Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

Notes on My Chemotherapy

charlieharrington.com

Post reply on HN
Print view View original

31–40 of 112 posts

Re: Notes on My Chemotherapy

#31

Post by greedo »

trynewideas wrote: post #29

Some notes from experience from the other side of a failed chemo: - Not all ports are metal. Some are plastic. - Not all chemo drugs have the same side effects; even within drugs, not all implementations have the same ingredients. - Lots of chemo retrospectives talk about "nausea", but that's imprecise. Nausea and vomiting are separate things, and can be invoked separately. Some chemo drugs act on the vestibular syst…

Great comments. I experienced neuropathy in hands, feet during chemo, as well as extreme sensitivity to cold. My hands recovered, and the cold sensitivity went away, but my foot neuropathy has persisted for 16 years. Some days it feels bad, other days it's more like a diminishing sensation.

Re: Notes on My Chemotherapy

#32

Post by the_af »

Fuck cancer indeed.

Charlie is the guy who wrote that awesome article about finding a working Apple II in some neighbor's garbage, asking for it and getting it to work. I still have it bookmarked. He inspired me to get a C64 (ok, I'm not a Real Programmer like him, so I got an emulator in a case that looks like a C64).

I wish him the best of luck. I hope he beats this cancer.

Re: Notes on My Chemotherapy

#33

Post by splittingTimes »

greedo wrote: post #25
greesil wrote: post #23

Earlier quoted context omitted.

What about under age 40? Or 45? Or 50?

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?

Re: Notes on My Chemotherapy

#34

Post by whatrocks »

the_af wrote: post #32

Fuck cancer indeed. Charlie is the guy who wrote that awesome article about finding a working Apple II in some neighbor's garbage, asking for it and getting it to work. I still have it bookmarked. He inspired me to get a C64 (ok, I'm not a Real Programmer like him, so I got an emulator in a case that looks like a C64). I wish him the best of luck. I hope he beats this cancer.

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/

Re: Notes on My Chemotherapy

#35

Post by elihu »

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…

Same here; had a large tubulovilous adenoma removed a couple years ago, at just about the same age. It wasn't cancerous, but it probably would have been soon if left to its own devices.

In my case it's probably genetic. My grandmother survived cancer by having part of her colon removed. She had a bunch of siblings who all died of cancer or undetermined causes; the difference is that she went to the doctor and they didn't.

Re: Notes on My Chemotherapy

#36

Post by jcims »

trynewideas wrote: post #29

Some notes from experience from the other side of a failed chemo: - Not all ports are metal. Some are plastic. - Not all chemo drugs have the same side effects; even within drugs, not all implementations have the same ingredients. - Lots of chemo retrospectives talk about "nausea", but that's imprecise. Nausea and vomiting are separate things, and can be invoked separately. Some chemo drugs act on the vestibular syst…

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 the ultrasound.

- If you're inpatient for some reason and your chemo appointment is getting close, begin asking your doc and the attending about it ahead of time. Some hospitals will do an infusion in your room, some won't...and in those cases you might just miss a dose.

- If you regularly need saline to keep up hydration there are in-home nursing facilities that can do this rather than having to go to the hospital every time. They can teach you to 'de-access' the port as well, so that they don't have to hang around for the hour to get through the bag.

- Emesis bags are available on Amazon by the case.

- If margins are starting to thin, make sure that there is regular bloodwork being done that covers iron, liver function and other diagnostics that are relevant to your situation. Some of these things are slow-movers and can interfere with your treatment plan when they get out of whack. Most of these are available without a referral/prescription from a local hospital or lab.

- If you end up with a hysterectomy or because of your treatment have hot/cold issues in bed, the BedJet is absolutely amazing. https://bedjet.com/

Re: Notes on My Chemotherapy

#37

Post by inetsee »

trynewideas wrote: post #29

Some notes from experience from the other side of a failed chemo: - Not all ports are metal. Some are plastic. - Not all chemo drugs have the same side effects; even within drugs, not all implementations have the same ingredients. - Lots of chemo retrospectives talk about "nausea", but that's imprecise. Nausea and vomiting are separate things, and can be invoked separately. Some chemo drugs act on the vestibular syst…

Another side effect I haven't seen mentioned yet. My mother developed ovarian cancer. It had metastasized before it was detected, so chemotherapy was the only treatment option. During the chemotherapy she suffered nausea and vomiting, which is pretty much expected with chemotherapy. The unexpected part was that she suffered nausea and vomiting after all the rounds of chemo were completed. My mother lost a lot of weight.

My cousin was a registered nurse and she came to help with my mother's care. One night my mother had a crisis, and we took her to the emergency room. Just by chance the admitting physician had been an oncologist, and she said that sometimes chemotherapy damages the lining of the stomach. The doctor admitted my mother and ordered a nuclear medicine scan. The scan showed that the problem wasn't exactly what the doctor thought it might be, but it was very similar, and if could be treated with oral medications. They started her on the medications, and the very next day she ate a full meal without any vomiting.

Unfortunately, when she was transferred from the emergency services department to a regular ward, the changes to her chart didn't make the trip with her. They stopped giving her the new medication and resumed the powerful anti-nausea medicine she had been taking before. With the help of my cousin (the RN) we discovered the mistake a couple of days later, but it was too late. Her body had suffered too much, and she died a few days later.

Re: Notes on My Chemotherapy

#38

Post by brigandish »

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.

There’s plenty about it that’s defensible, the part that seems indefensible to me is the regulatory capture that leads to situations covered in the blog where insurance won’t cover cutting edge treatments. There’s a good argument to be made that deregulation would encourage innovation and lead to dropping prices and greater supply - why capitalism should stop working its usual magic when it comes to medicine is a mystery.

Edit: no blood, please!

Re: Notes on My Chemotherapy

#39

Post by the_af »

whatrocks wrote: post #34
the_af wrote: post #32

Fuck cancer indeed. Charlie is the guy who wrote that awesome article about finding a working Apple II in some neighbor's garbage, asking for it and getting it to work. I still have it bookmarked. He inspired me to get a C64 (ok, I'm not a Real Programmer like him, so I got an emulator in a case that looks like a C64). I wish him the best of luck. I hope he beats this cancer.

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 write about it. I really, really liked your blog post, I must have read it at least three times!

Re: Notes on My Chemotherapy

#40

Post by tehwebguy »

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 abruptly.
Insurance companies are financially incentivized to not only say "no" to covering treatment but also just to kick the can down the road a bit. The later in the year that they reject an approval the higher the chance that you'll:

1. have to cover part of it in January when your deductible resets,

2. have to pay more toward it than you would when your plan invariably gets more expensive in January,

3. it will be some other insurer's responsibility by then,

4. you die before you incur any more treatment costs.

Truly sick stuff!

Post reply on HN