IamA stage IV cancer patient with no current evidence of disease, AMA!

Fuck yeah! High 5?

Absolutely.

Fuck yeah! Fellow stage IV cancer ass-kicker!

Ditto, Same here. Stage 4, 6 years ago. Clean and healthy since.

Damn fellas. Let's start a support group.

First off, that's incredibly awesome to hear; I remember reading your original AMA, and to find out you are pre-remission is truly fantastic news.

My question is: At what point do you consider your battle a victory?

Both my mother and my sister had cancer, and it shocks me sometimes to see how it changed both of their outlooks in different ways on life. I find it always lingered in the back of my mother's head, where as my sister felt more comfortable "declaring" victory. I'm very interested to have your view on that subject.

Congrats on your family members getting through this.

My answer is truly that I don't know. I just know I'm not there yet. My cancer has a pretty high recurrence rate, so it's really a waiting game now. Perhaps when (and if) they say I'm in remission? I don't know, I'll have to wait and see.

I appreciate that.

I also respect the honesty of your answer. I hope you find yourself in the right headspace, once in remission. Sometimes, I think people underestimate how debilitating mentally it can be.

I know I'm just a stranger on the internet, but I'm rooting for you. Wishing you nothing short of great health.

Thanks, appreciate it!

My sister just had Uterine LMS and they told her they don't say remission, they just say NED. They told her there is no remission, you're just hopefully NED forever. It might be because it's such an aggressive form of cancer, with a 50% recurrence within 5 years, or it might just be the way her oncologist practices, preferring not to use the term at all.

(She's 2 years post-treatment and still NED on her scans, so we're waiting and hoping. Apparently, if you make it the 5 years without a recurrence, your odds of long-term survival go way up.)

Great to hear. Wishing her all the luck going forward.

As someone in a very similar position (incurable stage 4 colon, with liver and lung mets) I couldn't resist chiming in and just want to give you a big congratulations - nothing but good vibes for those that beat this awful disease!

I know you said you're not out of the woods and it may come back, but at the very very least you've bought yourself a decent chunk of extra time, and hopefully it doesn't reappear.

Curious what (if anything) you changed in your diet while going through treatment?

Good luck to you!

While going through treatment I barely ate. Had absolutely no appetite and everything tasted like metal. Had to force down some protein drinks which were horrible. Even now my appetite isn't great.

My wife had stage 4 breast cancer last year, no evidence of disease since August. Her doctor told her that no evidence of disease IS remission. Did you doctor tell you something different?

Yes. In my case the rate of recurrence is pretty high, and I'm in the high-risk zone until January of next year. I have to get scans every three months now. Once we hit that mark it goes to once every six months I think.

Mine is like this- B-Cell Lymphoma Primary Brain. I’ll never be “cured” or “in remission” but hopefully will stay at “complete response”.

Even wilder, on one of my three month scans there was a tiny new tumor. Three months later? Gone. My brain ate it. Like a fat brain panda.

Wow. Good luck to you.

Huge congratulations! What treatments or interventions brought you from stage 4 to near-remission?

Systemic chemo (4 rounds of CAPOX) and radiation (6 weeks, 5 times a week), a liver resection, gallbladder removal, I have a hepatic arterial infusion (HAI) pump in my abdomen that delivered a high dose of chemo directly to my liver. That treatment has completed a few weeks ago. EDIT: A bit early for the congrats. I'm not out of the woods yet.

Wow. You have been through a lot. How do you embrace life after gaining such a perspective?

I don't know, we'll see. As of now nothing has really changed. This is not my first health scare, the first one changed me more than this thus far.

What was your first if you don't mind me asking? How did it change you?

Good luck with your recovery

I had a 96% blockage my LAD in 2013. Had a cardiac stent put in. Gave me a whole new look at life and what my priorities were and should be.

How do you feel, physically?

Now I feel good. I had a few months where I had debilitating pain and to this day the doctors could not figure out what was causing it. I was hospitalized for 10 days as they did every test and scan that exists. I was on a mountain of prescribed opioids and had really bad withdrawal when I stopped them on my own. But that stuff is hopefully inthe rearview mirror now. I feel good! I also dropped a lot of weight, so I'll take the perks I can get. Thanks for asking.

Did they offer you anything for the opioid withdrawals? I can't imagine going on cold-turkey withdrawals on top of everything else. Withdrawals alone are enough to cripple even the strongest person.

Yes, they told me I was an idiot and to get back on them immediately as my body needs them. They told me they will create a plan to gradually wean off. Which they did.

Yeah tapering is the way to go. Even then it's not pleasant.

I'm doing right now, so far so good.

How did you first discover that you had cancer? Just a routine checkup?

No, I had symptoms. Got checked out.

what kind of symptoms did you have? congratulations on your recovery!

Bloody stool.

How bloody? Most times you tell doctor you have bloody stool they tell u it's hemmroiods and to eat more fiber.

Sounds like most cases you have to have full on black tar upper GI blood demon poops before they take you serious.

No, was not black tar. It depends on how high the issue is. They did first tell me it's probably hemorrhoids, but if it continued I should get it checked out. It continued, but couldn't get a colonoscopy due to covid. Once I did they knew immediately what it was.

Wow this is so eerry. I just got the same diagnosis yesterday and i am meeting witht the oncoligist for my plan today. Stage Iv colon with matasisis to the liver. I had some cramping for a few months that would come and go and thought it was more or less my diet. Blood in my stool appeared in december. Went in and fast tracked a ct scan and a colonocscopy. The colonoscopy showed just how bad the mass is. Symptoms are still mild but are more prevelent now. Glad to here there is hope out there. Congrats to you.

Good luck man! Feel free to reach out anytime if you need info or want to talk.

Good to know. I had bloody stool a few weeks ago and got it checked out immediately as well, turns out it waa just internal hemmoroids

Whew!

What would you say helped you the most when you needed it?

Chemo I guess? In all seriousness, there is not one thing I can point to. The best gift I got were Ugg slippers. During chemo I had neuropathy (still have some) and serious cold sensitivity. Those things were godsends. The best thing people did for me was to act normal, as if nothing had changed.

I am stage 4 inflammatory BC. We had 3 months of NED following treatment for stage 3 in 2020/21, and then boom - in skin, lungs and multiple bones. This is the thing I feel like I am fighting for at the moment. I cannot go for the remainder of my life with people being so focused on the cancer aspect of my life. I just want people to realise this is now normal life for us (I am on a 21 day cycle with chemo on day 1 and 8, indefinitely and also had a rads for the mets in my spine). How did you get the people around you to just behave normally?

I made it clear that that was the only way I could deal with it. Not everyone was able to.

That's incredible! Were you always confident you'd beat it (or at least be on that path)? Or did you hear 'stage 4 cancer' and figure you were a goner? In any case, it's amazing and I hope you continue to recover.

I won't say I never had dark times and thoughts, but I always felt that it makes no sense to fret about something you cannot control. If I die, I die, and there's nothing I can do about it. I was not confident or in despair, I just tried not think about it. That said, I should note that I am not out of the woods yet. I'm still considered to be in the high-risk time until January of next year. Thanks!

Congrats. Happy to see stories like these. Hope you get past that finish line soon.

I guess this question depends on where you're located, but did you run into any issues or appointment delays due to covid?

Yes, I did before my initial diagnosis. This was at the height of covid, and they were not doing any elective procedures. So I got pushed off for a few months. It's highly unlikely it would have made any difference. Additionally my wife was unable to come with me for treatment. That was about the extent of it. I'm in the northeast US.

What kind of cancer do you have? Sorry if you mentioned it, but I looked for that info and didn't see it. Also, were there any practical "helps" that your friends or family did or could have provided that would be actually helpful?

Colon cancer with metastasis to the liver. The best help I got from family and friends was just when they acted completely normal, as if nothing changed.

My mother is currently going through oral chemo. My question is: To what extent do you trust the doctors and oncologists to give you the best information? Do you recommend doing due diligence, getting second opinions, and watching closely the effect of their recommendations? Or should we just sit back and relax and trust that they are handling the situation in the most effective way?

Most chemo regimens are quite standardized. Depending on the type of cancer, there may be additional more targeted therapeutics available, but some of this will depend on patient demographics. The chemo/oncology route is rough. My recommendation is to find an oncologist that your mom feels comfortable with and genuinely likes; they will be spending lots of time together and there needs to be mutual trust. While the regimen may be the same, I think the doctor-patient relationship is also crucial to healing.

This is on target. In my case though, installing a HAI pump is always a bit of a question not all doctors agree on.

In my case I'm using a well known world-renowned doctor at a world-renowned cancer hospital. If they don't know what they're doing we're in a heap of trouble.

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No, that is not true for me at all. My whole thing is to act and believe that nothing has changed in my personal and professional relationships. If someone finds it harder to relate to me, that's his or her issue, not mine. I'm still the same guy I always was.

I was diagnosed with Thyroid cancer mid 2021. I’m currently doing my last week of radiation. It’s quite the battle but I’m staying strong and positive. How was your treatment? Tough?

Chemo was 100x worse than radiation in my experience. Radiation wasn't a picnic, but the chemo side effects were very tough to deal with.

Has this experience changed your view on life, what matters and what doesn’t? If so, can you say how?

Answered this already. No, it hasn't yet. Maybe it will at some point.

Which type are you tackling? Mine was Thymoma Type B2

Colon with liver met.

Congrats! Were the logistics of getting chemo what you would have expected before having cancer? Like did they know exactly what kind to give you and for how long? Did you start chemo right after being diagnosed? Does it hurt to get it? I dunno, I guess I’m just interested to hear if it’s “like the movies” portray it.

Don't think I spent much time thinking about chemo before I had cancer. Yes, my oncologist had a clear plan and explained it very well. I did not have pain from the cancer, but the chemo side effects were brutal.

Congratulations. That is very pleasant to hear. I hope you continue to recover.

My question might be a little personal but;

Were there ever nights where you went to sleep not knowing if you’ll wake up in the morning? If yes, how did you manage to deal with the anxiety?

No, my health never got to that point.

Congrats on surviving! Hope you make it through the year without recurrence. Is there anything this has made you say “life’s too short, I should be doing X thing I was always too scared/busy/etc to do”?

Not from this yet. I had an earlier health scare in my life that did make me re-evaluate some things.

Congratulations!! Do you mind if I ask how old you are, and what you do, or did before treatment became intensive? Has this caused any reflection on your part, or any desire to do things differently now?

I am 44. I produce large-scale events. Still do it and did it throughout treatment. Part B I answered so many times already.

Happy you made it through. My question is, do you feel like life is really valuable? I hit rockbottom lately and am planning on acting on my suicidal thoughts.

I'm not through it yet. Yes, I definitely feel life is valuable. If you need help please call the suicide prevention hotline 800-273-8255. You'll find people willing to listen to you and they exist to help people just like you.

My mom had alot of trouble with the "strong fighter" thing. How people treat cancer patients like warriors and you are. But she always felt like cancer wasn't something that could be beat and it was enough to survive. How do you feel about it? Do you feel like you're fighting a battle or more that you're living parallel to this thing and suriving?

No, I don't. I agree with her. I don't believe some people can fight stronger than others. The disease is going to do what it's going to do. Your treatment (and as a religious person, I believe your faith) is what gets you through. Some people make it, some don't. It doesn't mean those who didn't make it didn't fight hard enough. That's unfair and cruel to them and their families.

How did your spouse cope with the diagnosis and treatment? Was there anything that she did that helped you? My wife is in chemo now and trying my best to support her.

It was very hard on her. She has the kids to take care of and had to take of me as well. It was not an easy time, but she did all she could. Best way to help is to be supportive and to be there for her.

Where did you have this done? Md Anderson?

No, MSK.

Very glad to hear your doing well! I’m wondering if your diagnosis had you re-evaluate the way you live your life like a lot of people always say about receiving terminal diagnosis? And if so, now that things are looking better, do you think that you’ll retain that mindset going forward?

Answered a few times already. This did not really change my outlook yet, at this point. It might, IDK.

Any advice you have for nurses working with Cancer patients?

Good question. My nurses were absolutely fantastic. They were seriously some of the best people I ever met. It's a tough job, you are not seeing people at a good time in their lives. The positivity they brought into the room every time they walked in was so valuable and necessary. They are real heroes.

Glad to hear this! What is one of the first thing you plan on doing now that you (hopefully) feel better?

Nothing planned. Just living my life.

I'm currently dealing with my mother's Stage IV pancreatic cancer, and the simple truth of it is that it's almost certainly not curable. I'm obviously dealing with my own stuff stemming from that but when you were going through treatment, what surprising thing or things that other people did for you were most appreciated?

Oh man, so sorry to hear that. The best thing people did for me was nothing. Just treat me normally. Had some buddies come over with some beers and snacks to watch a game, etc. Same as they always did. Was awesome.

I was cleared of my Stage IV Melanoma Cancer but it just came back. I started Radiation yesterday. Any advice for dealing with it?

The radiation was not bad for me really. I understand some people suffer with burns and discomfort, I didn't really have that. Good luck!

Amazing news. I have a very close friend whose son has cancer and its real real bad and real real scary. Very happy to hear its looking good!

If I can ask and its not too traumatic to discuss - how bad did it get for you? Did you ever lose hope? What got you through?

My heart goes out to anyone who has cancer, and anyone who is close to them. Seeing it up close it really is a devastating disease that I wouldnt wish on my worst enemy.

No, never lost hope. Like I said before, there were some dark times, but I tried mostly to not focus on it. Whatever happen will happen regardless of where my head is at. May as well not be nervous about it.

Does Colon cancer in particular run in your family? Do you feel that anything lifestyle related contributed to this? Did you have a history of polyps leading up to the diagnosis?

No, No and No. I mean, I was a smoker when I was younger, haven't had one in 14 years. Impossible to connect them really, but maybe?

How does one know they have cancer? Through a blood test? Or was there any other factor?

They saw with a colonoscopy. Blood tests (CEA) can show high probabilities but are not definite indicators.

Gotcha my aunt and grandma had colon cancer. Aunt is still around. Grandma. Had a stroke and didnt die from the cancer. My dad has had colonoscopies but no sign of cancer. Did you have any symptoms that made you get a colonoscopy? I am not over 40 so I havent gotten one yet. I have had blood test for checkups but nothing alarming ( other than a little high liver enzymes cure was to stop drinking and limit medicines that effect the liver which after my second checkup my liver was normal) Just concerned for the future.

Yes, I did. I had bloody stool for a while and got it checked out.

I'm curious what the specific details of your diagnosis were? My cousin has small cell cervical stage 4 that invaded her liver, breast, and throat. She's now considered disease-free against all odds and takes Avastin for maintenance.

Which details are you looking for?

What’s your favorite dinosaur? 🦕

Compys

I don't know what this means; surely you either have cancer or you don't. How can you have cancer but also not show any evidence of having cancer?

Stage IV means I have cancer that travelled to another organ. It was removed. So right now I have no evidence of disease, but with a high likelihood it will return within the year.

You said your symptoms was just bloody stools - how much blood was there? Barely noticable? Covered in blood, and how long did this happen for?

Hope that you keep on kicking its ass!

On and off for a few months. Ranged from nothing to a bloodbath.

Thanks for answering! If you are able to answer this again - what colour blood and could you tell if it was definitly not from hemorrhoids just from what you experienced?

Red. I could not tell. We needed a colonoscopy.

I have a friend who is in chemo right now, and can't have many guests/visitors. What should I do to support them and their family? I offer to help, but they don't ask anything.

Yeah, it's hard to accept help. If they have kids and you're able to help with the kids that can be a huge help. Make a few dinners for the family. Best gift I got when I was in chemo were Ugg slippers. Lifesavers.

Did the cancer metastasize?

Yes. Stage IV means the cancer metastasized to other organs.

Correct. Colon with liver metastasis.

So happy for you OP. My mother is in a similar situation and this gives me hope.

Awesome! Glad to hear.

Were you able to get vaccinated? Boosted?

I got the first vaccine and had a reaction to it. I was advised not to take a second. Had covid twice. Thankfully the monoclonal antibody infusions wiped that thing right out. Both times.

What were your first symptoms leading up to the cancer diagnosis? I can’t even imagine how scary it must have been, so glad you pulled through my dude 😙

Just bloody stool.

what was the wildest type of snake oil miracle cure did anyone try to sell you and how close a relationship was it before then?

Yeah, there were some of those. Nothing I ever took seriously.

How was the chemo? What you’ve got and how did you felt after recieving and after some time? And of course congratulations on winning the battle, i wish you no further health issues and long long life!

The chemo was not fun at all, I don't wish it on anyone. And this battle might be won for now, but the war is not over just yet. TY!

Thank you. I'm a stage 4e Non-Hodgkins Lymphoma (not the good kind) survivor. Also no evidence of disease after 6 rounds of R-CHOP chemo. Careful monitoring also for the next two years. I have felt the whole experience to be rather surreal, as 6 months ago, I was less than 2 months from death. How did you feel coming out of that last appointment?

Like a new person. But I always keep in the back of my mind that this war is not over just yet.

You didn't specify what cancer. That's like saying "I got shot and survived, ask me anything". Metastatic breast cancer is a very different animal than metastatic pancreatic cancer. But, I believe you had a colon cancer and congrats! Did you get your mets surgically resected? Oligometasectomy for colon cancer has pretty good outcomes if not too many mets.

I did, in some of the answers. Yes, colon cancer with liver met. Yes, liver resection and HAI pump. My original cancer was not surgically treated, as it resolved 100% with chemo and radiation.

Neat

After my aunt went through chemo - everything tasted like metal.

Did anything weird happen to your taste buds?

During chemo, yeah, everything had a metallic taste.

Hi OP!

Did you change your diet when you were first diagnosed? For example: cut out dairy, limit red meat intake , take more vitamins etc..

Nah, not much. Once I started treatment I barely ate anything.

What games you been playing these days?

Got bit by the wordle bug.

Being a cancer patient, I’m sure you’ve spent plenty of time contemplating your own mortality.

How has your outlook on life and death changed since becoming a patient? Also, since you’re making good progress, is there anything you’re looking forward to trying out?

To be honest, no, I don't spend too much time contemplating my mortality. It intrudes from time to time but I try not to dwell on it. I look forward to going deep sea fishing again at some point! I miss it.

What's cancer feel like? What does treatment feel like?

I don't know what cancer feels like. I never felt anything from it. Chemo side effects are not fun.

Hi there, awesome! I'm very happy for you.

I have a morbidly curious question: did you at some point felt like you were going to die? And how did you cope with it?

Thank you for doing this AMA.

Nope, never felt like I was going to, although that was, and is still a possibility. I try not to worry about things I cannot control. That never helped anyone. If I die, I die and there's not anything I can do about it. I try not to dwell on it.

Maybe kinda morbid… but is there anything you put off thinking you weren’t going to have the see the consequences, but now you have to?

Are there anything you regret doing when you thought the end was near?

I never thought the end was near. I was never that close to the end. But no, I never changed anything in my outlook or actions. I try not to worry about things I can't do anything about. What will happen will happen regardless.

Was your treatment a trial? It doesn’t sound like insurance approved treatment? Happy for you! Good to see some success with nsclc. Fist bump.

Nope, not a trial. Insurance approved. I assume you're referring to the pump. It's been done in some institutions for years and is slowly spreading. The numbers back it up.

I'm normal, no desease or anything yet. I'm not happy with my life. 3 years ago my life was very very good but now it's nothing compared to it. I couldn't go to college this year because of financial problems. I feel alone as all my friends are in college now. Can you tell me something that can make me feel better?

Yes. You're in a better place than most of the people in the world. You live in a country where you can make something of yourself, degree or not. I never graduated from college yet I went on to eventually become a director of marketing for a multimillion dollar corporation, and from there I became a large-scale event producer. and I do pretty good for myself. Long story, but university ain't everything. In fact when I hired in my previous position, I did not care about degrees at all. I cared only about ability.

I had someone who died from infection related to being immunocompromised from cancer. He died only after 2-3 years after quiting his job. And retiring. So sad.

I never asked him theses questions: (1) what it felt like after getting the news you had cancer? (2) what thoughts you had if they told you you only had few months or weeks to live? (3) were you ready to pass, things you changed in you life?

(1) what it felt like after getting the news you had cancer?

Will always remember that day. One of the darkest days of my life. Nobody ever wants to hear such news.

(2) what thoughts you had if they told you you only had few months or weeks to live?

I was never told that. In fact, my oncologist won't give numbers and percentages. He says whatever your chances are, are YOUR chances. Don't look at other people's chances. Your case is your case.

were you ready to pass, things you changed in you life?

It never got to that point and hopefully never does.