7 ms·

Days of Awe: The clinical trial drug that might save my husband's life

105 points by LaurenSerino 3y ago

jemmyw 3y ago
That's a tragic story regardless of the medical hope. I don't think I would want to trade that level of discomfort for a little more time with my partner, but I couldn't say for sure.
- dghughes 3y ago
  My Dad had IPF a lung disease and struggled near the end mainly due to isolation at home. My Mom and myself were there but he missed his social outings like fishing and bargain hunting. Even struggling with his oxygen generator he fished struggling through mud and getting waders off and on. He was great until blood clots caused more issues like taking morphine to calm smooth muscle to help him breathe. Morphine just that tiny pill caused terrible constipation (opioids are terrible). My point being Dad would take anything just to feel even slightly better it meant he was still here. Death is terrifying and as long as you can limp along whatever makes it better is something people want. Really at that point you try to get to a point where you may just die in your sleep not knowing you did.
  - rokkitmensch 3y ago
    The "death is terrifying" social malady does have some FDA-unsanctioned treatments you might consider. Check in with your network's Elusinian priests for the traditional cautions.
    - dghughes 3y ago
      Not sure what a network in medical context is but here in Canada there is the option of medical assistance in dying (MAID). Dad considered it but as a Catholic and just as a choice by anyone it was even more terrifying than just a natural death. You have to make the active choice and I think that is what scared him. Plus at the time I wasn't really seeing the anxiety he had he was good at masking it. He died in palliative care with assistance for any pain which was more mental than physical.
  - freedomben 3y ago
    > opioids are terrible Why would you say something like this, especially given your dad's situation? yes they can cause constipation, but without opioids the pain would be much, much worse. To me it's a no-brainer, and nobody is forcing you to take opioids if you would rather the pain. I think opioids are a wonderful gift of nature to us and I'm immensely glad we have them. It terrifies me to think that we are so demonizing them now that they are withholding them from people who need them, and telling them to "take extra stength tylenol" instead. It's barbaric and cruel.
    - alach11 3y ago
      To me it seems pretty clear that the parent is saying "opioid [side effects] are terrible" after seeing how much suffering they caused their father.
    - dghughes 3y ago
      Sure if you take it out of context. >Morphine just that tiny pill caused terrible constipation (opioids are terrible)
      - freedomben 3y ago
        Fair enough, FWIW I wasn't trying to take it out of context. It seemed to me like a separate thread of thought being in the parens, but that's purely interpretive on my part. IMHO it would have been more clear to me your intention if you had said "(opioids are terrible for that)" or something similar. But that said I'm much too sensitive about the attacks on opiods because it's very much in the zeitgeist right now, and that would make me prone to defensiveness.
- Aloha 3y ago
  I understand the existential fear of the eternal dirt nap - but I dont care how much my loved one will miss me - because the quality of those last memories will be poor - and eternally painful to them, and will color the memories of me from the good times. Because of that, I would rather trade those moments of watching me die in the most agonizing, painful way imaginable, for the better memories - the times before I got sick. I watched my grandmother die, of cancer - there is nothing, literally nothing - that would allow me to put someone else thru that - at least not without their full consent, and making sure they knew of what was to come.
  - stephen_g 3y ago
    You never know how people will going to respond - on the other hand, if there was some chance for five year or whatever survival, the people you're closest to might never forgive you for not trying if you refuse treatment... You'd hope not, but you never know. Then there's the problem that some have a few of the people closest to them in one camp, fully accepting, and some in the other camp, which can be terrible (I've seen it especially with people I know where it's their parent who was dying, with different siblings going either way).
    - ifdefdebug 3y ago
      One of my nearest avoided the pain of dying from cancer and years of painful treatment simply by suiciding. It was hard to accept her choice not to stay with us for few more years, denying our care. But of course I forgave her. We all forgave her. Edit: better said, we had no business forgiving her or not, that would be the worst forms of entitlement I could imagine. What I mean is that we still love her, no hard feelings.
    - refurb 3y ago
      You never know how people will going to respond That’s the thing. You might read “drug extends median overall survival by 3 months”. Big deal right? Well that’s the median. In reality it looks more like: - 5% see a complete response (cure) - 40% see a partial response - 55% see no response And of those 40% who see a partial response the median is 3 months but the range is 1 to 29 months. So now do you do it? 1 in 20 chance of a cure and 1 in 20 chance of two more years of life and a 1 in 10 chance of 1 more year of life.
- pmarreck 3y ago
  I have to say, the impression I get is that she loves her partner far more than the mother of my son and I love each other, but perhaps even this is a double-edged sword
notamy 3y ago
[deleted, thank you for giving me more to read (: ]
- msmithstubbs 3y ago
  Jake has his own site where he shares his essays here: https://jakeseliger.com https://jakeseliger.com
  - notamy 3y ago
    Thank you! I’ll give it a read.
- SethMLarson 3y ago
  Jake has written their experience elsewhere (and is linked to many times in the article, too) for example: https://jakeseliger.com/2023/08/27/on-being-ready-to-die-and-yet-also-now-being-able-to-swallow-slurries-including-ice-cream/ https://jakeseliger.com/2023/08/27/on-being-ready-to-die-and...
  - notamy 3y ago
    Thank you (: I will be sure to read this.
- getoj 3y ago
  Suffering from a serious (physical or mental) illness and caring for a sufferer are obviously different experiences, but I don’t think the perspective of the direct sufferer automatically ought to take priority. Caring is it’s own thing, it’s hard and lonely, and often the carers suffer longer. In the case of mental illness, the patient may forget the worst of what happened, and only the carer remembers literally pulling them back from the brink. In the case of physical illness, the patient’s death is not even the half way mark for the carer’s experience. My point is not to say that patients have it easy, but that both parties have their burdens to bear, and it is not necessary for every essay to cover both sides. Edit: I see you have deleted your comment, which is a shame, I don’t think you should be afraid to express this sentiment.
denhaus 3y ago
i’ve been following Jake’s story since one of his posts was here on HN a few months ago. Both him and his wife are excellent writers. I cannot emphasize enough how horrified I am reading every word. What an utterly ghastly experience. I watched my uncle die from cancer as well. I am all too familiar with how this (usually) goes in the end stages. good luck, jake. may your days be filled with appreciation and love and tranquility.
dsign 3y ago
I have never understood how can we, in the same breath, admit the horrifying death that await us all, and also parrot that Gilgamesh story or the like about how futile is to resist. Sure, the blood of the virgins doesn't work, but now we have incredibly good science and technology. For God's sake, we even have enough compute to run monstrous language models; I have an inkling that kind of compute would go a long way on simulating cellular processes. Shouldn't we all[1] just go a bit crazy and start trying to prevent our little, chaotic sacks of bio-molecules from going amok? [^1]:"All", as opposed to just scientists and clinicians.
- strogonoff 3y ago
  “Let us grant that this woman is correct about the science and that the project is technologically possible, although I don’t think that has actually been proven. Now she desires that we get rid of the dragon. Presumably, she thinks she’s got the right not to be chewed up by the dragon. How willful and presumptuous. The finitude of human life is a blessing for every individual, whether he knows it or not. Getting rid of the dragon, which might seem like such a convenient thing to do, would undermine our human dignity. The preoccupation with killing the dragon will deflect us from realizing more fully the aspirations to which our lives naturally point, from living well rather than merely staying alive. It is debasing, yes debasing, for a person to want to continue his or her mediocre life for as long as possible without worrying about some of the higher questions about what life is to be used for. But I tell you, the nature of the dragon is to eat humans, and our own species-specified nature is truly and nobly fulfilled only by getting eaten by it...” https://nickbostrom.com/fable/dragon https://nickbostrom.com/fable/dragon
  - RealityVoid 3y ago
    You could live just well without a dragon alive. It's just that it's easy to assume things will always be the way you have known them and that the absence of this or that constraint would render things meaningless. Bollocks, I say to that!
    - strogonoff 3y ago
mft_ 3y ago
> "I’ve made hundreds of phone calls and e-mails, pleaded with physicians, pharmaceutical companies and clinical investigators. I’ve begged for appointments to establish care, open trial slots, opportunities to be screened for eligibility—really—for Jake’s life." This just shouldn't be necessary. In 2023, we as a race should be able to figure out a better way to efficiently channel patients with needs towards clinical trials that might serve those needs. (And I say this as someone who works in this industry.)
- ballenf 3y ago
  When someone says "it's [current year] so [bad thing] should have stopped by now", I get confused. It feels like it's implying that humans today are fundamentally different from humans in the past. In fact it feels dangerous to me that we often speak of ourselves as almost a different species from humans in history. From an evolutionary perspective humans from any moment in recorded history are basically indistinguishable. Our brain capacity hasn't changed. We're not kinder. We're not less selfish. We do know more about many things (and less about some things). We have better tools. We've refined more matter into new forms. We have access to more useful energy. But those changes don't change who people are. No human at any point in history should be content with the state of things, but I don't think that struggle is easier today than it ever has been. We're pushing the boulder up the hill and we'll never reach the top, but should never stop pushing. Being in the industry, I'm glad you're not content with the state of things. It takes people like you, so thank you for your effort to make our world a better place. Even if we may disagree with nuances of the motivation.
  - ryukafalz 3y ago
    > It feels like it's implying that humans today are fundamentally different from humans in the past. In fact it feels dangerous to me that we often speak of ourselves as almost a different species from humans in history. From an evolutionary perspective humans from any moment in recorded history are basically indistinguishable. Our brain capacity hasn't changed. We're not kinder. We're not less selfish. When people say this (myself included), I think it's a normative statement, not a positive one. Of course we're the same humans we have been for thousands of years. But the act of calling out our failings as a society can itself, sometimes, spur people to try to change it for the better. In 2023, we are (positively) essentially the same as our ancestors. But also in 2023, we should (normatively) strive to be better than them, and to be conscious of our failings when we don't.
omgmajk 3y ago
I find myself checking if this guy is alive or not a few times a week. It's all very sad.
foxtrottbravo 3y ago
Those articles by both Jake and his wive are so well written and I would love to read them fully but I can't. It's gut wrenching that I am just a CT scan away to being in the same (somewhat comparable) situation. I shouldn't compare fates and still my mind wanders around the topic every time. The facts they both present in a scientific manner (like remission rates) scare me to my bone. I cannot fathom what he and his loved ones are going through and that makes it even clearer what I have burdened on my wife, children and family. I know this comment is ultimately me shouting "please let us both live" with many words and maybe this is me being a self serving asshole, maybe it is that. I don't know anymore. I would love to offer the promise that everything is going to be alright but I cannot. I am just scared as hell and somehow I needed to get this out.

105 points by LaurenSerino 3y ago

That's a tragic story regardless of the medical hope. I don't think I would want to trade that level of discomfort for a little more time with my partner, but I couldn't say for sure.

dghughes 3y ago
My Dad had IPF a lung disease and struggled near the end mainly due to isolation at home. My Mom and myself were there but he missed his social outings like fishing and bargain hunting. Even struggling with his oxygen generator he fished struggling through mud and getting waders off and on. He was great until blood clots caused more issues like taking morphine to calm smooth muscle to help him breathe. Morphine just that tiny pill caused terrible constipation (opioids are terrible). My point being Dad would take anything just to feel even slightly better it meant he was still here. Death is terrifying and as long as you can limp along whatever makes it better is something people want. Really at that point you try to get to a point where you may just die in your sleep not knowing you did.
- rokkitmensch 3y ago
  The "death is terrifying" social malady does have some FDA-unsanctioned treatments you might consider. Check in with your network's Elusinian priests for the traditional cautions.
  - dghughes 3y ago
    Not sure what a network in medical context is but here in Canada there is the option of medical assistance in dying (MAID). Dad considered it but as a Catholic and just as a choice by anyone it was even more terrifying than just a natural death. You have to make the active choice and I think that is what scared him. Plus at the time I wasn't really seeing the anxiety he had he was good at masking it. He died in palliative care with assistance for any pain which was more mental than physical.
- freedomben 3y ago
  > opioids are terrible Why would you say something like this, especially given your dad's situation? yes they can cause constipation, but without opioids the pain would be much, much worse. To me it's a no-brainer, and nobody is forcing you to take opioids if you would rather the pain. I think opioids are a wonderful gift of nature to us and I'm immensely glad we have them. It terrifies me to think that we are so demonizing them now that they are withholding them from people who need them, and telling them to "take extra stength tylenol" instead. It's barbaric and cruel.
  - alach11 3y ago
    To me it seems pretty clear that the parent is saying "opioid [side effects] are terrible" after seeing how much suffering they caused their father.
  - dghughes 3y ago
    Sure if you take it out of context. >Morphine just that tiny pill caused terrible constipation (opioids are terrible)
    - freedomben 3y ago
      Fair enough, FWIW I wasn't trying to take it out of context. It seemed to me like a separate thread of thought being in the parens, but that's purely interpretive on my part. IMHO it would have been more clear to me your intention if you had said "(opioids are terrible for that)" or something similar. But that said I'm much too sensitive about the attacks on opiods because it's very much in the zeitgeist right now, and that would make me prone to defensiveness.
Aloha 3y ago
I understand the existential fear of the eternal dirt nap - but I dont care how much my loved one will miss me - because the quality of those last memories will be poor - and eternally painful to them, and will color the memories of me from the good times. Because of that, I would rather trade those moments of watching me die in the most agonizing, painful way imaginable, for the better memories - the times before I got sick. I watched my grandmother die, of cancer - there is nothing, literally nothing - that would allow me to put someone else thru that - at least not without their full consent, and making sure they knew of what was to come.
- stephen_g 3y ago
  You never know how people will going to respond - on the other hand, if there was some chance for five year or whatever survival, the people you're closest to might never forgive you for not trying if you refuse treatment... You'd hope not, but you never know. Then there's the problem that some have a few of the people closest to them in one camp, fully accepting, and some in the other camp, which can be terrible (I've seen it especially with people I know where it's their parent who was dying, with different siblings going either way).
  - ifdefdebug 3y ago
    One of my nearest avoided the pain of dying from cancer and years of painful treatment simply by suiciding. It was hard to accept her choice not to stay with us for few more years, denying our care. But of course I forgave her. We all forgave her. Edit: better said, we had no business forgiving her or not, that would be the worst forms of entitlement I could imagine. What I mean is that we still love her, no hard feelings.
  - refurb 3y ago
    You never know how people will going to respond That’s the thing. You might read “drug extends median overall survival by 3 months”. Big deal right? Well that’s the median. In reality it looks more like: - 5% see a complete response (cure) - 40% see a partial response - 55% see no response And of those 40% who see a partial response the median is 3 months but the range is 1 to 29 months. So now do you do it? 1 in 20 chance of a cure and 1 in 20 chance of two more years of life and a 1 in 10 chance of 1 more year of life.
pmarreck 3y ago
I have to say, the impression I get is that she loves her partner far more than the mother of my son and I love each other, but perhaps even this is a double-edged sword

notamy 3y ago

[deleted, thank you for giving me more to read (: ]

msmithstubbs 3y ago
Jake has his own site where he shares his essays here: https://jakeseliger.com https://jakeseliger.com
- notamy 3y ago
  Thank you! I’ll give it a read.
SethMLarson 3y ago
Jake has written their experience elsewhere (and is linked to many times in the article, too) for example: https://jakeseliger.com/2023/08/27/on-being-ready-to-die-and-yet-also-now-being-able-to-swallow-slurries-including-ice-cream/ https://jakeseliger.com/2023/08/27/on-being-ready-to-die-and...
- notamy 3y ago
  Thank you (: I will be sure to read this.
getoj 3y ago
Suffering from a serious (physical or mental) illness and caring for a sufferer are obviously different experiences, but I don’t think the perspective of the direct sufferer automatically ought to take priority. Caring is it’s own thing, it’s hard and lonely, and often the carers suffer longer. In the case of mental illness, the patient may forget the worst of what happened, and only the carer remembers literally pulling them back from the brink. In the case of physical illness, the patient’s death is not even the half way mark for the carer’s experience. My point is not to say that patients have it easy, but that both parties have their burdens to bear, and it is not necessary for every essay to cover both sides. Edit: I see you have deleted your comment, which is a shame, I don’t think you should be afraid to express this sentiment.

denhaus 3y ago

i’ve been following Jake’s story since one of his posts was here on HN a few months ago. Both him and his wife are excellent writers. I cannot emphasize enough how horrified I am reading every word. What an utterly ghastly experience. I watched my uncle die from cancer as well. I am all too familiar with how this (usually) goes in the end stages. good luck, jake. may your days be filled with appreciation and love and tranquility.

dsign 3y ago

I have never understood how can we, in the same breath, admit the horrifying death that await us all, and also parrot that Gilgamesh story or the like about how futile is to resist. Sure, the blood of the virgins doesn't work, but now we have incredibly good science and technology. For God's sake, we even have enough compute to run monstrous language models; I have an inkling that kind of compute would go a long way on simulating cellular processes. Shouldn't we all[1] just go a bit crazy and start trying to prevent our little, chaotic sacks of bio-molecules from going amok? [^1]:"All", as opposed to just scientists and clinicians.

strogonoff 3y ago
“Let us grant that this woman is correct about the science and that the project is technologically possible, although I don’t think that has actually been proven. Now she desires that we get rid of the dragon. Presumably, she thinks she’s got the right not to be chewed up by the dragon. How willful and presumptuous. The finitude of human life is a blessing for every individual, whether he knows it or not. Getting rid of the dragon, which might seem like such a convenient thing to do, would undermine our human dignity. The preoccupation with killing the dragon will deflect us from realizing more fully the aspirations to which our lives naturally point, from living well rather than merely staying alive. It is debasing, yes debasing, for a person to want to continue his or her mediocre life for as long as possible without worrying about some of the higher questions about what life is to be used for. But I tell you, the nature of the dragon is to eat humans, and our own species-specified nature is truly and nobly fulfilled only by getting eaten by it...” https://nickbostrom.com/fable/dragon https://nickbostrom.com/fable/dragon
- RealityVoid 3y ago
  You could live just well without a dragon alive. It's just that it's easy to assume things will always be the way you have known them and that the absence of this or that constraint would render things meaningless. Bollocks, I say to that!
  - strogonoff 3y ago

mft_ 3y ago

> "I’ve made hundreds of phone calls and e-mails, pleaded with physicians, pharmaceutical companies and clinical investigators. I’ve begged for appointments to establish care, open trial slots, opportunities to be screened for eligibility—really—for Jake’s life." This just shouldn't be necessary. In 2023, we as a race should be able to figure out a better way to efficiently channel patients with needs towards clinical trials that might serve those needs. (And I say this as someone who works in this industry.)

ballenf 3y ago
When someone says "it's [current year] so [bad thing] should have stopped by now", I get confused. It feels like it's implying that humans today are fundamentally different from humans in the past. In fact it feels dangerous to me that we often speak of ourselves as almost a different species from humans in history. From an evolutionary perspective humans from any moment in recorded history are basically indistinguishable. Our brain capacity hasn't changed. We're not kinder. We're not less selfish. We do know more about many things (and less about some things). We have better tools. We've refined more matter into new forms. We have access to more useful energy. But those changes don't change who people are. No human at any point in history should be content with the state of things, but I don't think that struggle is easier today than it ever has been. We're pushing the boulder up the hill and we'll never reach the top, but should never stop pushing. Being in the industry, I'm glad you're not content with the state of things. It takes people like you, so thank you for your effort to make our world a better place. Even if we may disagree with nuances of the motivation.
- ryukafalz 3y ago
  > It feels like it's implying that humans today are fundamentally different from humans in the past. In fact it feels dangerous to me that we often speak of ourselves as almost a different species from humans in history. From an evolutionary perspective humans from any moment in recorded history are basically indistinguishable. Our brain capacity hasn't changed. We're not kinder. We're not less selfish. When people say this (myself included), I think it's a normative statement, not a positive one. Of course we're the same humans we have been for thousands of years. But the act of calling out our failings as a society can itself, sometimes, spur people to try to change it for the better. In 2023, we are (positively) essentially the same as our ancestors. But also in 2023, we should (normatively) strive to be better than them, and to be conscious of our failings when we don't.

omgmajk 3y ago

I find myself checking if this guy is alive or not a few times a week. It's all very sad.

foxtrottbravo 3y ago

Those articles by both Jake and his wive are so well written and I would love to read them fully but I can't. It's gut wrenching that I am just a CT scan away to being in the same (somewhat comparable) situation. I shouldn't compare fates and still my mind wanders around the topic every time. The facts they both present in a scientific manner (like remission rates) scare me to my bone. I cannot fathom what he and his loved ones are going through and that makes it even clearer what I have burdened on my wife, children and family. I know this comment is ultimately me shouting "please let us both live" with many words and maybe this is me being a self serving asshole, maybe it is that. I don't know anymore. I would love to offer the promise that everything is going to be alright but I cannot. I am just scared as hell and somehow I needed to get this out.