16 ms·

Leukemia Has Won

1012 points by yagodragon 8y ago

codyarsenault 8y ago
https://www.facebook.com/groups/416702921703509/ https://www.facebook.com/groups/416702921703509/ Cannabis oil may help you. This group has loads of info. Just search / post for leukemia. Lots to read.
libpcap 8y ago
Is there a chance of a liver transplant?
- bemeurer 8y ago
  The fact that he mentions GvHD would indicate that not to be an option, unfortunately. IANAD.
  - soy_comptroller 8y ago
    100% not the same as Alex's sad situation, but for kidneys a dual stem-cell-transplant and kidney-transplant has been done[1]. It was NOT done due to cancer (but due to kidney scarcity) and was NOT done for the liver. I don't think it could ever even be done for the liver because stem-cell-transplant cannot (to the best of my knowledge) be done from a cadaver-donor. Maybe some medical center would be willing to try a living-donor for SCT and partial-liver...but I'm not sure it would get past the ethics committee. [1] https://clinicaltrials.gov/ct2/show/NCT00319657 https://clinicaltrials.gov/ct2/show/NCT00319657
- JohnGB 8y ago
  I'm not an expert here, but I doubt that he would qualify for a transplant given the heavy toll that the future leukemia treatment would put on the transplanted liver. It's sad, but sometimes there really aren't any more options.
- m-p-3 8y ago
  Unlikely, as his cancer diagnosis puts him below other patients with an higher chance of survival, and the chemo will likely be too much for a patient recovering from a transplant. Lab-grown organs can't come soon enough :(
- deleted 8y ago
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- pvaldes 8y ago
  Warning! This is not a replacement for medical advice and I could be wrong. This is not my speciality! If I'm understanding correctly seems like Mr. Mills had a marrow transplant, and the white cells in the marrow from the donor had attacked his liver. Chemoterapy is a poison, and liver's work is to deal and be distroyed by poisons, so this does not help. Without donor's white cells, the Leukemia gets worse, but without liver, people die fast. It seems that restoring liver function would be the higher priority now. Liver has evolved to be destroyed and regenerated. Is able to create new hepatocites massively if needed. Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks. Is an awesome organ if we think about it. The options are, I suppose, a liver transplant/liver graft, that is expensive procedure but very effective. or a liver support device that could buy a precious time until a liver donor is available It seems that in USA there are around 4000 liver available from donors each year, and a list of around 17000 receptors. Liver transplant is expensive. You need to invest maybe $12000-250000 only for the operating teather part. Plus post-operatory procedures. An alternative could be to take a chunk of liver of Mr. Mills and cultivate it in a laboratory, far from chemoterapy and vicious white cells and then create a bio-system that could act as an artificial liver for some time. A possibility maybe could be to make a self-transplant in the future. Even small chunks can regenerate a much bigger chunk of liver Several types of artificial livers could help also to alleviate the liver work, like a Molecular Adsorbents Recirculation System (MARS) or/and fractionated plasma separation and adsorption (FPSA, Prometheus)
  - gnulinux 8y ago
    This is a question coming from complete layman. In fact, I'm ashamed to ask such a stupid question. But I'm still curious: > Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks. Does this mean it's possible for one to donate liver (say, half a liver) and live like nothing happened (except a scar)? Then why don't everyone donate their liver like this? Why are there only 4000 livers in the US?
    - soy_comptroller 8y ago
      You can donate part of the liver, but it isn't "like nothing ever happened". This followup[1] of donors from 2011 found that 53% suffered long-term complications (though 93% would have gone through with it again). Notably missing from those stats is the percentage of donors who died after donation, either due to direct effects, indirect effects, or totally unrelated things. Donating one of your two kidneys is maybe a "like nothing happened" experience, but donating a partial liver is much more complicated with worse outcomes. [1] https://journals.lww.com/annalsofsurgery/Abstract/2011/11000/Long_Term_Follow_Up_After_Right_Hepatectomy_for.3.aspx https://journals.lww.com/annalsofsurgery/Abstract/2011/11000...
vermontdevil 8y ago
So sad. But good to see you’ll be home and comfortable with your loved ones than at a bland hospital room. Godspeed.
Bucephalus355 8y ago
Whenever I’m studying a given topic, I like to buy maybe 6 or 7 books on it to skim-read from someplace where that’s afforable like HPB or Thriftbooks. Gives you a good overview of field and also each of the books fills in the holes of the other books. Recently did this on the topic of “cancer”. All recent books published in the last 15 years by Big 5 Publishers. Every single book had intense criticism for the NIH. It seems they do a lot of good, but their singular focus on only funding “hypothesis based research” has driven and then kept extremely promising ideas on the sidelines for 25 years. Very sad to read at times, and made me really appreciate how scientific progress comes in amazing bursts that are short lived but that everyone depends on for decades to come. EDIT: Kind of astonished by the downvotes. This book goes into more detail: https://www.amazon.com/dp/0374135606/ https://www.amazon.com/dp/0374135606/ Also something else I forgot to add is how the death rate from cancer really hasn’t budged in 20 years by being generously massaged via something known as “average death rate”. Adjustments are made to have the US population conform to a model, against which the amount of deaths per year are calculated. While intended to smooth variance YoY, this model helps to a great extent the system currently operating.
- omegaworks 8y ago
  >their singular focus on only funding “hypothesis based research” What is the alternative to "hypothesis-based research?"
  - deleted 8y ago
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  - mattigames 8y ago
    OP probably means exploratory science, in the sense of not starting with a claim to confirm (or deny) but with procedures to discover features of a system (e.g. about human red cells) that hypothesis may not be targeting. https://www.sciencedaily.com/releases/2013/09/130927105138.htm https://www.sciencedaily.com/releases/2013/09/130927105138.h...
  - 1_over_n 8y ago
    https://en.wikipedia.org/wiki/Blue_skies_research https://en.wikipedia.org/wiki/Blue_skies_research You would be surprised how much real-world utility comes from poking around things with no clear up-front goal.
jph 8y ago
Godspeed. Thank you for sharing your stories. For anyone reading here, one way to donate in general is The Leukemia & Lymphoma Society: https://www.lls.org/ https://www.lls.org/ LLS funds blood cancer research, education and patient services. You may know of LLS because of its annual fundraiser event known as “Light the Night” and its fitness initiatives “Team in Training“.
- stickfigure 8y ago
  I'd like to add one other important (free!) way you can help: Sign up to be a marrow donor. In the US, here: https://bethematch.org https://bethematch.org Alex mentioned graft-vs-host disease. When you get a marrow transplant, the better the match, the more likely you are to survive. The bigger the database, the better chance of a good match. Seven years ago I lost a good friend to non-hodgkin's lymphoma. Cancer sucks.
  - soy_comptroller 8y ago
    For non-US donors, check out WMDA[1] for information on joining a marrow donor list. Many countries have some sort of donor-sharing agreements. I know someone in California who received a donation from someone in Germany. [1] https://www.wmda.info/donor/become-a-donor/ https://www.wmda.info/donor/become-a-donor/
  - sundvor 8y ago
    Signed up over a decade ago with Australian Red Cross blood service. Haven't heard anything but it's good knowing that if the call ever comes, I personally might save someone's life. (Donating O- helps in a more general way.)
    - m1n1 8y ago
      Haven't heard anything? You should be getting regular pings as they make sure they can reach you annually or more frequently.
      - 8y ago
billyt555 8y ago
Very sad to hear. You are a strong fellow for putting things out there in such a public way, I am sure you have helped many deal with their own struggles.
deleted 8y ago
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darod 8y ago
From someone who's been dealing with cancer for the last 6 years, I hate when people compare it to a fight/war/battle with winners and losers. What exactly am I fighting? My cells? How exactly am I going to war? by sitting in a chair eating a sandwich while getting a chemo infusion? In my mind, this was always just a disease to manage. Being diagnosed at 33 with no family history or no genetic markers the only thing I could point to was some random mutation that reprogrammed my cells. Modern medicine as this point is serving it's purpose -> buying me more time. I personally don't have any illusions of grandeur that I'll be "cured" but I'm thankful the extra time that I've been blessed with and just try to make the most of it everyday. That's all you can really do with or without cancer.
- oh_sigh 8y ago
  What were your symptoms? How were you originally diagnosed?
  - agent008t 8y ago
    This. What is the "correct" course of action to have it diagnosed early / maximize odds of survival?
    - HeadsUpHigh 8y ago
      The earlier the better. Depending on the cancer type early diagnosis of e.g. skin cancer has almost 100% survival( cure) rates. Early diagnosis of lung cancer gives the option of removing the whole section of the lung. Decreases the maximum oxygen supply rate but not enough to affect daily life. Generally speaking if it's early we can cut it more easily, radiate the specific area instead of many different ones that cause more side effects and we can target it more effectively with drugs before it metastasizes and spirals into too many different types. Some new immunotherapy and blocker options offer significantly increased survival rates for advanced stages of cancer as well. Nivolumab is an example that offers a 20-30% 5 year survival rate on advanced non small cell lung cancer. This isn't cure but it isn't a slow burn either. The cancer masses seem to just not grow- but not shrink either and the patients just keep chugging along. The interesting part is that the reason why the rate is 20-30% is because that's the percentage of people who respond to it. A combination of nivolumab and another drug that I forget it's name that failed as a solo option seems to increase it's rate to 40%. Keep in mind this is advanced lung cancer, the type that a couple decades ago had a couple months survival rates.
joshgel 8y ago
As a human it makes me so sad to read this post. I hope the rest of his life is meaningful, comfortable and pain-free. As a doctor it makes me so mad. We talk about winning and losing against cancer like its some game or some foe personified. Just because there aren't any more chemo therapy options doesn't mean there aren't treatment options. Just because he'll be home and not in the hospital doesn't mean his doctors will stop caring for him. He and they will have different goals. Cure seems like a goal that isn't realistic anymore. But there are goals that are realistic. So I hope his doctors are trying to help him live a meaningful, comfortable and pain-free life, like they would for any other patient. And we need to make sure he doesn't think he lost anything. Its not fair and its incorrect. We need to change our language around cancer. Read a more articulate explanation of the problem with language around cancer here: https://jamanetwork.com/journals/jamaoncology/fullarticle/2108855 https://jamanetwork.com/journals/jamaoncology/fullarticle/21...
- ergothus 8y ago
  > ...some foe personified. > ...make sure he doesn't think he lost anything While I have vast respect for those that can have a different viewpoint, I'm not sure I'd be able to look on it as anything but an intensely personal attack from the universe that definitely takes things - notably, a future - away from me. With time I might find the wisdom to feel otherwise. But time is what would be taken away.
  - moises_silva 8y ago
    Agreed. On the other hand, I'd like to think I'd not take it as a personal attack, but I'd not go as far to say I've not lost anything. Just because my life is insignificant in the grand scheme of things and we all have to die anyways doesn't mean I'm not actually losing time with my loved ones and the general enjoyment from life. I suppose you can 'change' the definition of losing or claim we don't own our lives anyways, but that seems like a stretch, and to some degree, seems like invalidating their sense of loss.
  - deleted 8y ago
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komali2 8y ago
Jeeeesus. I'm incapable of understanding the mindset the man is in - total awareness of impending death. It must take tremendous courage - I think I would have been reduced to a quaking pile of jelly faced with the fact of mortality. What a person, what a reality.
- bradknowles 8y ago
  My mom once told me that the only thing she knew of that was worse than having cancer, was being the long-term caregiver for someone who had cancer. She was taking care of her sister at the time, who had stomach cancer. Then my mom passed away a few years later, due to lung cancer -- caused in part by her sister who was allowed to smoke like a chimney, even in the hospital, because she was at stage 4. My dad was the primary care giver for my mom. My dad recently passed away in ICU, when I had to make the hard choice to remove the ventilator instead of doing a tracheotomy, because everyone in the family knew that the last thing he wanted in life was to die in a nursing home. And if we had them do a tracheotomy, he would never be able to go home again. He never woke up, and passed within an hour of removing the ventilator. He was 74. I've had thyroid cancer, which was surgically removed and then I had radioactive iodine therapy afterward. I'll be on synthetic thyroid replacement medication for the rest of my life. I don't think I have much illusion about what is around the corner for me. I'm just trying to put it off for as long as I can, try to get some good work done in the time I have left, and enjoy spending as much time as I can with my wife and what is left of the family.
  - jrheard 8y ago
    <3
  - CryptoPunk 8y ago
    You deserve better than what you've gotten.
- LordHumungous 8y ago
  I mean, your death is impending too.
trentnix 8y ago
Godspeed, Alex.
mscasts 8y ago
Incredible sad read and I wish you the best of luck if any journey is ahead of you. We will all come pretty soon after you! Wordpress is an awesome tool and project. I don't know you or your work but I'm sure it's just awesome. Thanks for improving the open source world for us with your skills! Whenever faced with death in my life, I have always found comfort in Richard Dawkins wonderful speech. I hope you'll do the same. https://www.youtube.com/watch?v=IOXMjCnKwb4 https://www.youtube.com/watch?v=IOXMjCnKwb4
madeffect 8y ago
Hope a miracle happens to you, Alex
- pvaldes 8y ago
  Miracles do not happen. What he needs is a donor and a crowdfunding campaign.
  - mensetmanusman 8y ago
    Miracles are just statically unlikely occurrences according to the viewer. By stating they don't happen, you are alluding to an absolute truth, which can not be proven.
    - pvaldes 8y ago
      I have a different definition of miracle than yours.
lenticular 8y ago
Reading through some of the past posts, he seems to have quite a stoic view of his situation (saying he's 'along for the ride'). Indeed, there's nothing he can do about it, it makes no sense to stress about it. I hope I'm able to feel similarly when it comes time for me.
killjoywashere 8y ago
It will be interesting to see if this guy gets a black bar on HN. Seems to be reserved only for old-and-dead.
gurpreet- 8y ago
Immensely saddening. I just read through some of his cancer tagged posts on his blog and it seemed like he was finally reclaiming his life back. So sad to read that it came back. Hope that you find peace, my friend.
VikingCoder 8y ago
My dad had one month and one day from diagnosis ("surprise, you have stage 4 lung cancer") to death. Fuck cancer. Thank you, Alex, for trying to make the world a better place. Open source is a wonderful legacy.
- subcosmos 8y ago
  That's awful. My condolences :(
  - VikingCoder 8y ago
    There's a weird way to look at it... If he was going to die, he wouldn't have wanted to linger, or suffer, or be a "burden." Also, he should have died 12 years ago from alcohol and depression, but he found AA and it worked for him. In those 12 years he got to see me married, and got to enjoy 5 years with my daughter. Yes I'm incredibly sad that he's gone, but I'm so thankful he got those 12 years... and that he didn't kill anyone in a DUI. Thank you, AA.
cabaalis 8y ago
This man is living my worst fear. Also 34, watching my 6 year-old play a video game. Good luck, Alex. All I can say is, I don't know how you stand, but I know a man who can.
- stef25 8y ago
  Children and death, be it yours or theirs, is the worst combination of thoughts possible to occupy your mind.
lugg 8y ago
Timely, re plugins: https://news.ycombinator.com/item?id=19199647 https://news.ycombinator.com/item?id=19199647 https://www.codeshelter.co/ https://www.codeshelter.co/ > Code Shelter is a collective of volunteer software developers that aims to help with maintaining popular open source projects whose authors need a hand or don't have the time to maintain them any more.
stevej201 8y ago
So sad. Reminds of some promising research into fasting that applies specifically to his form of leukemia, ALL. https://www.utsouthwestern.edu/newsroom/articles/year-2016/leukemia-zhang.html https://www.utsouthwestern.edu/newsroom/articles/year-2016/l... I'm sure he's had a ton of people suggesting all kinds of things, but I wonder if he has looked into fasting. There's not much downside to trying at this point. “Strikingly, we found that in models of ALL, a regimen consisting of six cycles of one day of fasting followed by one day of feeding completely inhibited cancer development,” he said. At the end of seven weeks, the fasted mice had virtually no detectible cancerous cells compared to an average of nearly 68 percent of cells found to be cancerous in the test areas of the non-fasted mice."
lightedman 8y ago
Could one not irradiate the whole body and replace the destroyed marrow with some from a compatible donor in order to fight this?
Endy 8y ago
All I can say is that the disease hasn't won. It may have gone beyond the treatment window, but it has not won.
carlospwk 8y ago
It's 2:40 AM, I open Hacker News because I couldn't sleep and notice this is on top of the page. I have no words. I didn't really know Alex from his work at Automattic, I knew him as the guy who ran the fan website for "Top Gear". I don't have any numbers how many people he helped to get access to the episodes, but I'm absolutely certain the show would have never gotten as popular without his contribution. Thanks and sorry.
- driverdan 8y ago
  I hadn't looked at Final Gear in years but that really brings back memories. I didn't know who ran it until now. When TG was on the air I would refresh FG until the episode was released. I'm glad I got to know about one of the people who contributed to making my life a little better, even if it was close to the end of his. Thanks Alex for all of your contributions.
broth 8y ago
Mortality is one of those things that I grow more accustomed to the older I get. I hate it. There’s not a day that goes by that I don’t think about death or things that cause death. Death is everywhere — the news, social media — two things I try to avoid. However, we cannot avoid death. We are all just living to die.
- programmarchy 8y ago
  > We are all just living to die. Pretty sure there's more to it than that, bud. But you know that already of course. Death is a great motivator to live a life with purpose and meaning, for one. Dwelling on mortality can bring a sharp focus to your life. It's a fear that transcends all other fears which may stand in your way.
- dmitripopov 8y ago
  That's the downturn of Western philosophy that we are raised on. We perceive death as an opposite to life while naturally they are the parts of the same cycle.
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YeahSureWhyNot 8y ago
this is so sad
werber 8y ago
I hope if I'm ever in their shoes I'm as dignified and grateful.
Kluny 8y ago
Thanks for the top notch torrents and the plugins that make my life easier. I've never known who you were, Alex, but it turns out you've been a part of my life for years.
chiefalchemist 8y ago
I paused and thought about what it must have been like to write that post.
1_over_n 8y ago
working on a project in this space now. Definitely hits home - trying to solve problems in this space is important when you read things like this. At times it can be a very demotivating space to tackle because trying to do anything new in this domain is a real slog and for good reason. There are some smart founders and VCs out there, it would be great if more of them decided to spend their time working on more healthcare issues.
daveheq 8y ago
There's a cure for everything, including eventually old age; whether you find it or not is another story.
- smolder 8y ago
  There's no cure for death after the fact. No cure for the loss of information from a damaged brain, unless somehow a backup was made.
meschi 8y ago
Clickbait title.
- PhasmaFelis 8y ago
  You're gonna call clickbait on an ad-free personal blog from a guy announcing that he's dying? Seriously?
- stebann 8y ago
  Come on!
modzu 8y ago
to friends and family of loved ones in similar situations -- dont hesitate to say anything you need to say to them. dont live with regrets. and to friends and family of their caregivers, dont underestimate how hard this is for them too. they will need your care just as much.
schrodingersket 8y ago
This put a lot in perspective when my grandmother passed from breast cancer: https://xkcd.com/931/ https://xkcd.com/931/
grayed-down 8y ago
Damn
bane 8y ago
Wow. I read all of his posts marked cancer, and looked at the date stamps...and just kind of lost it at "34". Fuck cancer.
arthurcolle 8y ago
Very sad
whalesalad 8y ago
Damn. I’ve been following Alex as a peer in the early WP scene since back in the day. Didn’t realize this was him until I saw his about page mention Viper007Bond. If you’re reading this bud I hope you know your work has made a lasting impression on many.
JanSt 8y ago
There is something you can do to help people with leukemia: register as a stem cell donor. Germany has a very strong system with 71.000 stem cell or bone marrow donations per year while there are only 11.000 cases of leukemia in Germany - most go to the rest of the world. There are 5.7 million registered donors[1] (total population is around 80 million). [1] https://de.wikipedia.org/wiki/DKMS https://de.wikipedia.org/wiki/DKMS
- Vinnl 8y ago
  I found this website that lists the equivalent organisations around the world - or at least, it lists DKMS for Germany, and the one I know to be correct for the Netherlands: https://swabtheworld.com/become-a-donor/ https://swabtheworld.com/become-a-donor/ For one reason or another they don't link directly to those organisations, but if you have the name, you should be able to find out the rest.
- looperhacks 8y ago
  This. Registering is very easy, at least in Germany. I did it because I stumbled upon an event that did a mass registration, but you can also request a kit that contains everything you need to register. Just send the cotton swab (?) back, it's easy and no pain involved. Please look up whether there's an organization near you that offers services like this.
  - pluma 8y ago
    I registered online with DKMS. They send you the kit, you send back the swab in the pre-stamped envelope, it's really that simple.
- Oras 8y ago
  Good shout! I've done it a few weeks ago and its quite straightforward process.
  - Bouncingsoul1 8y ago
    Can confirm, painless and without any side effects
jeffrallen 8y ago
Thanks Alex for living a good life, and sharing your work. Thank you also for the reminder to live every day like it is your last.
Accacin 8y ago
Sorry to hear this, I never know what to say in these situations but I wish you and your family the best.
dmitripopov 8y ago
It's too early to bury Alex. Donor immune system may still rise up and kill leukemia cells while leaving some liver tissue for it to regenerate. Not so much of a chance but still...
T3RMINATED 8y ago
Cannabis OIL can Murder Lukemia - what are you waiting for? Come to Colorado NOW! Save yourself.
halotrope 8y ago
It seems fasting can potentially help starving cancer. https://gero.usc.edu/cll/ https://gero.usc.edu/cll/ It can help liver problems too, so maybe worth a shot as a last-resort attempt to stay alive.
- bbb91 8y ago
  For fucks sake man. You and the others leaving comments on his site about green tea, olive oil, diets, fasting, "ayurveda", and god(s) that will save us if we really believe... wtf. This is a guy that has a death sentence over his head. He's being doing treatment for years, his body is weak, probably has or will have pain regularly. Is this the moment to do fasting or drink freaking green tea? It's cancer guys, not a simple cold.
  - PhasmaFelis 8y ago
    The link goes to a medical research project that suggests existing drugs are more effective when combined with a few days of partial fasting. It needs more research, but I don't think it's fair to lump it in with fad diets and green tea.
sebastianconcpt 8y ago
Well the body will eventually "loose the battle" for us all. But Consciousness... since quantum information isn't lost, consciousness might be another story and not get lost with the body.
- andyhmltn 8y ago
  >But Consciousness... since quantum information isn't lost Is this one of those instances where the word 'quantum' is used to hand-wave away weird ideas?
- bbb91 8y ago
  Well, I'm sure that will help the guy with cancer. C'mon.
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flamedoge 8y ago
Dying is very real and very scary notion.
craftoman 8y ago
Reading posts like this one makes you feel bad about your tiny little problems and how grateful you are with your life in front of death.
m1n1 8y ago
Highly recommend Tolstoy's Death of Ivan Ilyich. One alternative sequence is you can start at part II, read to the end, then read part I. Edit: My guess is part I is there to show the reader what his/her own reaction to death is, before he begins his lesson. http://www.lonestar.edu/departments/english/Tolstoy_Ivan.pdf http://www.lonestar.edu/departments/english/Tolstoy_Ivan.pdf
nikolay 8y ago
Cancer is life, not death on the micro level. Okay, maybe a shortsighted and cellfish (my play of words) struggle for life, but aren't we as a civilization doing the same thing right now? Anyway, if we keep vilifying cancer without understanding it, we'll end up "losing". I'm saddened to hear that a good developer and an open-source contributor has been struck with this fate. As a civilization with bold claims to fame, we should really focus on these mass killers rather than building bigger bombs and walls. I mean, come on, we can't even treat the flu and thousands die every year!

1012 points by yagodragon 8y ago

https://www.facebook.com/groups/416702921703509/ https://www.facebook.com/groups/416702921703509/ Cannabis oil may help you. This group has loads of info. Just search / post for leukemia. Lots to read.

libpcap 8y ago

Is there a chance of a liver transplant?

bemeurer 8y ago
The fact that he mentions GvHD would indicate that not to be an option, unfortunately. IANAD.
- soy_comptroller 8y ago
  100% not the same as Alex's sad situation, but for kidneys a dual stem-cell-transplant and kidney-transplant has been done[1]. It was NOT done due to cancer (but due to kidney scarcity) and was NOT done for the liver. I don't think it could ever even be done for the liver because stem-cell-transplant cannot (to the best of my knowledge) be done from a cadaver-donor. Maybe some medical center would be willing to try a living-donor for SCT and partial-liver...but I'm not sure it would get past the ethics committee. [1] https://clinicaltrials.gov/ct2/show/NCT00319657 https://clinicaltrials.gov/ct2/show/NCT00319657
JohnGB 8y ago
I'm not an expert here, but I doubt that he would qualify for a transplant given the heavy toll that the future leukemia treatment would put on the transplanted liver. It's sad, but sometimes there really aren't any more options.
m-p-3 8y ago
Unlikely, as his cancer diagnosis puts him below other patients with an higher chance of survival, and the chemo will likely be too much for a patient recovering from a transplant. Lab-grown organs can't come soon enough :(
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pvaldes 8y ago
Warning! This is not a replacement for medical advice and I could be wrong. This is not my speciality! If I'm understanding correctly seems like Mr. Mills had a marrow transplant, and the white cells in the marrow from the donor had attacked his liver. Chemoterapy is a poison, and liver's work is to deal and be distroyed by poisons, so this does not help. Without donor's white cells, the Leukemia gets worse, but without liver, people die fast. It seems that restoring liver function would be the higher priority now. Liver has evolved to be destroyed and regenerated. Is able to create new hepatocites massively if needed. Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks. Is an awesome organ if we think about it. The options are, I suppose, a liver transplant/liver graft, that is expensive procedure but very effective. or a liver support device that could buy a precious time until a liver donor is available It seems that in USA there are around 4000 liver available from donors each year, and a list of around 17000 receptors. Liver transplant is expensive. You need to invest maybe $12000-250000 only for the operating teather part. Plus post-operatory procedures. An alternative could be to take a chunk of liver of Mr. Mills and cultivate it in a laboratory, far from chemoterapy and vicious white cells and then create a bio-system that could act as an artificial liver for some time. A possibility maybe could be to make a self-transplant in the future. Even small chunks can regenerate a much bigger chunk of liver Several types of artificial livers could help also to alleviate the liver work, like a Molecular Adsorbents Recirculation System (MARS) or/and fractionated plasma separation and adsorption (FPSA, Prometheus)
- gnulinux 8y ago
  This is a question coming from complete layman. In fact, I'm ashamed to ask such a stupid question. But I'm still curious: > Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks. Does this mean it's possible for one to donate liver (say, half a liver) and live like nothing happened (except a scar)? Then why don't everyone donate their liver like this? Why are there only 4000 livers in the US?
  - soy_comptroller 8y ago
    You can donate part of the liver, but it isn't "like nothing ever happened". This followup[1] of donors from 2011 found that 53% suffered long-term complications (though 93% would have gone through with it again). Notably missing from those stats is the percentage of donors who died after donation, either due to direct effects, indirect effects, or totally unrelated things. Donating one of your two kidneys is maybe a "like nothing happened" experience, but donating a partial liver is much more complicated with worse outcomes. [1] https://journals.lww.com/annalsofsurgery/Abstract/2011/11000/Long_Term_Follow_Up_After_Right_Hepatectomy_for.3.aspx https://journals.lww.com/annalsofsurgery/Abstract/2011/11000...

vermontdevil 8y ago

So sad. But good to see you’ll be home and comfortable with your loved ones than at a bland hospital room. Godspeed.

Bucephalus355 8y ago

Whenever I’m studying a given topic, I like to buy maybe 6 or 7 books on it to skim-read from someplace where that’s afforable like HPB or Thriftbooks. Gives you a good overview of field and also each of the books fills in the holes of the other books. Recently did this on the topic of “cancer”. All recent books published in the last 15 years by Big 5 Publishers. Every single book had intense criticism for the NIH. It seems they do a lot of good, but their singular focus on only funding “hypothesis based research” has driven and then kept extremely promising ideas on the sidelines for 25 years. Very sad to read at times, and made me really appreciate how scientific progress comes in amazing bursts that are short lived but that everyone depends on for decades to come. EDIT: Kind of astonished by the downvotes. This book goes into more detail: https://www.amazon.com/dp/0374135606/ https://www.amazon.com/dp/0374135606/ Also something else I forgot to add is how the death rate from cancer really hasn’t budged in 20 years by being generously massaged via something known as “average death rate”. Adjustments are made to have the US population conform to a model, against which the amount of deaths per year are calculated. While intended to smooth variance YoY, this model helps to a great extent the system currently operating.

omegaworks 8y ago
>their singular focus on only funding “hypothesis based research” What is the alternative to "hypothesis-based research?"
- deleted 8y ago
  [deleted]
- mattigames 8y ago
  OP probably means exploratory science, in the sense of not starting with a claim to confirm (or deny) but with procedures to discover features of a system (e.g. about human red cells) that hypothesis may not be targeting. https://www.sciencedaily.com/releases/2013/09/130927105138.htm https://www.sciencedaily.com/releases/2013/09/130927105138.h...
- 1_over_n 8y ago
  https://en.wikipedia.org/wiki/Blue_skies_research https://en.wikipedia.org/wiki/Blue_skies_research You would be surprised how much real-world utility comes from poking around things with no clear up-front goal.

jph 8y ago

Godspeed. Thank you for sharing your stories. For anyone reading here, one way to donate in general is The Leukemia & Lymphoma Society: https://www.lls.org/ https://www.lls.org/ LLS funds blood cancer research, education and patient services. You may know of LLS because of its annual fundraiser event known as “Light the Night” and its fitness initiatives “Team in Training“.

stickfigure 8y ago
I'd like to add one other important (free!) way you can help: Sign up to be a marrow donor. In the US, here: https://bethematch.org https://bethematch.org Alex mentioned graft-vs-host disease. When you get a marrow transplant, the better the match, the more likely you are to survive. The bigger the database, the better chance of a good match. Seven years ago I lost a good friend to non-hodgkin's lymphoma. Cancer sucks.
- soy_comptroller 8y ago
  For non-US donors, check out WMDA[1] for information on joining a marrow donor list. Many countries have some sort of donor-sharing agreements. I know someone in California who received a donation from someone in Germany. [1] https://www.wmda.info/donor/become-a-donor/ https://www.wmda.info/donor/become-a-donor/
- sundvor 8y ago
  Signed up over a decade ago with Australian Red Cross blood service. Haven't heard anything but it's good knowing that if the call ever comes, I personally might save someone's life. (Donating O- helps in a more general way.)
  - m1n1 8y ago
    Haven't heard anything? You should be getting regular pings as they make sure they can reach you annually or more frequently.
    - 8y ago

billyt555 8y ago

Very sad to hear. You are a strong fellow for putting things out there in such a public way, I am sure you have helped many deal with their own struggles.

deleted 8y ago

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darod 8y ago

From someone who's been dealing with cancer for the last 6 years, I hate when people compare it to a fight/war/battle with winners and losers. What exactly am I fighting? My cells? How exactly am I going to war? by sitting in a chair eating a sandwich while getting a chemo infusion? In my mind, this was always just a disease to manage. Being diagnosed at 33 with no family history or no genetic markers the only thing I could point to was some random mutation that reprogrammed my cells. Modern medicine as this point is serving it's purpose -> buying me more time. I personally don't have any illusions of grandeur that I'll be "cured" but I'm thankful the extra time that I've been blessed with and just try to make the most of it everyday. That's all you can really do with or without cancer.

oh_sigh 8y ago
What were your symptoms? How were you originally diagnosed?
- agent008t 8y ago
  This. What is the "correct" course of action to have it diagnosed early / maximize odds of survival?
  - HeadsUpHigh 8y ago
    The earlier the better. Depending on the cancer type early diagnosis of e.g. skin cancer has almost 100% survival( cure) rates. Early diagnosis of lung cancer gives the option of removing the whole section of the lung. Decreases the maximum oxygen supply rate but not enough to affect daily life. Generally speaking if it's early we can cut it more easily, radiate the specific area instead of many different ones that cause more side effects and we can target it more effectively with drugs before it metastasizes and spirals into too many different types. Some new immunotherapy and blocker options offer significantly increased survival rates for advanced stages of cancer as well. Nivolumab is an example that offers a 20-30% 5 year survival rate on advanced non small cell lung cancer. This isn't cure but it isn't a slow burn either. The cancer masses seem to just not grow- but not shrink either and the patients just keep chugging along. The interesting part is that the reason why the rate is 20-30% is because that's the percentage of people who respond to it. A combination of nivolumab and another drug that I forget it's name that failed as a solo option seems to increase it's rate to 40%. Keep in mind this is advanced lung cancer, the type that a couple decades ago had a couple months survival rates.

joshgel 8y ago

As a human it makes me so sad to read this post. I hope the rest of his life is meaningful, comfortable and pain-free. As a doctor it makes me so mad. We talk about winning and losing against cancer like its some game or some foe personified. Just because there aren't any more chemo therapy options doesn't mean there aren't treatment options. Just because he'll be home and not in the hospital doesn't mean his doctors will stop caring for him. He and they will have different goals. Cure seems like a goal that isn't realistic anymore. But there are goals that are realistic. So I hope his doctors are trying to help him live a meaningful, comfortable and pain-free life, like they would for any other patient. And we need to make sure he doesn't think he lost anything. Its not fair and its incorrect. We need to change our language around cancer. Read a more articulate explanation of the problem with language around cancer here: https://jamanetwork.com/journals/jamaoncology/fullarticle/2108855 https://jamanetwork.com/journals/jamaoncology/fullarticle/21...

ergothus 8y ago
> ...some foe personified. > ...make sure he doesn't think he lost anything While I have vast respect for those that can have a different viewpoint, I'm not sure I'd be able to look on it as anything but an intensely personal attack from the universe that definitely takes things - notably, a future - away from me. With time I might find the wisdom to feel otherwise. But time is what would be taken away.
- moises_silva 8y ago
  Agreed. On the other hand, I'd like to think I'd not take it as a personal attack, but I'd not go as far to say I've not lost anything. Just because my life is insignificant in the grand scheme of things and we all have to die anyways doesn't mean I'm not actually losing time with my loved ones and the general enjoyment from life. I suppose you can 'change' the definition of losing or claim we don't own our lives anyways, but that seems like a stretch, and to some degree, seems like invalidating their sense of loss.
- deleted 8y ago
  [deleted]

komali2 8y ago

Jeeeesus. I'm incapable of understanding the mindset the man is in - total awareness of impending death. It must take tremendous courage - I think I would have been reduced to a quaking pile of jelly faced with the fact of mortality. What a person, what a reality.

bradknowles 8y ago
My mom once told me that the only thing she knew of that was worse than having cancer, was being the long-term caregiver for someone who had cancer. She was taking care of her sister at the time, who had stomach cancer. Then my mom passed away a few years later, due to lung cancer -- caused in part by her sister who was allowed to smoke like a chimney, even in the hospital, because she was at stage 4. My dad was the primary care giver for my mom. My dad recently passed away in ICU, when I had to make the hard choice to remove the ventilator instead of doing a tracheotomy, because everyone in the family knew that the last thing he wanted in life was to die in a nursing home. And if we had them do a tracheotomy, he would never be able to go home again. He never woke up, and passed within an hour of removing the ventilator. He was 74. I've had thyroid cancer, which was surgically removed and then I had radioactive iodine therapy afterward. I'll be on synthetic thyroid replacement medication for the rest of my life. I don't think I have much illusion about what is around the corner for me. I'm just trying to put it off for as long as I can, try to get some good work done in the time I have left, and enjoy spending as much time as I can with my wife and what is left of the family.
- jrheard 8y ago
  <3
- CryptoPunk 8y ago
  You deserve better than what you've gotten.
LordHumungous 8y ago
I mean, your death is impending too.

trentnix 8y ago

Godspeed, Alex.

mscasts 8y ago

Incredible sad read and I wish you the best of luck if any journey is ahead of you. We will all come pretty soon after you! Wordpress is an awesome tool and project. I don't know you or your work but I'm sure it's just awesome. Thanks for improving the open source world for us with your skills! Whenever faced with death in my life, I have always found comfort in Richard Dawkins wonderful speech. I hope you'll do the same. https://www.youtube.com/watch?v=IOXMjCnKwb4 https://www.youtube.com/watch?v=IOXMjCnKwb4

madeffect 8y ago

Hope a miracle happens to you, Alex

pvaldes 8y ago
Miracles do not happen. What he needs is a donor and a crowdfunding campaign.
- mensetmanusman 8y ago
  Miracles are just statically unlikely occurrences according to the viewer. By stating they don't happen, you are alluding to an absolute truth, which can not be proven.
  - pvaldes 8y ago
    I have a different definition of miracle than yours.

lenticular 8y ago

Reading through some of the past posts, he seems to have quite a stoic view of his situation (saying he's 'along for the ride'). Indeed, there's nothing he can do about it, it makes no sense to stress about it. I hope I'm able to feel similarly when it comes time for me.

killjoywashere 8y ago

It will be interesting to see if this guy gets a black bar on HN. Seems to be reserved only for old-and-dead.

gurpreet- 8y ago

Immensely saddening. I just read through some of his cancer tagged posts on his blog and it seemed like he was finally reclaiming his life back. So sad to read that it came back. Hope that you find peace, my friend.

VikingCoder 8y ago

My dad had one month and one day from diagnosis ("surprise, you have stage 4 lung cancer") to death. Fuck cancer. Thank you, Alex, for trying to make the world a better place. Open source is a wonderful legacy.

subcosmos 8y ago
That's awful. My condolences :(
- VikingCoder 8y ago
  There's a weird way to look at it... If he was going to die, he wouldn't have wanted to linger, or suffer, or be a "burden." Also, he should have died 12 years ago from alcohol and depression, but he found AA and it worked for him. In those 12 years he got to see me married, and got to enjoy 5 years with my daughter. Yes I'm incredibly sad that he's gone, but I'm so thankful he got those 12 years... and that he didn't kill anyone in a DUI. Thank you, AA.

cabaalis 8y ago

This man is living my worst fear. Also 34, watching my 6 year-old play a video game. Good luck, Alex. All I can say is, I don't know how you stand, but I know a man who can.

stef25 8y ago
Children and death, be it yours or theirs, is the worst combination of thoughts possible to occupy your mind.

lugg 8y ago

Timely, re plugins: https://news.ycombinator.com/item?id=19199647 https://news.ycombinator.com/item?id=19199647 https://www.codeshelter.co/ https://www.codeshelter.co/ > Code Shelter is a collective of volunteer software developers that aims to help with maintaining popular open source projects whose authors need a hand or don't have the time to maintain them any more.

stevej201 8y ago

So sad. Reminds of some promising research into fasting that applies specifically to his form of leukemia, ALL. https://www.utsouthwestern.edu/newsroom/articles/year-2016/leukemia-zhang.html https://www.utsouthwestern.edu/newsroom/articles/year-2016/l... I'm sure he's had a ton of people suggesting all kinds of things, but I wonder if he has looked into fasting. There's not much downside to trying at this point. “Strikingly, we found that in models of ALL, a regimen consisting of six cycles of one day of fasting followed by one day of feeding completely inhibited cancer development,” he said. At the end of seven weeks, the fasted mice had virtually no detectible cancerous cells compared to an average of nearly 68 percent of cells found to be cancerous in the test areas of the non-fasted mice."

lightedman 8y ago

Could one not irradiate the whole body and replace the destroyed marrow with some from a compatible donor in order to fight this?

Endy 8y ago

All I can say is that the disease hasn't won. It may have gone beyond the treatment window, but it has not won.

carlospwk 8y ago

It's 2:40 AM, I open Hacker News because I couldn't sleep and notice this is on top of the page. I have no words. I didn't really know Alex from his work at Automattic, I knew him as the guy who ran the fan website for "Top Gear". I don't have any numbers how many people he helped to get access to the episodes, but I'm absolutely certain the show would have never gotten as popular without his contribution. Thanks and sorry.

driverdan 8y ago
I hadn't looked at Final Gear in years but that really brings back memories. I didn't know who ran it until now. When TG was on the air I would refresh FG until the episode was released. I'm glad I got to know about one of the people who contributed to making my life a little better, even if it was close to the end of his. Thanks Alex for all of your contributions.

broth 8y ago

Mortality is one of those things that I grow more accustomed to the older I get. I hate it. There’s not a day that goes by that I don’t think about death or things that cause death. Death is everywhere — the news, social media — two things I try to avoid. However, we cannot avoid death. We are all just living to die.

programmarchy 8y ago
> We are all just living to die. Pretty sure there's more to it than that, bud. But you know that already of course. Death is a great motivator to live a life with purpose and meaning, for one. Dwelling on mortality can bring a sharp focus to your life. It's a fear that transcends all other fears which may stand in your way.
dmitripopov 8y ago
That's the downturn of Western philosophy that we are raised on. We perceive death as an opposite to life while naturally they are the parts of the same cycle.

deleted 8y ago

[deleted]

YeahSureWhyNot 8y ago

this is so sad

werber 8y ago

I hope if I'm ever in their shoes I'm as dignified and grateful.

Kluny 8y ago

Thanks for the top notch torrents and the plugins that make my life easier. I've never known who you were, Alex, but it turns out you've been a part of my life for years.

chiefalchemist 8y ago

I paused and thought about what it must have been like to write that post.

1_over_n 8y ago

working on a project in this space now. Definitely hits home - trying to solve problems in this space is important when you read things like this. At times it can be a very demotivating space to tackle because trying to do anything new in this domain is a real slog and for good reason. There are some smart founders and VCs out there, it would be great if more of them decided to spend their time working on more healthcare issues.

daveheq 8y ago

There's a cure for everything, including eventually old age; whether you find it or not is another story.

smolder 8y ago
There's no cure for death after the fact. No cure for the loss of information from a damaged brain, unless somehow a backup was made.

meschi 8y ago

Clickbait title.

PhasmaFelis 8y ago
You're gonna call clickbait on an ad-free personal blog from a guy announcing that he's dying? Seriously?
stebann 8y ago
Come on!

modzu 8y ago

to friends and family of loved ones in similar situations -- dont hesitate to say anything you need to say to them. dont live with regrets. and to friends and family of their caregivers, dont underestimate how hard this is for them too. they will need your care just as much.

schrodingersket 8y ago

This put a lot in perspective when my grandmother passed from breast cancer: https://xkcd.com/931/ https://xkcd.com/931/

grayed-down 8y ago

Damn

bane 8y ago

Wow. I read all of his posts marked cancer, and looked at the date stamps...and just kind of lost it at "34". Fuck cancer.

arthurcolle 8y ago

Very sad

whalesalad 8y ago

Damn. I’ve been following Alex as a peer in the early WP scene since back in the day. Didn’t realize this was him until I saw his about page mention Viper007Bond. If you’re reading this bud I hope you know your work has made a lasting impression on many.

JanSt 8y ago

There is something you can do to help people with leukemia: register as a stem cell donor. Germany has a very strong system with 71.000 stem cell or bone marrow donations per year while there are only 11.000 cases of leukemia in Germany - most go to the rest of the world. There are 5.7 million registered donors[1] (total population is around 80 million). [1] https://de.wikipedia.org/wiki/DKMS https://de.wikipedia.org/wiki/DKMS

Vinnl 8y ago
I found this website that lists the equivalent organisations around the world - or at least, it lists DKMS for Germany, and the one I know to be correct for the Netherlands: https://swabtheworld.com/become-a-donor/ https://swabtheworld.com/become-a-donor/ For one reason or another they don't link directly to those organisations, but if you have the name, you should be able to find out the rest.
looperhacks 8y ago
This. Registering is very easy, at least in Germany. I did it because I stumbled upon an event that did a mass registration, but you can also request a kit that contains everything you need to register. Just send the cotton swab (?) back, it's easy and no pain involved. Please look up whether there's an organization near you that offers services like this.
- pluma 8y ago
  I registered online with DKMS. They send you the kit, you send back the swab in the pre-stamped envelope, it's really that simple.
Oras 8y ago
Good shout! I've done it a few weeks ago and its quite straightforward process.
- Bouncingsoul1 8y ago
  Can confirm, painless and without any side effects

jeffrallen 8y ago

Thanks Alex for living a good life, and sharing your work. Thank you also for the reminder to live every day like it is your last.

Accacin 8y ago

Sorry to hear this, I never know what to say in these situations but I wish you and your family the best.

dmitripopov 8y ago

It's too early to bury Alex. Donor immune system may still rise up and kill leukemia cells while leaving some liver tissue for it to regenerate. Not so much of a chance but still...

T3RMINATED 8y ago

Cannabis OIL can Murder Lukemia - what are you waiting for? Come to Colorado NOW! Save yourself.

halotrope 8y ago

It seems fasting can potentially help starving cancer. https://gero.usc.edu/cll/ https://gero.usc.edu/cll/ It can help liver problems too, so maybe worth a shot as a last-resort attempt to stay alive.

bbb91 8y ago
For fucks sake man. You and the others leaving comments on his site about green tea, olive oil, diets, fasting, "ayurveda", and god(s) that will save us if we really believe... wtf. This is a guy that has a death sentence over his head. He's being doing treatment for years, his body is weak, probably has or will have pain regularly. Is this the moment to do fasting or drink freaking green tea? It's cancer guys, not a simple cold.
- PhasmaFelis 8y ago
  The link goes to a medical research project that suggests existing drugs are more effective when combined with a few days of partial fasting. It needs more research, but I don't think it's fair to lump it in with fad diets and green tea.

sebastianconcpt 8y ago

Well the body will eventually "loose the battle" for us all. But Consciousness... since quantum information isn't lost, consciousness might be another story and not get lost with the body.

andyhmltn 8y ago
>But Consciousness... since quantum information isn't lost Is this one of those instances where the word 'quantum' is used to hand-wave away weird ideas?
bbb91 8y ago
Well, I'm sure that will help the guy with cancer. C'mon.

deleted 8y ago

[deleted]

flamedoge 8y ago

Dying is very real and very scary notion.

craftoman 8y ago

Reading posts like this one makes you feel bad about your tiny little problems and how grateful you are with your life in front of death.

m1n1 8y ago

Highly recommend Tolstoy's Death of Ivan Ilyich. One alternative sequence is you can start at part II, read to the end, then read part I. Edit: My guess is part I is there to show the reader what his/her own reaction to death is, before he begins his lesson. http://www.lonestar.edu/departments/english/Tolstoy_Ivan.pdf http://www.lonestar.edu/departments/english/Tolstoy_Ivan.pdf

nikolay 8y ago

Cancer is life, not death on the micro level. Okay, maybe a shortsighted and cellfish (my play of words) struggle for life, but aren't we as a civilization doing the same thing right now? Anyway, if we keep vilifying cancer without understanding it, we'll end up "losing". I'm saddened to hear that a good developer and an open-source contributor has been struck with this fate. As a civilization with bold claims to fame, we should really focus on these mass killers rather than building bigger bombs and walls. I mean, come on, we can't even treat the flu and thousands die every year!