancers being much less responsive to immunotherapy than blood cancers. Unfortunately, I don't have good news for you here. We are probably 30 years away from having an IT medicine that doctors prescribe regularly. And even then, it will be insanely expensive
The article has a couple paragraphs about the complexity involved in fabrication and how labor intensive it is:
“Maus walked me through some of the steps needed to create CAR-T cells for the trial. We started with the room where the DNA instructions that are added to the T cell’s genome are written. […] We went on to the lentiviral-production room, where technicians create viral vectors carrying this DNA. From there, we moved to the tissue-culture room, where the vector is mixed with normal T cells to create the CAR-T. Finally, we visited the immune-monitoring part of the lab, where lab techs assay blood draws and other samples from patients, looking for proof that the CAR-T cells have made it to their targets.”
“Jennifer Wargo, a professor of genomic medicine at MD Anderson, referred to the cost of immunotherapy treatments as ‘financial toxicity.’ The patent for June’s CAR-T therapy for leukemia is owned by Novartis, and the median cost for the treatment is $620,000. Even if drug companies don’t try to profit from these therapies, the process is inherently labor-intensive: T cells have to be removed from the patient’s own blood, genetically altered, then reinfused. It’s difficult to determine where economies of scale might kick in.”
Half of that second paragraph seems to not belong there. Why rebrand "expensive" as "financial toxicity"? Why is profit bad when companies' losses are fine? It seems very strange.
Yeah, but that opens many more questions than it answers: this $620 000 figure cannot come out of labor intensity alone, as it represents the cost of thousands of work hours (literally a dozen of doctor full time for a month, or at least 50 well paid specialized technicians working for an entire month on each patient treatment) yet the process described in the text doesn't seem to match this level of labor.
This seems like a space ripe for intelligent robotics automation. Detailed, precise and laborious requiring years of not decades of technical expertise.
Biochemical engineering exists as a discipline and focused on “scale up” of production problems like these. Robots are involved, but most of the time the process is modified to a more stable one.
They are many different kind of immunotherapies, not all of them have to be patient specific. For cell or vaccine therapies a lot work is currently done to create "off the shelf" treatment which may ease the issue with car-t treatments.
My condolences... You should consult with their oncologist, but you could ask for Keytruda treatment. You should be aware that the immune response to a late stage cancer that results could also be dangerous, including high fever and delirium... Best wishes to you and your family...
I heard if you go to the edge of our flat earth, take a massive dose of ivermectin, inect yourself with bleach and dose yourself with light 1 billion times stronger than the sun you will be cured of everything.
Though that cure might be death as you fall off the edge and evaporate due to the strength of the light, but, hey your cured right.
This is an off usage of the items described above.
We did! When my oncologist team at UCSC declared my liver mets inoperable, we researched our way to a different group (at Sloan-Kettering) that had success with 75% liver resections and then the two groups worked together. So there is some do your own research that could be valuable - but it’s more along the lines of a second opinion, and there is no magic.
Ivermectin is an anti-parasitic that primarily targets worms and other invertebrates. It blocks an invertebrate-specific receptor, and is not known to have any other significant targets. It's great for that, and worthy of a Nobel prize. But it's not miraculous Jesus nectar.
What the hell kind of response is this? All they did was point out the typical use case and you presume they want people to die? Either you need a serious break from the internet or you're a troll.
You can't point to a single clinical trial that shows the drug has any effect.
If it did, it would literally be a multi-billion dollar windfall for Merck, a major pharma company.
Why would they have not done a trial? Why would Merck hold back?
Off label is absolutely a thing, but not a long-term thing. Ozempic was off label in use for weight loss, but you can be damn sure the second Novo Nordisk discovered the weight loss opportunity, they sunk a ton of money on studies to make it available with a prescription.
I'm pretty sure there's no real study that says any such thing, although I would not be surprised if you could find some garbage pseudoscience saying otherwise.
If there was, your family member's oncologist would have informed your family member of it.
Also, keep in mind that this article, like so many such articles, was probably a paid industry advertisement. I'm assuming by this time, everyone is aware of graham's submarine article.
Maybe it will change cancer treatment forever, but as far as I know, cancer patients still go through some form of surgery, radiation, chemotherapy, etc.
> If there was, your family member's oncologist would have informed your family member of it.
I have no insight into the OP’s case in particular, but this is objectively untrue in a large majority of cases. The percentage of oncologists who stay on top of and recommend clinical trials to their patients is in the single digits. One thing I’ve learned from following Jake Seliger’s excellent blog [0] is that cancer patients are often on their own when it comes to researching and applying to clinical trials.
> One thing I’ve learned from following Jake Seliger’s excellent blog [0] is that cancer patients are often on their own when it comes to researching and applying to clinical trials.
And, IMO, this mostly makes sense. There's very limited spots and eligibility criteria; we can't throw everyone in a trial. Filtering based on who is most motivated to go through the process makes sense.
The opposite, where oncologists enthusiastically convey the news of trials that probably won't work and offer false hope, isn't great.
The whole point of the trial is to get to the point where we know we can recommend this for more people.
1) To your oncologist, this is Tuesday. For you, this is the most important thing in your life.
You can spend WAY more time running things down than any doctor.
2) Medical trials are notoriously bad about being findable.
We have had several articles on HN about this. There are actually businesses that take money to chop through some of the red tape for you.
3) The average reader of HN has a much different skill set than the average doctor.
Certainly, the doctor doesn't have the same ability to crunch through data like programmers do. Nor are they likely as focused.
4) Doctors have a spectrum from excellent to sub par just like all humans.
The treatments are damn near miracles--when they apply. The other problem is that cancer, just like any life form, will mutate over time and generally becomes resistant to the treatment.
My wife has Stage 2(B?) triple negative breast cancer (TNBC). Her treatment regiment includes Keytruda (pembrolizumab) once every 21 days. There was a full trial she was told about that is exploring using pembrolizumab entirely without chemo for TNBC. It's incredible that we might soon have at least one cancer that we might not need chemo to treat.
People are now taking TKI inhibitors as first line treatments. It doesn't really cure you, but given long term stable disease, you could end up with late stage cancer patients who don't need chemo for years.
TKIs are for very rare lung cancers but they're quite effective for late stage cancer patients whom have the right type of tumor mutations.
There are a few de-escalation trials where patients with high amount of lymphocytes in tumor associated stroma don't need to get chemo, even for stage 2 and 3 TNBC
Heh. Do you use cloudflare DNS by any chance? archive.ph site owner doesn't like cloudflare not forwarding certain headers and fake captcha loops anyone using cloudflare dns
Wonderful article. I’m seeing two Nobels awarded for research into immunotherapy. Best of all, immunotherapy probably saved my sister from stage 4 cancer.
In 2009 I received a stem cell transplant for mantle cell lymphoma. After about eight years it was discovered in my stomach and I was on the very expensive drug Imbruvica. That lasted until the fall of 2022 when I crashed. I started the CAR T process in October ‘22 and the transplant was done late March ‘23. It was a long recovery “expect about a year” but I’m now doing well, playing tennis and golf and lots of energy for many activities. I’m lucky. I’ll be 70 in October, male and don’t have any chronic complications.
One of the options for a next trial is from TScan, "A Basket Study of Customized Autologous TCR-T Cell Therapies." https://www.clinicaltrials.gov/study/NCT05973487?term=tscan0.... On the one hand, it looks very promising; on the other hand, lots of promising treatments fail during dose-escalation, first-in-human trials. To my knowledge, the first humans dosed with TScan's TCR-T therapy got it a few months ago.
I got lucky, too, in that a slot for BGB-A3055 with Tislelizumab, an immunotherapy drug and trial, opened up at NEXT Oncology-Dallas: https://clinicaltrials.gov/study/NCT05935098?term=BGB-A3055&.... One challenge, however, is that I received a bispecific antibody called petosemtamab from Sept 2023 to March 2024, then PDL1V (an antibody drug conjugate), and they're considered immunotherapies, so there's a question of whether continuing to pursue immunotherapies makes sense. By now the number of lines of therapy I've gotten make me ineligible for some trials: https://bessstillman.substack.com/p/the-drugs-killing-dying-..., and I've also blown through the more promising drugs for what is a difficult-to-treat cancer type.
It took just five years to get from their first promising results to FDA approval
This sentence is insane. "Just?" It should be happening in months, not years. These are people with fatal diagnoses. Having the FDA hold up therapies like this is criminal.
It is comprised of very knowledgeble patients (like you) that are very actively involved in their treatment. I have been researching a lot of these resources due to my mother's condition, so feel free to let me know if you'd like to do some knowledge sharing.
Thank you for this, I have an extremely rare subtype of sarcoma and it’s been tough to a) find any research about it specifically and b) find high-quality resources about state of the art treatments and interventions that aren’t like, Facebook groups where people post wacky articles about homeopathic stuff or whatever.
Would love to hear about any more recommendations you or OP might have for good forums etc.
And they're slow to avoid approving dangerous treatments, but that's absurd since the patients are already dying. The risk of not approving needs to be taken into account.
There's another difficulty: to get the numbers needed to validate that a drug works, an equivalent large number of people need to enter the trial in the non-treatment arm, typically foregoing other treatment. Many people refuse to join trials for this reason, and that contributes to the delays in completing trials with sufficient power.
I get the why we in a ideal experiment would like to have a control group but these are human livesvnot rats in lab, so why does every trial need a new control group? If we already know what a baseline untreated group looks like why cant we just compare new drug test to a know control from previous trials thus reducing the need for more dying?
> If we already know what a baseline untreated group looks like
There isn't really a single baseline untreated group. For a comparison between groups to be valid, all groups must be obtained by unbiased random sampling of the same population. In a clinical trial, that population is the patients served by the participating clinical center. Patient characteristics differ by time and place.
You can try to retrospectively construct a control group using a case control study design, but then you're getting to pick what control group to use, so the results are less reliable (more opportunity for human bias).
Unless a treatment is both miraculous in effect and works for everyone, it's hard to figure out if it works.
> Unless a treatment is both miraculous in effect and works for everyone, it's hard to figure out if it works.
Yup. It's worth noting that "all or none" evidence is still considered category 1 evidence on many scales. (If you treat a group where all would be expected to die, and some survive... or a group where many would be expected to die, and all survive). It's only valid for the most dramatic effects, but you don't need randomization. During a safety trial you might come up with "all or none" evidence if your effect is strong enough.
But otherwise, you're going to need to compare the treatment to something else. There's no ability to magically draw the exact same population from some earlier trial.
Okay - but what happens when your doctor is getting bribed to say you're dying to get you to try expensive experimental drugs with no evidence of working?
In the best case, you end up bankrupt. In the worst case, you end up bankrupt and dead.
This is only a slightly more extreme version of the Sackler problem.
Deregulation sounds great if you believe everyone is logical and has accurate information to make decisions for themselves.
I'm sure there must be a much better solution than what we've got for the people who are dying.
But I doubt the answer is to just let drug companies sell anything to anyone and make Medicare pay for it.
> what happens when your doctor is getting bribed to say you're dying
We pay people to figure out that this is happening (the police), then we prosecute the doctor and if that is what happened we hit the doctor with the full force of law, and they never walk as a free person ever. We also do the same thing with those who bribed the doctor and they also never walk as a free person again.
What you describe already crosses into criminal conduct. We do not need FDA approval process to prosecute it. In fact I’m not sure how the FDA approval of the drug prevents it in your opinion.
This is an understated reality of the situation. Patients are already able to receive treatments with experimental drugs. It's the "forcing medicare and insurance companies to pay for it" part that's not a good idea, especially considering that most of these treatments may be worse than the current ones.
Treatments should have solid evidence they improve overall survival when compared against the best treatments available today, and unfortunately too many studies either aren't aiming at revealing that info, and/or are comparing against inferior treatment options.
No, medicare shouldn't pay for it, but it should be completely legal for patients to take whatever drug or procedure they want, and for startups to provide those drugs and services. The medical industry in the United States is a gate kept, over-credentialed, bureaucratic mess.
>Okay - but what happens when your doctor is getting bribed to say you're dying to get you to try expensive experimental drugs with no evidence of working?
You might as well be saying "what happens if some improbable risk of X exists in this very unusual context". That's existence, especially in complex and fraught situations. You can't completely regulate it away and especially not if the regulations themselves can cause much greater harm in the much, much more probable situation of patients who are already dying being willing, as human beings with autonomy, to try something personally risky.
Deregulation shouldn't and doesn't depend on the world being one of everyone being logical and always having accurate information. Those two conditions don't exist in the human world at all times, period. Furthermore, the exact same problem applies to regulators and legislators as well, whose poorly reasoned decisions can cause broad harm too. Making a lack of perfect information and attendant risk into the key basis for onerous regulations is bad reasoning with sometimes grotesque consequences, particularly in situations where the regulations are known to cause suffering to people in extremes (as is the case with denying risky treatments to those who are in any case at death's door..
Also, very basic but obvious: anyone in the extreme situation of having a doctor suggest a very experimental treatment can go and get a second opinion from another doctor.
This isn't an improbable situation. They literally mentioned the Sackler family, which is a real world example of corruption is medicine of the type they're talking about.
The Sackler's company bribed and "financially encouraged" doctors into over-prescribing opioids to millions of people who weren't necessarily mortally ill and with lesser individual risk of those people dying from these prescriptions.
It's a largely different clinical and treatment situation from specific cases in which people are genuinely, terminally ill and a genuine though dangerous treatment option exists that might save their very lives. The Sackler case is a valid and powerful criticism of medical/pharma dishonesty, but it's extremely unfair to desperate patients that it be used to prevent them from having the autonomy over their own bodies and literal chance at life that they might legally be allowed to pursue.
Also worth noting that even in the market for prescription opioids, the Sackler case has more recently been used to wrongfully prevent patients who are in deep pain from obtaining a drug that provides needed relief despite its addiction dangers. So even here, obsessions about malpractice are hurting legitimate use.
>Okay - but what happens when your doctor is getting bribed to say you're dying to get you to try expensive experimental drugs with no evidence of working?
If it's experimental it shouldn't be expensive. In fact it probably should be free until it's approved as effective. So with that out of the way, what are your other objections? (I am genuinely interested)
I think it's better to understand why a pharmacist or oncologist will not prescribe medicine that could kill a patient, due to either the Hippocratic oath or through malpractice.
Most competent doctors will explain WHY they cannot prescribe something, and it's usually more specific such as "your liver is failing and this drug will accelerate that process, perhaps we can find something else".
So, here's the thing-- drugmakers can get compassionate use exceptions.
But the pharmaceutical companies really want to prove that their drugs work. If their drug doesn't work, nothing is lost or gained by having people try it.
If the drug does work, but the study of it is confounded by giving it to people in a haphazard way, such that we don't know if it works--- more people suffer.
It sucks, but most things don't work. Occasionally people are screwed by not being able to get into a trial for something that might have saved them or lengthened their life. But much more often they're spared false hope and suffering from side effects, and we end up with trials that we can trust.
Yes, I do mean that FDA is worried about getting bad PR.
The incentives of the FDA are unfortunate. If they don't approve a drug that would have saved 100k people there is no bad press for those 100k deaths. But if they approve a drug that kills 1k people there is a lot of bad press.
So they have strong incentives to not approve anything unless absolutely needed.
Thanks you for posting your story in details, as someone who's wife had oligometastasis on her spine from breast cancer (nothing compared to you, but incredibly stressful nonetheless) you give me hope that when Ribociclib stop working, M.A.I.D. is not the next step.
I wish you all the best in your trial, I wish that it's effective and may the side effects spare you !
I'm sorry to hear that. My mother in law has stage 4 lung cancer. She has some mutations for which there are targeted treatments, but the cancer mutated in one area. Fortunately there were more treatments for that mutation, but she's had some significant side effects from that one. There's potential clinical trials but there's lots of criteria, some may not even be near by: a lot of noise, not much signal. Every quarter's CT scans might tell us medication has stopped working, and she needs to start chemo (with the side effects/lower QOL).
It's just all really hard. I try to keep present when spending time with her.
It's not possible to evaluate efficacy any faster than that.
I suppose we could just let everything on the market and see what happens, but it would still take years to accumulate efficacy data. So you'd just be left with preclinical data which isn't that useful (if it was the failure rate of oncology clinical trials wouldn't be so high)
My father is in his mid 70's with bladder cancer and is now going down the immunotherapy path completely aware that this is still essentially a new thing with bugs to be figured out.
At this point the best we are hoping for is a few more years but understand if it doesn't work out. It is still wild to see where we are going. While I am skeptical of many technological claims that get thrown around nowadays, medical advances are still plodding along wonderfully. Even if at times it can be two steps forward, one step back.
In 2009 I received a stem cell transplant for mantle cell lymphoma. After about eight years it was discovered in my stomach and I was on the very expensive drug Imbruvica. That lasted until the fall of 2022 when I crashed. I started the CAR T process in October ‘22 and the transplant was done late March ‘23. It was a long recovery “expect about a year” but I’m now doing well, playing tennis and golf and lots of energy for many activities. I’m lucky. I’ll be 70 in October, male and don’t have any chronic complications.
Can someone explain why it's taken so long to go from the success CAR-T had with non solid tumors, to getting an immunotherapy that indeed is effective against solid tumors?
"Success" for CAR-T is hazy, as many participants died from unrealized side effects, including new cancers.
>> The FDA indicated that patients and participants in clinical trials receiving CAR T-cell therapy should be monitored life-long for secondary malignancies.
>> Although CAR T-cells directed toward the HER2-expressing tumors have been extensively studied in clinical trials, safety concerns have emerged following the death of a CRC patient who received 1×1010 third-generation HER2-CAR T-cells.
Immunotherapy is not some wonder drugs. It's been around for some time as far as cutting edge is concerned, obviously quite new compared to the 1980s chemo revolution. By "been around by quite some time" I mean there are quite a number of immunotherapy drugs, and follow-on "me-too" competitors, and lots of 2nd and 3rd and 4th generation drugs. THe only reason it may seem brand spanking new to you, is dunning kruger effect.
It's quite expensive and doesn't always work. We have predictors of whether it works well or not, but nothing has stuck. It's very hard because cancer is hard and immune system is hard, and this is both.
THis whole thing about "immunotherapy is new and has bugs to figure out" is half true, but hell, if "bugs" mean that it doesn't work, the whole reason immunotherapy exists is because the things that came before also had these "bugs" ie people dying.
Every cancer is different. Every cancer is different in every different person. THere are common trends, common genes, common themes, absolutely, but every cancer is different just like every person every face is different. At best you can get a common drug targeting common genes and common themes, just like you could target people with brown hair, but if you happened to have blonde hair you're out of luck until they cook up a solution for that. This is the nature of cancer and where there is no universal cure.
also this board is pretty dang comp sci heavy, and comp sci and physics the instinct is 1000% dunning kruger within the realm of biology or other extraneous inferior-appearing fields. BIology is the most rabbit hole ridden field. The rabbit holes have rabbit holes, and they have their own rabbit holes. You're thinking about cancer but maybe it relates to some evolutionary resistance that was necessary 200 million years ago, and that relates to a biochemical pathway protein binding side. It's a polymath's wet dream really. So it's important not to hand wave or give airs of understanding it. I've been specializing in the area for many years and I can say that nobody understands it really, other than that it works sometimes with some various correlates of when it works. Like most parts of bio, people will specialize in one compenent of the system or one pathway, not the system as a whole. People who claim to capture the system as a whole kinda do interesting things but they don't have the detailed big picture, more like various correlates that are frought with confounders
As somebody who unfortunately has a Stage IV diagnosis I have been researching mRNA and there have been promising results such as the MSK pancreatic study below, but still much to be ironed out — they had half the participants get a response but the other half nothing, even though each treatment was individually targeted and customized. They are doing a larger study now to try to see what other factors may be at play.
mRNA vaccines need a target, and if there is a target, there are several approaches that already do this (anti-body drug conjugates), and sometimes work, sometimes doesn't.
I don't think anybody thinks it "didn't work out". It's still actively ongoing:
> Cancer is a for-profit business model where the owners of capital benefit from sickness.
Sure, I'm with you here.
> Curing cancer was never the goal.
You're starting to lose me. Your statement might be correct for the most actuarial-brained monsters at the top of the executive foodchain but I think the research scientists and doctors would disagree with you.
> Finding out how to give people cancer and treat it was.
And here I think you've veered from legitimate criticism of the for-profit healtcare system into some serious whack conspiracy territory.
It also assumes the most-actuarial-brained monsters aren't worried about any competition from other monsters that can take their patients away with a better cure.
While that's possible--ensuring competition is an ongoing issue in the American economy--it's still one more bad-star that has to align to get a real disaster*.
*Yes, I know there's etymological repetition there and I like it.
You really need to learn about the burden of proof, since you'd (hopefully) be able to figure out that in this case, the burden of proof is on you to prove what you're saying is accurate. HN isn't a place for hand waving arguments where your only supporting proof is "logic".
The truth of the premises do not require empirical evidence as you seem to require, they require the premises be true.
- Oncology is a for-profit business
- Curing customers reduces profits
- Treating customers increases profits
- Curing cancer is bad for business
Do you understand how logic works or is your brain fried by "where's the study bro..." Give me a break, man. Do you have any interest in sincerity or is your job at stake otherwise?
No one has the ability to make logical deductions about the world in the manner you've done in this thread.
Cancer is just a tough nut to crack. While a blanket cure remains a pipe dream, there is lots of promising research and life expectencies keep going up.
I'm curious, what do you think the difference is between a "cure" and a "treatment"? I imagine when you think cure you think about a pill that you take once and it uncancers you instantly. But wouldn't that also be a treatment? I get that you're criticizing the medical industry for financially draining patients, but what would stop someone from charging any exorbitant price for a pill that instantly cures your cancer?
A cure is something that solves a health condition 100% of the time. A treatment is a prolonged procedure with only a chance of success. One is a profit generating machine, the other loses customers.
You know, a cure - like what they pretended the vaccine was that somehow was forced through the almost impossible system of medical approvals that has stalled real cancer research for decades.
It's rather sick isn't it? Especially when curing cancer as a business benefits from an increase in technology which in turn is a producing of endless chemicals that end up in our drinking water and food and air.
My sources are leading immuno-oncology pharma R&D teams and oncology VCs as recently as this week. I am launching an immuno-oncology therapeutics company.
My brother committed suicide last February. His death was profitable for the funeral home. Anyone who manipulates a 90-year-old grieving mother deserves burn in several circles of hell.
I follow Vinay Prasad MD (https://www.youtube.com/@vprasadmdmph), who does a lot of research related to medical studies and methodology, lots of cancer related ones as that's an area where he works.
You'd be surprised at the number of cancer treatment studies that are deeply flawed:
- Positive effects may have a low confidence due to small sample size, the joke is that if you can fit the laser pointer between the lines it's considered a success. Cancer is a very tough disease and sometimes positive results are due to noise in the dataset.
- Some studies don't consider overall survival (important because you might not die of cancer but you might die sooner from a side effect like Parkinson's caused by the treatment). See mammograms and colonoscopies for treatments that look like they are almost entirely ineffective.
- Don't compare against the standard of care (its easier to show positive results if you aren't using the best treatments available)
- Allow for self selection (the treatment isn't blind or double blind and people drop out of the control group, skewing the results)
Imo he's an excellent source of the latest data driven results related to cancer and other treatments.
I believe Mammograms and Colonoscopies are diagnostic techniques not treatments per se.
It is possible you are conflating the rise of over-diagnosis, and mis-diagnosis from improvements in imaging, and the consequent rise in colonoscopies and removal of polyps.
