
Leukemia Has Won - yagodragon
https://alex.blog/2019/02/18/leukemia-has-won/
======
joshgel
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/21...](https://jamanetwork.com/journals/jamaoncology/fullarticle/2108855)

~~~
Gatsky
As a medical oncologist[1], your paragraph and that paternalistic and annoying
article you cited makes me mad. The outrage with 'our language around cancer'
is a recent phenomenon, and I think it is actually not that important and even
harmful. What you are proposing is to homogenise how patients cope with
cancer, assuming that one way of dealing with it is qualitatively better than
another. This 'one way' is a kind of stoic acceptance, an appreciation for the
simple things in life, a focus on quality of life and meaningful experiences,
good supportive care outcomes, ending finally with a peaceful departure
surrounded by loving friends and family.

This sounds great, but it is a grave error to assume that all patients should
think this way. First of all, many don't get the chance. Some patients are too
alone, too poor or have too much chaos in their lives to be able to get
anywhere near the 'one way'. For some patients, their cancer arrives suddenly
and kills them before they have time to accept or deal with anything.

But the main point is that you can't a priori decide what is the right way for
someone to deal with their illness. For some people, they need to fight it
like a battle, before they can ever accept the fact they will lose. For
others, they 'fight' because they know it is important to the people they
love, even though they know it is probably a lost cause. Who are we to tell
them that they aren't thinking about things the right way?

The final thing to say is that a cancer is incurable until it isn't. The worst
thing is when a new treatment comes out (like immune checkpoint blockade), and
a patient whom you know would have benefited immensely from that treatment
dies just before they could have received it. There are patients I see today
who decided to fight, sought out any avenue they could and are alive and going
on holidays with their kids today because of it. That is a dreadfully
uncomfortable notion, and something that a health system can't possibly deal
with, but try telling those people that their 'language around cancer' is
unhelpful. By the same token of course, there are many who never accept their
illness, and waste precious time pursuing expensive, futile therapies.

In medicine, avoid generalisation and homogenisation at ALL cost. As colourful
and varied as people are in their healthful lives, they are only more so when
ill.

[1] In other words I give drug therapies to people with cancer. About 70% of
the people I see have advanced, incurable cancer, with life spans ranging from
a few years to a few months.

~~~
trhway
>Who are we to tell them that they aren't thinking about things the right way?

you're an oncologist. Would it be an unreasonable expectation that you have
observed/learned a correlation, if any, between patient outcomes and the
various ways of thinking the patients practiced, and thus that you may have an
idea what is the "right way" and what isn't?

~~~
sgt101
This is a familiar and successful way of thinking that we are taught in school
and even as scientists. The challenge is that some decisions and domains are
simply not amenable to statistics and concepts like correlation break down in
the face of infinite payoffs (like patients getting to go to a grandchilds
wedding) and infinite penalties (like the death of a child). How does one
account for a situation in which 10,000 good decisions are for nothing in the
face of one mistake?

------
darod
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
What were your symptoms? How were you originally diagnosed?

~~~
agent008t
This. What is the "correct" course of action to have it diagnosed early /
maximize odds of survival?

~~~
HeadsUpHigh
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.

~~~
agent008t
So are there some specific symptoms one should look out for? Some
comprehensive periodic tests? Maybe combined with some genetic pre-screening?

Given how important it can be to diagnose these things early, I think most
people have no idea how they could or should do it - apart from maybe breast
and testicular cancer.

If you were to design a policy for someone that wanted to maximize their
survival probability with regards to potential cancers while still leading a
normal life, and money was no object, what would that policy look like?

~~~
HeadsUpHigh
>So are there some specific symptoms one should look out for?

Not something overly specific. And it also depends on cancer type. Lung cancer
is mostly without any symptoms until it's very advanced and you start coughing
blood.

>If you were to design a policy for someone that wanted to maximize their
survival probability with regards to potential cancers while still leading a
normal life, and money was no object, what would that policy look like?

I would say the best bang for your buck would be an annual MRI test. It won't
show absolutely everything but it would show most stuff.

------
komali2
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.

~~~
otabdeveloper2
> I'm incapable of understanding the mindset the man is in - total awareness
> of impending death.

Seriously? _Every_ human being on Earth over a toddler's age is totally aware
of impending death. To date nobody has ever lived forever. The only question,
for every human being, cancer or no, is how many years you get before you
eventually die.

Modern man just makes my head shake in disbelief sometimes...

~~~
komali2
What feelings would you expect, or prefer, me to feel in reaction to your
comment?

~~~
simias
That's a great reply, I think the internet would be a better place if people
(myself included) asked themselves this very question before posting a comment
online.

------
JanSt
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)

~~~
looperhacks
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
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.

------
jph
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
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.

~~~
sundvor
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
Haven't heard anything? You should be getting regular pings as they make sure
they can reach you annually or more frequently.

~~~
sundvor
I'm an active blood donor so they do know how to reach me.

------
carlospwk
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
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.

------
VikingCoder
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
That's awful. My condolences :(

~~~
VikingCoder
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.

------
mscasts
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)

------
cabaalis
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
Children and death, be it yours or theirs, is the worst combination of
thoughts possible to occupy your mind.

------
broth
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
> 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.

------
lugg
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.

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

------
bane
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.

------
lenticular
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.

------
stevej201
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/l...](https://www.utsouthwestern.edu/newsroom/articles/year-2016/leukemia-
zhang.html) 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."

------
whalesalad
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.

------
nikolay
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!

------
gurpreet-
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.

------
dmitripopov
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...

------
m1n1
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)

------
billyt555
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.

------
jeffrallen
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.

------
codyarsenault
[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.

------
modzu
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.

------
Kluny
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.

------
1_over_n
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.

------
craftoman
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.

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

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

------
trentnix
Godspeed, Alex.

------
schrodingersket
This put a lot in perspective when my grandmother passed from breast cancer:
[https://xkcd.com/931/](https://xkcd.com/931/)

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

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

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

------
flamedoge
Dying is very real and very scary notion.

------
arthurcolle
Very sad

------
grayed-down
Damn

------
YeahSureWhyNot
this is so sad

------
libpcap
Is there a chance of a liver transplant?

~~~
bemeurer
The fact that he mentions GvHD would indicate that not to be an option,
unfortunately. IANAD.

~~~
soy_comptroller
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)

------
madeffect
Hope a miracle happens to you, Alex

~~~
pvaldes
Miracles do not happen. What he needs is a donor and a crowdfunding campaign.

~~~
mensetmanusman
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
I have a different definition of miracle than yours.

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

------
meschi
Clickbait title.

~~~
PhasmaFelis
You're gonna call clickbait on an ad-free personal blog from a guy announcing
that he's _dying?_ Seriously?

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

~~~
smolder
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.

------
sebastianconcpt
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.

~~~
bbb91
Well, I'm sure that will help the guy with cancer. C'mon.

------
halotrope
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
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
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.

------
Bucephalus355
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.

~~~
delusional
What is the alternative? Wild guess based research? Faith based research? I'm
having a hard time envisioning how you'd design an experiment, and extract
knowledge, without a hypothesis.

~~~
jodrellblank
" _Hypothesis-driven research is based on scientific theories, while
exploration is based on a search for discovery backed by few theories or none
at all._ "

" _With hypothesis testing, researchers present what the study hopes to
accomplish, how it will be done and possible outcomes. [..] Meanwhile,
exploratory research examines unknown areas with no or little-known theories
to back them -- perceived as a riskier bet._ "

\-
[https://www.sciencedaily.com/releases/2013/09/130927105138.h...](https://www.sciencedaily.com/releases/2013/09/130927105138.htm)

> I'm having a hard time envisioning how you'd design an experiment, and
> extract knowledge, without a hypothesis

" _Often, a proposal to gain observational experience is dismissed as being a
"fishing expedition"…but how can one devise a workable hypothesis to test
without first acquiring basic knowledge of the system, and how better to
obtain such basic knowledge than to observe the system without any
preconceived notions?_" \- [https://www.edge.org/response-
detail/11702](https://www.edge.org/response-detail/11702)

