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Cancer expert given experimental treatments for incurable brain tumour
- PaulHoule 3y agoI 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.
- zeku 3y agoThat's amazing, I hope this works as it seems promising!
- paperwasp42 3y agoI 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.
- steveBK123 3y agoSame 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 3y agoIt'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 3y agoI 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.
- yread 3y agoI 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 https://twitter.com/ProfRScolyerMIA
- Empact 3y agoA 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 https://en.wikipedia.org/wiki/Right-to-try_law
- zdragnar 3y agoPeople 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.
- sneak 3y agoWhy 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.
- hotpotamus 3y ago[flagged]
- avery17 3y agoRequire the treatment be free for the patient. Problem solved.
- RandomLensman 3y agoWho 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 3y ago
- gwbas1c 3y agoOne 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 3y agoWhat is to be done about the strong individualistic element - some might say liability - among doctors in Western medical systems?
- fidotron 3y agoAI, unironically.
- giantg2 3y agoExactly - 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 3y agoThe 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 3y agoAlright, point taken...
- adamredwoods 3y ago>> 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.
- AtlasBarfed 3y agoIMO 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).
- giantg2 3y agoI 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 3y agoI 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 3y agoRegarding 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.
- intrasight 3y agoBespoke, patient-specific, genomic treatments: they'll ask how deep are your pockets. I am reminded of Lance Armstrong beating cancer.
- stephen_g 3y agoThis 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.
- stvltvs 3y agoLance had testicular cancer which is highly treatable, but I take your point in the general case.
- byteCoder 3y agoYes, such treatments have been in trial for a couple decades at NIH, showing complete response in a segment of the patients for certain cancers. The therapies harness each individual's immune system to direct it's attack to the mutations specific to their tumors. Iovance is on the brink (should have been approved in the next month or two, but has been delayed because of "staffing shortages" at the FDA) of getting FDA approval for Tumor Infiltrating Lymphocytes adoptive cell therapy. Besides the special labs used for the cell processing (managed by Iovance), the therapy is not a whole lot different from stem cell transplants, so any hospital that helps patients with blood-bourn cancers can provide this new therapy to melanoma (and soon, other cancer) patients. P.S. I'm an 11-year survivor post-TIL therapy for Stage 4 melanoma at NIH.
- TheHappyOddish 3y ago> Bespoke, patient-specific, genomic treatments: they'll ask how deep are your pockets. In Australia?
- deleted 3y ago[deleted]
- dpeckett 3y agoThus continuing the long tradition of Australian physicians experimenting on themselves https://en.wikipedia.org/wiki/Barry_Marshall#Career_and_research https://en.wikipedia.org/wiki/Barry_Marshall#Career_and_rese...
- DrAwdeOccarim 3y agoI can’t seem to find exactly what kind of treatment he received. Does anyone know the actual scientific description of it?
- dpeckett 3y agoInterview with Professor Scolyer and his colleague Professor Georgina Long https://www.youtube.com/watch?v=blPsZ1eTxzE https://www.youtube.com/watch?v=blPsZ1eTxzE
- kogus 3y agoThis 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?
- NoMoreNicksLeft 3y ago> 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 3y agoOK, 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 ?
- ars 3y agoSolid 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 3y agoThat'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.
- desireco42 3y agoHe 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
- bell-cot 3y ago> 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.
- desireco42 3y agoTrue but here we are talking about dying people and their agency to decide what to try and do...
- cancerhacker 3y agoSteve 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.)
- desireco42 3y agoYes, but that refusal was fairly long, enough to make things so bad that it was irreversible... I am glad you are well and overcame cancer.
- ferfumarma 3y agoWhere 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.
- beefman 3y ago> that there is no blood brain barrier and historically conceptualised as historically conceptualized?