8 ms·

I'm going to cure my girlfriend's brain tumor

148 points by ray__ 8mo ago

abracadaniel 8mo ago
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?”
- esseph 8mo ago
  How are you doing now? How long ago was it?
- Balgair 8mo ago
  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
ahhhhnoooo 8mo ago
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.
- ETH_start 8mo ago
  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.
  - ahhhhnoooo 8mo ago
    Please be careful not to put words in my mouth.
    - ETH_start 8mo ago
      Yes I was just adding, was not contradicting.
- TZubiri 8mo ago
  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.
  - fallinghawks 8mo ago
    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.
- BrokenCogs 8mo ago
curioussavage 8mo ago
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
- LoganDark 8mo ago
  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!)
- ElProlactin 8mo ago
  Prolactinomas, especially tiny ones, are super common. They often find them during autopsies. Most people with them experience no symptoms.
  - Fire-Dragon-DoL 8mo ago
    Are these deadly?
    - davidgay 8mo ago
      Not intrinsically or commonly deadly. https://www.hopkinsmedicine.org/health/conditions-and-diseases/pituitary-adenoma 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.
      - Fire-Dragon-DoL 8mo ago
        1 in 10 sounds really common though, that's shocking.
ElProlactin 8mo ago
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.
- hsuduebc2 8mo ago
  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.
  - ElProlactin 8mo ago
    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?
Izikiel43 8mo ago
This sounds a lot like "Lorenzo's Oil" https://en.wikipedia.org/wiki/Lorenzo%27s_Oil https://en.wikipedia.org/wiki/Lorenzo%27s_Oil Hopefully with a better end.
- arjie 8mo ago
  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).
  - Izikiel43 8mo ago
    It's a very sad story. 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.
an0malous 8mo ago
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?
- jiggawatts 8mo ago
  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…
  - catlifeonmars 8mo ago
    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”.
    - jiggawatts 8mo ago
      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.
idontwantthis 8mo ago
This is officially the most unhinged LinkedIn post in the world. This is the winner.
- MyHypatia 8mo ago
  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_Odone https://en.wikipedia.org/wiki/Augusto,_Michaela,_and_Lorenzo...
  - lurking_swe 8mo ago
    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.
    - cindyllm 8mo ago
      [dead]
sgentle 8mo ago
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.
- steve_adams_86 8mo ago
  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.
  - satisfice 8mo ago
    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?
    - steve_adams_86 8mo ago
      It's passivity about things you can't control. I'm all for engaging with things within my control. I just spent the morning under my car replacing CV axles because I wanted it done faster, for less, on my own schedule. Why sit around waiting? I suppose what I'm advocating here isn't passivity at all, but engaging in loving his partner in ways that would matter to her while he still can. That can be a very active and engaged way of handling this. After watching several family members die from cancer though, the notion of fighting that rather than being with my family as they pass sounds terrible. At some point you have to accept that death is on the way. Love people while they're here. Curing cancer is a generational goal accomplished by huge numbers of people, hopefully, not a single person in short order. I have very positive thoughts about his love and concern, too. I just hope it's put to good use while it still can be. Also, he reminds me of my dad who was similarly convinced if he cared for my mom just right she'd be okay. It has been almost 20 years and he still hates himself for it. There was no stopping it. There's no sense in having these expectations of yourself.
greazy 8mo ago
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.
- NedF 8mo ago
  [dead]
- 5o1ecist 8mo ago
  [flagged]
  - greazy 8mo ago
    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.
    - bri3k 8mo ago
      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.
arjie 8mo ago
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.
agumonkey 8mo ago
best wishes.. some people do manage to cure their own disease sometimes.
woeirua 8mo ago
Don’t do this. Enjoy the time that you have together. Work with your doctors.
NedF 8mo ago
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quantumwoke 8mo ago
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?
- MyHypatia 8mo ago
  While uncommon, people deeply researching their loved ones disease have had success: https://en.wikipedia.org/wiki/Augusto,_Michaela,_and_Lorenzo_Odone 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 https://en.wikipedia.org/wiki/Ice_Bucket_Challenge Hopefully he accomplishes new knowledge discovery and/or fundraising for research into this disease.
  - quantumwoke 8mo ago
    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.
    - MyHypatia 8mo ago
      A treatment is available but it doesn't seem to work in some cases. The author of the post is motivated to improve that. Honestly, I feel happy when people choose to spend their time trying to solve these types of problems instead of working on things they may not be that interested in or on problems where success doesn't really yield a real benefit to humanity. Maybe, he spends a lot of time on it and doesn't have success. That seems better to me than spending time on something he doesn't really care about.
maxkfranz 8mo ago
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.
arikrahman 8mo ago
Good luck and godspeed my friend
zippyman55 8mo ago
Please do what you need to do for your girlfriend. Not for yourself. Knowledge is great to navigate this mess. I am so sorry.
ainiriand 8mo ago
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.
modzu 8mo ago
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
helterskelter 8mo ago
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.
tkel 8mo ago
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.
metalman 8mo ago
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.
saidnooneever 8mo ago
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.
gbnwl 8mo ago
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.
owenthejumper 8mo ago
Radiation Therapy is an approved and working treatment for these tumors that he's discounting completely. Don't need AI to tell us that.

148 points by ray__ 8mo ago

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?”

esseph 8mo ago
How are you doing now? How long ago was it?
Balgair 8mo ago
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

ahhhhnoooo 8mo ago

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.

ETH_start 8mo ago
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.
- ahhhhnoooo 8mo ago
  Please be careful not to put words in my mouth.
  - ETH_start 8mo ago
    Yes I was just adding, was not contradicting.
TZubiri 8mo ago
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.
- fallinghawks 8mo ago
  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.
BrokenCogs 8mo ago

curioussavage 8mo ago

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

LoganDark 8mo ago
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!)
ElProlactin 8mo ago
Prolactinomas, especially tiny ones, are super common. They often find them during autopsies. Most people with them experience no symptoms.
- Fire-Dragon-DoL 8mo ago
  Are these deadly?
  - davidgay 8mo ago
    Not intrinsically or commonly deadly. https://www.hopkinsmedicine.org/health/conditions-and-diseases/pituitary-adenoma 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.
    - Fire-Dragon-DoL 8mo ago
      1 in 10 sounds really common though, that's shocking.

ElProlactin 8mo ago

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.

hsuduebc2 8mo ago
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.
- ElProlactin 8mo ago
  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?

Izikiel43 8mo ago

This sounds a lot like "Lorenzo's Oil" https://en.wikipedia.org/wiki/Lorenzo%27s_Oil https://en.wikipedia.org/wiki/Lorenzo%27s_Oil Hopefully with a better end.

arjie 8mo ago
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).
- Izikiel43 8mo ago
  It's a very sad story. 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.

an0malous 8mo ago

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?

jiggawatts 8mo ago
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…
- catlifeonmars 8mo ago
  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”.
  - jiggawatts 8mo ago
    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.

idontwantthis 8mo ago

This is officially the most unhinged LinkedIn post in the world. This is the winner.

MyHypatia 8mo ago
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_Odone https://en.wikipedia.org/wiki/Augusto,_Michaela,_and_Lorenzo...
- lurking_swe 8mo ago
  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.
  - cindyllm 8mo ago
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sgentle 8mo ago

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.

steve_adams_86 8mo ago
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.
- satisfice 8mo ago
  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?
  - steve_adams_86 8mo ago
    It's passivity about things you can't control. I'm all for engaging with things within my control. I just spent the morning under my car replacing CV axles because I wanted it done faster, for less, on my own schedule. Why sit around waiting? I suppose what I'm advocating here isn't passivity at all, but engaging in loving his partner in ways that would matter to her while he still can. That can be a very active and engaged way of handling this. After watching several family members die from cancer though, the notion of fighting that rather than being with my family as they pass sounds terrible. At some point you have to accept that death is on the way. Love people while they're here. Curing cancer is a generational goal accomplished by huge numbers of people, hopefully, not a single person in short order. I have very positive thoughts about his love and concern, too. I just hope it's put to good use while it still can be. Also, he reminds me of my dad who was similarly convinced if he cared for my mom just right she'd be okay. It has been almost 20 years and he still hates himself for it. There was no stopping it. There's no sense in having these expectations of yourself.

greazy 8mo ago

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.

NedF 8mo ago
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5o1ecist 8mo ago
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- greazy 8mo ago
  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.
  - bri3k 8mo ago
    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.

arjie 8mo ago

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.

agumonkey 8mo ago

best wishes.. some people do manage to cure their own disease sometimes.

woeirua 8mo ago

Don’t do this. Enjoy the time that you have together. Work with your doctors.

NedF 8mo ago

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quantumwoke 8mo ago

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?

MyHypatia 8mo ago
While uncommon, people deeply researching their loved ones disease have had success: https://en.wikipedia.org/wiki/Augusto,_Michaela,_and_Lorenzo_Odone 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 https://en.wikipedia.org/wiki/Ice_Bucket_Challenge Hopefully he accomplishes new knowledge discovery and/or fundraising for research into this disease.
- quantumwoke 8mo ago
  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.
  - MyHypatia 8mo ago
    A treatment is available but it doesn't seem to work in some cases. The author of the post is motivated to improve that. Honestly, I feel happy when people choose to spend their time trying to solve these types of problems instead of working on things they may not be that interested in or on problems where success doesn't really yield a real benefit to humanity. Maybe, he spends a lot of time on it and doesn't have success. That seems better to me than spending time on something he doesn't really care about.

maxkfranz 8mo ago

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.

arikrahman 8mo ago

Good luck and godspeed my friend

zippyman55 8mo ago

Please do what you need to do for your girlfriend. Not for yourself. Knowledge is great to navigate this mess. I am so sorry.

ainiriand 8mo ago

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.

modzu 8mo ago

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

helterskelter 8mo ago

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.

tkel 8mo ago

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.

metalman 8mo ago

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.

saidnooneever 8mo ago

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.

gbnwl 8mo ago

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.

owenthejumper 8mo ago

Radiation Therapy is an approved and working treatment for these tumors that he's discounting completely. Don't need AI to tell us that.