I created this account on July 28, 2014 [1] - I had(have?) stage IV Colon Cancer with liver metastases. I did a FOLFIRI regime with cetaximab, then a colon resection with a general surgeon.
My oncologist was great (ucsf medical center) - but the surgeon refused to address my liver mets - they were too large and distributed.
My wife found out about a specialist at Sloan-Kettering in Manhattan that uses something called a Hepatic Arterial Infusion Pump - a hockypuck that delivers 50x a chemo dose directly to the liver. That was implanted in my abdomen and I flew between SF and New York to get it refilled every 4 weeks for six months. Their surgeon then resected 75% of my liver. (Skipping a few steps here. I had another met that they couldn’t get surgically and they got it with 10 rounds of radiation.)
My company was very supportive and our health insurance picked up most of the cost - over US $2million (so far?)
I was hospitalized several times after the surgeries for post operative infections - in a way they seemed far more difficult for the doctors to address than the cancer itself.
Oh, while the Cetaximab shrank the tumors, the skin rash it caused was absolutely wretched - my cuticles would bleed and had to wear finger cots and gloves to protect them. And my eyelashes grew about 3x their normal length.
>My company was very supportive and our health insurance picked up most of the cost - over US $2million (so far?)
This is the first time I'm hearing something good about a insurer in a very long time, That too for a such a large amount. I presume it's likely because you work for a large client and they're very supportive. I'm glad this is happening.
Meanwhile, I have bone related issues(Achondroplasia) and the insurers here(tied up major international brands) outright deny me a health insurance policy[1] against the guidelines of regulatory body and numerous supreme court verdicts on related scenarios.
After COVID disaster, It seems like the health insurers don't even try to wear their disingenuous masks anymore.
Thanks for sharing your story. It's a good reminder about how oncology is still as much as art as a science, and outcomes vary widely depending on whether you have access to the right providers.
Even if the absolute death rates for some cancers are relatively unchanged, one of the amazing things I’ve observed is that medical advances have increased the long term survival rates of terminal/metastaticized cancers. It’s partially due to the development of various drugs that have been identified as effective against various specific mutations. Even if the cancer is incurable with existing technology, they can extend lives by years, which is nothing to sneeze at. Especially considering many people get diagnosed with cancer once they are elderly already, it can mean the difference between dying directly of cancer and living long enough to die of something else - ie the cancer becomes something more like a chronic condition than it does a direct threat (for a period of time).
One of the interesting developments is precision medicine: we can now use genomic sequencing and AI to "search" for the treatment that is most likely to be effective against a particular individual's cancer rather than following the rough "standard of care" playbook (for example, depending on the type of cancer, the standard of care might be 6 months of chemo, and if that doesn't work try something else, repeat until cancer goes away or patient dies). The precision medicine approach at this point seems to be among the things that we try if the standard of care doesn't work, but hopefully one day it will be step one (chemo sucks and it is an expensive use of precious time). In addition to searching for treatments, we can also search for clinical trials for which a patient is a good fit--this helps both the research side (it's very hard to find qualified patients) and possibly patients who don't have better options (and of course the research itself benefits future cancer patients).
This sounds like something insurance will either refuse to cover for being expensive or make you try 5 other approaches first before agreeing to cover it, at which point it'll probably be too late.
Unlikely. It will rule out treatments that are unlikely to work, saving money. What we are seeing is Simpson’s paradox. Genomics and precision medicine allow you to segment populations at a higher resolution then before.
It may rule them out. But many standard-of-care chemo drugs are quite cheap.
When I had leukemia, my first rounds of chemo used cheap drugs. (The drugs were far cheaper than the daily hospitalization costs, which was required due to drugs obliterating the immune system.) The insurance company didn't require any oversight into the process.
But once the chemo stopped working and a much more expensive treatment was needed, the insurance company became quite a pest. I'm fortunate have saved a lot of money, so I didn't delay treatment until insurance approved it. (The 2-3 weeks between treatment starting and the final approval from insurance may have actually made a difference between life-and-death when dealing with aggressive leukemia.)
I’m glad you’re here and a survivor of that hell. Yes, what you are describing is a very real problem. It’s something we need congressional action on. Call it a surprise medical bill but more rather a surprise insurance denial. I am no stranger to insurance battles…
I actually should have put it differently. Precision medicine will bring new treatments to the standard of care because we will be able to find the correct drug for you or me.
Exactly. Insurance companies are very interested in Real World Data (RWD) around genomic based treatments. By using those data they can have a better sense of which patients would be likely to respond to which drugs, and steer treatment that way.
To the extent this is true today, I suspect it's precisely because the precision medicine approach is not yet the standard. I.e., insurance companies want you to do the standard of care, but if/when precision medicine _becomes_ the standard then insurance companies will embrace it (or that's my hypothesis, anyway).
This is partly why it’s important to save for retirement so you can be well capitalized to fund such treatments on your own if they should become necessary.
How much will a bit of sequencing and CPU time cost?
5k what genomic sequencing for other cancers cost is peanuts in cancer care.
There are many drugs where one infusion (of many needed) is more expensive than that.
This sounds very similar to participating in a clinical trial and to me ironically seems to be the opposite of precision medicine.
The Nagourney Cancer Institute cultures live cancer cells from the patient to test for what drugs may work. Doesn't work for everyone, but seems more in line with precision. Whereas genomic sequencing hasn't produced the amazing results that were expected.
> This sounds very similar to participating in a clinical trial and to me ironically seems to be the opposite of precision medicine.
yes, to be clear this is a description of "standard of care" in which oncologists follow a playbook based on the type of cancer. Precision medicine (as I, a lay person, understand it) involves picking a treatment that is very likely to work based on an individual's genes, the genes of their tumor, their past medical history, and other relevant factors. The idea is to use all available information to identify the treatment that is the most likely to succeed for that individual.
Figuring out the costs, and who's going to pay for it is one thing, and it's serious - I hope we find solutions there. But, in terms of being gamechangers, my hope is in 10-20 years we will be able to identify genes causing cancer mutations and use CRISPR to edit them out. All this will need massive breakthroughs in leveraging AI , ML and Big Data. Hope we can put an end to Cancer this century at the latest, would prefer it sooner in my lifetime, but I know this is our (humans) ultimate rival /enemy in the game of Life.
I'm in a similar situation. Partially have self-serving hope, but agreed that the game is starting to shift. The goal is now to buy enough time with the current drug you can move to the next version. So if you get 3 years from the drug and new ones come out every 2, you might get to die of something else.
Also aggregated death rates will always lag if treatments are improving.
My dad was diagnosed with a very rare type of stomach cancer called GIST at 42. The average survivability at that stage for GIST at that time was 6-12 months. Zero patients lived more than 5 years.
He was given experimental(at the time) drug called Glivec as it was being tested specifically against GIST and it was literally one of these "there's nothing else, so might as well".
He lived another 8 years after that, until cancer came back and the drugs stopped working.
When he was first diagnosed I was a teenager, my sister was a child - thanks to this drug he was able to see his kids go into adulthood, and obviously spend 8 more years with his wife.
Whether four or eight years, either is an enormous gift when facing a terminal illness. There is no question about it. It's even more so the case if a person is 40 years old than if they're 80. The 80 year old has already lived a full life, death is far more acceptable, tolerable, at that age for most people.
I suspect a person would have had to have never seen a loved one confront a terminal illness, to believe a year of additional time isn't a lot given the context.
My mother died relatively young from small cell lung cancer. At the time there were no specific therapies for it, it was often caught late, and typically a person would die within 6-12 months. Almost nobody would make it more than three years. She lived for around 20 months post diagnosis, and that was a lot of very valuable time, even if it wasn't enough time.
I've observed across my lifetime that some people live more in a year than other people manage to in a decade.
How quickly time passes objectively and how we experience time are obviously two different things. Perhaps the skeptical parent was failing to grasp the significance of the difference. When facing a terminal illness, how you experience time is drastically altered, even if the seconds tick by as they did before.
I appreciate you taking the time to tell your story. It’s easy to view expensive treatments that only extend someone’s life by a year or two as too costly but those remaining years can be the most important for that person and their friends/family.
Yes, of course, but the point is that it wasn't known at the time when he was prescribed treatment. A "good" case for him would have been living another year, maybe two if lucky. The drug was experimental after all, and that it actually worked and gave him another 8 years of life was a huge medical achievement.
> Speaking of the number 4, awesome my comment already at -4, which is the cap.
I cannot believe how flippantly you're responding to someone who told the story of their dad passing away due to cancer, and yet you have the gall to also whine about downvotes.
Yes, but cancer is not a solved problem, and so people will get it and eventually die. Also, who cares if people live 40+ years? Those with cancer statistically don't, yet drugs can increase life expectancy. That's the point.
An extra day with your loved ones is paradise. Taking a drug and potentially gaining years?
Come on mate, it's not a surprise you're being downvoted as your attitude is a disgrace.
if you measure in terms of percentage, sure. But not everything is statistical... considering that this 40 year old has not planned to be not-around so soon, these few extra years might allow this 40 year old to sort out and settle certain affairs that would allow them and their family to part with more "acceptance".
I agree, my dad was diagnosed with stage 3 colon cancer in 2020. One of the drugs that he was given as part of the anti-cancer regimen "Avastin" - starves the tumor of blood supply, effectively limiting growth, this differs from conventional chemo which attacks both healthy and cancer cells.
After 22 cycles, he went into remission earlier this year.
Your wounds won’t heal. It also costs a fortune. I don’t think it clinically makes a difference in survival rates either. My wife had stage 4 colon cancer and they used it in conjunction with her standard chemo treatments for a couple of sessions. The incision where her port was installed never fully healed so they took her off of it.
Edit: when they took her off the avastin, her oncologist just said it was no big deal. They use it because it doesn’t hurt anything.
The changes in melanoma and lung cancer are mainly due to immunotherapy, which is a bona fide revolution in cancer treatment. It's almost embarrassingly simple, just turn off one receptor ligand interaction (PD-1 and PD-L1) that suppresses anti-cancer immunity. Nobel prize was given for the discovery. Importantly it works in earlier stage and later stage disease, and the same drug works in multiple different cancers which is quite unique for a cancer treatment. There are definitely people walking around today who are alive only because they received this treatment. Seems that you can stop it after 2 years as well and it largely keeps working.
These treatments cost about $100K - $150K per year. They don't work for everyone, or even the majority of people with melanoma and lung cancer. Generally they result in 15 - 20% of patients with otherwise fatal cancer having long term disease control, and some lesser percentage that are probably cured from the incurable. They require sepcialist multidisciplinary oncology care. There can be severe and permanent side effects, but these are almost aways preferable to being dead from cancer.
It is important to note that these drugs do not work well or at all for the most common cancers with large shares of overall cancer mortality (Breast, Prostate and Colon), so this decline in mortality isn't going to automatically continue year over year. Also note that lung cancer is still the number one cause of cancer mortality, and this is due to smoking. So although we should celebrate great science and fancy expensive drugs, always remember that lung cancer is a disease caused by our failure to think clearly about corporate ethics and healthcare. Big tobacco is remarkably profitable and that is solely because we agree to pay in cash and lives for the negative externalities of their product.
None of which are proven in solid tumours. Talimogene laherparepvec, a viral immunotherapy is another one in actual use, but is much less impactful than nivo/pembro/atezolizumab.
If you are interested in more of the history behind the different cancer treatments that we have today, "The Emperor of All Maladies: A Biography of Cancer" is a fantastic book about it. Probably my favourite book of all time, a lot of parallels with the themes in this article about prevention being a huge contributor, and how recently we've had some success in very targeted cancer drugs.
I can strongly second this. It is an amazing pop sci book. It tours history, it has the medical drama, it digs deep where other books just skimp the surface. You come away in awe of the ingenuity of this disease.
Treatment has progressed slowly because it turns out that it is extremely hard to find drugs that kill cancer cells and not regular cells, given that they are almost identical. It's not some big conspiracy, there is an incredible amount of money being spent on trying to find and develop these drugs.
I'm sure there are some instances where drugs to treat very rare cancers were not entered into trials because the company didn't think it was profitable - the book actually lays out one of the examples of this. But that isn't really relevant to the overall fight against cancer. The reality is that we have limited resources to develop and test new drugs, and how profitable a new cancer drug will be is a somewhat reasonable proxy for how important it is to develop.
You might try reading the book before arguing against a straw man of it.
With respect to drugs we have a big issue that we have a fundamentally flawed system where we only fund proper studies for drugs with patents. There are many cancer treatments with much more promising data behind them than the latest drug company drug. But these treatments can never get a large clinical trial funded to really prove that they work since there is no way to pay for the study.
In the mentioned book some examples that are given are Coley's toxins (a 100 year old treatment) that is highly effective for some patients. You can download a report on a particular cancer at mossreports.com and there are many pages detailing complementary treatments and the level of evidence for each of them. For example the supplements with the best evidence behind them for helping to treat most cancers are EGCg, Curcumin, Genistein, Resrevatrol, and Sulforaphane.
I do wonder if there will be trials of doing short chemotherapy or senescent cell clearing drugs in your 40s in the future. It might be better to kill these things before they even become noticeable as diseases…
You develop what could becomecancer cells every day, but your immunesystem gets rid of them.
More important would be tests to detect cancers early in before there are symptoms.
In addition to medical developments, I think that clean living has become more popular than ever. In 2021, you see people who would never have been interested in a healthy diet eating properly. And obesity is an significant risk factor for cancer.
I hope you're right, but over the past year we went kept packing on weight.
A majority of adults (61%) reported experiencing undesired weight changes since the start of the pandemic, with more than 2 in 5 (42%) saying they gained more weight than they intended. Of this group, adults reported gaining an average of 29 pounds (with a typical gain of 15 pounds, which is the median).
Depends where you live - you may have selection bias. When I go back home away from the wealthy bubble I see a whole lot of “dirty” living around and not a whole lot of wanting to change.
Ok, but hardly shocking, given the zillions of dollars and person-hours spent on cancer research and related public health initiatives...
Perhaps the most interesting tidbits here are regarding the increases in mortality from particular cancers, which seem in most cases to be related to increasing numbers of diagnoses of the relevant cancer types.
The original goal of mRNA vaccine research was to fight cancer. After being so successful in immunizing against COVID-19, the research is refocusing on fighting cancer.
Quote: Ozlem Tureci, who co-founded the German company BioNTech with her husband, was working on a way to harness the body’s immune system to tackle tumors when they learned last year of an unknown virus infecting people in China. ... [T]he couple decided to apply the technology they’d been researching for two decades to the new threat. ...
As BioNTech’s profile has grown during the pandemic, so has its value, providing funds the company can use to pursue its original goal of developing a new tool against cancer.
“We have several different cancer vaccines based on mRNA,” said Tureci, who is BioNTech’s chief medical officer.
Asked when such a therapy might be available, Tureci said “that’s very difficult to predict in innovative development. But we expect that within only a couple of years, we will also have our vaccines [against] cancer at a place where we can offer them to people.”
Quote: The vaccines that target tumor-associated or tumor-specific antigens (TAAs or TSAs) can specifically attack and destroy malignant cells that overexpress the antigens and achieve chronic therapeutic response because of immunologic memory. Therefore, cancer vaccines offer specific, safe, and tolerable treatment compared to other immunotherapies.
I just wish it were the same for pets. We've lost two cats to cancer in the past two years. There's so much they can do to extend quality of life, but not much in the way of actually extending their lives.
This is very heart breaking. I love my cat just like a child, he's my everything, and I spend an important part of my day, playing with him, taking care of him etc. Seeing him dead would absolutely devastate me: but being a 20 something, it's very likely this will happen sometime in my lifetime (my cat is 2 years old)!
Cats can live a pretty long time however. My grandmas two cats (sisters) lived from when I was 7 years old, to when I was 27 years old, and both died just months apart from each other. That's pretty good I think.
How much of this can be attributed to earlier diagnosis (death rate per year is obviously less for earlier stage cancers) and who much to better treatments available? Couldn't find an answer in the article
Does anyone know how someone not from the USA or other developed nations can get access to more advanced cancer treatments? Paying for advanced treatment isn't an issue.
There was a giant uptick in personalized treatment for cancer[1] that coincided with the end of the Obama era (Biden driving it after his son's death, in 2015).
I saw bits of it in my space with large scale analysis of genomic testing - particularly things like analyzing old drugs with new genomic data (drugs which failed in the past, retesting for the combo of the cancer:personal-genome SNPs).
My friend went through a Car-T recently for a lymphoma and something like that is near SciFi-tech in discussion when Steve Jobs had cancer, but available through the FDA today.
Does anything in this study confirm that personalized treatment or any cancer treatment is moving the needle? The minor decrease in overall cancer rate seems to be driven by fewer diagnoses rather than increased survival, at least for lung cancer, which is the single biggest change. Skin cancer death rate is lower and that does coincide with the one major technological advancement against cancer that has happened in decades: immune checkpoint inhibitors. Immune checkpoint inhibitors are not very personalized. In general personalized corresponds to a focus on cancer genetics and has had an extremely disappointing outcome (helps a few percent of people a lot or helps more just a little) compared to what was hoped for.
CAR-T therapy is absolutely how we imagined the “genetic age” would be. However, its applications to liver cancer (as well as other solid tumors) are far away from clinics.
Some cancers haven’t seen much progress in the last 30 years. For example, uveal melanoma is a death sentence, same as 30 years ago. Liver metastases don’t give you any chance.
Similarly, glioblastoma (a brain cancer) is still a death sentence. My dad died of it a little over 5 years ago, lasting about a year and a half from initial diagnosis.
Maybe a year later, John McCain came down with the same thing. In a weird way it was comforting to know that all the money and power in the world didn't make any difference in the outcome.
I don't hate the idea about personalized treatments, however this will be the excuse by physicians why they can't be replaced by AI and we need to continue the myth of medicine being Art and Science.
I am happy to see there is progress, but the death rate still feels high.
I am thankful for vaccines. If they can stop the cancer before it gets you and me I will be thankful for that as well . I think that people have been hoping for a cure for a long time. I am not optimistic that there will be a cure in time for me, but I hope just like everyone else.
Here is the link to the actual report: Annual Report to the Nation on the Status of Cancer, Part 1: National Cancer Statistics (PDF only) [0]
Also the survival rate is calculated based on a 5 year survival after diagnosis. Since detections are made earlier patients will survive well past 5 years even if the treatments don't improve. so it would appear that survival rates are also getting better.
I wonder if someone could give me feedback on this. I heard that basically all cancer cells switch over to aerobic respiration, ie fermentation, and that in this metabolic mode they can use glucose and the amino acid glutamine as fuel but not ketones. So some people have treated their cancer by eating zero carbohydrates and taking a special drug that disables glutamine, doing so intermittently, and they have seen incredible results from that.
A ketogenic diet or even a less restrictive lower carbohydrate diet can contribute to a slowing of the cancer growth for some cancers because cancer metabolizes large amounts of glucose. But keep in mind that many cancer patients cannot afford to lose weight, which makes such dietary changes very difficult.
The incredible stories that you hear are often true (stage 4 cancer remissions do occur) but usually involve selection bias. Usually it is hard to know what exactly worked, and it isn't going to work for everyone else.
If you are interested in looking more deeply into complementary cancer treatments I would recommend looking into the work of Ralph Moss.
There are many successful examples with such a diet. Here's an account from a person who successfully treated inoperable and aggressive brain cancer with his own protocol, with only animal foods:
I urge people who are tempted to downvote to look up "Zsófia Clemens" and "Paleomedicina", and look into the "paleolithic ketogenic" protocol. Paleomedicina is run by researchers and doctors, and they are treating many "incurable" diseases, including cancer, with a very high fat ketogenic diet based on animal foods.
The most succint explanation I have can give about how it works is that it resolves gut permeability, and puts the patient in a very ketogenic state.
I myself am in remission from multiple sclerosis with such a diet.
My oncologist was great (ucsf medical center) - but the surgeon refused to address my liver mets - they were too large and distributed.
My wife found out about a specialist at Sloan-Kettering in Manhattan that uses something called a Hepatic Arterial Infusion Pump - a hockypuck that delivers 50x a chemo dose directly to the liver. That was implanted in my abdomen and I flew between SF and New York to get it refilled every 4 weeks for six months. Their surgeon then resected 75% of my liver. (Skipping a few steps here. I had another met that they couldn’t get surgically and they got it with 10 rounds of radiation.)
My company was very supportive and our health insurance picked up most of the cost - over US $2million (so far?)
I was hospitalized several times after the surgeries for post operative infections - in a way they seemed far more difficult for the doctors to address than the cancer itself.
Oh, while the Cetaximab shrank the tumors, the skin rash it caused was absolutely wretched - my cuticles would bleed and had to wear finger cots and gloves to protect them. And my eyelashes grew about 3x their normal length.
[1] https://news.ycombinator.com/item?id=8095321