Ask HN: My 19 year old friend has cancer. How can I help him?
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.
43 comments
[ 2.7 ms ] story [ 93.1 ms ] threadwhen 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.
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.
If you would like, I can provide links to papers that support this hypothesis.
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?
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.
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.
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."
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.
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.
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.
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.
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.
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
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.
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.
http://www.cancer.org/treatment/treatmentsandsideeffects/com...
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.
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://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
http://www.nature.com/nature/journal/v485/n7396/full/485041e...
http://metro.co.uk/2013/06/19/naked-mole-rat-may-hold-the-cl...
http://www.phillymag.com/articles/carl-june-key-fighting-can...
https://news.ycombinator.com/item?id=6231876
https://www.seas.harvard.edu/news/2013/09/cancer-vaccine-beg...
http://www.sciencedaily.com/releases/2014/02/140219142556.ht...
http://www.mskcc.org/pressroom/press/cell-therapy-shows-rema...
http://robbwolf.com/2013/09/19/origin-cancer/