My wife was diagnosed in February with stage 4 invasive lobular breast cancer, peritoneal carcinomatosis with complete bowel obstruction. Surgeons gave her a couple weeks to live.
We went through enhertu which worked for about 3.5 months and relieved the blockage and she was able to eat again and get off IV nutrition. It obstructed again and her markers rose sharply in the summer, we did a course of taxol and are moving to trodelvy next week.
All of this has been entirely predictable, standard of care patterns.
But the standard of care for my wifes disease right now is a march toward death and I refuse to accept that.
I spend my every evening talking to every LLM, practically bargaining and begging for one of them to give me a thread of hope.
I appreciate this service and we will check it out. We are desperate to find something, I recognize ILC is tricky and complete obstruction is usually a death sentence, but we have to try right? She is 49, we have 4 kids.
Anyone out there, any ideas...any longshot, we will do anything.
Have you checked out any international Clinical Trials? You can search a lot of these here: https://clinicaltrials.gov/ getting the filters right can be tricky though. I’d ask AI for some help looking for the right permutations of names for things.
I’d book a call with FCCT as well. They have a list of private vendors that can potentially help with genetic sequencing and a few other things. They also mentioned a service to me that helps you search for potential clinical trials.
We are constantly looking for new trials, right now for her situation no trials will accept her because she depends on IV nutrition. Beyond that, there are no trials for her sub-type of breast cancer that go beyond 'surveillance'. Her cancer is tricky to find and diagnose, it does not show on a PET scan for example. Finding it early is super important, most dont find it until it is too late.
Get LLMs to hillclimb your wife's treatment. The target isn't exactly verifiable but you could iterate on ways to add verification signals. There's a huge difference between asking an LLM: "hey claude, my wife has cancer, I want your help with x,y,z", which mode collapses it into extreme over-caution; versus setting up the problem like an eval, which sends LLMs into a frenzy trying to solve it no matter what.
The OP is understandably desperate for something that can save his wife. I would be too!
However, they appear to be seeking something akin to a miracle via chatting to LLMs, and the likelihood of such an approach yielding anything useful is very, very low.
Since you’ve phrased it sensitively, I’ll do the non sensitive version: suggesting LLMs to someone dealing with the trauma of cancer is kind of fucking disgusting. They need emotional support from family and friends, not a computer god.
You’re taking advantage of a vulnerable person and diverting them from things that can actually help them to push your stupid computer parrot. You’re actively doing harm.
The top-level commenter asked for suggestions, already spends "every evening" talking to LLMs about their wife's issue, and LLMs can help and have helped people with intractable medical issues.
I dont create LLMs for a living, but I make my living using them to their full extent so I know how to extract useful info from them. Not exactly trying to trick it into giving me a cure, much deeper than that. Having it help me understand the biology, methods of actions for various drugs, what trials are targeting and them having them help me understand novel approaches, could a drug potentially do this and this, what if we mixed X and Y etc.
Not having any luck but once she falls asleep at night and I cannot, I have to do something and I have tokens begging to be used ;)
I go down various rabbit holes with lots of different models and can get past the basic safeguards and get to real info, real discussions - usually once you get over the 'help me cure cancer' mode and into the biology of how things work they can be helpful but right now everything seems to be a dead end.
The dog cancer thing got me excited and there may still be things to explore there but I get two conflicting opinions down that path - it is too late, since she is full obstruction there is no coming back from this spiral; and it is too early since there are still drugs that have a small chance of slowing or pulling things back some.
Yeah it's a phenomenal documentary to watch if your favorite hobbies include confusing correlation with causation and completely misinterpreting rat studies
We are talking about a biased documentary promoting a particular diet, not "the worlds largest study of nutrition, run by actual doctors". Yes, the documentary refers to studies like The China Study but that is an observational study that drew controversial conclusions, not some infallible piece of research. Hardly the gold standard of research. Do better.
There’s a difference between watching the documentary and reading the book, and scouring the internet for quick ways to dismiss it so you don’t have to change your lifestyle. Be better.
Your argument is that the companion book to the documentary, written by a ghostwriter who is not a doctor is not biased? Okay. I'm glad you liked your book. You should read actual research and not watch/read this biased BS
I've made plenty of lifestyle changes over the years based on actual research, the most recent of which was cutting down saturated fat which cut my LDL cholesterol by over 50% in 6 weeks. But I don't put much stock in these documentaries that are incredibly biased. Only stupid people can't see just how biased they really are. They are created just to ride the plant-based diet trend to make money, don't you see that?
Meat is not the problem. The problem is the standard sides and processed food people usually eat with the meat. Like burger buns, seed oils, food in frying oil .. and so on.
Eating clean proper ruminant meat will not be bad for you. What you eat with it is another issue..
Oh dear, someone gets their health advice from streamers and podcasters rather than actual health professionals.
The seed oil thing is nonsense.
> Eating clean proper ruminant meat will not be bad for you
Eating too much beef is bad for you in a variety of ways, it's associated with high blood pressure and high cholesterol, cardiovascular disease and type 2 diabetes.
It's frickin' delicious, but it's not some panacea superfood, quite the opposite.
Oh dear, someone believes everything they read on how something is not bad for you. Tell me how seed oils isnt associated with all our health style issues?
For one, every way I eat is based on trial and error. I've read many books and studies throughout the years. I have tried a whole food vegan approach for 6 months in 2020, which was terrible for my IBS. I struggled with ibs for years until I started figuring out stuff. I come from a family that is chronic in their seed oils use, and other processed food. When I tried to cut it out from my diet completely, I had improvements in my gut, as well as my skin and migraine. I am diagnosed with idiopathic urticaria, migraine, and IBS.
Solving my issues has been my main goal since I was a 115kg heavy teenager under 165cm. I managed to lose all the extra weight, but not without all my problems mentioned. Therefore I started experimenting from 2017. The last 4 years has been amazing regarding health and diet.I mainly eat ketogenic diet, and no seed oils at all. Only carb I do eat occasionally is potato. Potato seems to not trigger anything for me.
Current weight is 86kg, and been maintaing around this for years now based on my gym schedule.
I don't care about what streamers says at all. Unless they have tried it themselves for longer than 90 days, then it is invalid in my opinion. Just assuming that my advice is based on advice from streamers and podcasters is plain stupidity. If I can create the food myself from ingridients and animals around me. Then it also means humans did for ten thousands of years prior. Seed oils did not even exist before modern times. I do not count olive oil as seed oil when I say this.
Disclaimer: I have spent hundreds on hours on reading shit like this. How much time did you spend on the topic food? Did you transform yourself from trial and error?
Not sure if I want that to be honest. I could surely be 6-7kg lighter, but I would lose strength that has taken years to build. My height is 185cm now.
> Tell me how seed oils isnt associated with all our health style issues?
Ok, smoking, air pollution, mining runoff and water table poisoning, industrial waste, low-nutrient density foods, processed foods, sugary foods, red meat, Soda, energy drinks, lack of preventative care, lack in general of practical and affordable healthcare, alcohol, I could go on with hundreds of other things. But sure, seed oils are the problem. All of these are much more harmful to society than seed oils. Sure, are they used in excess? I'll grant that, but replacing them with animal fats is awful.
Linseed oil (flaxseed oil) is high in ALA and omega-6 fats, it could cause a REDUCTION in inflammation in some cases. It has the best omega-3:omega-6 ratio I know, and plenty of others are not harmful.
It sounds like you found something that works for you, but please keep the misinformation out of this convo.
Its not misinformation if its true. I specifically called out seed oils, since cutting that will basically cut most of the things that is bad in the modern diet. Its hard to find ultra processed foods without it here in my country. Even some soda has it now.. Its obvious that there are many factors, but starting with removing seed oils and sugar will make the biggest impact since so many other options has to be removed then.
Your list is true if you remove red meat from it. Obviously no people should be smoking, drinking, using plastics around food, do some gym or other fitness daily .. and so on.
So the real story here is that seed oils are a proxy, you haven’t necessarily seen any effect from removing them from your diet (consistent with the actual evidence here) but by cutting out processed junk you’ve lost a load of weight.
Congrats on the weight loss (genuinely), but it’s very unlikely seed oils are any sort of factor in themselves.
Here's the experts showing that meat is heavily linked to cancer:
"The International Agency for Research on Cancer (IARC) classifies processed meat as a Group 1 carcinogen (meaning it is carcinogenic to humans), and red meat as a Group 2A carcinogen (meaning it is probably carcinogenic to humans)."
Sorry you and your family are going through this, obviously a terrible and challenging situation.
No idea what part of the world you're in, but my cousin was stage 4 skin cancer, on his way out, and his doctor managed to get him into a clinical trial at Dana Farber in Boston, MA.
Literally saved his life. Experimental immunotherapy program was the trial.
Hoping a miracle comes in your direction somehow, someway.
Look into fasting, I'm seeing a growing number of people claiming success with fasting activating autophagy, give it a few 48 hour stints and see what happens.
This was six years ago, but I found it somewhat unbelievable that there was absolutely no therapeutically relevant guidance from the hospital regarding nutrition.
Not only fasting, but also as little sugar as possible. That also includes sugars from carbs. Also I would stay away from everything that is ultra processed. Including seed oils.
I have heard about more success stories where people did a 180 on their diet, than those who just keep eating like they did before their diagnosis.
The boring part about this, is that if it does not work, you spent the last part of your life eating really restricted.
Treatments like hormone therapy for estrogen positive breast cancer are meant to attack the cancer's metabolic signaling mechanism. Intermittent fasting, like taking 12 hour breaks with no food every day, is something else that you can do to try and stress cancer cells.
We have looked and talk to about some opportunities in South Korea and Saudi Arabia, but nothing has popped in China yet. Her type of breast cancer is more rare and progression to the point of complete bowel obstruction is usually so far gone people dont even try to study it, all the effort is to target things before they get this far.
This is probably very unwelcome advice, but I would strongly recommend a spiritual practice of some kind. When things are wretched, slowing down for a moment and turning inward can help. Prayer (to whatever form makes sense) or at least Yoga (something that isn't passive) may be more helpful than meditation in these circumstances, but I appreciate this might not be right for you.
I'll probably be downvoted for my suggestions, but here I go (I'm from France).
I would recommend changing diet, in France the "Seignalet" diet is well known.
Avoid sugar, mammal products (dairy, meat).
When you have no known solution to a problem, you have to try some out of the box solutions.
As desperate solutions, try "healers" or personally try Reiki or Zhi Neng Qi Gong or similar techniques.
Find one near your home.
Be careful: most "healers" are completely crazy (hoping to become gurus), some are money-oriented.
Most Reiki teachers are greedy.
Try a different approach. Cancer cells are quite immunogenic, so they're easy to kill, but their fickleness isn't what matters. It's their environment (TME: tumour micro-environment, if you want to search the literature) and their evasiveness that makes treatment hard. And maybe you can't do anything about the cells themselves, but you can certainly affect the TME.
Since you have biopsies, find the targets of the specific cell line in question, and research what you can do against them. Ignore the advice that tells you nothing is relevant because it's impossible to reach cytotoxic levels of some compound you're researching in one's system. You don't need chemo-level cytotoxicity. You're nudging the environment in the right direction, not aiming for a response the next day. Consistency wins the day. And that device reeks of scientific reductionism, and ignores things like metabolites, your microbiome, and so on. People in particular downplay the microbiome which seems to be directly involved in the immune system. You need to feed those buggers. For example, it's now established science that those without akkermansia do not respond to immunotherapies like PD-1 inhibitors. How do you get akkermansia? Ellagitannins. Walnuts, pomegranates, etc.
NF-κB is an example of a target. It seems to be involved in most, if not all TMEs. The great news is that plenty of things can downregulate NF-κB. For example, exercise (non-negotiable, the best medicine, if your wife can do any), berry anthocyanins, and even omega 3 DHA and EPA. The latter is in particular interesting because omega 3 is needed in inflammation resolution, and directly affects NF-κB. Anyway, find the appropriate targets, and do what you can do move them.
My other piece of advice is to make sure there are no deficiencies. Do the blood work. Make sure vitamin D levels are up there (they modulate the gut microbiome and immune system), omega 3 index (not free plasma, but the one that measures the actual weight taken up by cells, it's a more expensive test) aim for 8%, and so on. Sun exposure (not for the vitamin D, but also that) is also great for mitophagy. There are studies showing that cancer patients with sun exposure have better survival outcomes than those that don't get any sun.
Sorry you have to go through this. I pray that you and your wife, and everyone else involved have the strength and wisdom to get through this.
Sorry to hear about your wife. Keep advocating and searching.
A great resource: Cancer Patient Lab. Check them out - they might have longshot suggestions for you. Dr. Dan Flora at St. Elizabeth is an amazingly compassionate oncologist and also might have some ideas for you.
One of my aunt is detected for lung cancer couple of months ago. Its been hard navigating what options we have. How does this system work? Does anyone have a journey/experience with it?
The documentary Forks Over Knives has a segment about people with cancer given days or weeks to live and they follow a whole food vegan diet and live for much, much longer. The documentary was enough for me to instantly give up meat then, a few years later, go full vegan.
I’ve known a few people who were diagnosed with cancer since then and gave them the recommendation but, alarmingly, they weren’t open to giving up meat at all. Horrible chemo and drugs? Ok. No steak? No.
Visited the MD Anderson cancer hospital in Houston with one friend and was hoping their food court had vegan or whole food options. Nope. Only pre-packaged junk food for me. It’s surreal watching people serve up processed meat and red meat to people battling cancer inside the worlds premiere cancer hospital. I feel like I’m in the twilight zone. I could go full nihilist and say that preventing cancer, or combatting it with cheap food found at every supermarket, would put them out of business. Something to think on.
As a cancer patient, I can say that one of the most annoying things in the journey is when well-meaning people advise us to pursue miracle cures, diets and treatments. Please don't do that. To make an analogy, imagine if you were grieving at a funeral and someone came up to you and told that it's gonna be alright because they recently watched a documentary about necromancy on Netflix.
68 comments
[ 0.90 ms ] story [ 69.8 ms ] threadWe went through enhertu which worked for about 3.5 months and relieved the blockage and she was able to eat again and get off IV nutrition. It obstructed again and her markers rose sharply in the summer, we did a course of taxol and are moving to trodelvy next week.
All of this has been entirely predictable, standard of care patterns.
But the standard of care for my wifes disease right now is a march toward death and I refuse to accept that.
I spend my every evening talking to every LLM, practically bargaining and begging for one of them to give me a thread of hope.
I appreciate this service and we will check it out. We are desperate to find something, I recognize ILC is tricky and complete obstruction is usually a death sentence, but we have to try right? She is 49, we have 4 kids.
Anyone out there, any ideas...any longshot, we will do anything.
Have you checked out any international Clinical Trials? You can search a lot of these here: https://clinicaltrials.gov/ getting the filters right can be tricky though. I’d ask AI for some help looking for the right permutations of names for things.
I’d book a call with FCCT as well. They have a list of private vendors that can potentially help with genetic sequencing and a few other things. They also mentioned a service to me that helps you search for potential clinical trials.
Get LLMs to hillclimb your wife's treatment. The target isn't exactly verifiable but you could iterate on ways to add verification signals. There's a huge difference between asking an LLM: "hey claude, my wife has cancer, I want your help with x,y,z", which mode collapses it into extreme over-caution; versus setting up the problem like an eval, which sends LLMs into a frenzy trying to solve it no matter what.
Second thing I can share is the man who created an mRNA vaccine for his dog Rosie's cancer, and it worked! https://news.unsw.edu.au/en/meet-the-man-who-designed-a-canc...
The OP is understandably desperate for something that can save his wife. I would be too!
However, they appear to be seeking something akin to a miracle via chatting to LLMs, and the likelihood of such an approach yielding anything useful is very, very low.
Not having any luck but once she falls asleep at night and I cannot, I have to do something and I have tokens begging to be used ;)
The dog cancer thing got me excited and there may still be things to explore there but I get two conflicting opinions down that path - it is too late, since she is full obstruction there is no coming back from this spiral; and it is too early since there are still drugs that have a small chance of slowing or pulling things back some.
Update: thank you for the downvote, whoever you are.
That’s a tough one.
I've made plenty of lifestyle changes over the years based on actual research, the most recent of which was cutting down saturated fat which cut my LDL cholesterol by over 50% in 6 weeks. But I don't put much stock in these documentaries that are incredibly biased. Only stupid people can't see just how biased they really are. They are created just to ride the plant-based diet trend to make money, don't you see that?
Eating clean proper ruminant meat will not be bad for you. What you eat with it is another issue..
Oh dear, someone gets their health advice from streamers and podcasters rather than actual health professionals.
The seed oil thing is nonsense.
> Eating clean proper ruminant meat will not be bad for you
Eating too much beef is bad for you in a variety of ways, it's associated with high blood pressure and high cholesterol, cardiovascular disease and type 2 diabetes.
It's frickin' delicious, but it's not some panacea superfood, quite the opposite.
For one, every way I eat is based on trial and error. I've read many books and studies throughout the years. I have tried a whole food vegan approach for 6 months in 2020, which was terrible for my IBS. I struggled with ibs for years until I started figuring out stuff. I come from a family that is chronic in their seed oils use, and other processed food. When I tried to cut it out from my diet completely, I had improvements in my gut, as well as my skin and migraine. I am diagnosed with idiopathic urticaria, migraine, and IBS.
Solving my issues has been my main goal since I was a 115kg heavy teenager under 165cm. I managed to lose all the extra weight, but not without all my problems mentioned. Therefore I started experimenting from 2017. The last 4 years has been amazing regarding health and diet.I mainly eat ketogenic diet, and no seed oils at all. Only carb I do eat occasionally is potato. Potato seems to not trigger anything for me. Current weight is 86kg, and been maintaing around this for years now based on my gym schedule.
I don't care about what streamers says at all. Unless they have tried it themselves for longer than 90 days, then it is invalid in my opinion. Just assuming that my advice is based on advice from streamers and podcasters is plain stupidity. If I can create the food myself from ingridients and animals around me. Then it also means humans did for ten thousands of years prior. Seed oils did not even exist before modern times. I do not count olive oil as seed oil when I say this.
Disclaimer: I have spent hundreds on hours on reading shit like this. How much time did you spend on the topic food? Did you transform yourself from trial and error?
You can bring it down to 70, get lean
All the big meta-analysis studies show it isn't really bad for you. Do you have a study to show the contrary?
Ok, smoking, air pollution, mining runoff and water table poisoning, industrial waste, low-nutrient density foods, processed foods, sugary foods, red meat, Soda, energy drinks, lack of preventative care, lack in general of practical and affordable healthcare, alcohol, I could go on with hundreds of other things. But sure, seed oils are the problem. All of these are much more harmful to society than seed oils. Sure, are they used in excess? I'll grant that, but replacing them with animal fats is awful.
Linseed oil (flaxseed oil) is high in ALA and omega-6 fats, it could cause a REDUCTION in inflammation in some cases. It has the best omega-3:omega-6 ratio I know, and plenty of others are not harmful.
It sounds like you found something that works for you, but please keep the misinformation out of this convo.
Your list is true if you remove red meat from it. Obviously no people should be smoking, drinking, using plastics around food, do some gym or other fitness daily .. and so on.
Congrats on the weight loss (genuinely), but it’s very unlikely seed oils are any sort of factor in themselves.
Here's the experts showing that meat is heavily linked to cancer:
"The International Agency for Research on Cancer (IARC) classifies processed meat as a Group 1 carcinogen (meaning it is carcinogenic to humans), and red meat as a Group 2A carcinogen (meaning it is probably carcinogenic to humans)."
https://progressreport.cancer.gov/prevention/diet_alcohol/re...
No idea what part of the world you're in, but my cousin was stage 4 skin cancer, on his way out, and his doctor managed to get him into a clinical trial at Dana Farber in Boston, MA.
Literally saved his life. Experimental immunotherapy program was the trial.
Hoping a miracle comes in your direction somehow, someway.
I have heard about more success stories where people did a 180 on their diet, than those who just keep eating like they did before their diagnosis.
The boring part about this, is that if it does not work, you spent the last part of your life eating really restricted.
She is ER+ and they removed her ovaries and put her into early menopause to prevent it from getting its fuel.
This is probably very unwelcome advice, but I would strongly recommend a spiritual practice of some kind. When things are wretched, slowing down for a moment and turning inward can help. Prayer (to whatever form makes sense) or at least Yoga (something that isn't passive) may be more helpful than meditation in these circumstances, but I appreciate this might not be right for you.
I'll probably be downvoted for my suggestions, but here I go (I'm from France).
I would recommend changing diet, in France the "Seignalet" diet is well known. Avoid sugar, mammal products (dairy, meat).
When you have no known solution to a problem, you have to try some out of the box solutions.
As desperate solutions, try "healers" or personally try Reiki or Zhi Neng Qi Gong or similar techniques. Find one near your home. Be careful: most "healers" are completely crazy (hoping to become gurus), some are money-oriented. Most Reiki teachers are greedy.
Since you have biopsies, find the targets of the specific cell line in question, and research what you can do against them. Ignore the advice that tells you nothing is relevant because it's impossible to reach cytotoxic levels of some compound you're researching in one's system. You don't need chemo-level cytotoxicity. You're nudging the environment in the right direction, not aiming for a response the next day. Consistency wins the day. And that device reeks of scientific reductionism, and ignores things like metabolites, your microbiome, and so on. People in particular downplay the microbiome which seems to be directly involved in the immune system. You need to feed those buggers. For example, it's now established science that those without akkermansia do not respond to immunotherapies like PD-1 inhibitors. How do you get akkermansia? Ellagitannins. Walnuts, pomegranates, etc.
NF-κB is an example of a target. It seems to be involved in most, if not all TMEs. The great news is that plenty of things can downregulate NF-κB. For example, exercise (non-negotiable, the best medicine, if your wife can do any), berry anthocyanins, and even omega 3 DHA and EPA. The latter is in particular interesting because omega 3 is needed in inflammation resolution, and directly affects NF-κB. Anyway, find the appropriate targets, and do what you can do move them.
My other piece of advice is to make sure there are no deficiencies. Do the blood work. Make sure vitamin D levels are up there (they modulate the gut microbiome and immune system), omega 3 index (not free plasma, but the one that measures the actual weight taken up by cells, it's a more expensive test) aim for 8%, and so on. Sun exposure (not for the vitamin D, but also that) is also great for mitophagy. There are studies showing that cancer patients with sun exposure have better survival outcomes than those that don't get any sun.
Sorry you have to go through this. I pray that you and your wife, and everyone else involved have the strength and wisdom to get through this.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7409346/
A great resource: Cancer Patient Lab. Check them out - they might have longshot suggestions for you. Dr. Dan Flora at St. Elizabeth is an amazingly compassionate oncologist and also might have some ideas for you.
I’ve known a few people who were diagnosed with cancer since then and gave them the recommendation but, alarmingly, they weren’t open to giving up meat at all. Horrible chemo and drugs? Ok. No steak? No.
Visited the MD Anderson cancer hospital in Houston with one friend and was hoping their food court had vegan or whole food options. Nope. Only pre-packaged junk food for me. It’s surreal watching people serve up processed meat and red meat to people battling cancer inside the worlds premiere cancer hospital. I feel like I’m in the twilight zone. I could go full nihilist and say that preventing cancer, or combatting it with cheap food found at every supermarket, would put them out of business. Something to think on.
https://www.forksoverknives.com/the-film/
Oh, you mean the findings of the worlds largest study on nutrition?
But yeah, keep eating at Arby’s. That’ll help.