Comment by keithwarren
4 days ago
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.
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.
Appreciate that, we have been in contact with MGB and DF up that way, no trials will accept her as she depends on IV nutrition.
I'm ever so sorry to hear this.
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.
We are deeply devout Christians, prayer and hope are our anchor in this.
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.
Thank you, this is some great info and an angle I have not explored deeply.
Very sorry to hear this.
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.
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.
Thank you, I will look.
Hey mate - no practical advice for you and your family, but I wish the best for you all.
Look into high dose THC. You'll need to include CBD and titrate the THC up slowly so she is not overwhelmed with the psychoactive effects.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7409346/
Wha, what the fuck are you talking about
Tried going to China? Heard they have great Cancer therapies.
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.
Heard the same thing from an oncologist in Europe. Unfortunately the attitude here is still one of sarcasm. "Of course they're making great progress, but do patients agree to take part in the studies?" According to this oncologist, studies that would take 5 years in the West are done in 18 months in China, even in small regional hospitals.
I'm so sorry you're going through this. I don't have anything to add, but I just want you to know how very very sorry I am to hear this.
Disclaimer: talking out of my arse
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...
Hey if Anthropic wants to win everyone over then this is the problem they should solve
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.
How do you set it up like an eval?
LLMs aren't genies
Indeed. Your point?
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I really hope the next treatment works
You and me both.
I'm sorry to hear this.
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.
Reiki against cancer? Are you nuts?
This is the correct question. It is very hard to fathom how a healthy mind could produce these thoughts. Qi Gong is just as obvious horseshit.
Check out the documentary Forks Over Knives. It shows that cutting animal protein from your diet can combat cancer by starving it. Good luck!
Update: thank you for the downvote, whoever you are.
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..
> seed oils
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.
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Hot take of the year. It’s not the meat, it’s the potato salad. Stick to your day job and leave the cancer studies to the professionals.
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As a preventive measure, vegetarian/vegan diets are correlated with lower incidence of some types of cancer. There's a little bit of research showing that survivors of these same types of cancer may do better afterward (as in lower likelihood of recurrence) with a plant-based diet, but it's too soon to draw any conclusions there.
But there's nothing to suggest eliminating meat can help combat cancer or increase survival rates. And good nutrition -- including and especially protein -- is critical while fighting cancer. Switching to a plant based diet usually makes this harder for people.
Don't throw around stuff like this. It's pseudoscientific, at best.
> thank you for the downvote, whoever you are.
You're welcome.
‘there's nothing to suggest eliminating meat can help combat cancer or increase survival rates.’
Watch the free documentary and you’ll see.
Yeah it's a phenomenal documentary to watch if your favorite hobbies include confusing correlation with causation and completely misinterpreting rat studies
Let’s see: do I take the findings of the worlds largest study of nutrition, run by actual doctors, or the word of some rando on the internet?
That’s a tough one.
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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.
I would have thought many, if not most, cancer patients go through periods of not eating at all or even drinking for much longer than 48 hours due to mucositis from chemotherapy.
This was six years ago, but I found it somewhat unbelievable that there was absolutely no therapeutically relevant guidance from the hospital regarding nutrition.
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.
Well the good news is the fasts a lot because her digestive system has been nuked by the cancer itself so she cant really eat.
She is ER+ and they removed her ovaries and put her into early menopause to prevent it from getting its fuel.
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.
There’s a mental clarity and purity in fasting