Comment by S_A_P | Hacker News Reader

Comment by S_A_P | Hacker News Reader

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Small PSA:

I’ve got stage 4 colon cancer- I see these sorts of articles passed to me from family members.

While encouraging that these discoveries are being made it’s not necessarily something that you can take to the doctor and get started with. The following needs to happen:

1- it applies to your cancer/genetics/geneticdefects 2- it’s in a stage that you can be part of testing in human trials which means usually a specialist cancer hospital. (As a side note I recommend MD Anderson as a treatment hospital. They treat me very well and advocate well with insurance fights. And if you have cancer, live in the US you will fight with you insurer) 3- Is it even ready?? Usually no. It’s just the first paper written about it and others need to reproduce the results. Then about 10 other lucky miracles happen and human trials can start. 4- don’t be afraid to go back and forth with your doctor.

I’m currently doing maintenance chemotherapy but some areas flared up and they wanted to add another chemo drug. There were 2 options and we discussed and went with the option I tolerated better.

I do HIGHLY recommend that you establish a rapport with your doctor so that you can discuss treatment options freely. The way it works at MDACC and I’m sure very similar to other cancer hospitals. Is they do all the typing and dna sequences up front. It helps them diagnose the cancer and prognosis etc. and then that lives in your chart. Typical treatment is to use traditional known chemo treatments and if they are not effective they start adding the trials that match your dna/cancer type.

Very long winded way to say unless someone in your life asks you to send these sorts of things it’s kind of like getting a lottery ticket for 10 years from now.

Stage IV CRC as well. Agreed, for the vast majority, it is still cytotoxic chemotherapy. I used to follow these innovations hoping to bring it up with my onc, but rarely do any of them work better than standard of care in vivo.

I hope you're handling maintenance chemo okay. Tumor DNA can change over time, so get a biopsy at some point to see if you qualify for other treatments.

The maintenance was pretty easy tbh. 5FU for 15 minutes (bollus) once a week.

Great point about tumor dna. It does change and the “usual” treatments become less effective. That’s when the experimental drugs are usually brought in to the treatment plan.

I am living a pretty normal life for 4 of 7 days. And honestly I’m grateful it’s only 3 days that I’m less productive or just kind of tired/ spaced out.

Another PSA- start your start up before health gets in the way. Health really is wealth and having time with energy and a clear mind is in shorter supply once health issues arise. But also balance work and life. Ok no more PSAs today :)

Health really is the only wealth, amen to that. Ah, my 5FU was a 2 day pump affair that left me in a totally nauseous haze; I do not miss that at all. 4 out of 7 days is great.

I hope you are able to get to even more tolerable therapies in the future!

> And if you have cancer, live in the US you will fight with you insurer

Why the fuck is this a thing? You pay for insurance. They should be on the hook. That's the arrangement.

Can you be denied treatments if the insurer won't pay and you can't afford it?

> Can you be denied treatments if the insurer won't pay and you can't afford it?

Yes, or you get treated but go broke. Medical bankruptcy is very common in the United States but unheard of almost anywhere else, despite those countries having better health outcomes. At some point paying three times as much on average is going to swamp everything else.

There’s been tons written about this over the years but some recent articles I read:

https://www.propublica.org/article/priority-health-michigan-...

https://www.propublica.org/article/blue-cross-proton-therapy...

That's the problem in the US, people are fighting so much for remote problems that were fed to them by politicians trying to be elected that they don't see the real problems they face. If all that energy was directed at changing what can make or break an individual or even in that case a family, people would have much better lifes. And the same goes with food quality and availability, it is absolutely disastrous on health and yet most of the areas in the US don't have easy access to non shitty food but have all the junk food they want.

I don’t know why it is a thing. But it is. Can give you a great example.

I was diagnosed in 2020. Went to a local oncologist who said (initially) I was stage 1. We caught it early. Then they do the colon resection and I wake up to the news that I’m stage 3c. I went through a 6 month treatment which knocked it back using the standard treatment (FOLFOX) and it was undetectable. Cut to 6 months later and it was back with a vengeance.

My oncologist ordered genetic testing right at the same time I decided to go to MD Anderson. The first thing that they wanted to do was the same genetic test. Great we say. My old oncologist ordered it.

My insurance BCBS declined to pay because my old oncologist ordered it and not the current one at MDACC. We / the hospital wrote 3 protest letters and they denied the claim meaning we had to pay 5k for the test. After dealing with insurance and the testing company we negotiated a lower price but be prepared to do so.

If you can’t afford it you are sometimes able to get payment plans. And there are endowments for situations where money is tight or no insurance. None of it is fun that’s for sure. Insurance companies are not your friend.

Pretty simple: it cuts into their profits. Your health is secondary to that.

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