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Notes on My Chemotherapy

charlieharrington.com

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Re: Notes on My Chemotherapy

#61

Post by aledalgrande »

mmaunder wrote: post #11
isoprophlex wrote: post #3

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.

I'm very glad you healed, good sir. Always ready for good endings.

Re: Notes on My Chemotherapy

#62

Post by Daho0n »

mpfundstein wrote: post #24
greedo wrote: 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 :-)

You seem worried with your multiple posts. You really should ask a doctor.

Re: Notes on My Chemotherapy

#63

Post by aledalgrande »

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…

Yeah this doesn't give me a lot of confidence in doctors in US. I had friends in ER and the doctor was "trying" different medicines to see what worked. Then wanted to charge $2K for a signature. I don't really know what the people droning about US healthcare being the best in the world are about.

Re: Notes on My Chemotherapy

#64

Post by JimTheMan »

ed25519FUUU wrote: post #50
epmaybe wrote: post #48

Earlier quoted context omitted.

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.

OK, so basically once you get reduced to poverty you get some care. Does medicare give you good quality care?

Someone I know recently had cancer in Australia, they are wealthy but don't have private health insurance: so they went through the public system. It seemed like they got care that was just as good to be honest. Just not a private room.

Re: Notes on My Chemotherapy

#65

Post by mpfundstein »

Daho0n wrote: post #60
ekianjo wrote: post #54

Earlier quoted context omitted.

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?

iFOB test

Re: Notes on My Chemotherapy

#66

Post by MattRix »

_jaik wrote: post #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 i…

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

Re: Notes on My Chemotherapy

#67

Post by raylad »

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…

There are at-home screening tests you can get that are inexpensive and as accurate as colonoscopies in screening for cancer (according to some ways of measuring).

https://www.healthline.com/health-news/dreading-colonoscopy-...

Some of these can be ordered without a prescription online. So if you want to get screened and can't justify or afford a colonscopy, these are worth checking out.

Re: Notes on My Chemotherapy

#68

Post by Daho0n »

_jaik wrote: post #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 i…

I just want to add a somewhat different view here. I had cancer when I was 30 (testicular cancer). Healthy today luckily. But everyone said I was taking it very well and clear headed and I think so too if I have to say so myself but some years later I had a massive panic attack and started having huge problems with anxiety and panic attacks. It got so bad all I could do for weeks were to sit in my sofa being scared I was sick and dying from cancer, not quite awake but never quite sleeping either. It came at first because I had blood in my urine (had it checked, nothing wrong, gone again) but the attacks became a returning pattern at the same time every year. The differing view is that unlike GP I already were on Escitalopram at the time I had cancer. I later found out that there is a massive problem with people getting anxiety and panic attacks while on escitalopram and a lot get cured after having stopped, including me.

Please do see a doctor and educate yourself if you have symptoms like blood in your stool, urine or if one testicle have a lump or feels slightly harder (internal tumour) but also educate yourself before taking any medication! It may save your life taking it but it may also ruin it.

Edit to add: Also remember that cancer often doesn't hurt at all (at first) so don't be one of those that don't go to the doctor because it doesn't hurt. Not having pain is often A Bad Sign. Off you go!

Re: Notes on My Chemotherapy

#69

Post by Daho0n »

aledalgrande wrote: post #63
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…

Yeah this doesn't give me a lot of confidence in doctors in US. I had friends in ER and the doctor was "trying" different medicines to see what worked. Then wanted to charge $2K for a signature. I don't really know what the people droning about US healthcare being the best in the world are about.

The US is huge so finding something somewhere that is best or top of class is quite easy. That the best treatment might be on the other coast than you and only for the 1% that can both afford it and who happen to know about that specific treatment doesn't seem to count when looking at "Best in the world".

Re: Notes on My Chemotherapy

#70

Post by aledalgrande »

Daho0n wrote: post #69
aledalgrande wrote: post #63

Earlier quoted context omitted.

Yeah this doesn't give me a lot of confidence in doctors in US. I had friends in ER and the doctor was "trying" different medicines to see what worked. Then wanted to charge $2K for a signature. I don't really know what the people droning about US healthcare being the best in the world are about.

The US is huge so finding something somewhere that is best or top of class is quite easy. That the best treatment might be on the other coast than you and only for the 1% that can both afford it and who happen to know about that specific treatment doesn't seem to count when looking at "Best in the world".

This was in LA with an insurance from top company at director level, so I am still not convinced.
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