IamA cancer patient currently undergoing chemotherapy AMA!

How old are you?

I was diagnosed with colon cancer in May of 2019, and am (only) in my late 30s. I've seen some data suggesting that occurrence in younger people is on the rise, and I would encourage anyone with troubling symptoms (in particular the bloody stool you've mentioned) to treat that seriously and get it checked out.

39 and I was diagnosed with colon cancer on September 15th. Today is my first chemo treatment

Good luck man. Hit me up if you want to talk or have questions.

Low 40s.

Diet related?

Hard to know.

What were your symptoms/ when did u know you had cancer? Good lucky anyway

Bloody stool. Went for a colonoscopy (once they started allowing elective procedures) and here we are.

Ummmm... How is a colonoscopy elective? I mean if you're into that, sure. But this seems like an important diagnostic.

I had the same question.

Wanted to follow up on this question. Were you experiencing these symptoms constantly?

Going to go with "often" other than constantly. I have a friend who went through this and sometimes he had (mild) pain & blood but associated with constipation until the amount of blood got startling. He said at one point he looked down and the entire bowl of water was red. He ended up surviving but they had to remove a fairly large section of his colon.

Pretty much.

How bad were the symptoms?

Anywhere from zero to Nightmare on Elm Street.

I hope all is well after your diagnosis! I know it must be a very hard thing to deal with, especially with everything else going on in the world atm. Colon cancer seems to be rising among the younger population. In the interest of spreading awareness, what were your first symptoms?

Bloody stool.

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Both.

Fellow cancer person here, have you found that one food that doesn’t taste awful yet? Also just a suggestion but drink lots of water to help your kidneys out. They are taking a beating right now.

I am drinking a lot. I have zero appetite to eat anything to be quite honest. They keep telling me I need to keep my protein intake up, but I have not been doing great with that.

Testicular cancer survivor here. Went through chemo last year, idk where you live or your circumstances, but I would seriously consider some marijuana (indica based) edibles. Was a huge game changer for my experience, nausea and appetite issues would have been 10x worse without it.

Yeah, a friend keeps telling me to try it. The nausea is pretty bad but the pills they gave me kinda help.

I smashed those chocolate boost protein drinks they are an excellent meal replacement when you don’t have an appetite. I also found a lot of tomato based foods were tolerable

OMG those shakes are horrible. Taste like chocolate chalk.

How is cancer treatment going in relation to covid? Wishing you a speedy recovery!

It's not something I would do for fun. As far as relation to covid, my wife cannot come with for my infusions. Other than that, not much.

I’m so sorry about what you’re going through, I hope your chemo goes well! How old are you?

I'm in my low 40s.

Going to assume it was the first colonoscopy that you had? They need to start pushing to start those much younger. =/

Correct.

So first good luck! I had the same symptoms as you and survived stage 3 colon cancer. So . Just curious. What stage are you? and what is your favorite comfort food on the really lousy days?

Mine was pizza and ginger chews.

Early stage 3.
Spaghetti and meatballs all day.

How are you doing mentally/emotionally? What are you doing to cope with the stress?

To be quite honest, I am doing just fine on that front. Being nervous and stressed out about something you cannot control never helped anyone.

Are they optimistic on your recovery?

I start a new job in a month as an IV lab technician who compounds the chemotherapy IVs at our cancer center.

Yes, they are. Good luck on your career, that sounds rewarding.

What is (in your opinion and for your situation) the best way possible for a friend to support you? Talking about it or making you think about something else?

Just act as you would normally do. It's not contagious.

Do you have good health insurance?

Yes, thankfully.

I'm an oncology pharmacist. Just about everyday I lament the state of healthcare in the USA. Fortunately, my clinic has a huge financial assistance department that can arrange for free drug, radiation, copay assistance, etc, but its not enough. One patient who was in the country illegally was diagnosed with an aggressive breast cancer. We were able to get her free drug and treatment, but it delayed her care by a week. Another patient has no insurance and is delaying her radiation appointment to identify a treatment plan because she doesn't want more charity care. Radiation will probably cost $200k. Shes receiving free drug that costs $36k cash per month. That cost isn't even unusual for an oral chemo regimen. Another patient on a $38k/mo drug ended up paying $1000 copay each month because he didn't qualify for assistance. He was very well off, and the cost didn't seem to bother him, but I don't think anyone should have to pay that for a life saving medication. Another patient wants to join a clinical trial, but insurance won't pay for something experimental. The back of the napkin estimate for treatment is $350k, and it will take 17 days total. There's a lot of issues with the cost of cancer care.

Interesting. I paid out of pocket for my first three days of oral chemo because it was taking insurance too long to approve. The price was over $1000 through the hospital pharmacy. When I went to my local pharmacy and asked them, it was approximately $60.

$1000 vs $60?

What the hell?

I know, right? I stopped trying to make sense of it.

When are you gonna create a post about the day you beat cancer?

Let me check my calendar.

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I wouldn't say it's showing who really is a friend because people deal with things differently. Some people are unsure how to deal with it and decide to not deal with it at all. It's not about how much of a friend they are, it's just that people deal with thing differently.

Have you decided to sell meth yet? Or is that a later stage of cancer?

:)

Shitty. What a punch in the jejunum. How far into the cycle are you? Just beginning? Close to the end? Do you have access medical/legal marijuana or cbd?

About halfway through. I'm sure I can get if I need.

How are you right now?

Today I feel okay so far.

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Thanks!

Does your cancer cause severe pain? If so, is it being managed properly with opioids? Due to the heroin epidemic chronic pain patients have suffered immensley from medication reductions and out-right removal due to doctors fearful of the DEA. Cancer patients, once considered deserving of pain management have even started to be denied pain treatment when they began to crack down even harder about 2 years ago and manufacturing limits were set rationing opioids. I'm wondering if you've encountered difficulty getting or filling prescriptions.

Best wishes I hope the treatment is effective for you.

I am not in pain.

how ru feeling? R-CHOP alum from 2018-2019. Is there an end date for you or ru going to be on this long term?

4 21-day cycles, then radiation.

good luck! radiation wasn't nearly as bad as chemo for me but towards the end it started to creep up and i had a hard time eating and exercising. Are they doing a targeted area for Colon Cancer or wider? for me I had a 5 inch tumor in between my lungs and 1 inch on top of my heart so they did basically my whole chest.

I don't really know much about the radiation yet.

The doctors have any idea if it comes from habits or genetics?

Not really, it sometimes hits people out of the blue. They don't really know why it develops in some people and not in others. I don't have a family history.

Do you feel like you’ve lived a healthy lifestyle?

In the last 13 years, yes. I was a smoker beforehand.

It fucking sucks, I imagine. Do you have the feeling you'll pick bigger fights after getting better? Like be more aggressive towards life and your personal goals? Or more in the line of setting down and enjoy more a low profile lifestyle, be closer to family and friends kind of life?

I have no idea. Day by day. We'll see.

Not a question, just a little solidarity from a 30-something cancer patient. Esophageal, turned to stage 4 about 18 months ago, been on two different chemo treatments since then. Currently on something similar to you, involving oxaliplatin, which is one hell of a drug isn't it? Fuck that shit. Fuck cancer.

Borat high five!

What are some things that you had to stop doing in order to start and continue the chemo? Do you miss it?

Can't eat or drink anything cold for about a week after an infusion. Room temp or warm only.

Hi, Stage 4 CRC here, How are you holding up with everything? I'm starting round 3 of Folfox tomorrow. I was also dx in August. Have you found the lovely people at Colontown or Manuptocancer.com yet. Good luck on your treatments. We got this.

We got this indeed. (Borat) High five!

Thanks for doing this. Did you know something was seriously wrong with you or was it more of a hunch that something ain't right? Asking for all the hypochondriacs out there who catatrophize every little symptom. Best of luck to you btw!

It was more than a hunch. You're not supposed to bleed when using the bathroom. Didn't think it was cancer though.

How’re you doing?

Doing okay, all things considered.

Is the treatment painful? Or is it the side effects that are bad?

The treatment itself is uncomfortable, but not really painful. the side effects are no joke.

What side effects are you experiencing? On a scale of 1 - 10, how bad are they?

Neuropathy is the worst. Tingling in the fingers and toes, serious sensitivity to cold. My fingers don't work as they should. My thumbs lock up sometimes, even typing just feels clumsy.

Were you aware that often the most serious side effect of chemo is neuropathy before you got cancer? I'm doing my PhD on chemotherapy-induced peripheral neuropathy and tbh even I had no idea before I started researching my project. Most people tend to instantly think "feeling sick, hair falling out".

Not until the doctor started describing the possible side effects.

My feet are super numb, I feel like I’m walking on meat sponges.

From neuropathy?

How did you tell the people close to you? Cant imagine that being be easy

Telling my kids was the hardest.

How has your experience w healthcare professionals been? Have they treated you well?

they've been great TBH.

Praying that you beat this and recover quickly!! How are you feeling mentally and physically right now?

Today has been good thus far.

I just had my first chemo for Hodgkins on Friday and will be doing 4 4 week cycles (8 infusions). How're you handling the side effects from chemo? I knew it would be tough but I didn't expect to get totally knocked out this weekend.

Edit: mine is ABVD chemo*

Yeah, it's a knockout. My treatments are on Thursdays so me weekends are out, but by Monday I can usually go to work.

When was your previous colonoscapy? (Did you ever have one?)

I have a question about treatment cycles but will edit this comment to ask

Edited- during the 3 weeks is it chemo daily or in the hospital?

First colonoscopy.
3 week cycles. First day is an infusion, then 2 weeks of oral chemo, then one week off. Rinse and repeat.

Are you religious/spiritual?

Yes, I am religious.

How are you doing?

Doing well.

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No, they can't really point to a cause. These things develop slowly, over the years.

where you getting regular colonoscopy? Hope you're okay and recover fast

No, this was my first.

Was chemo the only option? Was gamma( cyber knife) surgery an option?

No, where not at that point and hopefully will never be. Chemo/radiation. The hope is to avoid surgery altogether.

People say they get sick from chemo; what’s the sickness like?

Nauseua, fatigue, Neuropathy.

I know this is the least of your concerns, but how do you plan to help with hair regrowth?

This treatment has not really affected my hair, as of yet. People don't typically lose their hair with this treatment regimen. Some thinning perhaps, but that already started years ago for me.

How is your family coping?

What are your math odds? Why?

Any new introspective/revelation that can only come from your situation you would like to share? Would not like to share but will anyway?

How does it affect your sex drive?

Thanks for answering. Please, recover and be without sufferage.

How is your family coping?

Was not easy at first but they've adjusted to the new normal.

What are your math odds? Why?

My doctor doesn't like giving mathematical odds. Everyone is different. He says whatever my odds are, they are. It won't help looking at other people's odds.

Any new introspective/revelation that can only come from your situation you would like to share? Would not like to share but will anyway?

Not really.

How does it affect your sex drive?

Hard to get in the mood when you're dealing with chemo side effects.

Hello,

If you are in the US, did you already get your disability lined up for financial support?

I am working every day so far. I am in an executive position, so it's not like I clock in. I leave when I am not feeling well.

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Yes. My family has been great.

My prayers are going out to you :)) Have you tried any alternative meds (like frequency therapy) for the pain/discomfort? I've seen mind blowing results from it.

I haven't. I am not in pain.

I know this is anecdotal at best, but my AMA question would be did you eat a lot of sugar or processed foods the last 10-20 years of your life? I ask this because colon cancer seems to be on the rise and I personally am guessing it is something in society rather than genetics. Thank you for doing this AMA.

Not really. I mean, I ate normally. Nothing excessive.

Can you put me in your will?

Asking the real questions.

In all seriousness, cancer manifested itself in your ass. Make sure to repay the favor by kicking cancer's.

:)

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Submitted proof to the mods.

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I am. I assume you are not, just by the nasty attitude. We are generally pleasant people.