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Notes on My Chemotherapy

charlieharrington.com

51–60 of 112 posts

Re: Notes on My Chemotherapy

#51
This hits home: "You must become your own health advocate"

To this I will add, if there's an outstanding health issue, even if it seems minor, address it without delay. Pound the phones, demand specialist referrals, and for the love of god don't engage in avoidant behavior or optimism bias.

Timely diagnosis can be a difference between life and death.

Re: Notes on My Chemotherapy

#52
post #8

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…

Absolutely, when TotalBiscuits (John Bain) was still fighting cancer he couple times unabashedly said while doing his live starcraft 2 esports casting to everyone listening to be mindful of colon cancer, to not play dumb with it if you consistently find blood in your stool and go get yourself checked, insist on it if the doctors seem not particularly concerned He was saying that to save lives Might he rest in peace

> In late April 2014, Bain announced he had a precancerous mass in his colon, the first indications of bowel cancer, a condition with which two of his grandparents had also been diagnosed. (wikipedia)

It's good to promote diagnosis, but let's also put this in perspective: he had family history of this kind of cancer. This kind of changes everything when it comes to your personal risk, just like your grand parents having Alzheimer indicate a major risk that you will get it as you age as well.

This is why (good?) doctors also ask for conditions running in families.

Re: Notes on My Chemotherapy

#53
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.

> 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.

Re: Notes on My Chemotherapy

#54
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.

Note there can also be blood that is not visible in your stool - (occult blood is the term). It's recommended to check for that on a regular basis and it's fairly easy to confirm their presence.

Re: Notes on My Chemotherapy

#55
I went through stage IV colon cancer in 2020 at age 37. Just had my 3-month follow-up CT scan today, actually. I had 3 surgeries (colon resection, port installation, liver resection & ablation), 12 rounds of chemo (FOLFOX + Vectibix), 9 before liver surgery, 3 after. I had plenty of fatigue and cold sensitivity in my extremities. I have some peripheral neuropathy maybe 9 months in, and continuing. It was worse, but improved some. It could take up to a year to go away, if ever. Theoretically, I'm in remission or "no evidence of disease" (NED).

One thing I haven't seen mentioned yet is that being diagnosed with cancer can give you some anxiety. Doctors can prescribe an anti-anxiety medicine like escitolopram to take care of it. Having a clear head during a hard time can help you make better decisions, ask better questions, and get better care.

If you've been diagnosed with cancer and want to talk, email me: [redacted].

Fuck cancer.

Re: Notes on My Chemotherapy

#56
Fenbendazole (the active ingredient in dog dewormer medication Panacur) can inhibit cancer growth.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687140/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6085345/

Unfortunately, it causes acute hepatitis and it won't be authorized for clinical trials.

Re: Notes on My Chemotherapy

#57
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 makes me so glad to be under the care of the NHS.

It isn't even about the money, I could afford the $3k out of pocket too, it's more about not having to be a "customer" who has to frequently make choices or shop around.

It's also a relief not having to think about the money or insurers. I don't need to collect receipts or bills or phone insurers or providers, I can focus 100% on getting through my chemo.

I haven't had to fill in a single form except the occassional consent form since diagnosis, and to me that's worth every penny of tax I've ever spent.

Re: Notes on My Chemotherapy

#58
post #21

Earlier quoted context omitted.

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

The incidence rate is like 4.6 out of 100,000 in kids...let's not overstate the situation here, as bad as it feels to see or imagine a child in this situation.

That is still way too many kids.

Re: Notes on My Chemotherapy

#59
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 mys…

Capitalism can't work its magic because healthcare is not a free market. It has a unique set of constraints that capitalism is particularly weak at dealing with: lack of choice (you don't get to choose which hospital you go to in a lot of circumstances), high barrier to entry, constantly changing regulatory environment, etc...

The reason single payer systems work is because they're at a specific advantage for all of the constraints that healthcare systems face, including a better overall incentive alignment.

Re: Notes on My Chemotherapy

#60
post #54

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.

Note there can also be blood that is not visible in your stool - (occult blood is the term). It's recommended to check for that on a regular basis and it's fairly easy to confirm their presence.

Fairly easy to spot not-visible blood? How?
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