[HN Gopher] Cancer expert given experimental treatments for incu...
___________________________________________________________________
Cancer expert given experimental treatments for incurable brain
tumour
Author : femto
Score : 158 points
Date : 2023-09-20 14:27 UTC (8 hours ago)
(HTM) web link (www.abc.net.au)
(TXT) w3m dump (www.abc.net.au)
| Empact wrote:
| A great example of why to support "Right to Try" laws. Every
| terminal patient could choose to contribute to our understanding
| of treatment while also possibly improving their outcome. Through
| self-experimentation we could dramatically increase the pace of
| progress.
|
| https://en.wikipedia.org/wiki/Right-to-try_law
| sharkweek wrote:
| A friend of mine was diagnosed as terminal in his mid 20s (he
| had a giant mole underneath one of his fingernails that he
| never got checked out and it was later discovered to be
| aggressive melanoma that spread all over the place before they
| were able to amputate the finger).
|
| He was given 12-18 months, so was able to get into a string of
| experimental treatments. He's the first patient in the world to
| have tried a few different treatments, and... the best part,
| he's still alive today turning 40 next year. He still has
| cancer, and it'll probably get the best of him at some point,
| but he's stoked to have made it 15 YEARS past his initial
| terminal diagnosis.
|
| Obviously experimental trials can go the other way too, but it
| was a risk he was more than willing to take.
| LorenPechtel wrote:
| I'd like to see a limited version that weeds out anything
| discredited or without a reasonable basis to think it will
| work.
| dublinben wrote:
| There is a long and well-documented history of self-
| experimentation in medical science.[0]
|
| [0] https://en.wikipedia.org/wiki/Self-
| experimentation_in_medici...
| BerislavLopac wrote:
| That is something I don't understand: how is experimental
| treatment on terminal patiens not allowed, but something like
| this is: https://arstechnica.com/health/2023/09/musks-
| neuralink-seeks...
| AlbertCory wrote:
| I do sympathize. However, my old nextdoor neighbor had cancer,
| and he lectured me on how homeopathic medicines could get rid
| of all the "toxins" in our bodies. Naturally, he's dead now.
|
| I think the problem is Scale. These experimental treatments are
| only available in small quantities. There are many, many people
| dying of cancer. Are they supposed to open factories for drugs
| that aren't even developed yet?
| junon wrote:
| Homeopathy needs to be banned. It's pseudoscience at best, a
| cult at worst.
| AlbertCory wrote:
| True. I also know someone who went down to Mexico for
| treatment, unfortunately.
| pnut wrote:
| Pure Mexican water, what could possibly go wrong....
| zdragnar wrote:
| People with nothing to lose make fantastic targets for snake
| oil fraud.
|
| Principally, I agree with right to try, but I'm not sure what
| appropriate safeguards would look like.
| [deleted]
| DennisP wrote:
| Everybody's terrified of the snake oil days, and almost
| nobody considers the way things were several decades ago,
| when cancer researchers were allowed to try things on
| patients without government approval, and we made much faster
| progress than we did after the FDA clamped down.
|
| For details, see the book _The Death of Cancer_ by Vincent
| DeVita, director of the Yale Cancer Center and former
| director of the National Cancer Institute.
| magicalist wrote:
| For context, though, this was in the early 1960s when
| basically everything was low hanging fruit, so let's not
| assume the only variable at work is how much the FDA was
| clamping down.
|
| https://scienceblogs.com/insolence/2015/12/18/vincent-
| devita... is a good take on the work (remember when people
| used to blog?), and includes some good examples in the same
| stream of cancer treatment history where it's clearer that
| cancer researchers trying things on patients without
| government approval is not clearly necessary and certainly
| not sufficient for advancing the state of clinical
| practice.
|
| Super interesting history.
| DennisP wrote:
| The fruit hung lower back then but now we have taller
| ladders. We've learned a lot since the 1960s.
|
| That blog entry is interesting but it's based on an
| article Malcom Gladwell wrote about DeVita's book; the
| author says he hadn't read the book himself. It does make
| some good points. I feel there ought to be a middle
| ground, where physicians are professionally expected to
| base decisions on good science (rather than "our patients
| would vomit on the way home if we gave them the effective
| dose"), but also we don't have government officials
| prohibiting terminal patients from getting treatments
| that oncologists think could help them.
| cobbzilla wrote:
| Let's trade: I'll take your aversion to snake oil salesmen,
| and you can have my cancer. Deal?
| melling wrote:
| How about we simply fund more real medical research so we
| can cure all those diseases that you might eventually get?
| ogogmad wrote:
| How does throwing more money at the problem help? How you
| spend it matters. Otherwise you're just setting it on
| fire.
| melling wrote:
| No one said "throw money at it mindlessly". I said "fund
| more real medical research"
|
| I'm a little busy to explain it for the 100th time. Can
| you do a little research instead of putting words in my
| mouth?
|
| There was a time when scientists thought HIV would never
| be curable. https://abcnews.go.com/amp/Health/5th-person-
| confirmed-cured...
| [deleted]
| ballenf wrote:
| - Registration of alternative treatments with contact info
| (registered business address, etc.). Prevent fly-by-night
| hucksters from hiding in the dark.
|
| - Require disclosure of ingredients
|
| - Require disclosure of tests for contaminants
|
| - Require disclosure of adverse advents
|
| - Have a standardized form for all of the above. Kind of a
| "truth-in-lending" document but for alternative treatments.
|
| - Allow licensed doctors more freedom to administer
| alternative treatments without fear of license loss, so long
| as patient consent is received. This could be allow weeding
| out of some of the actual snake oil, but would add cost.
| zaptrem wrote:
| I'd suggest adding:
|
| - Cannot charge patient for treatment.
|
| That way nobody can actually sell snake oil.
| finite_depth wrote:
| [dead]
| hef19898 wrote:
| And apply medical trial standards. And everyone benefits,
| evem treatment isn't successful there are research
| results to work with.
| colordrops wrote:
| You can get rid of "with nothing to lose" and your statement
| would still be accurate. Sure, do the best you can to protect
| people, but give them the agency to make their own choices.
| nazka wrote:
| I guess by over regulating it on both sides. Companies
| shouldn't be able to use weird methods and ethics with these
| laws. And we can have the right to try but we will have to go
| through a lot of process to really make it happen. Not just
| sign here and we are done. Bureaucracy "nightmare" can be a
| good filter here for once.
| elzbardico wrote:
| An important societal consideration, but for those patients
| we need to remember that at the end of the day, they still
| have nothing to loose.
|
| Let's improve law enforcement and punishment for Snake Oil
| sellers and presume good faith in all other instances.
| thegrizzlyking wrote:
| Many forms of snake oil(herbal supplements etc) is already
| allowed. Real medicine is what is being denied.
| sneak wrote:
| Why are safeguards necessary? They're going to die anyway,
| letting them try literal snake oil isn't hurting anything.
|
| Let people make decisions for their own bodies.
| pc86 wrote:
| But it is enriching snake oil salesman, which lets them
| spend more money to convince people who _aren 't_ dying to
| spend money on their bullshit.
|
| Look at the bigger picture - it doesn't matter if it's just
| this person doing whatever they want with their body if
| it's a net negative for society as a whole. Society
| shouldn't accept any externality just because someone
| thinks cuckoo fraud "science" will work when it won't.
| Johnny555 wrote:
| _Why are safeguards necessary? They 're going to die
| anyway, letting them try literal snake oil isn't hurting
| anything._
|
| Unless they were so enamored with the snake oil treatment
| that they ignored a legitimate treatment that have been
| effective.
| flir wrote:
| If there's a legitimate effective treatment available,
| they're no longer terminal cases, are they?
|
| I suppose you could hypothesize someone refusing
| treatment until its too late _then_ trying the snake
| oil...
| Johnny555 wrote:
| This article is about a doctor with incurable cancer who
| was able to find a experimental treatment that so far
| seems to be helping. If instead he had been focusing on
| magic magnetic bracelets with no hope of helping, he may
| have not have tried this science based treatment.
| [deleted]
| janpieterz wrote:
| Fair, but there's already a lot of medical related
| alternative treatments and activities that cause people to
| give up on more established practices and causes real harm.
| Currently the laws allow for the government to stop a lot
| of that. I don't like it, but don't know a solution that
| would work, people are extremely vulnerable in these
| situations.
| eggy wrote:
| The established practice of encouraging blanket COVID
| boosters to otherwise healthy five-year-olds probably
| tilts more towards harm than the benefit side of things.
| And the boosters are not like the flu shot. They are for
| something that has already been circulating. The seasonal
| flu shot is a projection of what strain(s) may circulate
| come flu season. And COVID is year-round.
|
| Prosecute snake oil salespeople, and allow people agency
| to make their own decisions.
| janpieterz wrote:
| Where's that boundary between snake oil and "freedom of
| choice, but alternative" though? That's the tough part
| here right? It's subjective, not in it's ultimate truth
| but in it's experience by everyone.
| influx wrote:
| Their body, their choice.
|
| Steve Jobs probably killed himself by his medical choices
| but that's what he wanted to do.
|
| Should we have strapped him in and forced him to get
| conventional medicine?
| magicalist wrote:
| > _Steve Jobs probably killed himself by his medical
| choices but that's what he wanted to do. Should we have
| strapped him in and forced him to get conventional
| medicine?_
|
| No, but we could have regulated transparency of
| "nontraditional medicine" and any fraudulent claims the
| people he was listening to were making.
| sneak wrote:
| Walgreens sells homeopathic products on the shelf right
| next to real medicine.
|
| The NHS and German public health systems pay public money
| for homeopathic fake remedies.
|
| (To their credit the NHS has reduced the practice.)
| astrange wrote:
| This can be effective; a lot of medicines have
| experimental evidence saying they don't work, because
| they aren't better than placebo, but the reason for this
| is that the placebo works too.
| magicalist wrote:
| Or they can kill your baby:
| https://arstechnica.com/science/2017/01/fda-confirms-
| toxicit...
| KaiserPro wrote:
| I'm going to take this as a naive question and answer it
| with an example.
|
| Andrew Wakefield et al published a paper based on a small
| number of participants. they effectively preyed upon
| desperate parents to assert that MMR caused autism.
| (https://pubmed.ncbi.nlm.nih.gov/9500320/)
|
| When people are desperate, its very easy to get them to do
| stuff thats very bad for them.
|
| The problem is that in some cases that "very bad" thing
| might actually be quite good.
|
| For example adding chlorine to water, on the face of it, is
| a fucking stupid idea. However along with proper
| sewage/sanitation, its responsible for most of the extended
| lifespan we enjoy in the west.
|
| It is a grey area between doing good, through taking
| informed risks, and using shortcuts that require desperate
| people to take extra ordinary risks.
|
| For example the reason why that vaccine was a massive risk
| is because the immune response could have just attacked the
| brain tissue as well as the tumour. And as it is a learned
| immune response, its super hard to stop it.
| sneak wrote:
| We are discussing specifically in the context of people
| who are less than a year from death anyway. Risks are
| irrelevant at that point if the person in question wants
| to try them.
|
| All of your examples seem to be irrelevant in that
| context.
| hotpotamus wrote:
| Why not just kill them and take their money if they're
| going to die anyway? Then you don't even have to squeeze
| the oil out of snakes.
| avery17 wrote:
| Require the treatment be free for the patient. Problem
| solved.
| RandomLensman wrote:
| Who will then pay? Doctors and hospitals eating all the
| costs doesn't seem likeky. It is not just the drug, but
| administering it, treating side effects, monitoring etc.
| danielmarkbruce wrote:
| For experimental treatments, it's very likely. It happens
| today in many clinical trials.
| RandomLensman wrote:
| Yes, as part of trials but for self-selected medication
| by patients - not sure. The funding sources for trials
| wouldn't necessarily just extend there.
| fzeroracer wrote:
| Well, because often said snake oil can be quite toxic to
| your body and result in a _lot_ of needless suffering. To
| be honest, most people know that if 'right to try' became
| a thing it would need to be followed up with 'you waive all
| rights to a lawsuit' because the moment an experimental
| treatment resulted in an extremely painful and accelerated
| death suddenly all of the people being advocates for right
| to try would sue them out of business.
|
| In this scenario, it's a cancer expert well aware that
| these treatments could possibly result in the above and is
| willing to do so anyways.
| [deleted]
| [deleted]
| NoMoreNicksLeft wrote:
| > People with nothing to lose make fantastic targets for
| snake oil fraud.
|
| How much of that is because there's nothing else offered to
| them, other than snake oil and "have fun dying soon"?
|
| If their entire world is full of hucksters and con men, how
| can it possibly make things worse to open it up to legitimate
| research?
| tomsto wrote:
| Agree. My mother had a very serious form of cancer (she's
| luckily responded well to treatment) but she was
| overwhelmed by con men promising hope. Adding legitimate
| research makes this mix less toxic, not more
| flir wrote:
| Get at least _n_ medical professionals to sign off on it?
| geff82 wrote:
| The reason I got to know my grandmother and that she lived
| until I was 26 is that in the 70s she took part in such a trial
| when she was terminally ill.
| giantg2 wrote:
| I don't think it takes being a cancer researcher to know that an
| experimental treatment is riskier and could actually shorten your
| life. I get that some people need a lot of guidance/counseling to
| understand what the risks might be, but there are plenty of
| people capable of understanding the risks. Even for routine
| procedures people are rarely informed of the risks. Sure, they
| might get an Epic printout, but most skip or skim it and fhe
| doctor doesn't explain everything. Look at how many women are
| later surprised that the pill could increase their risk for
| breast cancer, gliomas, etc because it's colloquially known as
| being low risk with the benefit of not being pregnant. If you
| start reading off all the risks and truly getting people to
| conceptualize the probabilities, it would take too long and scare
| too many away.
|
| If I'm terminal, hand me a packet and let me sign up for the
| experiment. If not, I might be buying/renting/borrowing some lab
| equipment, probably to an even bigger self risk (radioactive boy
| scout haha).
| bloaf wrote:
| I read a post a while back by a guy who claimed to be managing
| a long term condition he had via homemade blood monitoring and
| pills containing something that earlier trials had shown were
| effective at managing the condition (I don't think it was
| diabetes, but it had a similar flavor to treating diabetes with
| something other than insulin.)
|
| He explained that he eventually went blind in one eye because
| he had miscalculated the dose of something in his pill and
| eventually OD'd on it.
|
| My reaction to the story was: "This is fantastic. More people
| should be doing this." (Obviously not the going blind part.)
|
| What I do want is for it to be more widely recognized that we
| _have in fact_ reached a point where it is possible for people
| to make their own blood tests, identify promising treatments in
| the scientific literature, and make their own medicine. I can
| 't help but think that if that guy had been sharing his
| treatment with a like-minded community, someone else may have
| caught his dosing error.
| mnw21cam wrote:
| Regarding treating diabetes with something other than
| insulin, it should be pointed out that there are several
| types of diabetes, and not all of them should be treated with
| insulin.
|
| Type 2 diabetes for instance should be treated with fasting
| in most cases. It's not a popular treatment, probably because
| doctors tend to prefer to push pills down your throat, and
| also because fasting is scary, but it is way more effective
| than anything else out there.
| beefman wrote:
| > that there is no blood brain barrier and historically
| conceptualised
|
| _as_ historically conceptualized?
| AtlasBarfed wrote:
| IMO this is an example of how cancer needs to be attacked. We
| need an army, not a pharmaceutical company.
|
| We need an army of biology lab workers that can do these bespoke
| attacks, perhaps enabled by software-generated compounds and
| formulae. I really don't want to say AI, but maybe even AI.
|
| Once we get the manual labor approach largely solved, then
| iterate on efficiencies.
|
| Immunotherapies seem to be "the answer". The issue is that they
| are a very complicated answer, to a complicated disease (cancer
| is actually thousands of genetic damage diseases under one
| moniker).
| dpeckett wrote:
| Interview with Professor Scolyer and his colleague Professor
| Georgina Long https://www.youtube.com/watch?v=blPsZ1eTxzE
| gwbas1c wrote:
| One anecdote about experimental cancer treatment: Expect the
| unexpected.
|
| My mother had uterine cancer. As it progressed, she entered a
| study and took experimental drugs.
|
| The cancer spread to her spine, which is highly unusual for
| uterine cancer. Because it's unusual, her oncologist went into
| denial and didn't treat her appropriately.
|
| I remember listening to the oncologist say "it can't be spinal
| cancer, that doesn't happen" while I could see that the
| infectious disease expert was humoring the oncologist and
| checking my mom for spinal meningitis.
| lainga wrote:
| What is to be done about the strong individualistic element -
| some might say liability - among doctors in Western medical
| systems?
| fidotron wrote:
| AI, unironically.
| giantg2 wrote:
| Exactly - deviate from the established protocol and you open
| up legal risks, possibly get fired from your practice (since
| most are big companies now and not individuals or partners),
| etc.
| gwbas1c wrote:
| The irony was that the infectious disease expert checking my
| mom was very Chinese, both in appearance and accent.
|
| If she (infectious disease expert) had the "western" "strong
| individualistic element," she might have pulled the
| oncologist aside and said, "look..." (If she hadn't already
| done that, but was merely seeing my mom so her oncologist
| could save face.)
|
| The real issue is mindset and maturity. These issues happen
| in all cultures.
| lainga wrote:
| Alright, point taken...
| [deleted]
| borbulon wrote:
| I'm sorry to hear about your mother. I have cancer, and I've
| definitely gotten a few "we've never seen _x_ happen with _y_
| drug, " but they've always been ready to accept that I'm just
| in the 0.00001 percentile or whatever that this happens to.
| They've never tried to treat me for something else, they
| believed that what was happening, was happening.
| zeku wrote:
| That's amazing, I hope this works as it seems promising!
| intrasight wrote:
| Bespoke, patient-specific, genomic treatments: they'll ask how
| deep are your pockets. I am reminded of Lance Armstrong beating
| cancer.
| stvltvs wrote:
| Lance had testicular cancer which is highly treatable, but I
| take your point in the general case.
| stephen_g wrote:
| This story is Australia, pretty sure we have fairly good
| subsidised access to even these kind of things (once they've
| gone through all the trials). I know a few people who have had
| targeted treatments for cancer who aren't incredibly well off,
| never did ask about the cost but I'm pretty sure they wouldn't
| have the means to access it in the US system.
| desireco42 wrote:
| He is a doctor and he gets the life saving treatment... the
| plebes can die in pain and up till recently they didn't even
| being allowed medical marihuana...
|
| I am really happy for the guy, but like others mentioned,
| everyone should be able to choose what they want to do...
|
| Steve Jobs died because he refused treatment... so let us
| commoners have the same luxury
| cancerhacker wrote:
| Steve Jobs died because he initially refused rational
| treatment, then he aggressively pursued conventional treatment
| (liver transplant). The initial refusal thing is common - in my
| case, I refused to believe the symptoms (bloody stool) I had
| were something that needed to be dealt with.
|
| In both our cases, neither of us had any qualifications to make
| a determination of treatment, and doing our own research
| wouldn't have helped. (I'm sure the Big Turmeric Cartel would
| have something to chime in with (one of the common "it'll cure
| you" paths.)
| bell-cot wrote:
| > He is a doctor and he gets the ... plebes can die in pain ...
|
| Back in low-drama reality - "experimental" medical treatments
| have a very long, ugly history of failing to work, or of making
| the patient's condition even worse. And "the researchers were
| really _trying_ to help the people... " has often been untrue.
| adamredwoods wrote:
| >> But the pair said it was too early to say whether those
| scientific results mean a better prognosis for Professor Scolyer.
|
| He had surgery and they are not sure if the immunotherapy drug
| will work. Best of luck to him.
| dpeckett wrote:
| Thus continuing the long tradition of Australian physicians
| experimenting on themselves
| https://en.wikipedia.org/wiki/Barry_Marshall#Career_and_rese...
| PaulHoule wrote:
| I usually downvote (in my RSS reader) articles about cancer
| because there are just so many of them but YOShInOn has lately
| shown me a lot of articles about breakthroughs in glioblastoma, I
| suspect also that one.
|
| It's a tough nut to crack, my thesis advisor passed away from
| glioblastoma at a relatively young age.
| DrAwdeOccarim wrote:
| I can't seem to find exactly what kind of treatment he received.
| Does anyone know the actual scientific description of it?
| kogus wrote:
| This part confuses me: Twelve days after he was
| given the immunotherapy drugs, Professor Scolyer had
| surgery to have the bulk of his tumour removed.
|
| If they were able to remove the tumor, was it incurable?
|
| Afterwards, they were able to analyze the tissue in the (now
| removed) tumor to establish that the immunotherapy drug had
| performed far above anyone's expectations.
|
| That is fantastic news, but it is not my impression from the
| article that the drug _enabled_ the removal. So by "incurable"
| did they mean "only treatable by surgery", or am I missing
| something?
| mcbain wrote:
| Some context is that Profs Scolyer and Long have recently had a
| lot of success with immunotherapy for melanoma used as a neo-
| adjuvant - that is, before surgery. Start the patient on immuno
| asap and then excise so the immune system is triggered to
| potentially clean up anything that has spread.
| tominated wrote:
| Cancerous tumours will continue to grow if any cancer cells are
| left - surgery is usually necessary but won't cure it.
| Glioblastoma are some of the most aggressive brain tumours on
| top of that.
| plorg wrote:
| What's weird about this article (and maybe about its reception
| on HN, although it does further some popular narratives on this
| site) is that if you have ever known someone diagnosed with a
| glioblastoma you will be familiar with some very positive
| initial results after surgery, followed within a year by
| recurrence, 2 or three other experimental treatments, and very
| likely death within 2-3 years. That's the thing that is
| incurable, and while I hope for the best for the doctor,
| there's nothing about this article that suggests something
| substantially different in outcome from the immunotherapy. I
| would think we would have to wait maybe a year to really see
| anything outside the prevailing expectations - he was diagnosed
| in June.
| isk517 wrote:
| I didn't get the impression that they were pushing the
| immunotherapy like a miracle cure, just that when the tutor
| was removed and biopsied they found evidence that it had done
| something when the traditional belief seems to be that the
| blood-brain barrier would have render it useless.
| NoMoreNicksLeft wrote:
| > If they were able to remove the tumor, was it incurable?
|
| I think with the glioblastomas, you remove 99% of it, and the
| 1% of tissue that can't be scalpeled out just regrows the whole
| thing. But if I'm wrong, then the other possibility is that the
| 1% metastasizes. Either way.
| kogus wrote:
| OK, so is it like this:
|
| BEFORE: We remove 99%, the other 1% metastasizes, you live
| for six months
|
| AFTER: We remove 99%, this medicine stops the other 1% in its
| tracks, you live out the course of your life
|
| ?
| [deleted]
| KaiserPro wrote:
| its more:
|
| BEFORE: we remove 99% by surgery, try and get the rest by
| radiation. outcome poor.
|
| AFTER: we have proved that the immune system is attacking
| the tumour, this might remove the need for surgery, or
| means that they don't need to section as much around the
| tumour to be successful. Or it means that the brain gets
| attacked by the immune system.
| ars wrote:
| Solid tumors that can be removed in a big chunk by surgery,
| are in a sense curable.
|
| The problem is individual cells might fall off and those
| cells will grow into new tumors in other spots.
|
| Immunotherapy will kill those cells. But if you tried
| immunotherapy to kill a big chunk of tumor the side effects
| might kill the patient - think never-ending fever and
| inflammation.
|
| See you do both, you do surgery to remove the bulk of the
| tumor, and immunotherapy to vacuum up any lone cells.
| NoMoreNicksLeft wrote:
| That'll still be poor outcomes for brain tumors whose
| position makes surgery impossible.
|
| If I'm not mistaken, also there are even a few that are
| just nearly impossible to cut... remember reading an
| account of one such that dulled a few dozen scalpels. The
| introduction of some new cutting tool at the time was
| encouraging.
| ferfumarma wrote:
| Where is the poor guy with the cancer on his tongue? He wanted to
| try an experimental therapy, and said he couldn't because of the
| FDA.
|
| Can you imagine being in the same situation, and seeing this
| doctor get "moved to the front of the line"? (Albeit in a
| different country).
|
| I can't even imagine the frustration one would feel.
| paperwasp42 wrote:
| 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.
| giantg2 wrote:
| "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.
| steveBK123 wrote:
| 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 wrote:
| 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.
| mathieutd wrote:
| I don't understand this logic at all. How can more
| information be bad? If you see a mass that looks very
| likely to not be cancer, for which the cost of further
| investigation is higher than the likely benefit, then the
| rational patient will agree not to investigate further. I
| don't see how more information can be bad unless you assume
| that the patient is an idiot or irrational.
| bell-cot wrote:
| Both human nature and the legal system can be very
| hostile to "we didn't investigate anomaly A, B, C, D, E,
| ... in the patient's scans and test results, because none
| of them seemed likely to be worth the costs of doing so".
| hgomersall wrote:
| Because further investigation is dangerous. So you see a
| mass which has an a posteriori probability of being
| cancer of 1%, but the investigation causes serious
| complications in 2% of cases, then the decision to
| investigate is not clear cut. The additional information
| has not only not helped but has led to additional stress.
| steveBK123 wrote:
| Not all further investigation needs to be surgical. A
| mass that is found can be observed in decreasingly
| frequent ultrasounds or some other imaging and surgically
| investigated/removed only if found to be growing or
| passed a concerning size threshold.
|
| A doctor jumping straight to invasive procedures seems to
| be a mix of poor risk management and rarity of this type
| of medical imaging.
|
| My doctor for example, pointed out that actually in some
| East Asian countries, there are routine annual imaging
| tests done that pick up some of the types of cancer we do
| no screening for.
|
| To me the reason we don't in US is simply how medical
| care is paid for - employer provided insurance, and some
| actuarial calculation that on the insured pool they'd
| spend more money on imaging than they'd save on high cost
| stage 4 cancer care. Personally I'm happy to advocate
| more for myself, even if it costs money.
| hgomersall wrote:
| Do you have any experience of cancer staging or medical
| imaging? It certainly sounds like you don't.
| steveBK123 wrote:
| Yes. This to me is the same line of thinking as "in a
| meta study, wearing a helmet makes bikers more reckless
| and prone to injury so it's actually safer to be
| helmetless". No, actually it's safest to wear a helmet
| AND not become reckless.
|
| So similar approach here - its safer to get the imaging
| AND remain rational in evaluating results & next steps.
| fidotron wrote:
| Exactly. You could even have the option of contributing
| your MRI scans to academic research so that future
| identification of cancer improves, and set up a happy
| feedback loop.
|
| The scary truth is modern western medicine is primarily
| optimized to extract revenue while reducing spending and
| improving patient outcomes is merely a side effect of
| that process. Even in places such as the UK NHS it's all
| about not finding out things we don't want to know so we
| don't have to spend money dealing with it.
|
| This is why I look forward to when we can replace doctors
| (not nurses) with AI.
| magicalist wrote:
| > _The scary truth is modern western medicine is
| primarily optimized to extract revenue_
|
| MRI scans are a fantastic source of revenue, as are
| treatments for things that don't actually need to get
| treated. Reducing those things are actually doing the
| opposite of the motivation you're claiming.
| fidotron wrote:
| Those raise revenue. Actual spending involves effort
| which cannot be easily industrialized, and is only done
| to maintain the prestige of the industry.
|
| This is why getting tested for something which results in
| endless prescriptions is done enthusiastically while a
| test for something which might find something which
| requires them doing actual work provokes the sort of self
| serving concerns expressed elsewhere.
| magicalist wrote:
| > _This is why getting tested for something which results
| in endless prescriptions is done enthusiastically while a
| test for something which might find something which
| requires them doing actual work provokes the sort of self
| serving concerns expressed elsewhere._
|
| You'll have to be more specific because right now this is
| just handwaving. What kind of "actual work" are you
| referring to?
|
| It's generally actual medical researchers, who will
| neither get revenue or have to do actual work, who are
| objecting to excessive testing without patient outcome
| benefits.
| fidotron wrote:
| > You'll have to be more specific because right now this
| is just handwaving. What kind of "actual work" are you
| referring to?
|
| Anything that isn't completely reduced to an industrial
| process. i.e. we want to have a simple no-effort
| repeatable billable outcome for this or we won't do it
| and will claim doing so is counter productive or
| dangerous.
|
| > It's generally actual medical researchers, who will
| neither get revenue or have to do actual work, who are
| objecting to excessive testing without patient outcome
| benefits.
|
| And they're doing the establishment's dirty work by doing
| so.
|
| To provide a concrete example, I'm in Canada, and my
| other half had to pay for private MRI and ultrasound
| scans to identify a lump that she was laughed out of the
| room by three successive doctors for claiming she had.
| The MRI got her finally referred to a surgeon that
| announced he'd never seen anything like it, removes it,
| end of story.
|
| That's far from an isolated case. I know people in the UK
| that literally died from these antics.
|
| At one point I was invited to the opening of some medical
| simulation centre, and the speeches were enlightening.
| Two things stay with me: tests in India demonstrated that
| qualified doctors were no better than unqualified doctors
| except when the qualified doctors were told some of the
| patients were faking as part of an experiment and they
| are being observed, but mainly "I read a study that
| showed ~5-10% of people in US hospital are there because
| of a medical mistake from a previous visit, so I laughed
| and commissioned an equivalent study to show how much
| better we are in Canada, except for us it was >15%". The
| person telling that story was rightly disgusted. Those
| are not numbers for a profession that respects patients
| in the slightest.
|
| You will forgive people with actual experience on the
| receiving end of this nonsense for thinking that maybe
| it's not actually setup to provide the assistance it
| claims to provide, and is primarily for the
| aggrandizement of those engaged in the rituals.
| DrJaws wrote:
| 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.
| steveBK123 wrote:
| Isn't this more a product of relative rarity of this type
| of imaging & average doctor not knowing how to react
| properly other than escalation?
|
| Not ever spec on an image should mean cutting someone open
| or blasting with radiation.
| KaiserPro wrote:
| 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.
| steveBK123 wrote:
| Thanks for the edit and even the NYT article obscures this.
|
| My point on MRI is that they do not themselves have side
| effects.
|
| If you have a doctor that immediately sends you for a bunch
| of CAT scans and/or cuts you open, then obviously there are
| side effects.
|
| And why would you immediately jump to either? If it's the
| first ever scan, and you see something unusual it could be
| monitored by a 6month/1year ultrasound and/or MRI followup.
|
| Unfortunately it doesn't seem like any of the direct cancer
| detection solutions are there yet either. There's a recent
| startup that claims something like 5% detection of stage 1
| / 10% detection stage 2 / 25% detection stage 3 / etc on a
| set of cancers, but they also just accidentally mass-mailed
| a bunch of negative patients that they have cancer.
|
| You also express a false dichotomy - single MRI bad, but
| monthly MRIs for life good?
|
| A sober reading of annual MRI/Ultrasound type tests without
| knee-jerk invasive followups when you are 30+ seem like a
| reasonable risk weighted solution in contrast, doesn't it?
| KaiserPro wrote:
| > You also express a false dichotomy - single MRI bad,
| but monthly MRIs for life good?
|
| yeah, this is badly expressed on my part. I was trying to
| get across that a single whole body scan without context
| (ie it hurts here, or it bleeds there or we suspect x) is
| difficult to interpret. think of it as a day's
| unstructured logs. Regular scans allows you to build up a
| picture of whats changing, and whats normal for you.
|
| > A sober reading of annual MRI/Ultrasound type tests
| without knee-jerk invasive followups when you are 30+
| seem like a reasonable risk weighted solution in
| contrast, doesn't it?
|
| I think routine targeted scanning is something that is
| worthwhile. The UK does a number of them, and they were
| normally based on evidence of outcome.
| Prostate/breast/cervical etc etc. I personally think the
| future of public health is something akin to getting each
| personal a vitals dashboard.
|
| But, I'm not sure regular MRIs will give us that. if the
| evidence changes though, then it should be reassessed.
| lazyasciiart wrote:
| 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.
| DrJaws wrote:
| 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
| jseliger wrote:
| 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.
| kstrauser wrote:
| Sorry to hear that, and I agree completely.
| mortureb wrote:
| As the other commenter mentioned, I knew someone that had
| fantastic results just getting her "experimental" drugs from
| India.
| jassyr wrote:
| Curious, are these easily found and purchased online? Or
| does one have to go through some "darkweb" channels?
| mortureb wrote:
| They are of Indian origin so they knew doctors directly
| in India.
| mortureb wrote:
| 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.
| slashdev wrote:
| 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 wrote:
| 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.
| yread wrote:
| I was devastated when I learned about Richard's tumor, the
| molecular profile is also very aggressive. Already showing that
| immunotherapy does anything is a huge step, I hope it works well
| enough to keep him here a bit longer.
|
| You can follow his treatment on twitter
|
| https://twitter.com/ProfRScolyerMIA
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