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 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.
Which software? :o Curious!
Thank you for sharing, by the way.
Have you been able to continue hacking?
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).
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 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.
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.
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.
That assumes you have time for this. Very often treatment is started within days or even hours of diagnosis.
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.
How is that "ain't much"??????
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 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.
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.
There are also drugs that block epidermal growth factor (EGF), like Cuba's CIMAvax for lung cancer.
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.
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.
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.
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.
Example: when I was younger the 5 year survival rate for malignant melanoma was about 5%. Now? Significantly better .
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).
But yes diabetes isn't going down.
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.
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 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.
 - https://www.cancer.gov/research/key-initiatives/moonshot-can...
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.
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 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) 
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.
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.
If you look through on of the lead researchers' Twitter feed you'll see many examples of the resistance of mainstream medical journals to even publish their case reports https://twitter.com/ClemensZsofia/status/1413029877176020994