I had a (micro)prolactinoma that was successfully treated with medication. Even though it was nowhere near as "bad" as this man's girlfriend's, getting it diagnosed took almost 2 years and the possibility of prolactinoma was dismissed outright by several doctors.
It should be pointed out that the pituitary gland sits at the base of the brain and prolactinomas are not technically considered "brain tumors" because they're not in the tissue of the brain. So it's a mischaracterization to keep referring to this as a "brain tumor" and a bit of an odd one for someone trying to start a medical research effort.
Unfortunately, the reality is that sometimes life just doesn't deal you a good hand. I think it's sad this man is talking about children when prolactinomas are a leading cause of infertility and it sounds like, for a variety of reasons, this man's girlfriend has one that is very difficult to treat. While it's OK to always hope, it's also possible to cling to false hope so strongly that it prevents you from accepting and moving forward with the life you have instead of the life you envisioned.
Agreed that initially referring to it as "brain tumor" would have been fine.
Thanks for sharing your story too, perhaps this condition isn't rare. Coincidentally I once went into bar and vaguely recognized a roommate I hadn't seen in years. His appearance had changed and he now had remarkable Hulk like features. I restrained myself from asking but I honestly thought he looked great.
We chatted and he shared that he had "brain surgery" 2 weeks(?) prior to remove a tumor on his pituitary gland. He just woke up one day and his vision was distorted. The next day he woke up blind which lead to him getting a diagnosis and surgery. The tumor had also caused pituitary disfunction which induced giantism.
If I recall, the surgery was performed going behind his nose through an incision in his mouth above the posterior of his upper lip which differs slightly from the approach in the OP. It's amazingly fortunate that this is an option given it looks inoperable from the MRI.
I'll also share that towards the end of our conversation he thanked me for not commenting on his appearance and that he was self-conscious. It's compelling, especially when someone looks good, to mention it, but there's no need to lead with it.
I imagine it's easier to some extent to put up the good fight / keep fighting rather than face the terrible unfairness of it all. But in focusing on the fight, I also wonder about being present in the reality with a partner.
If I understand it correctly, a prolactinoma can make it harder to have children mainly because high prolactin can disrupt ovulation, but it does not automatically mean having a child is impossible. In many cases, treatment brings prolactin back to normal and fertility can return. And if carrying a pregnancy is not possible for medical reasons, there can still be options like IVF, and having someone else carry the pregnancy where it is legal and appropriate. So it may be more complicated and it can be very hard in some cases, but it is not an absolute dead end. A hopeless tone is not very useful here because it can discourage people from exploring realistic options and evidence based treatment paths.
You're right, but per the post, this man's girlfriend was still struggling with elevated prolactin and it seems there is no clear "cure" for her at this point. She's been through multiple rounds of treatment and faces the prospect of more.
I didn't mean to sound hopeless but when you're in the midst of suffering from a medical condition and the future is uncertain, having your closest person focusing on something that isn't the immediate priority and that you may never be able to do can make you feel really horrible/inadequate.
Imagine you're the man's girlfriend. How would it make you feel if your SO was still talking to you about children at this stage?
That long duration stress from caring for a loved one with a potentially fatal illness is difficult to describe. I remember sharing that same driving thought of “if this goes south, will I honestly be able to say I did everything I could?”
Had a family member pass away and was part of their long term care team. The exact same thoughts came through my head too.
The 'funny' thing is that for the first few days, you can do a lot, but with medical stuff, it's mostly just waiting anyway. Even the first month, you can power through a lot. You become an expert fairly quickly at the little health thing. And then find that we know next to nothing about biology.
But after weeks, it's supprising how little you can do that is 'extra'. The grind really gets to you fast. And your putting your own needs away for just that little time catches up on you. You end up needing support quickly too. Not wanting support, needing it.
In the end I was able to hold my head high and say I absolutely did everything I possibly could, even to the point of needing help myself. I was just surprised at how little ways that went towards affecting the outcome.
I'm... concerned for the health of this man. I appreciate his dedication, but I read a level of love that's pressing past caring for the human and into beating yourself up.
Did she ask you to cure this tumor? Did she ask you to post about it?
This is a common story in disability and chronic illness communities -- a partner gets so fixated on the illness they forget the human afflicted with it. The ill partner goes to the grave wishing their partner would stop fighting and start just spending their remaining time filling their lives with joy.
It leads to especially dark places when they don't succeed.
I wish him all the best, but don't lose sight of the human suffering the illness and what they want.
This post was actually really tough for me to read, because it read exactly like the suicide note a friend had sent me (and others) after his partner had died suddenly. It chronicled the joy and happiness in their relationship, her illness, his slow descent into desperation, and, after she passed, his resolve to follow her.
If the author of the post is reading these comments, your heart is in the right place, but just be careful and take care of yourself. Don't lose the forest for the trees.
I fully agree, there is something unsettling about this post and I can't put my finger on it, but here is an attempt:
His girlfriend is going through this medical issue, but he's made this post about himself? He's going to be the hero to save his GF and others with this brain tumor using the medical equivalent of vibe coding. I don't know, it just sounds immature and wrong
I’ve been here. I lost my wife to a metastatic tumor. He’s coping with the horror through determination to fight and win, and communicating it.
My person had 4 surgeries, countless MRIs, you name it. We had access to the best doctors in the US. There was no way she was going to not beat this thing. We booked a vacation and there was no doubt in my mind that we were going to be there. Until the day that changed.
The dude is a little unhinged. He’s trying to have some agency and control where none exists. He wants to save the girl he loves. So did I. Give him some grace.
Yup, you got it. I'm a survivor (so far) from a relapsed cancer myself. People have no idea of the kind of insanities you are willing to pursue in such desperate situations. Grace and forgiveness is the right approach here.
He is 25 years old and trying to cope with a hard life event. Let’s not act like it doesn’t affect him. It affects everyone around her and the strong reaction from him is really a positive reflection on her, isn’t it?
His post is written and edited to garner sympathy and support. I don’t mind that for a naive but noble cause. And there is always a slim chance of success.
Oh, thank you. I wasn't able to figure it out exactly - at first I thought OK, the girlfriend died, that's why this post... But with her _alive_...
Re read it, it sounds like he's the victim: He was haunted during vacation. He was the rock. He fell into fetal position. I mean, sure, he's _a_ victim, but until she dies, if she dies, this is about her. Curing her is again about him and his want for kids.
> David C. Fajgenbaum (born March 29, 1985) is an American immunology researcher and author who is currently an assistant professor at the Perelman School of Medicine of the University of Pennsylvania.[1] He is best known for his research into Castleman disease.
He spent years studying the disease as a researcher. He's an exception, really.
A close friend is considered one of the best neurosurgeons at one of the best hospitals in the country. Brain tumors are his specialty. I remember him once saying he was growing exhausted about his job and thinking of retirement, even when he’s still young. The reason being, most of the other doctors in his team were not very competent and he had to constantly review and correct their work. He’s not an arrogant guy but all the contrary, very down to earth. For him to say something like that is because the mistakes he sees have to be bad. Every time he tried to quit, the hospital threw so much money at him that he could not refuse it.
And sometimes that advocacy is harmful, desperate, arrogant flailing—against the reality one knows is true with overwhelming likelihood—manifesting as "advocacy" or "will" that destroys so many chances for fully experiencing the reality of the precious, remaining, time one has (or one has with one's partner).
NOTE: This is not me disagreeing at all, just your point moved me to make the obvious counterpoint, having been through all this myself very literally and very recently. I know firsthand how important the advocacy is, but also how often it causes nothing but harm. There is a real tricky balance between agency vs acceptance when you've truly lost control of things, like in these cases.
Sure, and we probably all agree that these are personal decisions. If the OP wants to dedicate his life to working on this particular problem, great. Maybe he makes a meaningful contribution. Maybe he just helps his partner make better informed medical decisions. Even if you plan to follow standard of care, doctors often present choices that balance risk vs result.
Also, doctors split their time among patients and their various diseases. You, on the other hand, can focus your study on your disease. If you have a scientific mind, you can become an expert with enough study.
Exactly, the unsettling thing is the fixation in himself, what he thinks, what he already knew before everyone else, how important is the work he does, how he got the best doctors, and now he is going to cure his girlfriend's tumor. Couldn't make it past the half of it, frankly insufferable.
I think that for an average person a few years ago, probably there’s nothing meaningful they could have done.
For a smart VC with some money and with some knowledge of biology and willing to put in some hours, and with a disease that is “on the bubble”, i.e. not a slam dunk for modern medicine, but also not a death sentence, that there’s a decent chance that he can meaningfully improve the outcome.
I also see what you’re saying about the vibe and making it about himself, but that’s also helping him get attention… here we are talking about it. With more attention he’s going to get more skilled people helping her out.
I don't know, she is not terminal, she is in the part where the knowledge is lacking, so what he is doing is actually reasonable.
Nobody knows anything, giving a shot to save the love of your life, with their approval, might be good, assuming you still spend time with them.
The symptoms if they came back would kill any hope for traveling anyway
It’s an innate human desire to do everything in one’s power to save the person you love.
If you had a feeling you could do more, would you not try?
When you’re not personally involved, it’s easy to see that this might be misguided, but when living through it and experiencing daily fear of loss of your partner, it’s extremely difficult to think logically.
I have seen this multiple times and it’s always so unbearably sad.
Hmm. Perhaps it serves as a commitment to post about this publicly? And as one other person mentioned, you have a far better chance of beating this today than just a few years ago, especially with some money and connections.
>It leads to especially dark places when they don't succeed.
The same can be said about child birth, and yet, people still make kids.
It's very possible that his partner is fully aware of and supportive of his mission. And I do agree that he should ensure that this is something his afflicted partner wants.
One point I want to make though is that even if someone embarks on a mission like this and fails, what they learn in the process — and uncover for the world at large — can help the next generation. It's not futile. It's not in vain.
I often think that I would do the same thing if I or someone I loved had a chronic disease, either go all in in a specific project before I die, or go all in on a moonshot to accelerate a cure.
A subtle change that I think could have a lot of potential impact is changing it to "I'm going to try to cure".. instead of "I'm going to cure".
It will still be true, it will still be an act of love, but it removes the aspect of being a way to avoid the pain of a loss. In fact, if you face the likelihood of loss, then you will be able to actually optimize for increasing likelihood of a cure instead of risking optimizing for maximal coping mechanism.
I agree the way he writes about it is uncomfortable. At the same time I also think some people motivate themselves with a version of "Do or do not, there is no try." He desperately wants to do something, but a lot is simply out of his hands. Still, that energy has to go somewhere.
If we had a machine today with unlimited intelligence could it figure out a cure for cancer with our currently available data, or would it just request more data and ask us to conduct more studies? Is the bottleneck our ability to recognize patterns in the current data (i.e. intelligence) or the lack of sufficient data to determine a pattern? Or is it some other more nebulous thing that we aren’t considering?
A gross understatement. In approximate terms, cancer is any time cell proliferation goes off the rails. More possibilities than you can shake a stick at.
A bit like asking how close are we to being able to fix electronic devices that have lost their magic smoke.
Ok, pick one charitably. Is there any type of cancer whose cure could be found with an unlimited amount of intelligence but only the currently available data?
I’m personally convinced that at least for physics we have sufficient data for the next big theoretical breakthrough and we lack only the imagination and the computer power required to numerically validate the maths through simulations.
It feels an awful lot like the decade before Einstein’s landmark papers on quantum mechanics and relativity.
Watch how people like Terrence Tao et al are transforming how mathematics is done: with AI assistance and the Lean theorem prover, at a level of collaboration and consistency never before possible.
Something similar is just around the corner for the other sciences, the ability to mechanise the integration of vast tracts of previously disconnected facts and insights.
Surely something of value will pop out of the result…
No new successful fundamental theory has even gotten off the ground since the Standard Model, which is half a century old at this point.
Our understanding of gravity hasn’t improved substantially in a century. String Theory is dead, stop whipping it. Other quantum gravity theories each have one proponent going in circles futilely looking for a big breakthrough that never comes.
Superconductivity was discovered 115 years ago and we still don’t understand it! We’re “finding” new HT materials by accident and then attempting to explain how they work.
Nobody can figure out how to predict a new one, ab initio.
Our understanding of the universe is improving only in the sense that we’re now more certain that we don’t know much at all about: its early history, far future, present behavior of gravity, or its content.
I’m not aware of any “sea change” akin to the scale and scope of QM or GR in many decades despite clear need for one.
Physics has stagnated for a long time now.
My conspiracy theory is that there has been a brain drain into the finance industry, but that doesn’t explain everything.
> No new successful fundamental theory has even gotten off the ground since the Standard Model, which is half a century old at this point.
How long has scientific inquiry about physics been going on? In that frame, is 50 years a long time or a short time?
This feels a bit like the perspective of a non-specialist with access to the findings that end up in the popular press vs. things that are discussed at conferences/in journals.
The volume of journal papers published isn't well-correlated with progress, sadly.
I have a physics degree and I regularly read the latest published research. Please don't make ad hominem attacks.
> How long has scientific inquiry about physics been going on? In that frame, is 50 years a long time or a short time?
Unlike all other sciences, on a long horizon, eventually Physics will be "completely solved", with no more fundamentals to discover, only applications, which are generally considered other sciences or engineering. We far from achieving this end-state.
The point is that we made giant strides every few years for decades, and then... nothing. The field has hardly advanced since the 1970s!
> I have a physics degree and I regularly read the latest published research. Please don't make ad hominem attacks.
It was not an attack, I just don't know the authority from which your comments derive (and there wasn't really evidence provided outside your opinion which I think others disagree with).
> The point is that we made giant strides every few years for decades, and then... nothing. The field has hardly advanced since the 1970s!
I think my subtle argument is that we've been writing for about 4,000 years, so something discovered in the last 50 years is relatively new.
Even limiting yourself to the current era of post-Enlightenment inquiry, 50 years is still relatively new.
Separately, if you truly accept that physics is completely knowable, then it would stand to reason that as we asymptotically approach knowing 'everything', the marginal rate of acquiring new knowledge would slow.
So I guess I don't see which way you are leaning - are we not learning things because we know everything, or are we being impatient and not recognizing how fast our progress has been?
> I think my subtle argument is that we've been writing for about 4,000 years, so something discovered in the last 50 years is relatively new.
Sure, but look at everything else: there's this beautifully smooth exponential curve that everybody is riding up into the stratosphere, but theoretical physicists seem to be staring up at the foundations from below.
To be fair, these are the hardest of hard problems: figuring out the substrate from the inside.
The only point I'm trying to make is that we've pushed things to the very edge of human cognitive capability. The mathematicians have figured out how to push past that with tooling. The physicists just need to find their own way to expand the boundaries with the new toys available.
I think what you mean to say is select topics in specific fields in physics have stagnated. Possibly because they are not necessarily the most interesting fields of study. Astrophysics is doing just fine, as one counter example.
> Astrophysics is doing just fine, as one counter example.
I would argue that almost all of that is due to improvements in instrumentation that have lead to no new fundamental theories with wide acceptance. If anything, several older theories are now being increasingly questioned, but with no viable alternatives. (Or too many viable alternatives.)
However, there have been many "medium sized" astrophysics theoretical achievements in recent decades, which puts astrophysics head and shoulders above much of the rest of physics.
I.e.: we now better understand the theory of elemental synthesis and can account for the origins of the entire periodic table, which is research from this century. That's pretty decent chunk of fundamental knowledge that we've acquired only recently!
jiggawatts says >"My conspiracy theory is that there has been a brain drain into the finance industry, but that doesn’t explain everything."<
If the top brains went into the finance industry wouldn't we by now have better theories of how an economy works? Prediction in economics seems far poorer than in physics.
Or perhaps economics is inherently a much more difficult problem than physics?
Yeah so I had family diagnosed with GBM and they went the denial route real hard. They got scammed out of mid six-digits by fraudsters offering some bogus cure, they didn't do anything on their bucket list, they spent the entire time telling themselves they were going to get better and didn't appreciate their last years at all, they didn't do things they had meant to do before they died because they were stuck with this idea that they could beat it. That sort of attitude can happen to family as well. Don't avoid reality by telling yourself you can fix it, because you'll miss what's important. In all overwhelming likelihood, you are not what oncology needed to cure GBM, and spending time and energy trying to cure it would be better spent with your loved one. This is it. This is what you have left with them. Get real.
I'll echo everyone else's concerns for the author (and wife of course). But I'm kind of concerned about the logic behind the plan? Is the idea to focus primarily on FDA approved compounds and convince doctors to give them to her off-label? Or a supplement or something they can just acquire easily?
Otherwise what's left? Hope your AI collaboration reveals novel untested compounds or interventions and somehow forgo all standard testing for safety and effectiveness and just produce and adminster them to her?
Obviously the goal would be to find some intervention that a) works b) has no serious lasting side effects. Hopefully the author and wife don't choose to forgo all other recommended treatments in the meantime hoping the AI driven clinical trials can be speedrun or that AI is so smart clinical trials are uneccesary.
Not intrinsically or commonly deadly. https://www.hopkinsmedicine.org/health/conditions-and-diseas... says "1 in 10 people will develop a pituitary adenoma in their lifetime" - pituitary adenomas is the more general class of these benign tumors, as the pituitary gland produces multiple hormones.
Thank you for sharing the story. I appreciate your taking the time to write out all of these things despite having to also do the work to combat the condition.
About the kids thing: Genetic causes for these are super hard to isolate but if, perchance, science sees fit to give us the information then you do have embryo selection available to make this choice safely.
Rooting for the two of you. And just wanted to thank you for the story. The sum of anecdotes often is the source for good hypotheses for science. I think you’re doing a good thing sharing what you’re doing.
I had one of those when I was 14, I am 44 now. Every day is a blessing for me, but I cannot imagine what my family went through. Specially now that I am a dad myself.
I'm sorry, but LLMs aren't a magic spell that can solve the world's problems. If you are not a stranger to the biomedical world, then you understand that new treatments take at least a decade before they are treating patients with them out of trial. And the experts, they need experience actually administering these treatments in order to form the kind of opinions you describe them differing on. Plus there is a systemic logic to the way these things are developed. Profit. For example, no new anti-anxiety drugs have been created in 20 years, because it is cheaper to just test SSRIs that have passed FDA trials for other things like depression.
LLMs might be useful at generating text, but they cannot research, fund, develop, manufacture, educate, distribute, treat.
Like others have said, focus on speaking with your partner and deciding your plans together.
its very rational to say things to try and protect this person from himself. know that it is only that. rational.
if you think life is only rational its more likely lack of experience than knowing it better. Most of life, is infact not rational.
I'd want to tell him to save himself, but i do hope he saves her,.because regardless of anyone's words, he wont give up, maybe destroy himself too, and thats ok.
I am truly sorry how unfair life can sometimes be. I wish such things not on my worst enemies. I hope in some aspect of life Love will persist, prevail or return into your life OP.
I'm confused by this post because it seems like his partner got best therapy possible with two surgeries followed by medications without going blind or having other major hormonal issues which can happen after surgery. As correctly stated in this thread prolactinomas aren't a death sentence or even (technically) a brain tumour, and the major risks have been avoided so far. What exactly is being accomplished by a VC deeply researching this case beyond satisfying the valid desire to help your life partner?
Even just fundraising for diseases yields tangible results. Some folks dismissed the viral ice bucket challenge, but it raised over $100 million dollars and funded a lot of research in ALS: https://en.wikipedia.org/wiki/Ice_Bucket_Challenge
Hopefully he accomplishes new knowledge discovery and/or fundraising for research into this disease.
Those efforts were for diseases without treatment. But, prolactinomas already have treatment (surgery plus medication). I always ask myself what is the desired outcome from research effort - in this case it seems to be an attempt to cure/totally eradicate a prolactinoma, which would require hundreds of millions of dollars and custom medication (probably immune checkpoint inhibitors) to do, and this disease already has a treatment available.
I agree with you. Having lost a close family member to cancer over a period of years, the only regret I have is not trying more to improve her quality of life for as long as I could. Putting in effort to understand the diagnosis is warranted, but there are no miracle cures, even if there are miracles sometimes.
Not only are you're trying to keep a man from potentially achieving something, and not only are you also absolutely not considering how he'd feel not trying whatever he can, but you're also not considering what she thinks, feels or wants.
Not at all. I recognize the pattern. He wants to do something to control the thing he can’t control, it’s the same urge that leads people to magic diets and prayer going back to ancient times. Most of the time, your magic herb rich chicken soup is good for you and makes everyone feel a little better, whether or not it has anything to do with the disease.
Be he’s trying to play oncologist on TV with a cast of AI sidekicks to encourage him. This will not work. It will make him a less effective advocate within the medical system where he needs to focus on engaging experts, and drive him crazy in the meantime.
If the author is reading this, good luck. And fuck cancer.
why would you support a person in the sad psychosis, that they can ai their way to a solution of cancer, and that they can do so better than medical professional teams and research institutions at universities wth lots of expertise and lots of resources
I'm okay with that. I'd rather he spend every minute with her then waste his time trying to tech bro a solution.
It's even more disappointing to see the focus is LLM bullshit. He's not reaching out to current experts in the field to provide his expertise or funding, unfortunately he decided the best approach is, in my opinion, the most ludicrous approach. LLMs can synthesis huge amounts of knowledge, if it's useful a domain expert is using it to its full advantage.
My opinion is that LLMs are trash at generating any useful hypothesis beyond standard single degree ideas that anyone in the field would have.
I'd gladly eat my words. Maybe this post will be looked back on like the Dropbox comment. If LLMs could do such wonders, we would be entering a golden age.
> but you're also not considering what she thinks, feels or wants.
Im doing exactly that! I don't want her to see her partner be consumed by an endless and most likely fruitless quest.
Worst case scenario is what, he spends time with her? Oh the horror.
A hundred years ago he would be at church praying to god for a cure every day. He has replaced that with AI, the effect is the same. Looking for a solution/cure for when medicine has failed.
not to mention that "failed" implies that somehow death is not part of life. sure, going when we prefer would be better, and our descendants eventually will have this in some shape or form (digital uploads and backups and whatnot), but for now we have what we have.
He's probably really shaken that the future he imagined may not be in the cards for him and his partner.
I had a positive reaction to his post. The way he wants to spend his time seems more useful/meaningful/intentional than what most people choose to spend their time on. I hope he has success. While rare, others who have devoted themselves to studying the disease of a loved one have made meaningful progress: https://en.wikipedia.org/wiki/Augusto,_Michaela,_and_Lorenzo...
it’s only meaningful if there is progress made. the risk here, because this research is so personal, is that he spirals and spirals until he’s depressed or obsessed in an unhealthy way.
i wish him the best, truly, but i left the post feeling sad. if i was her i think i would prefer if my partner focused on being present and making the most of the situation. Stop trying to play superman.
What an incredible story! Thank you for sharing. So much for that New Yorker cartoon “Honey, come quick, I found something all the scientists missed” (well, something all the scientists thought was infeasible anyway).
My girlfriend had a brain tumor, and a very long complicated medical history.
When we met, she rattled, from all the pill bottles and was completly unfit.
I did not set out to intervene but some of it was a bit much and was just wrong.
I went to dozens of medical appointments, mri, cat scan, dog scan, the machine that goes "bing",her medical records would break your toe if you dropped them.
All I did was read labels and research ingredients and offer cleaner alternatives and well, keeping up with me forced her to be a LOT more active, and she found she could do without the prescription and non prescription drugs and eating junk.
That was 15 years ago, when she was planning her own pallitive care facility,(under medical supervision)
We are no longer together, but she has two kids, and is working and active, no drugs, tumor is not detectable.
I have some very strong personal feelings about the factory food, and always advocate for , whole, single ingredient food items, no sugar or other white crystaline substances, and a great deal of physical activity/working to capacity and a bit more.
It is anecdata, but it is based on actions that have no failure mode, require nothing exotic, just the incrimental replacement of bad stuff with known healthy alternatives, but ending up living absolutly free of chemicals and factory food, zero plastics,or other synthetics,which is a not an easy thing to do.
Another thing is that like the guy blogging this,I felt something stronly about her condition,but the flip, she had been diagnosed with the tumor, but I felt that she was actualy ok, under all of the surface medical problems and data, and I never did dispute anything, but very strongly defended the idea of actions that can pose no harm, ie: water not syrupy glop, brown rice, I dont care how long it takes to cook, etc,etc,etc. VS the outside concensus that if you are going to die,now, then this is permission to indulge in excess and small harms are now irellivant.
At some point, every man comes face to face with the lie of his potency. We're told our willingness to turn ourselves into ruthless avatars of purpose makes us powerful. Unstoppable. We can do anything if the call is great enough. Is it suspicious that the call takes the voice of more powerful men? Pay it no mind. The world is yours for the taking.
Then, one day, the tide comes in. You learn what old men know. What women know. What every victim of circumstance knows. Sometimes the world just happens to you.
We're the leaves floating down the river. Sometimes we float through the sunshine in gentle water. Inevitably we crash through the rapids and down the waterfall. You can fight it, but you won't win. Like many in the thread are saying, the author of the post should be grateful for the good fortune that his partner is still alive, right now, and they can still be together. Every moment spent raging against the rapids means lost moments with the love of his life that he could regret forever.
There's something to be said for fighting for the people you love. We all should. But the fight needs to make sense, and I'm not sure fighting cancer on short order is the right fight.
Regardless, this situation hurts my heart. I feel for him, and her. Nature is ruthless.
I had a (micro)prolactinoma that was successfully treated with medication. Even though it was nowhere near as "bad" as this man's girlfriend's, getting it diagnosed took almost 2 years and the possibility of prolactinoma was dismissed outright by several doctors.
It should be pointed out that the pituitary gland sits at the base of the brain and prolactinomas are not technically considered "brain tumors" because they're not in the tissue of the brain. So it's a mischaracterization to keep referring to this as a "brain tumor" and a bit of an odd one for someone trying to start a medical research effort.
Unfortunately, the reality is that sometimes life just doesn't deal you a good hand. I think it's sad this man is talking about children when prolactinomas are a leading cause of infertility and it sounds like, for a variety of reasons, this man's girlfriend has one that is very difficult to treat. While it's OK to always hope, it's also possible to cling to false hope so strongly that it prevents you from accepting and moving forward with the life you have instead of the life you envisioned.
Agreed that initially referring to it as "brain tumor" would have been fine.
Thanks for sharing your story too, perhaps this condition isn't rare. Coincidentally I once went into bar and vaguely recognized a roommate I hadn't seen in years. His appearance had changed and he now had remarkable Hulk like features. I restrained myself from asking but I honestly thought he looked great.
We chatted and he shared that he had "brain surgery" 2 weeks(?) prior to remove a tumor on his pituitary gland. He just woke up one day and his vision was distorted. The next day he woke up blind which lead to him getting a diagnosis and surgery. The tumor had also caused pituitary disfunction which induced giantism.
If I recall, the surgery was performed going behind his nose through an incision in his mouth above the posterior of his upper lip which differs slightly from the approach in the OP. It's amazingly fortunate that this is an option given it looks inoperable from the MRI.
I'll also share that towards the end of our conversation he thanked me for not commenting on his appearance and that he was self-conscious. It's compelling, especially when someone looks good, to mention it, but there's no need to lead with it.
I imagine it's easier to some extent to put up the good fight / keep fighting rather than face the terrible unfairness of it all. But in focusing on the fight, I also wonder about being present in the reality with a partner.
If I understand it correctly, a prolactinoma can make it harder to have children mainly because high prolactin can disrupt ovulation, but it does not automatically mean having a child is impossible. In many cases, treatment brings prolactin back to normal and fertility can return. And if carrying a pregnancy is not possible for medical reasons, there can still be options like IVF, and having someone else carry the pregnancy where it is legal and appropriate. So it may be more complicated and it can be very hard in some cases, but it is not an absolute dead end. A hopeless tone is not very useful here because it can discourage people from exploring realistic options and evidence based treatment paths.
You're right, but per the post, this man's girlfriend was still struggling with elevated prolactin and it seems there is no clear "cure" for her at this point. She's been through multiple rounds of treatment and faces the prospect of more.
I didn't mean to sound hopeless but when you're in the midst of suffering from a medical condition and the future is uncertain, having your closest person focusing on something that isn't the immediate priority and that you may never be able to do can make you feel really horrible/inadequate.
Imagine you're the man's girlfriend. How would it make you feel if your SO was still talking to you about children at this stage?
That long duration stress from caring for a loved one with a potentially fatal illness is difficult to describe. I remember sharing that same driving thought of “if this goes south, will I honestly be able to say I did everything I could?”
Had a family member pass away and was part of their long term care team. The exact same thoughts came through my head too.
The 'funny' thing is that for the first few days, you can do a lot, but with medical stuff, it's mostly just waiting anyway. Even the first month, you can power through a lot. You become an expert fairly quickly at the little health thing. And then find that we know next to nothing about biology.
But after weeks, it's supprising how little you can do that is 'extra'. The grind really gets to you fast. And your putting your own needs away for just that little time catches up on you. You end up needing support quickly too. Not wanting support, needing it.
In the end I was able to hold my head high and say I absolutely did everything I possibly could, even to the point of needing help myself. I was just surprised at how little ways that went towards affecting the outcome.
There but for by Grace go I
How are you doing now? How long ago was it?
I'm... concerned for the health of this man. I appreciate his dedication, but I read a level of love that's pressing past caring for the human and into beating yourself up.
Did she ask you to cure this tumor? Did she ask you to post about it?
This is a common story in disability and chronic illness communities -- a partner gets so fixated on the illness they forget the human afflicted with it. The ill partner goes to the grave wishing their partner would stop fighting and start just spending their remaining time filling their lives with joy.
It leads to especially dark places when they don't succeed.
I wish him all the best, but don't lose sight of the human suffering the illness and what they want.
This post was actually really tough for me to read, because it read exactly like the suicide note a friend had sent me (and others) after his partner had died suddenly. It chronicled the joy and happiness in their relationship, her illness, his slow descent into desperation, and, after she passed, his resolve to follow her.
If the author of the post is reading these comments, your heart is in the right place, but just be careful and take care of yourself. Don't lose the forest for the trees.
I fully agree, there is something unsettling about this post and I can't put my finger on it, but here is an attempt:
His girlfriend is going through this medical issue, but he's made this post about himself? He's going to be the hero to save his GF and others with this brain tumor using the medical equivalent of vibe coding. I don't know, it just sounds immature and wrong
I’ve been here. I lost my wife to a metastatic tumor. He’s coping with the horror through determination to fight and win, and communicating it.
My person had 4 surgeries, countless MRIs, you name it. We had access to the best doctors in the US. There was no way she was going to not beat this thing. We booked a vacation and there was no doubt in my mind that we were going to be there. Until the day that changed.
The dude is a little unhinged. He’s trying to have some agency and control where none exists. He wants to save the girl he loves. So did I. Give him some grace.
Yup, you got it. I'm a survivor (so far) from a relapsed cancer myself. People have no idea of the kind of insanities you are willing to pursue in such desperate situations. Grace and forgiveness is the right approach here.
I don’t agree.
She has posted publicly about her condition.
He is 25 years old and trying to cope with a hard life event. Let’s not act like it doesn’t affect him. It affects everyone around her and the strong reaction from him is really a positive reflection on her, isn’t it?
His post is written and edited to garner sympathy and support. I don’t mind that for a naive but noble cause. And there is always a slim chance of success.
Oh, thank you. I wasn't able to figure it out exactly - at first I thought OK, the girlfriend died, that's why this post... But with her _alive_...
Re read it, it sounds like he's the victim: He was haunted during vacation. He was the rock. He fell into fetal position. I mean, sure, he's _a_ victim, but until she dies, if she dies, this is about her. Curing her is again about him and his want for kids.
> I mean, sure, he's _a_ victim, but until she dies, if she dies, this is about her.
Yes of course it's about him. That's often why people write things. My girlfriend died of cancer, and let me tell you it was pretty rough on me!
> I don't know, it just sounds immature and wrong
Isn't he like 25? My partner died of cancer when I was 37 and it was a pretty difficult time for me!
What would you suggest as an alternative? Just quietly follow the doctors' instructions and hope for the best?
> What would you suggest as an alternative?
Just keep trying, especially when others have given up
https://www.cnn.com/2025/09/08/us/video/treatment-cure-disea...
https://en.wikipedia.org/wiki/David_Fajgenbaum
> David C. Fajgenbaum (born March 29, 1985) is an American immunology researcher and author who is currently an assistant professor at the Perelman School of Medicine of the University of Pennsylvania.[1] He is best known for his research into Castleman disease.
He spent years studying the disease as a researcher. He's an exception, really.
A close friend is considered one of the best neurosurgeons at one of the best hospitals in the country. Brain tumors are his specialty. I remember him once saying he was growing exhausted about his job and thinking of retirement, even when he’s still young. The reason being, most of the other doctors in his team were not very competent and he had to constantly review and correct their work. He’s not an arrogant guy but all the contrary, very down to earth. For him to say something like that is because the mistakes he sees have to be bad. Every time he tried to quit, the hospital threw so much money at him that he could not refuse it.
> Every time he tried to quit, the hospital threw so much money at him that he could not refuse it.
Is there also not a reason for him to continue working to save all those people?
Especially so if the other doctors aren't competent and he has to review and correct their work!
Yes. Sometimes people just die, and you have no influence on that.
And sometimes the medical system’s inertia and default risk aversion keeps someone from an obvious diagnosis or treatment that could save them.
Sometimes strong advocacy is exactly what is needed.
And sometimes that advocacy is harmful, desperate, arrogant flailing—against the reality one knows is true with overwhelming likelihood—manifesting as "advocacy" or "will" that destroys so many chances for fully experiencing the reality of the precious, remaining, time one has (or one has with one's partner).
NOTE: This is not me disagreeing at all, just your point moved me to make the obvious counterpoint, having been through all this myself very literally and very recently. I know firsthand how important the advocacy is, but also how often it causes nothing but harm. There is a real tricky balance between agency vs acceptance when you've truly lost control of things, like in these cases.
Sure, and we probably all agree that these are personal decisions. If the OP wants to dedicate his life to working on this particular problem, great. Maybe he makes a meaningful contribution. Maybe he just helps his partner make better informed medical decisions. Even if you plan to follow standard of care, doctors often present choices that balance risk vs result.
Also, doctors split their time among patients and their various diseases. You, on the other hand, can focus your study on your disease. If you have a scientific mind, you can become an expert with enough study.
Heroism is not wrong. Let the man find meaning in life.
Exactly, the unsettling thing is the fixation in himself, what he thinks, what he already knew before everyone else, how important is the work he does, how he got the best doctors, and now he is going to cure his girlfriend's tumor. Couldn't make it past the half of it, frankly insufferable.
I think that for an average person a few years ago, probably there’s nothing meaningful they could have done.
For a smart VC with some money and with some knowledge of biology and willing to put in some hours, and with a disease that is “on the bubble”, i.e. not a slam dunk for modern medicine, but also not a death sentence, that there’s a decent chance that he can meaningfully improve the outcome.
I also see what you’re saying about the vibe and making it about himself, but that’s also helping him get attention… here we are talking about it. With more attention he’s going to get more skilled people helping her out.
I don't know, she is not terminal, she is in the part where the knowledge is lacking, so what he is doing is actually reasonable. Nobody knows anything, giving a shot to save the love of your life, with their approval, might be good, assuming you still spend time with them.
The symptoms if they came back would kill any hope for traveling anyway
It’s an innate human desire to do everything in one’s power to save the person you love.
If you had a feeling you could do more, would you not try?
When you’re not personally involved, it’s easy to see that this might be misguided, but when living through it and experiencing daily fear of loss of your partner, it’s extremely difficult to think logically.
I have seen this multiple times and it’s always so unbearably sad.
Hmm. Perhaps it serves as a commitment to post about this publicly? And as one other person mentioned, you have a far better chance of beating this today than just a few years ago, especially with some money and connections.
>It leads to especially dark places when they don't succeed.
The same can be said about child birth, and yet, people still make kids.
It's very possible that his partner is fully aware of and supportive of his mission. And I do agree that he should ensure that this is something his afflicted partner wants.
One point I want to make though is that even if someone embarks on a mission like this and fails, what they learn in the process — and uncover for the world at large — can help the next generation. It's not futile. It's not in vain.
Please be careful not to put words in my mouth.
Yes I was just adding, was not contradicting.
I often think that I would do the same thing if I or someone I loved had a chronic disease, either go all in in a specific project before I die, or go all in on a moonshot to accelerate a cure.
A subtle change that I think could have a lot of potential impact is changing it to "I'm going to try to cure".. instead of "I'm going to cure".
It will still be true, it will still be an act of love, but it removes the aspect of being a way to avoid the pain of a loss. In fact, if you face the likelihood of loss, then you will be able to actually optimize for increasing likelihood of a cure instead of risking optimizing for maximal coping mechanism.
I agree the way he writes about it is uncomfortable. At the same time I also think some people motivate themselves with a version of "Do or do not, there is no try." He desperately wants to do something, but a lot is simply out of his hands. Still, that energy has to go somewhere.
If we had a machine today with unlimited intelligence could it figure out a cure for cancer with our currently available data, or would it just request more data and ask us to conduct more studies? Is the bottleneck our ability to recognize patterns in the current data (i.e. intelligence) or the lack of sufficient data to determine a pattern? Or is it some other more nebulous thing that we aren’t considering?
IIRC this question is complicated by the fact that there are many types of cancer. There are probably some in either category.
A gross understatement. In approximate terms, cancer is any time cell proliferation goes off the rails. More possibilities than you can shake a stick at.
A bit like asking how close are we to being able to fix electronic devices that have lost their magic smoke.
Ok, pick one charitably. Is there any type of cancer whose cure could be found with an unlimited amount of intelligence but only the currently available data?
I’m personally convinced that at least for physics we have sufficient data for the next big theoretical breakthrough and we lack only the imagination and the computer power required to numerically validate the maths through simulations.
It feels an awful lot like the decade before Einstein’s landmark papers on quantum mechanics and relativity.
Watch how people like Terrence Tao et al are transforming how mathematics is done: with AI assistance and the Lean theorem prover, at a level of collaboration and consistency never before possible.
Something similar is just around the corner for the other sciences, the ability to mechanise the integration of vast tracts of previously disconnected facts and insights.
Surely something of value will pop out of the result…
Physics research is not particularly in a state of stagnation, so I’m not really sure what you mean by the “next big theoretical breakthrough”.
I firmly disagree:
No new successful fundamental theory has even gotten off the ground since the Standard Model, which is half a century old at this point.
Our understanding of gravity hasn’t improved substantially in a century. String Theory is dead, stop whipping it. Other quantum gravity theories each have one proponent going in circles futilely looking for a big breakthrough that never comes.
Superconductivity was discovered 115 years ago and we still don’t understand it! We’re “finding” new HT materials by accident and then attempting to explain how they work. Nobody can figure out how to predict a new one, ab initio.
Our understanding of the universe is improving only in the sense that we’re now more certain that we don’t know much at all about: its early history, far future, present behavior of gravity, or its content.
I’m not aware of any “sea change” akin to the scale and scope of QM or GR in many decades despite clear need for one.
Physics has stagnated for a long time now.
My conspiracy theory is that there has been a brain drain into the finance industry, but that doesn’t explain everything.
> No new successful fundamental theory has even gotten off the ground since the Standard Model, which is half a century old at this point.
How long has scientific inquiry about physics been going on? In that frame, is 50 years a long time or a short time?
This feels a bit like the perspective of a non-specialist with access to the findings that end up in the popular press vs. things that are discussed at conferences/in journals.
The volume of journal papers published isn't well-correlated with progress, sadly.
I have a physics degree and I regularly read the latest published research. Please don't make ad hominem attacks.
> How long has scientific inquiry about physics been going on? In that frame, is 50 years a long time or a short time?
Unlike all other sciences, on a long horizon, eventually Physics will be "completely solved", with no more fundamentals to discover, only applications, which are generally considered other sciences or engineering. We far from achieving this end-state.
The point is that we made giant strides every few years for decades, and then... nothing. The field has hardly advanced since the 1970s!
> I have a physics degree and I regularly read the latest published research. Please don't make ad hominem attacks.
It was not an attack, I just don't know the authority from which your comments derive (and there wasn't really evidence provided outside your opinion which I think others disagree with).
> The point is that we made giant strides every few years for decades, and then... nothing. The field has hardly advanced since the 1970s!
I think my subtle argument is that we've been writing for about 4,000 years, so something discovered in the last 50 years is relatively new.
Even limiting yourself to the current era of post-Enlightenment inquiry, 50 years is still relatively new.
Separately, if you truly accept that physics is completely knowable, then it would stand to reason that as we asymptotically approach knowing 'everything', the marginal rate of acquiring new knowledge would slow.
So I guess I don't see which way you are leaning - are we not learning things because we know everything, or are we being impatient and not recognizing how fast our progress has been?
> I think my subtle argument is that we've been writing for about 4,000 years, so something discovered in the last 50 years is relatively new.
Sure, but look at everything else: there's this beautifully smooth exponential curve that everybody is riding up into the stratosphere, but theoretical physicists seem to be staring up at the foundations from below.
To be fair, these are the hardest of hard problems: figuring out the substrate from the inside.
The only point I'm trying to make is that we've pushed things to the very edge of human cognitive capability. The mathematicians have figured out how to push past that with tooling. The physicists just need to find their own way to expand the boundaries with the new toys available.
I think what you mean to say is select topics in specific fields in physics have stagnated. Possibly because they are not necessarily the most interesting fields of study. Astrophysics is doing just fine, as one counter example.
> Astrophysics is doing just fine, as one counter example.
I would argue that almost all of that is due to improvements in instrumentation that have lead to no new fundamental theories with wide acceptance. If anything, several older theories are now being increasingly questioned, but with no viable alternatives. (Or too many viable alternatives.)
However, there have been many "medium sized" astrophysics theoretical achievements in recent decades, which puts astrophysics head and shoulders above much of the rest of physics.
I.e.: we now better understand the theory of elemental synthesis and can account for the origins of the entire periodic table, which is research from this century. That's pretty decent chunk of fundamental knowledge that we've acquired only recently!
jiggawatts says >"My conspiracy theory is that there has been a brain drain into the finance industry, but that doesn’t explain everything."<
If the top brains went into the finance industry wouldn't we by now have better theories of how an economy works? Prediction in economics seems far poorer than in physics.
Or perhaps economics is inherently a much more difficult problem than physics?
Yeah so I had family diagnosed with GBM and they went the denial route real hard. They got scammed out of mid six-digits by fraudsters offering some bogus cure, they didn't do anything on their bucket list, they spent the entire time telling themselves they were going to get better and didn't appreciate their last years at all, they didn't do things they had meant to do before they died because they were stuck with this idea that they could beat it. That sort of attitude can happen to family as well. Don't avoid reality by telling yourself you can fix it, because you'll miss what's important. In all overwhelming likelihood, you are not what oncology needed to cure GBM, and spending time and energy trying to cure it would be better spent with your loved one. This is it. This is what you have left with them. Get real.
I'll echo everyone else's concerns for the author (and wife of course). But I'm kind of concerned about the logic behind the plan? Is the idea to focus primarily on FDA approved compounds and convince doctors to give them to her off-label? Or a supplement or something they can just acquire easily?
Otherwise what's left? Hope your AI collaboration reveals novel untested compounds or interventions and somehow forgo all standard testing for safety and effectiveness and just produce and adminster them to her?
Obviously the goal would be to find some intervention that a) works b) has no serious lasting side effects. Hopefully the author and wife don't choose to forgo all other recommended treatments in the meantime hoping the AI driven clinical trials can be speedrun or that AI is so smart clinical trials are uneccesary.
My girlfriend also has this and I just found out my coworker has been dealing with it for some time. Has me wondering just how common it is
Prolactinomas, especially tiny ones, are super common. They often find them during autopsies. Most people with them experience no symptoms.
Are these deadly?
Not intrinsically or commonly deadly. https://www.hopkinsmedicine.org/health/conditions-and-diseas... says "1 in 10 people will develop a pituitary adenoma in their lifetime" - pituitary adenomas is the more general class of these benign tumors, as the pituitary gland produces multiple hormones.
1 in 10 sounds really common though, that's shocking.
People will go to the ends of the earth and back for someone they truly love. (Some people will even do it for hate, too!)
Thank you for sharing the story. I appreciate your taking the time to write out all of these things despite having to also do the work to combat the condition.
About the kids thing: Genetic causes for these are super hard to isolate but if, perchance, science sees fit to give us the information then you do have embryo selection available to make this choice safely.
Rooting for the two of you. And just wanted to thank you for the story. The sum of anecdotes often is the source for good hypotheses for science. I think you’re doing a good thing sharing what you’re doing.
If the author reads this: I’m sorry that you and your girlfriend are going through this.
I would strongly suggest seeing a therapist. I’ve experienced traumatising moments in life, and therapy has been a great help.
Radiation Therapy is an approved and working treatment for these tumors that he's discounting completely. Don't need AI to tell us that.
Please do what you need to do for your girlfriend. Not for yourself. Knowledge is great to navigate this mess. I am so sorry.
Don’t do this. Enjoy the time that you have together. Work with your doctors.
I had one of those when I was 14, I am 44 now. Every day is a blessing for me, but I cannot imagine what my family went through. Specially now that I am a dad myself.
I'm sorry, but LLMs aren't a magic spell that can solve the world's problems. If you are not a stranger to the biomedical world, then you understand that new treatments take at least a decade before they are treating patients with them out of trial. And the experts, they need experience actually administering these treatments in order to form the kind of opinions you describe them differing on. Plus there is a systemic logic to the way these things are developed. Profit. For example, no new anti-anxiety drugs have been created in 20 years, because it is cheaper to just test SSRIs that have passed FDA trials for other things like depression.
LLMs might be useful at generating text, but they cannot research, fund, develop, manufacture, educate, distribute, treat.
Like others have said, focus on speaking with your partner and deciding your plans together.
its very rational to say things to try and protect this person from himself. know that it is only that. rational.
if you think life is only rational its more likely lack of experience than knowing it better. Most of life, is infact not rational.
I'd want to tell him to save himself, but i do hope he saves her,.because regardless of anyone's words, he wont give up, maybe destroy himself too, and thats ok.
I am truly sorry how unfair life can sometimes be. I wish such things not on my worst enemies. I hope in some aspect of life Love will persist, prevail or return into your life OP.
I'm confused by this post because it seems like his partner got best therapy possible with two surgeries followed by medications without going blind or having other major hormonal issues which can happen after surgery. As correctly stated in this thread prolactinomas aren't a death sentence or even (technically) a brain tumour, and the major risks have been avoided so far. What exactly is being accomplished by a VC deeply researching this case beyond satisfying the valid desire to help your life partner?
While uncommon, people deeply researching their loved ones disease have had success: https://en.wikipedia.org/wiki/Augusto,_Michaela,_and_Lorenzo...
Even just fundraising for diseases yields tangible results. Some folks dismissed the viral ice bucket challenge, but it raised over $100 million dollars and funded a lot of research in ALS: https://en.wikipedia.org/wiki/Ice_Bucket_Challenge
Hopefully he accomplishes new knowledge discovery and/or fundraising for research into this disease.
Those efforts were for diseases without treatment. But, prolactinomas already have treatment (surgery plus medication). I always ask myself what is the desired outcome from research effort - in this case it seems to be an attempt to cure/totally eradicate a prolactinoma, which would require hundreds of millions of dollars and custom medication (probably immune checkpoint inhibitors) to do, and this disease already has a treatment available.
OP if you're reading this, your time is better spent advocating for your partner, being there for her and loving her.
We've been using "AI" in science far longer than you realise. We happily take on new tech at breath taking speed.
Don't waste your time, please just focus on her and not the disease.
I agree with you. Having lost a close family member to cancer over a period of years, the only regret I have is not trying more to improve her quality of life for as long as I could. Putting in effort to understand the diagnosis is warranted, but there are no miracle cures, even if there are miracles sometimes.
Not only are you're trying to keep a man from potentially achieving something, and not only are you also absolutely not considering how he'd feel not trying whatever he can, but you're also not considering what she thinks, feels or wants.
Not at all. I recognize the pattern. He wants to do something to control the thing he can’t control, it’s the same urge that leads people to magic diets and prayer going back to ancient times. Most of the time, your magic herb rich chicken soup is good for you and makes everyone feel a little better, whether or not it has anything to do with the disease.
Be he’s trying to play oncologist on TV with a cast of AI sidekicks to encourage him. This will not work. It will make him a less effective advocate within the medical system where he needs to focus on engaging experts, and drive him crazy in the meantime.
If the author is reading this, good luck. And fuck cancer.
why would you support a person in the sad psychosis, that they can ai their way to a solution of cancer, and that they can do so better than medical professional teams and research institutions at universities wth lots of expertise and lots of resources
I'm okay with that. I'd rather he spend every minute with her then waste his time trying to tech bro a solution.
It's even more disappointing to see the focus is LLM bullshit. He's not reaching out to current experts in the field to provide his expertise or funding, unfortunately he decided the best approach is, in my opinion, the most ludicrous approach. LLMs can synthesis huge amounts of knowledge, if it's useful a domain expert is using it to its full advantage.
My opinion is that LLMs are trash at generating any useful hypothesis beyond standard single degree ideas that anyone in the field would have.
I'd gladly eat my words. Maybe this post will be looked back on like the Dropbox comment. If LLMs could do such wonders, we would be entering a golden age.
> but you're also not considering what she thinks, feels or wants.
Im doing exactly that! I don't want her to see her partner be consumed by an endless and most likely fruitless quest.
Worst case scenario is what, he spends time with her? Oh the horror.
A hundred years ago he would be at church praying to god for a cure every day. He has replaced that with AI, the effect is the same. Looking for a solution/cure for when medicine has failed.
not to mention that "failed" implies that somehow death is not part of life. sure, going when we prefer would be better, and our descendants eventually will have this in some shape or form (digital uploads and backups and whatnot), but for now we have what we have.
This is officially the most unhinged LinkedIn post in the world. This is the winner.
He's probably really shaken that the future he imagined may not be in the cards for him and his partner.
I had a positive reaction to his post. The way he wants to spend his time seems more useful/meaningful/intentional than what most people choose to spend their time on. I hope he has success. While rare, others who have devoted themselves to studying the disease of a loved one have made meaningful progress: https://en.wikipedia.org/wiki/Augusto,_Michaela,_and_Lorenzo...
it’s only meaningful if there is progress made. the risk here, because this research is so personal, is that he spirals and spirals until he’s depressed or obsessed in an unhealthy way.
i wish him the best, truly, but i left the post feeling sad. if i was her i think i would prefer if my partner focused on being present and making the most of the situation. Stop trying to play superman.
This sounds a lot like "Lorenzo's Oil" https://en.wikipedia.org/wiki/Lorenzo%27s_Oil
Hopefully with a better end.
What an incredible story! Thank you for sharing. So much for that New Yorker cartoon “Honey, come quick, I found something all the scientists missed” (well, something all the scientists thought was infeasible anyway).
My girlfriend had a brain tumor, and a very long complicated medical history. When we met, she rattled, from all the pill bottles and was completly unfit. I did not set out to intervene but some of it was a bit much and was just wrong. I went to dozens of medical appointments, mri, cat scan, dog scan, the machine that goes "bing",her medical records would break your toe if you dropped them. All I did was read labels and research ingredients and offer cleaner alternatives and well, keeping up with me forced her to be a LOT more active, and she found she could do without the prescription and non prescription drugs and eating junk. That was 15 years ago, when she was planning her own pallitive care facility,(under medical supervision) We are no longer together, but she has two kids, and is working and active, no drugs, tumor is not detectable. I have some very strong personal feelings about the factory food, and always advocate for , whole, single ingredient food items, no sugar or other white crystaline substances, and a great deal of physical activity/working to capacity and a bit more. It is anecdata, but it is based on actions that have no failure mode, require nothing exotic, just the incrimental replacement of bad stuff with known healthy alternatives, but ending up living absolutly free of chemicals and factory food, zero plastics,or other synthetics,which is a not an easy thing to do. Another thing is that like the guy blogging this,I felt something stronly about her condition,but the flip, she had been diagnosed with the tumor, but I felt that she was actualy ok, under all of the surface medical problems and data, and I never did dispute anything, but very strongly defended the idea of actions that can pose no harm, ie: water not syrupy glop, brown rice, I dont care how long it takes to cook, etc,etc,etc. VS the outside concensus that if you are going to die,now, then this is permission to indulge in excess and small harms are now irellivant.
Good luck and godspeed my friend
best wishes..
some people do manage to cure their own disease sometimes.
reminds me of a friend who had IBS and was desperate to try a fecal transplant but no doctor would offer it. so her partner gave her one and it worked
At some point, every man comes face to face with the lie of his potency. We're told our willingness to turn ourselves into ruthless avatars of purpose makes us powerful. Unstoppable. We can do anything if the call is great enough. Is it suspicious that the call takes the voice of more powerful men? Pay it no mind. The world is yours for the taking.
Then, one day, the tide comes in. You learn what old men know. What women know. What every victim of circumstance knows. Sometimes the world just happens to you.
We're the leaves floating down the river. Sometimes we float through the sunshine in gentle water. Inevitably we crash through the rapids and down the waterfall. You can fight it, but you won't win. Like many in the thread are saying, the author of the post should be grateful for the good fortune that his partner is still alive, right now, and they can still be together. Every moment spent raging against the rapids means lost moments with the love of his life that he could regret forever.
There's something to be said for fighting for the people you love. We all should. But the fight needs to make sense, and I'm not sure fighting cancer on short order is the right fight.
Regardless, this situation hurts my heart. I feel for him, and her. Nature is ruthless.
Geez, you people. What would happen if you had encouraging and positive thoughts about a man who wants to do his best?
Would you burst into flames or something?
Since when did passivity become the new mental health?