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.
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 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?
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.
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.
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
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.
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.
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.
Isn't he like 25? My partner died of cancer when I was 37 and it was a pretty difficult time for me!
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.
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.
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.
The symptoms if they came back would kill any hope for traveling anyway
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.
>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.
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
A bit like asking how close are we to being able to fix electronic devices that have lost their magic smoke.
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…
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.
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.
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 would strongly suggest seeing a therapist. I’ve experienced traumatising moments in life, and therapy has been a great help.
Hopefully with a better end.
The findings their parents do end up helping millions of other children in the early stages of the disease, but their son was too far gone for it to be effective.
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...
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.
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.
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.
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.
some people do manage to cure their own disease sometimes.
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.
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.
Would you burst into flames or something?
Since when did passivity become the new mental health?
