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Notes on My Chemotherapy

charlieharrington.com

21–30 of 112 posts

Re: Notes on My Chemotherapy

#21

My infusion center is the adult center. I'm not sure I could stomach seeing children and babies getting chemo. I'm crying right now even thinking about it (which hurts, if you remember my side effects). Powerful ending to the article... indeed, fuck cancer. Get well soon, stay well!

I beat the crap out of stage 4 blood cancer a few years ago and am now officially cured. I realized my battle was nothing when I was getting my second round of chemo, and a happy bald 5 year old with a lollipop got on the elevator with me at Seattle Cancer Care Alliance (Fred Hutch) where I was being treated, and I glanced at mom and she looked so very tired.

A lot of kids getting ALL leukemia and treatment is a year long.

Re: Notes on My Chemotherapy

#22
post #15

Earlier quoted context omitted.

Rare doesn't really help when there are almost 8B people on the planet. I was 41 when I was diagnosed with colorectal cancer. I had blood in my stool and my GP misdiagnosed me due to my age. If I hadn't pushed the issue, I wouldn't be here now. If you ever have blood in your stool, get an exam. Preferably by a gastroenterologist.

Hi, mind sharing how the blood in your stool looked like? What was the color etc? Was it there always? Was it occassionally? Was it ON the stool or mixed through it? And when you finally got diagnosed. What stage were you in? Are you healed now? And how long did you put it off? Sry for asking so much.

I noticed bright red blood on my toilet paper periodically. I would ignore it a bit, then worry more when it re-occurred. After a month or so, I went to see my GP (I was 40 at the time). He thought it was just hemorrhoids. A year later my wife convinced me to go back and see what was up. I was referred a week later to my gastroenterologist who diagnosed me with a 5cm tumor. The path report showed that it was T2N0M0.

I'm fully healed now, though I have a permanent colostomy.

Re: Notes on My Chemotherapy

#23
post #20
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.

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

Re: Notes on My Chemotherapy

#24
post #22

Earlier quoted context omitted.

Hi, mind sharing how the blood in your stool looked like? What was the color etc? Was it there always? Was it occassionally? Was it ON the stool or mixed through it? And when you finally got diagnosed. What stage were you in? Are you healed now? And how long did you put it off? Sry for asking so much.

I noticed bright red blood on my toilet paper periodically. I would ignore it a bit, then worry more when it re-occurred. After a month or so, I went to see my GP (I was 40 at the time). He thought it was just hemorrhoids. A year later my wife convinced me to go back and see what was up. I was referred a week later to my gastroenterologist who diagnosed me with a 5cm tumor. The path report showed that it was T2N0M0.…

ah congratulations. glad to hear this.

few more follow ups if you dont mind :-) so there was no blood in or on the stool itself? and what was the quanitity on the toilet paper? just a small stripe or a lot? and how frequent was it throughout the year? monthly,weekly,daily?

thanks :-)

Re: Notes on My Chemotherapy

#25
post #23
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.

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 currently is not recommended for those under 50.

https://www.mdanderson.org/publications/conquest/colorectal-...

Also, if you have a family history of colorectal cancer, you should definitely get examined earlier.

Re: Notes on My Chemotherapy

#26
post #22

Earlier quoted context omitted.

I noticed bright red blood on my toilet paper periodically. I would ignore it a bit, then worry more when it re-occurred. After a month or so, I went to see my GP (I was 40 at the time). He thought it was just hemorrhoids. A year later my wife convinced me to go back and see what was up. I was referred a week later to my gastroenterologist who diagnosed me with a 5cm tumor. The path report showed that it was T2N0M0.…

ah congratulations. glad to hear this. few more follow ups if you dont mind :-) so there was no blood in or on the stool itself? and what was the quanitity on the toilet paper? just a small stripe or a lot? and how frequent was it throughout the year? monthly,weekly,daily? thanks :-)

I didn't look at my stool. There was a decent stripe on the toilet paper. I was in denial so I didn't measure it. ;)

It was infrequent. My doctor speculated that if I had a firm stool, that would cause the tumor to bleed.

Re: Notes on My Chemotherapy

#27
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.

We're not done yet, we can still improve it, we just need to keep leaning on our congress-people to fix it.

Can't tell if this is irony.

Re: Notes on My Chemotherapy

#28
I pray that you succeed against this battle. I know several people who have successfully battled cancer, one who is doing it at UCSF right now and UCSF is a great hospital for that. You're young and look healthy, I am looking forward to continued decades of your posts!

Re: Notes on My Chemotherapy

#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 system, which is the part of the nervous system that decides whether the body needs to vomit; some chemo drugs in your blood basically yell "PUKE PUKE PUKE" at your brain, and you vomit without nausea. Other chemo drugs do a number on dopamine or serotonin receptors, giving you intense nausea without the trigger to puke (but you might anyway). You can tell if you're in the latter bucket if chemo makes you absolutely hate chocolate, turkey, or other tryptophan- and tryamine-heavy foods — without the serotonin/dopamine boost in most chocolate, it's just a weird bitter taint that ruins sweet flavors. (Also, some chemo drugs make you REALLY crave fructose. By the bucket. Fruits, fruit-flavored candies, fruit juice, non-stop.)

- If you're young and relatively healthy, there's a decent chance you'll deal with your port closing up, especially if your cycles are 3+ weeks in length. Flushing the port is time-consuming; chemo is already hard to schedule around, but if you have port issues, nothing is ever going to take just 2-4 hours.

- Not sure if Charlie had to deal with pre-meds and post-med flush drips, but we did, and they're mandatory — even if you're unable to finish the infusion.

- Some chemo drugs have a slim chance of causing a severe reaction. If you're going to have one, it'll be within the first 10 minutes of the first infusion. If you have one, it might be a classic sudden allergic reaction, in our case Taxol caused the throat to close up, losing the ability to speak or breathe, treated with a heavy dose of Benadryl. Regardless of the specific reaction, if it's severe then it's a massive problem going forward, because your options are to either ditch the oncologist's first-choice drug or (with a ton of suffering) try to build up a resistance in a hurry. And yeah, if you're unlucky enough to have that reaction, you're very likely going to have that violent reaction in front of an audience of everyone else getting an infusion.

- One of the side-effects of chemo isn't listed here, and might not be a factor in his combo, but in general chemo has an eventual side effect point where it can't continue: the potential to cause nerve damage. This will look or feel a little like Parkinson's, with numb extremities, loss of motor functions, difficulty stringing together words/actions. At the first, slightest sign of this, chemo is over, sometimes for good. If the cancer isn't getting treated by then... good luck.

- Holding off on a cycle due to low white blood cell counts is a foreign concept to me. They ran tests and infusions between cycles to keep WBC counts up, but any cycle delays were considered suicidal. Again, might've been just our treatment course (and severity; we started at stage 4).

- This will vary between infusion centers, but as long as COVID is a problem, you can't rely on having in-person company with you, or contact with other people getting infusions (on account of everyone involved having massive immunity problems from the chemo). If you crave contact, bring a phone, a charger, and the longest possible cable you can get for that charger.

Re: Notes on My Chemotherapy

#30

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…

Thank you for this reply. I completely forgot to add the nerve-damage potential to my post and I'm going to amend it to add that, since that is a risk (and one of the other huge reasons that we elected 3 months instead of 6 months).
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