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 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.

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.

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

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.

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.

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.

IIRC this question is complicated by the fact that there are many types of cancer. There are probably some in either category.

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…

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.

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.

How are you doing now? How long ago was it?

Prolactinomas, especially tiny ones, are super common. They often find them during autopsies. Most people with them experience no symptoms.

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!)

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).