I am a pancreatic cancer survivor. It is considered incurable in 2019 and I'm here because of a 1930s era surgery called a Whipple procedure. Around 9% survive five years or more -- a number that hasn't really changed.
In a belt plus suspenders move I underwent 2 rounds (six infusions per round) of chemo plus 28 consecutive weekdays of radiation after surgery. All my doctors are amazed at my recovery, a few saying the best they've seen (though it came with diabetes and a different digestive pathway).
Chemo was awful. Mine came with a bag of steroids first to mask the effects for a few days. I scheduled my sessions for Thursday, knowing it wouldn't hit me until Friday night. One Saturday I slept around 20 hours.
However, by the end we had figured out how to minimize the effect of the chemo. I needed my wife who watched me diligently. Cancer is not a one person job! She made sure every time I opened my eyes I stayed hydrated and ate something.
Chemo should have gotten worse. It actually got easier.
My cancer never caused me pain. The treatment... that's another story. I left the hospital with my belly held together by 16 staples.
Trying to help my wife through chemo now, and the staying hydrated and eating something is kicking our butts. Her oncologist believes that her nausea is due to directly to disease progression and it's relentless.
We're now on a regimen of phenergen every 6 hours but that just prevents cyclic nausea from occurring AND it knocks her out to where she's sleeping at least 20 hrs a day. Then when she wakes up she can only eat a little bit or she'll throw it back up. For hydration we finally just got home health giving her a liter twice a week plus a liter at chemo once a week.
She just recently over the past day or two has started to be able to hold a bit more down, but she's essentially got a form of PTSD from throwing up 5-10 times a day for 2-3 months.
Congrats to you on beating it man, especially pancreatic. This stuff really sucks.
You don't have to take anything orally to treat dehydration. A bath or shower can help with hydration at times when she can't stand to take anything orally.
Dehydration isn't always as simple as a lack of fluids. It can also be impacted by a lack of electrolytes and inadequate fat.
So it may help to add salt to the bath. Table salt can be problematic for someone in frail health because of the additives. Sea salt, kosher salt or canning and pickling salt won't have those additives. You can probably find the latter two readily at a local grocery store. Good sea salt can be ordered online.
If fluids and electrolytes are insufficient and you think she may need more fat, this can also be remedied without giving her anything by mouth.
Coconut oil is high in medium chain triglycerides. These can be used directly by the body without being broken down via digestion, so the body can absorb it if it is applied topically (to the skin).
Coconut oil has a long history of being medically recommended by the medical establishment for people with serious gut issues, such as folks being treated for stomach cancer.
Don't overdo it though because it can promote nausea and diarrhea, especially when taken in large quantities. You want to do small amounts regularly so the body can handle it, not start with a tablespoon of oil at a time. That will not go happy places.
Coconut oil is a little on the sweet side, so some people don't like cooking with it because of how it impacts flavor. As an alternative, butter is a decent source of medium chain triglycerides.
Clarifying butter to make ghee can remove elements that some people don't tolerate well. This can be helpful to people in frail health as an alternative to oils they aren't tolerating well while sick.
Hey the coconut oil suggestion is awesome, thank you so much! I'll definitely look at getting some quality oil and adding it to our regimen. I tinkered with MCT oils and whatnot in the past for my own health and have definitely 'greased the chute' by accident lol.
Totally agree on the side effects of dehydration. I could see the cycle happening over the course of a week or two and we'd end up in the ER (8 times in the last four months now). We've finally got her set up with a port and have home health services coming by mondays and fridays with hydration (and labs). Then she gets a bit more during weekly chemo on Weds. We're only a week into it and it is already showing benefit.
Yep. There's a whole protocol that the nursing staff has to do when they 'access' (aka stick) it. Extra disinfectant, both my wife and the nurse wear a mask, then an adhesive cover applied right after the catheter is put in.
The way it was described is that the port doesn't have an immune system, so infection can camp out there. They said that if she got any kind of bacterial infection anywhere they may need to remove it because the infection can spread there and hang out.
That said, she's super stoked to have it (finally). My wife's arm's look like she's the world's worst junkie. Giant bruises up and down both because she's always been hard to get started with standard IVs and they've wrecked the veins in both arms. :/
Yikes! Yes, a port can be a huge improvement over being constantly jabbed and is often spoken of glowingly by patients who finally get them.
(Insert Borg jokes, if that doesn't offend. We made such jokes when I was taking care of a relative with cancer post-surgery with all the drainage tubes and what not. It helped put the kids at ease a bit.)
Humans can't absorb any significant amount of water through the skin in a bath or shower. If the shower raises the bathroom humidity level enough the patient might breathe in a tiny amount of water but it's not enough to matter.
That really doesn't fit with my experience. Granted, I have a condition known to cause very bad aquagenic wrinkling, so I likely absorb water better through the skin than most people. But I know someone who doesn't have the same condition who was able to mitigate dehydration with soaking in a tub when they were too nauseous to take anything orally.
The OP's wife has a port and is currently getting fluids that way. He's expressed zero interest in that portion of my remark. I don't see much point in arguing this.
> You don't have to take anything orally to treat dehydration. A bath or shower can help with hydration at times when she can't stand to take anything orally.
Dehydration isn't always as simple as a lack of fluids. It can also be impacted by a lack of electrolytes and inadequate fat....
Serious question: have you tried marijuana? I always figured if I ever ended up in this kind of situation that would be the first thing I would try to help me eat.
Yep. We just got her a medical card. She’s pretty old school, thinks its all bullshit, tried it once and said it gave her a headache and I haven’t been able to get her to try it again. :/
This is great thank you! Do you recall how you managed dosage with the capsules? Also with vaporizing does she use a dry herb vape or concentrate/oil/pen? I’m nervous about giving her a coughing fit.
Start from good bud. Highest strength / weight ratio.
You can get different sized capsules from GNC or similar stores.
A given raw plant will be similar by weight, but does vary some.
When you bake it, go until it is crunchy dry. Can be an hour, but watch temp. At 250, THC boils off into the air. I used an oven thermometer. Preheat, until you see 235, then put your stuff in there.
I used foil in a shallow pan, and foil to cover it.
Then fine grind when done. I used a good coffee grinder.
You can test what you did by literally dipping your finger into the powder and licking it off. You will get a noticable buzz. That means it will work.
Get one of those little scales. And weigh what you have and make portions.
More in a bit.
Ok, back. Had a kid crisis to manage.
Fill capsules from a portion without packing down. They sell little jigs that hold the capsules for you to just scrape it in.
Close them up, and you have doses.
Then, someone has to take one. They take 30 minutes or so to hit, and can last for hours.
Titrate from there. It is experimental, and best done on days where you have no commits and do not need to go out.
The other simple thing you can do with activated plant material is make simple edibles. No bake cookies, hard candy, etc...
Just toss the powder in and mix well.
A mostly sativa plant is a head effect that leaves a person with energy, will remain awake generally. Indica is more of a body effect, and it is sleepy type.
Mine prefers sativa because after mental adjustment and tolerance, she will still be active. We reserve indica for can't sleep nights.
You can research these things online. I did and learned a ton.
I tended to sample what I made as I do not use the stuff at all, but do want to know what it is capable of. Truth is, a little goes a long way for us not sick or hurting people.
But for sick or hurting people, it takes more. Just know that.
Be careful, be clean, don't judge, try to have fun, be positive. If it works for her, this is a special thing you can do, and it is just nice, human.
Made our lives much better. This stuff is a mood amplifier. If you want it to be good, it tends to be.
Every so often, I will have some and enjoy a meal we cook together, movie, music. Those are nice times we look forward to.
That's so many steps. All I do is put the flowers on parchment paper or any surface in the oven for 30 mins at 245F. There's no need to put it in capsules. It stays fine in a bag for months as long as it's dry enough where you are. I find weaker cannabis is actually nicer for dosing because then it's easy to guage by sight. Just chew up the flowers and swallow. The taste isn't great but it grows on you.
To get started, I'd say eat an amount about the size of a pea then you can eventually find a schedule and dosage that gives desired effects. With more frequent dosing of smaller amounts, (4-6 hrs for me) you can have the benefits while keeping enough tolerance on the mental cloudiness to not get headaches/overwhelmed. There are definitely unique benefits to high-dosage meditative experiences though too.
As someone taking cannabis for breathing difficulties, when I realized I could use such a simple preparation to make it edible, it made life so much easier.
Totally. 245F is bit brave, unless you are near sea level :D
In my experience, people who ask about dosing tend to want a little more than, "looks right." And the capsules travel well.
Also, nausea sufferers avoid the taste. They often need to.
I got a jar labeled for herbal sleep aid supplements. The finished capsules look pretty much the same. It is perfect. She never gets questioned.
What you said is totally valid though.
Great comments on the 4 to 6 hours.
I do not use it medically, but have made a ton of different preparations for others. Worked through all forms too, oil, tinctures of various kinds, powder...
I found it all interesting and fun. Some of that work is no longer legal, but it was when I did it.
Made a few candies for myself and those vacations out in the woods.
Strange times. We can talk about these things more with fewer worries.
Wow this is incredibly helpful, thank you for all the detail...your description alone makes me excited to give this a try.
I've got some pretty good bud from the local dispensary all sealed up and found a source for capsules in town. Will probably give this a go today. Thanks so much!!!!
Leukaemia survivor here... It might be a stupid question and everyone is different, but have you tried fresh fruit and ginger ale?
I went through six months where that was all I could eat/drink. Another patient in the ward suggested ginger ale and it was a surprise (had never drank it before... or since).
Nausea got so bad that even thinking about it (for example when a doctor asked) would trigger throwing up so I get what you mean about PTSD.
Not stupid at all!! For a while apple slices and peanut butter were a staple but she throws that up regularly now. Blueberries are still good if mixed with something, a little watermelon.
Haven’t tried ginger ale, but will pick some up today. She says she doesn’t like it but we’ll give it a shot. Thanks for the suggestion!
A friend of mine had a Whipple procedure but it ruined his quality of life (he couldn't eat almost anything) and he died not long after. He wasn't even into his mid-40's, CMU alumnus and worked on XEmacs.
My father unfortunately passed away from the same cancer. 6 months after the diagnosis, having already done 6/8 chemo infusions. His liver was giving up by then. He also went from nearly 90kg to around 42kg in the end.
It is really a terrible cancer. He didn't have any symptoms until the year before his death. By then it was stage 4 already.
Not the OP but I had Hodgkins Lymphoma and I was like:
"Hi, I noticed I have this weird lump. This is a lymph node right? And those are supposed to swell up if I'm ill but then go away? Well this lump is two weeks old." - no pain, just I had noticed a lump and I knew that mysterious lumps need to be reported for diagnosis.
I'm told that probably the first person who'd seen Hodgkins before went "Oh, Hodgkins" but of course they didn't say so - I spent most of the next week or two worrying I'd wasted their time with nothing. It took maybe a few weeks, including a needle biopsy and blood tests before somebody actually formally told me I definitely had cancer and that they intended to begin fixing that immediately could I come in the next day to begin chemo?
Last year (so almost twenty years after I had Hodgkins) I thought I'd detected a new lump and that I was also experiencing peripheral neuropathy (finger nerves not working as expected) so I went urgently to my GP. Still no pain. The GP felt the lump, said "That's a sweat gland, they do that" and I realised later the neuropathy was from holding my mouse and keyboard in a bad way, it went away when I stopped. They did find a new lump in my neck (in hindsight I can't believe they could see it but I'd never noticed, I guess I really don't look at mirrors) but it wasn't dangerous although they did a bunch of tests just in case because after all I have a history.
A few people with Hodgkins report pain when drinking (alcohol). It's unclear why that happens, but most have no pain until _very late_. If you wait until the lump hurts you're probably going to die. In other cancers it will vary, obviously if there's a lump in an internal organ you can't necessarily feel that, and in some cases by the time you can feel a lump you're screwed even if it doesn't hurt.
Pancreatic cancer often presents with painless jaundice. The cancer causes a mass which presses on the common bile duct (the bile drainage from the liver), preventing it from being excreted.
Traditional chemotherapy is toxic to all cells. Cancer cells grow rapidly (part of what makes them dangerous). So the toxic effect gets the cancer cells first, since cells that are growing take up the most chemotherapy. But other cells grow rapidly too, like hair and intestinal cells, which is why cancer patients lose their hair and have terrible nausea/diarrhea.
All (almost all?) cells take up some chemo. So, you are actually dying, just hopefully more slowly than the cancer. And then we stop the chemo before you all the way die.
This is why the bar for a cancer diagnosis is so high. We need biopsies to try to get as close to 100% accurate diagnosis as possible.
That's right. Chemotherapy is, sadly, a very primitive treatment.
I regret we have spent so much money on cancer genomics, when some outsiders where trying to push for immunotherapies. Thankfully, that changed 3 or 4 years ago.
I am quite optimistic IO and cell based therapies will minimize these techniques. But there's more baking to be done before they can be rolled out. The "primitive" techniques can be quite reliable for specific cancer variants.
Seeing the effect of chemotherapy in a pet though was mind blowing. Visible tumors disappeared over the course of weeks. Sadly she relapsed a few months later, but it's a very powerful class of drugs.
In pharmacy school I was told the paradigm in infections diseases was to identify the amount of medication to kill the pathogen, then give a little more. In oncology, it's to identify the amount of medication that would kill the patient, then give a little less.
I've heard it put similarly bluntly - you hope the chemo kills the cancer before it kills you. I know a few people who are actively undergoing chemotherapy, and my grandfather died of pancreatic cancer (metastasised to liver IIRC), and it's quite clear the heavy tole it takes on them.
Visual loss is a very rare side effect of chemotherapy, and permanent visual loss even rarer. The more common and no less serious side effects of heart muscle damage and secondary leukemia are not mentioned in the tagline, being ill-suited as click bait I presume.
I have given the chemotherapy described here to many patients. There is wide variation in how patients experience chemotherapy. Some finish and tell me it wasn't as bad as they expected. I'm quite sure they only tell me things like this in the privacy of the consulting room. They would never say this to another patient in the waiting room. They feel bad for not having had the kind of widely publicised terrible experience.
Beyond the tagline, the account is reasonably accurate, although at times indulges in melodrama, about mitochondria of all things. It also doesn't do a good job of talking about the cognitive dysfunction associated with chemotherapy. This is a complex issue. In randomised trials, patients receiving placebo cancer treatments tend to report high rates of some cognitive problems. That chemotherapy itself is causal in every case is certainly in doubt. The mere experience of being diagnosed with cancer as you might imagine can have profound cognitive effects.
I am not quibbling for the sake of it. There are patients who decide not to have chemotherapy, and sometimes what they have heard about the experience from 'alternate' channels (such as newspaper taglines) has an out-sized influence on their decision. This is why a responsible editorial team would have had this article reviewed by medical professionals and patient advocates, and taken their advice about more judicious highlighting of potential side-effects. The article also doesn't quite deal with the fact that triple negative breast cancer is a really bad disease to have. Metastatic disease has a median overall survival of 18 months. If chemotherapy had not completely eradicated the cancer as it did in her case (the chances are about 50-50), 40% of patients develop metastatic disease in 3 years.
Chemotherapy is scary. It seems so counterintuitive to choose to inflict this kind of damage to oneself, in the hopes that it will prevent an even worse outcome.
Part of it is that there is this nagging feeling that it might not even be the right approach, given the legion of side effects of all kinds. Even oncologists get vague and evasive when this is questioned. In the end we can only rely on generalized statistics about survival rates, unsure of how it applies to individual situations.
I disagree with the anger people often show towards cancer. It's like people project some kind of malignant personality onto the phenomenon. I think of it as a natural part of life, like early hair loss. You can die from it, but death comes anyway, for one reason or another. At least with cancer you have time to get used to the idea, unlike an accident, heart attack or whatever. I guess I am a bit of a fatalist.
I don't understand what it means to "disagree" with someone else's personal emotional reaction. You wish people faced with some of the worst possible news would Vulcan up? Even from a coolly logical perspective, the slowness of it is not necessarily a bonus. It's not pretty. There's often a lot of pain.
Ten years after my mother’s death from cancer, I still have trouble when I remember her long agonizing death. I didn’t get use to it then, and I wouldn’t describe my feelings now as significantly better. The pain has become somewhat less intense, blunted by blurred memories. The death rattle went on for an eternity, and still haunts me. So, no, I wouldn’t say I got used to it. And, yes, I am still very angry at such a biological “evil,” capable of killing indiscriminately both young and old. I respectfully disagree with your fatalism when it comes to the suffering and death of a loved one.
> It seems so counterintuitive to choose to inflict this kind of damage to oneself, in the hopes that it will prevent an even worse outcome.
Especially since the "worse outcome" -- your own non-existence -- is the one thing in the Universe you are guaranteed to never experience (though your loved ones can experience your non-existence, and that can be a good reason to try to avoid it).
>is the one thing in the Universe you are guaranteed to never experience
Isn't this whole reason why dying is so scary? It would be less scary to die if there was some kind of afterlife (this is popular view given existence of various religions).
I’m pretty accepting of it, and in a weird way kind of looking forward to either “sleeping forever” or finding out I’m wrong about what happens. Still, in certain moments thinking about it, I feel fear. I think it’s instinctual.
That said, I think I fear the moments before death more than death. I went to the hospital recently for chest pain. Heart issues run in my family. Both grandfathers and all but one of my uncles (on both sides) had heart attacks before they were my current age. I do keep myself generally healthier than they ever did, but of course a huge chunk of it is genetic. I didn’t feel I was having a heart attack, but I didn’t know. (I wasn’t, I found out later.) I felt a significant level of fear.
My fear wasn’t really focused on death, but on never leaving the hospital; on the last time I did things being the last time; on being trapped, in a sense, prevented from doing the things I still wanted to do; and leaving my girlfriend and daughter to deal with either a protracted illness or my absence.
Death itself wasn’t really a worry. I think I kind of grok that things won’t be my problem anymore then and I’m cool with it. On the other hand, maybe that’s just delusion. I’ll be third in line when they start handing out immortality shots. (Trying to split the difference between flawed implementations and over-regulation.) I think it’s just because I like to live, but maybe I’m just afraid not to.
My thought is that it is because humans are prediction machines, and death is the most unpredictable event possible. Many cultures try to make death predictable by introducing concepts of heaven, which does seem to work for people who believe it.
A line from a passage I remember reading as a medical student, has stuck with me after a decade and a half. It described anticancer therapies as having the effect of "... poisoning patients to the edge of their existence..." It is not my belief that the side effect profile of anti tumor drugs has improved much.
So, yeah. Treatments for cancer can suck just as badly as the disease itself.
That’s not just the effect, it’s the mechanism of action for chemo — right?
It takes advantage of cancers rerouting blood and being overly aggressive in gathering resources to make those the first of your cells to die as you’re poisoned to death, on the theory that there’s some slightly sublethal dosage that kills only some of your cells (and hopefully, the cancerous ones).
My father was diagnosed with lung cancer 4 years ago. He is on his third round of chemo. I recommend reading "The Emperor of all Maladies" for an insightful book on cancer. Even though medicine has made great progress fighting cancer, the scorched earth approach is what most of these treatments come down to.
PBS produced a documentary film named Cancer: The Emperor of All Maladies in 2015, which is based on the Pulitzer Prize-winning 2010 book The Emperor of All Maladies: A Biography of Cancer,
I knew two people who both got cancer about the same time. One said no to chemo. The other said yes to chemo.
The differences in quality of life until death were dramatic. Neither had a longer life than was expected had they not taken the chemo, but the one who did lost hair, physical dexterity, then life. Suffered greatly.
The other one suffered much less, but still died.
The doctors all said take the drugs. You don't have to take the drugs. Do the research. Chemo isn't always beneficial.
Same experience with me, except that the one who said no to chemo died, and the other who said yes is still alive and has recovered (yes, after hair loss and other side effects).
"Do the research" - research is what scientists do, not what is achieved by Googling. No medical treatment is 100% perfect, unfortunately, but I and others I know prefer to play the odds rather than not.
Statistically speaking, the doctors were probably right. The guy taking the chemo effectively traded a better chance of survival for worse short-term quality of life. (And lost the bet.) But yes, it’s good to know the chances, so that you can choose to die in relative peace as opposed to making the rest of your life very difficult for a marginal increase in your survival chance.
I know someone who smoked a pack her day her whole life, and died at 90 while remaining in good health for the age the decade before.
I know someone who never smoked in his life and got lung cancer at 52.
Does that mean anything? Should we now conclude that smoking prevents lung cancer?
Quality of life, health, remaining lifetime, sickness progressions are all very complex interactions. All you can do is what happens on average, and play the odds based on that.
Dr. Gabor Maté theorizes that one's emotional state influences the expression of cancer in people who smoke. A smoker who is constantly in a state of emotional stress is much more likely to develop lung cancer than a smoker who is not.
My three parents all got cancer. The one that refused chemo was laughed at and insulted by her doctor. She had to make a courageous speach to be treated with respect.
I struggled to read the Guardian article thanks to the overly purple prose (I write professionally, that sort of writing really ticks me off), but the comment discussion here is fascinating.
I’m a cancer patient, a year out of chemo. Almost 1.5 years ago I was given 2-3 years to live. Bladder cancer metastasized to lymph, liver and lungs is not a good thing to have, apparently, and I was put onto a fairly aggressive chemo course to try and hold it at bay for a while.
The chemo was tough, but I started an intensive treatment course of my own at the same time: cannabis oil, large amounts every evening. It massively buffered my against the side effects; I had a good appetite and my hair got a bit thin but never got too bad. All the same I did very nearly die from sepsis a few days after I finished my chemo course – cannabis can’t help when your immune system is trashed and you pick up some normally minor and forgettable bug!
But the big deal for me is that scans now show “no evidence of disease” rather than just shrunk and static. My consultant is saying this level of response is unprecedented and he now expects to be having these meetings for years to come. I know we need proper large-scale trials, I know I’m presenting an anecdote here, and like most of y’all I’m suspicious of miracle cure stories. But the results I have now are SO far beyond anything my oncology team ever expected that I am convinced cannabis has played a significant part along with the chemo in the cancer battle itself.
I’ve been documenting my experiences and listing my methods and techniques in a blog. Is it acceptable to post the URL here?
The blog is at https://cancerwriter.com/ and it explains what I’ve done and how others can do it for themselves, in detail. At the very least it brings great relief, and I do think it’s far more valuable than just that.
Thanks, I've been looking through it. I was really hoping for good news about your treatment and I was happy to find it. Cannabinoids are an exciting medical frontier and I think you're doing a good thing here.
As someone doing cancer research and running a clinical lab, diagnosing cancer every day, I read the accounts of folks with cancer with a certain degree of lachesism. I want to know what this is. I know chickenpox and a broken leg and I know what it's like to have a loved one with cancer. But the thing itself, I do not know.
I spend every waking moment thinking about how to hunt cancer. It used to be reflex, now it's been so long it's somewhere between habit and addiction. My cognitive self knows I don't want cancer. But there's definitely a weird, fucked up interest in what it's like.
I have a lot of admiration towards your “obsession”; it way more meaningful than any of mine, so respect! May I ask, in your opinion, what can I do to lower my chances of getting cancer. So far, I monitor grilled meat consumption, do yearly fasts and watch my carbs. I’d appreciate any advice :)
Cut out any food or drink that includes processed sugar.
Limit alcohol consumption, except for a few glasses per week of red wine.
Reduce intake of any animal products with hormones or artificial feed sources in the supply chain.
RO filter water in the home, whether it’s to drink, cook with, or for other uses.
Filter air in your home, especially if you live near pollution sources (e.g. within 1500 ft of a major roadway). Make sure you buy an air filter with a carbon/charcoal component.
Exercise 30 minutes per day, moderate cardio is fine.
Avoid cheaply processed home goods (think: dollar store inventory) in favor of higher quality products, e.g. wood furniture instead of plastic or synthetic material.
Avoid carpet and synthetic flooring materials in favor of porcelain tile or natural wood.
Do most household cleaning with non toxic cleaners, e.g. vinegar based products with few extra ingredients.
The rabbit hole goes deeper, but there’s a list to start.
cancer treatment can also cause cancer and does - it was likely the cause of the death of my grandpa - but he got 10 more years due to a chemo-therapy from an otherwise lethal cancer - fuck cancer.
Many people, logically, would arrive to this conclusion. When the treatment starts, one is even energized. Then, in the middle a person regrets being so optimistic at all. They find their assumption of life being better than death more naive than they could have imagined.
It's not just the treatment. It is the wider picture of your life stopping. And within that context your body, deteriorating, is only one component.
It's not really clear to me what people are asking for. If cancer pays a visit, you have two main options:
1 - Don't treat the disease and either do nothing or basic palliative care. The cancer is unlikely to go away on its own and will begin to spread to your lungs and liver and brain and mutilate your body until it doesn't function and you die. Less up front pain, possibly less area under the painful waking hours curve, but almost certainly an early death.
2 - Treat using standard of care chemo/surgery/radiation. Doctors do the mutilating and poisoning a bit more selectively, you lose dignity, bodily functions, jobs, relationships and gain a stigma and a curse of uncertainty. Maybe they get the upper hand and you live a life with lower but possibly acceptable quality. Maybe they don't and you still die but possibly a bit more slowly.
There's no good option yet. People are stuck between a rock and a hard place right now. That's why you can't go more than a few hours without hearing about cancer on TV and see walks and fundraisers and ribbons and shaved heads.
My gf had grade III brain cancer. She had chemo two times. As chemos go, the one for brain cancer is fairly bening. The only side effect was nausea on initial chemo dose. Easily countered by antiemetic given only before first few initial doses, later withdrawn. The only other side effect was low blood cell counts that didn't manifest any symptoms but caused chemo to be delayed by a week till it recovered. Steroids given for brain swelling had more effect as they increased her appetite and kept water in her body causing her face to swell a bit. Ask your doctor for medication that amplifies urine production if you are given steroids. That helped when she was given it for the second time. Also after steroids were stopped her skin needed few weeks to recover from being prone to acne.
Possibly the only drug that might have felt like it was killing her was the morphine, as it can depress respiratory system, but at this stage there were so many things that might have been killing her that it wasn't important.
If I ever have a cancer diagnosis that would require extreme treatment or a pro-longed period of suffering, i.e. stage 3 or 4, I'd seriously consider shooting myself rather enduring months if not years of agony.
In theory I'd have insurance, however why put my family through years of seeing me suffer and become a person they might not recognize?
2 years ago my Grandfather was diagnosed with lung cancer, he was supposed to begin a course of chemo and various other treatments but instead he gathered the family around for a dinner one night and asked us all for our blessing not to go for treatment, it was a rather surreal moment. He died about 4 months later, he took some painkillers and a couple of other medications that improved his quality of life and in the end we all agreed that it was the best way, when he passed away he really wasn't much different than before the cancer, we avoided all of the agony of a long drawn out fight and watching him fall apart in front of us, he died happy and with dignity.
100%. I've done a round of chemo once, and I was 16, possibly the fittest I have ever been, and blessed with willful stubbornness then. It sucked donkey dick then, and I'd have none of those advantages now or in the future.
Live life to the fullest, make peace with the world, and go out on your own terms. Far better than eking out a couple years of pain and suffering being slowly poisoned.
For sake of reference, please look into hospice. They care for the terminally ill, focused on your pain and symptoms, and attend to your emotional and spiritual needs.
It's much nicer, and easier than making a huge mess for your family to clean up.
Perhaps not a decision you can truly consider until you get there. I've always been quite open to the idea of euthanasia in principle, but now that I live with a degree of chronic pain, I find myself becoming _vehemently_ anti-suicide - I'm not going to let this beat me - and the worse the pain is, the more intense that feeling becomes.
I'm quite aware there is probably a level of pain that may start my thinking in the opposition direction though, and no doubt different people will have different thoughts on and approaches to this.
I've often thought the same thing. If I'm looking at treatment that doesn't seem worth it, why should my only other option be to die on cancer's terms? Why not choose my own terms? I've talked to my wife about this, and of course our agreement is to do it in a way where she doesn't have to find me or deal with the mess — but you're not alone in this idea.
My point wasn't about hope, I "hope" to live a life without years of agony. Living through years of chemo on to live a diminished or slightly less-painful life with a looming chance of the cancer re-occurring isn't a life I "hope" to live.
Aspiring survivor of a stage 3 sarcoma here. I went through 8 months of treatment in 2016. I had no symptoms, no pain, NOTHING prior to being diagnosed. There was just a huge lump on my shoulder. The idea that I was about to willingly pump poison into my body and make myself sick when I felt perfectly fine was definitely hard to wrap my mind around. But, no question, it was the right thing to do. I'm married and have 2 young kids. Telling them I had cancer was the hardest thing I've ever had to do. Thankfully, I live near one of the world's best hospitals and had amazing doctors and nurses. My treatment was in-patient and they kept me loaded full of fluids and anti-nausea meds. Yes, those 9 months were grueling, but they were bearable. I'm very fortunate. I've known others who've gone through much, much worse.
This is an alternative to maximum tolerated dosing chemotherapy (standard) and it is called adaptive chemotherapy [0]. The aim with adaptive chemotherapy is to just stop the cancer from growing larger and using the growth advantage of the chemosensitive cancer cells to keep the resistant cells under control. This approach is much easier on the patient. I would look very carefully at this approach if I was ever in need of considering chemo.
I've had multiple relatives have cancer, some multiple times. Two relatives had cancer twice. Another, five times. Assorted others had cancer at least once.
I took care of a relative following a mastectomy. Making sure she got adequately hydrated brought her fever down. I got two hours sleep her first night back from the hospital because I devotedly pushed fluids at every opportunity.
She coughed up phlegm after I made her get enough food and drink into her to drop her temperature a degree. She said I probably prevented post-operative pneumonia.
My late father had colon cancer in his late sixties. He lost a third of his body weight before it was diagnosed.
My parents were told to get their affairs in order. He wasn't supposed to live.
His surgery that was supposed to be two hours lasted six. The cancer was much more extensive than they expected, but it hadn't invaded other organs. They peeled it off the outside of them instead of cutting out parts of them.
He had a thirteen inch scar from sternum to pubic bone with a dent going around his belly button. My mother treated the scar with German Penaten cream and treated his skin with Penaten cream.
Her mother died from uterine cancer when my mother was in her teens. My mother was convinced that radiation treatments killed her mother. She always had some excuse why my dad couldn't make one of his radiation treatments every week.
He lived about another two decades.
The cancer clinic at Martin Army Hospital was impressed with the condition of dad's scar and asked what they were doing. My mother explained it was the Penaten cream. They added it to their regime.
After my father defied his sentence of death, the civilian cancer doctor that treated him interviewed my mother on tape for two hours and changed the practices of his clinic based on what she said. The doctor knew my mother is the person who kept my dad alive.
Their big thing was hydration. They calculated how much fluids he needed and they made sure he got enough every day. Caffeinated drinks and alcohol did not count.
When he was too sick to eat, she made him homemade milkshakes or slushies once or sometimes twice a day in place of meals. On not so bad days, I think she used milk, good quality ice cream and fresh fruit. On super bad days, she used ice, frozen fruit and fruit juice.
He was gaining so much weight during a time when most cancer patients are continuing to lose weight that his doctor yelled at her to slow it down. He had a long-standing heart condition and her doctor was afraid she was kill him by putting too much strain on his heart with the rapid weight gain while he was still undergoing treatment.
My mother wanted to be a doctor in her youth. She delivered babies in her teens. She never got to be a doctor, but she was always patching someone up as long as I can remember.
personal sad story: uncle diagnosed with stage4 (mets) in late dec, got rounds of chemo 4 months after the diagnosis during which time the tumors didn't grow (based on the few bits we could read in his file). But after the 3rd round his health dropped to the floor, didn't last long after that. I believe the toll on his system was just too high. And I'm curious what are the mechanisms at play.
I cannot possibly fathom the terrible experience of cancer patients going through chemo. My great hope though is that a bunch of these will be rendered treatable with the immunotherapy solutions out there and being developed right now, which though expensive today for most people today, might be bought down by the demand supply mechanics of economics....
I'm surprised no one has talked about diet here. Not a single one. There are many cases of cancers being completed reversed by change of diet, many cancers survive off of glucose and so switching to a fat based diet has helped many people go into remission as well as dull and intensify the effects of chemotherapy.
Cancer is a living biological cell after all and will prefer certain sources of energy over others. Starve it of it's primary energy source (glucose) and it will die. Human non-cancerous cells on the other hand are very versatile and can survive off either fat or carbs. Sad how the first thing people would rather do is try chemo than give up off their carb and sugar addictions.
What you are saying goes against the science. The commonly accepted facts are that the prevalence or absence of glucose does not affect cancer cells' ability to grow.
Not a scientist, so can't chime in meaningfully, but you are perpetuating what is considered a myth, and very nonchalantly ("undergraduate studies two decades back"), leading me to question if you are qualified to hold such a contrarian viewpoint.
The article you linked says eating sugar doesn't cause cancer to grow faster, but any carbs we eat is converted to glucose, so removing only sugar isn't sufficient to starve cancer cells. Also, each cancer is different. Some use other sources of energy, some use multiple sources.
Giving up any addiction is good, especially sugar, alcohol, smoking, etc but telling someone to try this instead of chemo when they have cancer is criminal imho. I have seen people listen to that and then go back for chemo when it is too late. Maybe during chemo it can help or can’t hurt, but instead of... Ofcourse people decide what they do with their own lives, but do not state things as if this is proven or even shown outside a few vague cases.
It'd be helpful if you're gonna post something that sounds like pseudoscience to post a source with it. With all of the studies covering inane things, someone has got to have studied this.
It didn't have a source, but it's not pseudoscience.
The switch to anaerobic glucose metabolism is part of the evolution of cancer as it progresses. This is because oxygen diffusion into a solid tumour is a limiting factor upon its growth. Cells which switch off aerobic metabolism will be selected for, since only they will survive and proliferate in an oxygen-free environment. You'll find this in most cancer textbooks. It's not new; I was taught this in undergraduate lectures two decades back. This switch is actually one of the key control points which holds a brake on the progression of a cancer past ~1mm in size, which is basically the limit of passive oxygen diffusion into the mass.
It's fairly logical to keep glucose levels minimal to reduce the growth of this type of tumour, and removing sugar from the diet is a simple and effective way to do so. A diet which is based upon fats will do this, since fats can be converted to the minimal levels of glucose the body needs via beta-oxidation. This will reduce the metabolites available to the tumour significantly, compared with the huge spikes you get when you absorb it directly from the gut.
This post does not "debunk" what I said. In fact, it explicitly mentions the Warburg effect as something to target as a treatment possibility. And looking at two of the molecular cancer biology texts I have to hand (I did a PhD which involved vascularisation, angiogenesis and HIF-1α/VEGF/EGF), there are several examples of drugs which target the pathways related to this effect directly.
Also note that the link does not say, at all, that dietary restriction of simple carbohydrates is ineffective. What it does say, is that dietary restriction should be discouraged in case it causes malnutrition and/or weight loss, which can be counterproductive with effective treatment which itself can also cause weight loss. Which are completely fair points to make for safe general advice to the public; nothing here is black and white, and making definitive statements one way or the other would be both impossible and irresponsible.
So in some situations it may well be counterproductive. However, that is not saying that there are no situations in which it can be effective. Cancers are incredibly diverse, each type evolving in a unique way with different courses of progression. In some cases, it may well be the case that such restrictions can help.
yeah sorry, first time i read the comment, i missed the nuance.
My partner actually researches prostate cancer and i asked her about it and basically her answer is that its complicated. In her research, she found that cancer cells in the prostate are able to find other sources of energy so cutting glucose might not help. From what I understood (not a biologist) it basically depends on tissue and mutations.
No. They can make use of glucose or ketone bodies. I recommend a biology textbook before commenting on fairly basic and long-established facts.
However, even if they only metabolised glucose, the brain's requirement is for a constant but low level supply. It doesn't need to be provided by a dietary source; the body will synthesise it on demand from its energy stores. The cancer will need to compete for that small quantity with the rest of the body, which will limit its growth.
When you eat sugar, the body can't immediately store it since it takes time to do so, and blood sugar levels spike for a period before reducing back to baseline levels. During this time sugar is in great excess in the bloodstream and tissues, and the cancer is able to utilise as much of it as it can, which can result in its survival and growth.
The survival and growth of a cancer is largely based upon various kinetics, proliferation rates vs death rates, and the evolution of a cancer through selective pressure over time. One of the key switches is to anaerobic metabolism. It lets them switch to lactate production to survive a lack of oxygen. But it comes with a limitation: they are restricted to glucose and other simple sugars to survive. By strictly limiting their availability, it can have a significant effect upon tumour viability. Until it undergoes another change under selective pressure, of course, but it's a simple and potentially very effective course of action, without any great risk of harm.
I have empathy for the illness but the author seems to lack appreciation for the incredible system working to keep her alive. The article is sad for the illness and also is a polemic against the capitalist system that allows her to survive whatsoever.
Bah, she can be grateful for the system later if and when she survives, her fingernails have grown back and she can button up her own shirt. Meanwhile, I found the insight into her situation educational and heartrending.
If you step on a lego piece, do you immediately yell 'what a valuable and well-crafted toy product', or 'fuck that hurts'?
The details of what it’s like to live with that disease are insightful. I have a more raw understanding of what that is like now.
But intertwined with the article is a critique of every single bit of the system, and larger society, that is fantastically successful at keeping an ever increasing number of such patients alive. The author critiques the economic system, the hospitals, the doctors, the genders of the care staff, the drugs themselves, whether she even deserves to live given the potential to harm the environment, and on and on.
I’m an optimist, and in her position I would be so thankful that I have the opportunity to survive. My brother beat a horrible kidney disease at 6 years old that necessitated a 12 month hospital stay, and his memory from that period has been wiped. I do not hate the capitalist system that saved his life, I am very very grateful for the doctors, researchers, and support staff that saved him - as is he.
I generally agree with you, but after being a bystander to almost two years of treatments and probably half a million in medical bills being handed over to insurance, I can say with certainty there's a lot of fuckery and twisted incentives in the system. Yes amazing things are happening too, but there's a lot to get pissed about, and I'll give her some room to vent.
You've explained clearly that you would be a more grateful, appreciative suffering aggressive cancer patient than the author, whose choices doomed her to suffer alone.
HN comment section serves to allow us to debate and discuss the linked articles. The author explicitly chose to make her editorial not only about her situation but a larger critique of society, throwing bombs at everything. I’m not going to give her a pass because she has cancer as I vehemently disagree with her.
> In the capitalist medical universe in which all bodies must orbit around profit at all times, even a double mastectomy is considered an outpatient procedure. After my mastectomy, the eviction from the recovery ward came aggressively and early. The nurse woke me up from anaesthesia and attempted to incorrectly fill out all the questions on the exit questionnaire for me while I failed in an attempt to argue with her that I was not OK. I told her that my pain was not managed, that I had not yet actually gone to the bathroom, that I had not yet been given instructions, that I could not stand, let alone leave. Then they made me leave, and I left.
Unless you live in a world where money grows on trees, that happens in public systems too.
There are finite amount of resources and keeping a patient overnight, when it could be out-patient, means another patient, who needs that bed more, has to go without.
It’s not due to profit. And actually, the hospital would likely make more profit if they could keep you overnight.
if the current patient is only considered as an out-patient because their bed is needed, then i say the hospital doesn't have enough beds, and should either charge more per bed, or invest in more beds.
Sure, but there is always a need for more beds. It doesn’t end. At some point, the money runs out.
That’s what countries like the UK do with QUALY measurements. You have X billions of Euros to spend, so you spend it on the most effective measures and say “no” to everything else.
> It’s not due to profit. And actually, the hospital would likely make more profit if they could keep you overnight.
It has nothing to do with the hospital's profit, and everything to do with the insurance provider's costs. What makes you think the hospital is calling the shots in this case? The people who write the checks call the shots.
No, we spend so much so that companies like the one I work at can make billions and be in the Fortune 10. The huge costs are extraction of wealth and there isn't that much to show for it.
We also have a 2-tiered medical system where the ultra-wealthy and well-connected receive all the best treatments while the rest of us get fuck all.
We are perceived as nothing but ants in a giant colony to those who rule the world.
In a belt plus suspenders move I underwent 2 rounds (six infusions per round) of chemo plus 28 consecutive weekdays of radiation after surgery. All my doctors are amazed at my recovery, a few saying the best they've seen (though it came with diabetes and a different digestive pathway).
Chemo was awful. Mine came with a bag of steroids first to mask the effects for a few days. I scheduled my sessions for Thursday, knowing it wouldn't hit me until Friday night. One Saturday I slept around 20 hours.
However, by the end we had figured out how to minimize the effect of the chemo. I needed my wife who watched me diligently. Cancer is not a one person job! She made sure every time I opened my eyes I stayed hydrated and ate something.
Chemo should have gotten worse. It actually got easier.
My cancer never caused me pain. The treatment... that's another story. I left the hospital with my belly held together by 16 staples.