Notes on My Chemotherapy • Hacker News Board

Re: Notes on My Chemotherapy

#91

Post by wholinator2 » Sat, Feb 06, 2021, 1:35 PM UTC

tehwebguy wrote: post #40

fab1an wrote: post #7

The absurdity of the American health care and insurance system will never not amaze me. It's just sad and weird, and even weirder that you will always find a bunch of intelligent folks to defend it. Wishing the author, who btw is a better writer than most writers, a speedy and complete recovery.

It's so cruel that it's hard for me to call it absurd. For instance this part from the article: Instead, insurance wants to make sure that you really-super-duper-need whatever it is they're going to give you, to the point where there's basically no way they can say no. is directly connected to this part: And, then, when my company switched insurance providers at the beginning of 2021, this nurse service stopped abrup…

It happened with my mother and her chemo for stage 4 colon cancer. She hadn't worked in years due to being laid off, not having a degree, having an extremely sick child (me) to care for. So she's temporarily working for my father, enough hours to get insurance. But dads company just switched insurances specifically because of the cost of her treatments and now they're drrrraaaaaaaagggggging out the process of getting much needed new chemo as it has grown back. It's easy to look at the situation and assume they're honestly just trying to kill her before they pay. As well it's a drug that would cost over $100,000 for a single course if she were to acquire it with no insurance.

Another point is that our insurance systems are so needlessly complex that there is no single person or pair of people that understand what's actually going on. If the insurance is denying you get trapped in a continuous loop of appeals, approves, offices, pharmacies, prescribers, etc. and no one is able to tell you 1. Why they're denying you 2. What exactly you need to do to not fucking die.

Im sorry but the system had become both absurd and cruel. I keep trying to remind myself that 80 years ago they wouldn't have been able to save her if they tried. It's still better. But to see this carrot perpetually yanked further and further away from you as you slowly lose your ability to keep up or keep going. And then, as the last light dims from your eyes, to see someone sprinting the carrot back to you and attempting to help you as best they can even though you're nearly past the brink.

That is the story I've learned.

Our system does have success stories. It is better than nothing. But any system that has the capacity for such inhumane cruelty in the face (in spite) of genuine humans trying to help sets a dangerous precedent for the future of its society.

Re: Notes on My Chemotherapy

#92

Post by treeman79 » Sat, Feb 06, 2021, 2:08 PM UTC

greedo wrote: post #20

greesil wrote: post #18

Earlier quoted context omitted.

What I'm trying to say is that it's rare in the general population. Maybe it's common enough in the population of people that have certain symptoms, like blood in stool, that it really does deserve a strong response and not to be ignored by a doctor.

The lifetime risk of getting colon cancer is 4% for men. It's the third leading cause of cancer deaths.

I’ve had tests done where false negatives ran 20+% this is well known. I had every single symptom of the condition. Test came back negative. Doctor declared no issue, no reason to continue care.

A better doctor confirmed the diagnosis with additional tests. Growing belief that a false negative may mean a worse variation of the disease. Episode cost me an added year of organ damage.

Re: Notes on My Chemotherapy

#93

Post by greedo » Sat, Feb 06, 2021, 2:31 PM UTC

splittingTimes wrote: post #33

greedo wrote: post #25

Earlier quoted context omitted.

In the next 15 years, more than one in 10 colon cancers and nearly one quarter of rectal cancers will be diagnosed in patients ages 20-34, according to the study. It also found that, in this age group, colon and rectal cancers are expected to increase by 90% and 124.2%, respectively, by 2030. For those ages 35-49, the predicted increase will be 27.7% for colon cancer and 46% for rectal cancer. Routine screening curre…

Do we know the cause of this? More consumption of red meats?

I've seen a study that points in that direction, but I don't think that's conclusive.

Re: Notes on My Chemotherapy

#94

Post by greedo » Sat, Feb 06, 2021, 2:33 PM UTC

agumonkey wrote: post #89

greesil wrote: post #14

Earlier quoted context omitted.

It still seems pretty rare, even if it's more common. I have had some similar symptoms, and similar interactions with doctors in the past. No, I don't think I have cancer. But, what I want to know is what is the probability of having this condition given the symptoms. In other words, use Bayes' rule. Most doctors seem incapable of thinking this way! If it's a 1% chance that I have a life-threatening condition because…

A few years ago there was a somehow public trend saying there was an epidemic of over diagnosis. People would have more medical exams like colonoscopy and would get treatment over the simplest signs and the effects were not good. I don't know how true it is, but it may explain why docs in general refuse to go too early on exams.

I've heard of this issue with mammograms, but not with colorectal cancer. Complications from a colonoscopy are very rare, and removing polyps before they become malignant is a pretty safe choice as well.

Re: Notes on My Chemotherapy

#95

Post by greedo » Sat, Feb 06, 2021, 2:39 PM UTC

ekianjo wrote: post #53

greedo wrote: post #20

Earlier quoted context omitted.

The lifetime risk of getting colon cancer is 4% for men. It's the third leading cause of cancer deaths.

> The lifetime risk of getting colon cancer is 4% for men. It's the third leading cause of cancer deaths. The most important part of your sentence is "lifetime". Prostate is 11%, but most people don't get prostate cancer in their 30s.

The important part of this entire thread is that if you have symptoms, don't let the bell curve affect whether you seek treatment/exams from medical professionals. Colorectal cancer is no longer a rare thing in people under 50, and many practitioners operate under the naive idea that it doesn't occur in younger people.

Re: Notes on My Chemotherapy

#96

Post by MattRix » Sat, Feb 06, 2021, 3:54 PM UTC

ks6g10 wrote: post #83

MattRix wrote: post #66

Earlier quoted context omitted.

What caused the fatigue and cold sensitivity and peripheral neuropathy? The cancer or the various cancer treatments?

Having had almost the same history and chemotherapy, the cold sensitivity and neuropathy is cause by platinum based drugs, in this case oxaliplatin. The cold sensitivity is quite fascinating i found, its like your skin reaching a threshold and feels like pressing against some cold metal. As for the fatigue, just the chemotherapy doing its stuff, never had fatigue from the cancer.

Ahh ok. I’ve been experiencing sporadic peripheral neuropathy and cold sensitivity for years, which my doctor has been unable to diagnose, so I was just curious if it might be a symptom of something else somehow.

Thanks for the information, I appreciate it.

Re: Notes on My Chemotherapy

#97

Post by vimy » Sat, Feb 06, 2021, 4:06 PM UTC

epmaybe wrote: post #47

Nihilartikel wrote: post #6

Just taking the opportunity to chime in on this thread: Do not hesitate to press for a colonoscopy or sigmoidoscopy if you are worried about your colon health. Something is going on now where demographically much younger patients are getting polyps and colon cancer: https://www.cancer.gov/news-events/cancer-currents-blog/2020... Doctors are still mostly operating under the old wisdom that it is not a problem for thos…

This concept behind earlier screening is a whole thing amongst medical professionals, and a point of controversy in a number of specialties. As with most things, procedures have risks and benefits. Colonoscopies have risks too, right? Bowel perforation (bad news), bleeding, infection, etc. So, balancing that with the obvious benefit of catching cancers early, the USPSTF (United States Preventive Services Taskforce) m…

No risk with a camera pill. Less risk with a virtual colonoscopy.

https://www.mayoclinic.org/tests-procedures/capsule-endoscop...

https://www.hopkinsmedicine.org/health/conditions-and-diseas...

Re: Notes on My Chemotherapy

#98

Post by jcims » Sat, Feb 06, 2021, 4:22 PM UTC

trynewideas wrote: post #42

jcims wrote: post #36

Earlier quoted context omitted.

Couple of other ones: - If you're going to do chemo and nobody recommends a port, ask about them...particularly if you are a tough stick. What used to be 5-15 minutes of agony and stress that would regularly involve bringing in the good hands team with the ultrasound kit turned into basically nothing. Ports can be used for labs as well fwiw. - If you are a tough stick and don't get a port, don't be afraid to ask for…

Thanks for these. I really want to call out: > make sure that there is regular bloodwork being done that covers iron We've been fighting anemia during treatment, and regular tests have resulted in blood transfusions that kept us on schedule and ultrasound scans to locate and treat the blood loss.

I got to to the point of an antagonistic relationship with our oncology team on this one. I had to constantly fight with them to get regular labs done even after two separate occasions where our treatment was paused because the numbers were out of whack. I started ordering them directly via the home nurses that were doing or saline and sent them with a giant fuck you to the oncology team when they started dipping.

I don't know if your username came from this road you're on but it is absolutely appropriate for it. I wish the best for your and your loved ones.

Re: Notes on My Chemotherapy

#99

Post by whatrocks » Sat, Feb 06, 2021, 4:35 PM UTC

the_af wrote: post #39

whatrocks wrote: post #34

Earlier quoted context omitted.

Haha, nice work! I want a C64 so bad! Or a VIC-20. I also really love how the new Raspberry Pi 400 keyboard thing harkens back to this era of computing: https://www.raspberrypi.org/products/raspberry-pi-400/

(I just realized you are Charlie). Yes, I love the look of that Raspberry and of course I want one. Do I need one? Of course not, but it would make me happy. After booting up my fake C64 and playing a few games for nostalgia's sake, I'm still struggling to find the time to learn some assembly language for it as I had planned. Did you ever find the time to do something with your Apple II? If so, you should really writ…

Not as much time as I'd like. Mostly been playing games so far (I just scored two vintage Apple II joysticks!). But one of my upcoming projects will be experimenting with its serial card. I have a vision of being able to "remote in" to the Apple II from my laptop. Then I'm thinking it will be easier to actually write code for it, since I'll be more easily able to version control it (rather than saving it down to tape or something on the actual machine). Anyway, that's what I'm thinking lately, but we'll see!

Re: Notes on My Chemotherapy

#100

Post by Balgair » Sat, Feb 06, 2021, 7:53 PM UTC

01100011 wrote: post #72

epmaybe wrote: post #49

The most frustrating thing to me is that you, the patient, had to ask the doctor who is supposed to help you coordinate your care about one of the most important pieces of the puzzle that was still pending after your procedure. All of the view alerts, the notifications, reminders, people involved in your care, fancy computer systems, read backs, none of that prevented the potential delay in your treatment. It could h…

Once you have dealt with a major illness, you realize there is very little 'care' in health care. I sympathize with health care workers(mom is an RN, wife is in school now), but it is an unfortunate situation. In my experience, outcomes are determined by how much you are willing to manage your own care and, importantly, fight when necessary.

Aside: Two tips we've found in dealing with the US system:

1) Write down everything that happens. Who came in when, what they gave you, how much, what you talked about and when, etc. Our personal experience is that the MDs and nurses take much better care of you when they see that you are taking notes. Not only from a fear of lawsuits aspect (though if that is there, get a new practitioner quickly), but also from a respect angle. That and they do make mistakes, sometimes big ones, and having another record is invaluable when it comes to when a dosage was given. The taking of notes also tends to slow things down, which can be good when trying to understand complex issues or figure things out.

2) If you're in for a while, get a bowl and keep it filled with diverse candies. Practitioners stop by more often, tend to hang around longer, and are generally in a better mood. All of which leads to better outcomes, at least that I have personally seen. Though this is pre-covid advice.

And yes, I very much agree, you have to fight hard to get the care you need. Be polite, of course, but do not back down with MDs, they tend to think of it as a weakness to exploit for some strange reason.