Ask HN: My 19 year old friend has cancer. How can I help him? | Hacker News Reader

Ask HN: My 19 year old friend has cancer. How can I help him?

39 pointsnodemaker43 comments

Hello HN,

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.

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.

View on HN

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.

Thanks a lot :)

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.

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

Interesting link. Will read that this evening. Thanks for posting.

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

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.

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?

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.

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

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

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.

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.

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.

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... .

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.

Thanks :) I will send him the article.

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.

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

Thanks for mentioned this. My first time through, I definitely did the push away thing. It's normal. Fortunately, my family and dear friends ignored my bad behavior and kept coming back.

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.

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...

"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."

Fructose. Otherwise agree on low carb, especially no HFCS.

A buddy got prostate cancer, switched to only meat and veggies, survived (then 10 years). I have no idea it it helped. At the time I thought he was cuckoo (for Cocoa Puffs). But now that I've adopted the troglodiet (tm), I think maybe he was on to something.

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.

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.

This doesn't pass a smell test as far as I can tell. Tumors adapt. http://www.cell.com/retrieve/pii/S0092867412015504?cc=y

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.

Try and contact Prof. Zaenker at Witten/Herdecke University. http://www.uni-wh.de/university/staff/details/show/Employee/... 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.

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

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.

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.

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/Anticancer-A-New-Way-Life/dp/067002164...

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.

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.

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.

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

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.

What? http://www.sciencebasedmedicine.org/high-dose-vitamin-c-and-...

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.

"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...

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...

You and your friend should read this article.

http://robbwolf.com/2013/09/19/origin-cancer/

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://med.stanford.edu/profiles/majeitlab/faculty/Ravindra_...

http://stanmed.stanford.edu/2012summer/article7.html

http://www.phillymag.com/articles/carl-june-key-fighting-can...

http://unitedwithisrael.org/enlivex-innovation-leads-to-effe...

http://unitedwithisrael.org/israel-develops-cancer-vaccine/

http://portal.acs.org/portal/acs/corg/content?_nfpb=true&_pa...

http://www.bbc.co.uk/news/health-14572284

http://www.dailymail.co.uk/health/article-2275650/Scientists...

http://www.eurekalert.org/pub_releases/2013-04/uom-bct040313...

http://web.mit.edu/newsoffice/2013/how-melanoma-evades-chemo...

http://www.atsdr.cdc.gov/risk/cancer/cancer-laboratory.html