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Notes on My Chemotherapy

charlieharrington.com

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Re: Notes on My Chemotherapy

#41

Post by trynewideas »

inetsee wrote: post #37
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 weig…

Very sorry to hear that about your mother. We've been fortunate that the paperwork errors haven't gone worse for us — we've only had to deal with a wrong-bag problem once, and thankfully before they started infusion — but that's a worthy and painful reminder to stay vigilant.

We're two months past the end of chemo and now at the end of a trial that also failed. The vomiting has been worse, if anything, since chemo (and the anti-nausea meds they prescribed) stopped, but it's been due to chronic constipation for us.

Re: Notes on My Chemotherapy

#42

Post by trynewideas »

jcims wrote: post #36
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…

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.

Re: Notes on My Chemotherapy

#43

Post by TaupeRanger »

rusabd wrote: post #21
mmaunder wrote: post #11

Earlier quoted context omitted.

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.

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.

Re: Notes on My Chemotherapy

#44

Post by refurb »

brigandish wrote: post #38
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 mys…

Plenty of single payer systems (like where I live in Canada) don't cover this stuff either. The difference is is in the US it's an insurance company saying "no" and in Canada it's the gov't saying "no". And actually, since it's one system, the doctors already know it's not covered so it never comes up.

Re: Notes on My Chemotherapy

#45

Post by dstick »

CyanBird wrote: post #8
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…

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

Thanks for reiterating this. In the end, what we leave behind is the love we gave others and the wisdom we bestow. Hoping they learn sooner than us, and benefit.

Re: Notes on My Chemotherapy

#47

Post by epmaybe »

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) made some recommendations on when patients should undergo screening for colon cancer.

As of right now, per their highest level of evidence recommendations, you should get a colonoscopy starting age 50, and every 10 years thereafter. Note, I said colonoscopy. Not sigmoidoscopy, not stool testing, etc. Those have different guidelines and intervals (but do still start age 50).

If you have family history of colon cancer, or certain diseases that put you at higher risk for colon cancer, the recommendations are significantly earlier. In the case of a positive family history, you get a colonoscopy age 40 or 10 years before the earliest colon cancer diagnosis in the family, whichever comes first.

The reason I bring all this up is to point out that if you go to the USPSTF web site, you'll see an evidence level B recommendation to start screening age 45 as well. You'll also find the American Cancer Society has colonoscopies starting age 45.

The evidence and safety for colonoscopies at earlier and earlier ages is getting better and better. Doctors should absolutely be screening well before age 60. If your doctor isn't following uspstf guidelines due to practicing outdated medicine (some variation due to personal preference/evidence based practice I guess is acceptable), in my not so professional opinion you should probably find a new doctor.

Re: Notes on My Chemotherapy

#48

Post by epmaybe »

JimTheMan wrote: post #46

A quick question for my stateside brothers. What happens if you get cancer and can't afford chemo? What kind of care will hospitals provide?

great question. Organizations such as the American Cancer Society will help out occasionally with treatment. If you qualify for medicaid/medicare, you can get some treatments that way. Your doctor could try and get you into trials that are funded and cover the cost of treatment.

At the end of the day though, there are many that fall through the cracks of our healthcare system. And that sucks.

Re: Notes on My Chemotherapy

#49

Post by epmaybe »

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 have been months before someone noticed and said "hey, we should probably get you into treatment."

Re: Notes on My Chemotherapy

#50

Post by ed25519FUUU »

epmaybe wrote: post #48
JimTheMan wrote: post #46

A quick question for my stateside brothers. What happens if you get cancer and can't afford chemo? What kind of care will hospitals provide?

great question. Organizations such as the American Cancer Society will help out occasionally with treatment. If you qualify for medicaid/medicare, you can get some treatments that way. Your doctor could try and get you into trials that are funded and cover the cost of treatment. At the end of the day though, there are many that fall through the cracks of our healthcare system. And that sucks.

Once you basically lose everything, your house, your 401k, your job, all of your savings, etc, then you declare bankruptcy. After that you’ll qualify for Medicare because your income level. That’s when the federal government steps in and you can usually get some kind of treatment.

Over 60% of bankruptcies are medical related.

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