
Ask HN: My 19 year old friend has cancer. How can I help him?  - nodemaker
Hello HN,<p>Very unfortunately my friend and neighbour who is just 19 years old has colorectal cancer. He was undergoing radiation therapy but his chance of survival has dropped from 90% to 35% after his tumors got infected. His doctors (in the Netherlands) say that they will try more radiation and chemotherapy but with the 35% chance of survival that his doctors told him recently he seems to have lost some hope. I was wondering if there are any options that we are not looking at.<p>He is a very bright kid who has the potential to be a great hacker :) HN, tell me how we can hack his chances of survival.
======
specialist
I'm sorry to hear about your friend.

I had a bone marrow transplant as a teenager, currently 26 years post op.
Those days, BMTs were still very early research. Mortality was 90%.

My primary oncologist at the time told me: People are not statistics.

Your first job as friend, patient advocate, care giver, or whatever other role
you wish, is to leave your issues at the door. Your friend needs all their
energy towards staying alive. They don't need anyone else's problems, issues,
negativity, doubts, whatever.

Your second job is to not take away hope. No matter what the situation. It's
the doctor's job to deliver the bad news. Your job is to suspend disbelief and
always be supportive.

After my treatment, I volunteered for many years, visiting patients, helping
out, etc. I've also had patients live with me while they're in town for
treatment. Nothing as extreme or taxing as hospice care, but also not a cake
walk. And I don't volunteer when my head's not straight, knowing I'm not able
to do the two jobs above.

Lastly, sometimes your job is to help the family, more than the patient.
Sometimes the patient has accepted their fate, is in a ICU/coma/whatever, and
they're doing fine mentally and emotionally whereas the family now has to
struggle with their grief.

Best wishes. You're a good friend to your neighbor.

~~~
nodemaker
Thanks a lot :)

------
bananas
My father died a couple of years ago from an upper GI cancer that went
metastatic. Three things he said to me:

1\. Write down your worries and regrets and fix them. If you lose, it's good.
If you win, it's awesome.

2\. Don't trust any non-medical woo. Science and medicine is your best shot at
this.

3\. Get outside as much as possible. He said this helped him live another 3
months

That was about it. He didn't discuss percentages, hope, religion or any of
that stuff.

~~~
ericxb
Regarding "get outside": take a look at the abstract for the study "Beneficial
effects of sun exposure on cancer mortality". It starts with "For more than 50
years, there has been documentation in the medical literature suggesting that
regular sun exposure is associated with substantial decreases in death rates
from certain cancers and a decrease in overall cancer death rates".
[http://www.ncbi.nlm.nih.gov/pubmed/8475009](http://www.ncbi.nlm.nih.gov/pubmed/8475009)

~~~
sizzle
thanks for the link. Do you know how much exposure is too much, in terms of
developing skin cancer?

~~~
josephpmay
I have a friend doing research on this. I should caution that you should in no
way take this as medical advice, as there are not yet any results, but the
current hypothesis is that one's risk of getting melanoma (the main skin
cancer that is truly dangerous) is actually less related to how long you stay
in the sun and instead more related to whether your sun exposure is consistent
(each day) or intermittent (you only go out in the sun a couple of non-
consecutive days a week). If this hypothesis is correct, consistent sun
exposure is significantly safer than intermittent sun exposure.

If you would like, I can provide links to papers that support this hypothesis.

~~~
sizzle
I asked because I just started supplementing with vitamin D and forcing myself
to get 15 minutes of direct sun exposure every morning since I started
working/exercising indoors at home and rarely venturing outside during the
work week.

That is something I would like to look into and appreciate a link if not a
hassle. That hypothesis could change how I go about my daily exposure. How
much exposure do you get if you don't mind me asking?

------
joedevon
Sorry nodemaker. This reminds me of a blog post I have that's a long time
coming. (kinda painful to face).

My Dad passed away a year and a few weeks ago of Lung Cancer. I am furious
that his pain doc didn't warn us that the day he started taking the heavy
drugs, might be the last lucid day in his life.

We never got a chance to find out his final wishes.

35% is much better chance than my Dad was given, so I hope he pulls through
and it's super important that he embraces the 35% like it's 100%.

But if it goes downhill, make sure before the pain meds are given, that last
wishes are discussed. It's difficult to discuss, but don't be shy about it.
Discuss it as a "just in case" scenario.

Also, @bananas' Dad was very wise. Listen to his advice.

~~~
nodemaker
Thanks! Yeah I will make sure we get the last wishes down in case it goes
downhill.

------
marckemil
Radiation oncologist here. It's impossible for me to say much, but his drop in
estimated survival rate is probably not strictly related to his tumor being
infected. However, he probably has some sort of genetic predisposition to have
cancer at such a young age, which can also have an impact on survival. That
being said, a few things to keep in mind: survival estimates are notoriously
bad. Moreover, oncologists tend to do a poor job of communicating those
estimates. 35% chances of being alive in 2 years? in 5 years? alive but living
with "active" cancer? Very important points.

A reasonable thing to do would be to ask his oncologist "if there are any
other options he could think of". It's simple, but usually it forces us to
reconsider the problem from scratch. I must warn you though that in a 19 y.o.,
we (oncologists) usually think very hard and rarely leave any stone unturned.

From experience, the best a friend can do is simply be there and "act normal"
ie don't overdo it. No need to do anything special.

Good luck -- sometimes luck is all it takes

~~~
nodemaker
Yes he does have a genetic condition called Lynch Syndrome that makes him
predisposed to colorectal cancer. Thanks I will tell him to ask (or ask myself
if possible) the oncologist for any possible options.

------
keithflower
1) Just sit with him. Listen. That is a tremendous gift.

2) Tell him to pay no attention to "chances of survival."

3) Ask him to work closely with physician(s). Have him write down his
questions before he goes in for his visits. Get answers to his questions.
Don't be afraid to get second and third opinions.

4) Don't worry alone.

5) Ask about enrollment in clinical trials. His current treatment can often
continue and he may be eligible for new treatments. The field is moving very
quickly at this time.

~~~
specialist
_Have him write down his questions before he goes in for his visits. Get
answers to his questions._

Excellent advice.

From my reading and personal experience, having a patient advocate
significantly improves patient outcomes.

When I'm volunteering, and the patient wants my help, I first capture all the
questions, I act as secretary during the doctor's visit (making sure every
question is asked, capturing all the answers), and then I review the notes
with the patient afterwards.

Doctors visits are extremely stressful for most patients. And they're
medicated. So lots of details would otherwise get lost.

------
dachshund
If he's of a scientific or mathematical bent, he might find this an
interesting read: [http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-
ha...](http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-
left.html?_r=1) .

It could also be worth pointing out to him that although survival
probabilities are useful measures when applied to large or even moderately-
sized populations, they aren't necessarily that useful in trying to predict
the outcome of a single event. "90% probability of survival" didn't mean that
your friend was going to live, and "35% chance of survival" doesn't mean that
he is going to die. What is certain, however, is that he is not done yet.

~~~
nodemaker
Thanks :) I will send him the article.

------
andrewcooke
maybe he'd just like being made to laugh, somehow? i mean - be nice to him,
love him.

when you are ill, there are times when you are angry and want to fight. and
then a friend with ideas on what else to try is useful. but there are also
times when you're just tired of the whole shitty thing, when you just want a
break, and then a different kind of friendship is needed.

good luck to both of you.

~~~
nodemaker
Yes sometimes I forget this in trying to get him to try new things but I will
keep this in mind. Thanks!

------
oofabz
As a friend, you can't do much to affect his chances of survival. You will
have to leave that to the doctors. But you can make the rest of his life
happier. Spend lots of time with him and take the initiative to start
activities. Make him feel loved.

------
tjaerv
Given that cancer cells are fueled by glucose (i.e., sugar metabolism), you
might read up a bit on carb-restricted diets:

[http://www.proteinpower.com/drmike/ketones-and-
ketosis/carbo...](http://www.proteinpower.com/drmike/ketones-and-
ketosis/carbohydrates-are-addictive/)

"Since cancers can't really get nourishment from anything but glucose, it
stands to reason that cutting off this supply would, at the very least, slow
down tumor growth, especially in aggressive, fast-growing cancers requiring a
lot of glucose to fuel their rapid growth. Thomas Seyfried [showed] that
ketogenic diets in animals and humans can stop malignant brain tumors."

~~~
spartango
Please, please do not suggest treatments for your friend, especially those
suggested by people on the internet.

People on the internet may mean well and show you interesting things, but your
friend's medical care is best managed by his oncologist/primary care
physician. Interfering with their work will likely do more harm than good.

Definitely encourage your friend to ask any and all questions about his care;
communication between doctors and patients is helpful for everyone involved.

Self-medication, whether by diet or drugs, is a terrible idea. People die
doing this.

~~~
marckemil
agree with spartango. Cancer is extremely complex and any simplistic approach
is BS (or a money grab). Staying away from the internet and asking questions
directly to the oncologist is usually the best thing to do.

------
dguaraglia
I don't know if there's anything you can do, except for giving him comfort and
maybe pointing him to resources.

As a cancer patient myself (although my prognosis was way better than his and
I seem to be recovering just fine after 2 years in remission) I'd tell him to
be careful about the way he reads the '35% survival' number. In most cancer
studies the groups are defined by the _stage_ of the cancer, which means all
patients with, say, 'testicular cancer, non-seminoma stage IIIc (bulky)' will
get put together in the same group, independent of age, physical condition,
access to excellence centers, psychological conditions, etc. But obviously a
healthy 19 year old with a supportive family, access to good doctors and a
strong will to live will fare much better than a 60 year old with a
compromised immune system and a late diagnosis. That's not even accounting for
selection bias (certain cancers happen mostly to people in a certain age
range, say 45-60, or 15-30 in the case of testicular cancer) so the average
survival rate is _even more_ skewed.

In other words, if he was healthy before the cancer and keeps his morale up,
he's got a _great_ chance to be in the 35%! Tell him not to despair. Chemo is
a bitch, getting an infection while neutropenic is no joke (I got two
pneumonias in a period of 3 months, _worst pain ever_ ) and there's every
reason to feel like shit. But once it's over, it's like having a new chance at
life and it gives you a completely different perspective.

Please feel free to PM me.

------
cjbenedikt
Try and contact Prof. Zaenker at Witten/Herdecke University. [http://www.uni-
wh.de/university/staff/details/show/Employee/...](http://www.uni-
wh.de/university/staff/details/show/Employee/zaenker/) He is one of the
world's foremost immunologists and spent decades in experimental oncology. He
was most helpful for me in the past and at least is very outspoken when it
comes to the chances of a recovery.

~~~
nodemaker
Thanks a lot! I will send him an email. Could I by any chance use your
reference?

~~~
cjbenedikt
You certainly can, he may not remember me though. Last time we were in touch
is 15 years ago. I was in London and asked his advice for 2 year old twins
with Leukemia. They have since recovered and are both healthy.

------
gesman
[http://c.gg/anita](http://c.gg/anita)

She went into coma after 4 year long battle with cancer as her body started to
shutdown. She stayed in coma for more than a day. Then she woke up from coma
and completely healed herself within weeks, leaving no traces of cancer in her
body.

She understood the true causes of her cancer and how true healing occurs. She
explains it all in her interviews.

Hopefully it will help to get a new perspective.

------
mMbHrQG
For whatever it's worth... both myself and wife are cancer survivors. We are
both cancer free past the most likely period of recurrence. Basically the best
outcome one can hope for in these situations.

My advice to your friend and you: find things to take back control. The
helplessness and lack of control as a patient are the tip of a downward spiral
that is hard to escape.

To that end I recommend these two books that have helped me personally:

[http://www.amazon.com/Foods-Fight-Cancer-Essential-
prevent/d...](http://www.amazon.com/Foods-Fight-Cancer-Essential-
prevent/dp/0756628679/ref=sr_1_1?s=books&ie=UTF8&qid=1394500880&sr=1-1&keywords=foods+that+fight+cancer)

[http://www.amazon.com/Anticancer-A-New-Way-
Life/dp/067002164...](http://www.amazon.com/Anticancer-A-New-Way-
Life/dp/0670021644)

Oh and ignore the stats. Mine were very good, my wife's were really poor.
Cancer is a very individualistic disease and battle. No two cases are exactly
alike. We are both alive, don't let him lose hope.

------
h43z
I don't know how to hack his chances of survival but i would start to make the
time he has left really nice and good. If he has programming skills why not
start a project/hackathon maybe some ctf's or a game so you can just hang out
and brainstorm on an idea. How about a little lan party with his best friends.
Or start some tv show e.g Lost. Good luck.

------
arthuredelstein
One thing I learned from the experience of losing a family member to cancer is
that doctors aren't all that smart or careful oftentimes. I encourage you and
your friend to learn as much as possible, and get a variety of opinions. Stay
away from pseudoscience, but don't assume doctors have thought of everything
or are up to date on the science. Wikipedia and Google Scholar are good places
to start.

------
MarkCancellieri
Do some research on intermittent fasting. There have been studies that suggest
that it can improve the effectiveness of chemo and other therapies.

------
godlikemouse
Recent cancer research has shown that cancer is more or less an immuno
problem. Regarding this, new treatments are available utilizing high doses of
vitamin C given intravenously. The results look really promising. You might
want to suggest this as a possibility of alternate treatment if chemo
treatments don't seem to be working.

~~~
projct
What? [http://www.sciencebasedmedicine.org/high-dose-vitamin-c-
and-...](http://www.sciencebasedmedicine.org/high-dose-vitamin-c-and-cancer-
has-linus-pauling-been-vindicated/)

------
alien736
Look up laetrile. Found in apricot seeds. Not an FAD cure, but might help.
I've heard of good stories. Or THC oil has been known to have effects as well.
Radiation itself is a carcinogen and chemotherapy is poisoning the entire body
along with the cancer, and destroys the immune system. Look it up. Plenty to
google here.

~~~
projct
"Available scientific evidence does not support claims that Laetrile or
amygdalin is effective in treating cancer or any other disease. Both contain a
small amount of a substance that can be converted to cyanide in the body, and
several cases of cyanide poisoning have been linked to the use of Laetrile.
The U.S. Food and Drug Administration (FDA) has not approved Laetrile as a
medical treatment in the United States."

[http://www.cancer.org/treatment/treatmentsandsideeffects/com...](http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/pharmacologicalandbiologicaltreatment/laetrile)

------
Lidador
Forget the Netherlands doctors. Flew him on a plane as soon as possible to
German:

Visit this site: immune-therapy.net

There's even more news about this on HN:
[http://www.sciencedaily.com/releases/2014/02/140219142556.ht...](http://www.sciencedaily.com/releases/2014/02/140219142556.htm)

------
markbernard
You and your friend should read this article.

[http://robbwolf.com/2013/09/19/origin-
cancer/](http://robbwolf.com/2013/09/19/origin-cancer/)

------
jcr
I lack the required medical education to make any type of suggestion, and if
you and yours trusted blind suggestions from the Internet, you'd probably be
in a lot more trouble than you already are. With the needed disclaimer made,
I'll share the links I've collected over the last year. They may or may not
turn out to be useful, but they are some of the leading edges of cancer
treatment research as far as I'm aware.

[http://majetilab.stanford.edu/](http://majetilab.stanford.edu/)

[http://med.stanford.edu/profiles/majeitlab/faculty/Ravindra_...](http://med.stanford.edu/profiles/majeitlab/faculty/Ravindra_Majeti/)

[http://stanmed.stanford.edu/2012summer/article7.html](http://stanmed.stanford.edu/2012summer/article7.html)

[http://www.phillymag.com/articles/carl-june-key-fighting-
can...](http://www.phillymag.com/articles/carl-june-key-fighting-cancer/)

[http://unitedwithisrael.org/enlivex-innovation-leads-to-
effe...](http://unitedwithisrael.org/enlivex-innovation-leads-to-effective-
new-cancer-treatment/)

[http://unitedwithisrael.org/israel-develops-cancer-
vaccine/](http://unitedwithisrael.org/israel-develops-cancer-vaccine/)

[http://portal.acs.org/portal/acs/corg/content?_nfpb=true&_pa...](http://portal.acs.org/portal/acs/corg/content?_nfpb=true&_pageLabel=PP_ARTICLEMAIN&node_id=223&content_id=CNBP_029904&use_sec=true&sec_url_var=region1&__uuid=73e92495-afbe-4416-a18c-2e0b4bbc2c79)

[http://www.bbc.co.uk/news/health-14572284](http://www.bbc.co.uk/news/health-14572284)

[http://www.dailymail.co.uk/health/article-2275650/Scientists...](http://www.dailymail.co.uk/health/article-2275650/Scientists-
discover-body-destroy-cancerous-tumours--need-drugs.html)

[http://www.eurekalert.org/pub_releases/2013-04/uom-
bct040313...](http://www.eurekalert.org/pub_releases/2013-04/uom-
bct040313.php)

[http://web.mit.edu/newsoffice/2013/how-melanoma-evades-
chemo...](http://web.mit.edu/newsoffice/2013/how-melanoma-evades-
chemotherapy-0407.html)

[http://www.atsdr.cdc.gov/risk/cancer/cancer-
laboratory.html](http://www.atsdr.cdc.gov/risk/cancer/cancer-laboratory.html)

[http://www.nature.com/nature/journal/v485/n7396/full/485041e...](http://www.nature.com/nature/journal/v485/n7396/full/485041e.html)

[http://metro.co.uk/2013/06/19/naked-mole-rat-may-hold-the-
cl...](http://metro.co.uk/2013/06/19/naked-mole-rat-may-hold-the-clue-to-
beating-cancer-3848778/)

[http://www.phillymag.com/articles/carl-june-key-fighting-
can...](http://www.phillymag.com/articles/carl-june-key-fighting-cancer/)

[https://news.ycombinator.com/item?id=6231876](https://news.ycombinator.com/item?id=6231876)

[https://www.seas.harvard.edu/news/2013/09/cancer-vaccine-
beg...](https://www.seas.harvard.edu/news/2013/09/cancer-vaccine-begins-phase-
i-clinical-trials)

[http://www.sciencedaily.com/releases/2014/02/140219142556.ht...](http://www.sciencedaily.com/releases/2014/02/140219142556.htm)

[http://www.mskcc.org/pressroom/press/cell-therapy-shows-
rema...](http://www.mskcc.org/pressroom/press/cell-therapy-shows-remarkable-
ability-eradicate-clinical-study)

[https://news.ycombinator.com/item?id=7371906](https://news.ycombinator.com/item?id=7371906)

I wish you the best!

------
superduper33
Treat him as a person and as a friend like you did before.

------
neverminder
This was discussed just today, I suggest you read it:
[https://news.ycombinator.com/item?id=7371906](https://news.ycombinator.com/item?id=7371906)

