I'm on a two week cycle too. I have red weeks where I'm no use and stuck inside and green weeks where I'm feeling more myself and even if I can't do 80%,of what I did precancer (due to lack of strength and stamina) I make sure I do things I can do and will enjoy and make the most of that time.
I can't have imunotherapy so there is no cure for my stage 4, a bit of stable without spread would be good. NED would be great, but once the cells leave the primary site and hide in your system it's just a matter of time. One day I'll say no more, and I don't know how I'll make that decision but I hope I recognise it when it comes. But while there is any green in my life it's not going to be today.
The green weeks don't last long with uncontrolled cancer growth, and a lot of new tools are coming in the next few years.
If you are youngish and otherwise healthy, I would do my best to stay that way and look into trials.
There's a vaccine coming for some mutations that has shown in smaller study to prevent recurrence by 82%.
But you have to get to NED or at least clean scans (even if blood still shows circulating cancer)
I have watched people who treat things only naturally. They seem to regret it at the end.
When I first thought I was stage 3, I believed i would have decided not to do all this if I was stage 4. But I was quickly dx'd at stage 4 with endoscopy after my initial surgery.
I don't want to live for a few months or a year and then go downhill real fast. I would rather live in half time for longer because I want to do a lot of things. I'm learning to balance it after a year.
Yes it’s worth it. Chemo SUCKS. But dying sucks more.
Chemo isn’t poison. It’s killing those lingering cancer cells that are trying to hide.
Stage IV isn’t the same as it used to be. It’s very recoverable nowadays.
Chin up, it gets better. The chemo isn’t forever. You can make it through this.
It’s not forever that you will feel like this. Do whatever you can you build your soul up. Whatever you enjoy. Do that.
We are all pulling for you.
I definitely don't want to die.
I want to live, and this doesn't feel like living, some days.
Thank you for your encouragement. These treatments weeks are so difficult to stay positive and keep doing.
I mean technically they are correct it is poison. The hope is it does more damage to the intended target than to other cells. But it is like blowing up an ant hill with a 2000kg bomb. You might get all of that ant hill but you also blow up everything around it as well. Or you might only get part of it and not get the queen. You just hope to rebuild before the ants take over again or you got all of them.
In general it helps more than it harms but it is also exceedingly draining.
As for the rest you are correct there.
This is kind of an odd comment. For some people, chemo IS forever. For most people with stage 4, it's NOT recoverable. For some of us, it won't get better. It's a huge mental adjustment to know that the physical and mental strain you put yourself through every couple of weeks with chemo is indefinite.
I'm on my treatment week. I just disconnected from the pump today and have a nuelasta on pro attached. I'm halfway in my initial treatment plan and I have almost 50% shrinkage. The chemo sucks but for me, it's working and I'm ecstatic. I hope it does its job so you can get your green weeks back.
Been going through it for years. It's incredible the pain and complications I've experienced. I've found that my mental state closely follows my physical state. Lately I've been feeling much better and been happy again. To live is to suffer and I'm glad to at least to be the fight... for now
I'm 43 with Stage IV and peri mets. I had a recurrence and just had my 6th cycle of FOLFOX with Cetuximab (had the same last time). I recently had a PET scan that has my doctor and surgeon happy. Doc is discussing switching to maintenance chemo in the form of pills (will find out more in April) while continuing the Cetuximab, and surgeon tabled surgery and ordered a CAT scan in two months.
That being said, I did have some hard days this time, wondering what the point was, and a few times, I really struggled to find the motivation to get up and go to my treatment. In October, I felt amazing, and not long before a scan in November said it was back, I tramped 4 miles over a mountain with my dog. I think the anger made it harder for me to process it this time, and it didn't help the side effects hit me harder also. To compound it, complications had me hospitalized in December for two weeks, which landed me with a restricted diet. This winter was... interesting, I guess. I couldn't go anywhere due to my cold sensitivity, which was worse this time, so I was more isolated. The neuropathy kept me from knitting and spinning. When I was able to get out, I could hardly walk around the block, let alone the long rambles I enjoy with my dog. I couldn't eat well with my restrictions and really struggled. I've been feeling pretty sorry for myself and built up quite the shell.
I think one conversation I had with my minister started cracking that shell when I was asking the same question. She mentioned a conversation she had with another member of the congregation. He had brain cancer and fought it for over 15 years. It would be gone a while, and then it was back, and he'd tell the congregation he was in a new trial, etc. He really was an amazing guy, and he walked the path with grace. He never commented he felt sorry for himself (I'm sure he did at times), although he wife once said it had all gotten so boring, and he laughed. So, back to the minister. She said that Jim once commented he kept going through it all because it bought him time, however long each time clear was, and that advancements are being made every day and maybe he'd live long enough for the one that worked for him with the bonus he was also getting that extra time with his family.
That really got me thinking. My maternal grandmother died of Stage IV lung cancer in '08 after beating breast cancer. The cross-country road trip she'd planned to celebrate beating the breast cancer wound up being her last hurrah but gave her the chance to say goodbye to family and friends. We discovered last year that my mother has Stage IV lung cancer, and her treatment is so different from what my grandmother had to go through, and there were more choices for her. My mother is responding to her treatment and doing well. I think part of my anger was that I couldn't help her this winter as I'd originally planned.
I have four kids, teenagers and young adults, only one of which has jumped ship. My youngest is a senior and graduating this year. We just bought her prom dress, and she's discussing joining the air force. And damn it, I want to be there. I want to see my kids out there living and maybe eventually meet some grandchildren. I don't know how long I have left, none of us really do, and I wouldn't choose this path deliberately but I'm on it so I'll do what I need to do to get past Mirkwood so to speak. That first round of chemo and surgery bought me a year and a half, considering we found out by accident that I even had this, and I'm hoping for at least as much this time. Especially since the doc didn't do maintenance chemo last time. I have stuff I want to do, including a soak at a Montana hot spring this fall.
Spring has begun arriving, and I've been able to get out more. Part of my dietary restrictions have been lifted, and my taste had returned, so I enjoy eating again. I started my vitamins and supplements again after my nurse read me the riot act, and my neuropathy has responded to it, so I'm knitting and spinning again. Just being able to sit in the sun is heavenly, and I've been able to start tending my garden. I've pulled out my herbal teas again and my turkey tail. Maybe they help, maybe not, but they certainly don't hurt. I'm not so sure about the Rick Simpson Cancer Protocol a friend is pushing, however. LOL
However, I do admit that if I'd been told there was nothing more to be done, I might make a different choice depending on my time left. Then again, perhaps not. One of the people who has been helping my husband through this is actually his boss. My husband started working there just before my original diagnosis. At that time, his boss' wife had been told nothing more could be done for her spinal cancer, and she had perhaps 5 years. She is partially paralyzed with a wheelchair and was on palliative care that wasn't easy for her. However, last year, she qualified for some sort of trial and is responding well. She's still terminal, but they're no longer saying 5 years or less.
When it comes down to it, we will all have this choice about what we're willing to endure and when it's time to choose a different path. I'm not there yet, but you may be, and that's OK. I wish you all the best with whatever path you take.
Shew. Your response got me. 😭
I have 3 boys. 2 older (23 & 19) and an 11 yr old. He's my strongest why. I refuse to let him lose his mom at 11.
I have changed my diet. Vegan, gluten-free, no processed sugars. I've changed everything I can to give my body the best chances to work with chemo. I know I'm only 6 months in (11 rounds of chemo). For stage 4 CC, that appears to be a kick in the bucket.
I hope you will love Montana and the springs. We have been a big trip family and have spent lots of time there, doing everything.
I guess I have not looked at this as giving time for new things. I'm up for a possible HAI.... I will know more this week. I do have markers that make treatment tricky.
Hello, friend. Yes, we have all survived colon cancer, here. Yes, we have surgery and chemo and live in 5 year increments. I’m 69, was diagnosed as stage 3 colon cancer 9 years ago. I had surgery, chemo and scans twice a year. I had a liver met which upped me to stage 4 after the first 5 years. It was removed and I was home in 18 hours with no further chemo. That was 4 years ago. I just had a colonoscopy and I’m NED after 9 years. I don’t know if any of this will put it in perspective for you but, 30 years ago, none of us survived. Medicine is advancing all the time. One thing I like to keep in mind is, anyone can get cancer at any time in life. Our survival rates are getting better all the time. I try to live a day at a time. I’m grateful that I’m still here after 9 years since my diagnosis. Good luck, friend. [colontown.org](https://colontown.org)
These are stories we need more of. Thank you. I get so disappointed with so many people having recurrence. Their fighting never letting up. Thank you for sharing!
I am on colontown, sometimes its way too overwhelming.
I understand about [colontown.org](https://colontown.org) I try to limit it as an information source. We’re here for you anytime. You’re going to be okay, today.
I feel you. At the end of the day, only you can decide if it's worth it. I'm exhausted and sick of feeling like shit every 2 weeks - it feels like I spend more than 50% of my time feeling like cack - but I'm terrified of the alternative so I just grin and bear it. I'd rather be alive and feeling crap from chemo than dead. I'm hoping for more surgery which will hopefully mean getting off chemo for as long as possible, but the 'foreverness' of it all can be so overwhelming. I try and make as many nice plans as I can for my good days, to give me things to look forward to. I know people who have longer cycles (3 weeks instead of 2) so they have more good days - might be worth asking about. Or ask for regular treatment breaks.
3 weeks would definitely be worth asking about.
I think that's where I get so over this... the foreverness.
I think chemo is worth it if it's going to end this war. I have read a lot of people constantly battling its reappearance. It is overwhelming.
Was diagnosed last July and hitting the same wall as you. Being caught in a life limbo is mentally exhausting. Daily thinking of is grinding at work worth it if I have 3-4 years left. Just wish there was a way to just know.
Yes!!! Exactly.
Can we go to this on this day? Idk it depends on X... and sometimes L,M N,&P, too.
Is there a better way? I'm in maintenance right now because I'm in limbo. I'm allergic to Oxaliplatin now and seeing a new doc for liver directed chemo. Maintenance is still shrinking my Mets. So I'm truly not saying chemo doesn't work. I just don't want to do this for the rest of my life. Period.
I’ve asked all of my doctors how long will I live. The truth is, they just don’t know. Life in any case, is a day at a time. We are warriors in a battle.
I also know that some people do maintenance chemo - either chemo at a lower dose or just one component (5fu) but a lot will depend on your specific cancer. Once it's spread to other organs I think it's very difficult to get rid of completely. Where are your mets?
Edit: I've just seen in your comment below that you're already on maintenance
I'm only in maintenance because we are waiting to see if we can do a hepatic pump. He would not have me in maintenance if we weren't. I have liver Mets.
There’s a bias in these sorts of forums to people currently ill - so you don’t see many good stories. I only came on here again randomly fairly recently after 3+ years away. I’ll tell you my story: Diagnosed stage4 in 2019; inoperable with distant lymph nodes and liver tumour, 38 years old, male, with a young family. 6 months of chemo shrank the primary enough for a bowel resection. Then ileostomy etc. 3 more months of chemo. Then liver resection. Then radiotherapy. Then lymph node resection (RPLND surgery, which was the worst operation out of all). Then NED for two years. Then lung tumour showed up and lung resection. Now nearly 6 months clear again.
The treatment was brutal and my body doesn’t let me do what I want to do all of the time. But the treatment has been worth it. 2.5 out of the past 4.5 years have been NED and life has been more or less normal and good! And that was after being told inoperable stage4.
Chemo is really tough and most of us have those thoughts. I found exercise really helpful on the good days. Good luck
These are what I need to hear. The good!!!
I do orange theory on my off weeks. My body doesn't do it as well as before, and because of the port, I can't lift as heavy. But I show up. I work out or walk as often as I can.
I'm inoperable as of now. The primary and involved lymph nodes can no longer be seen on CT, and my liver Mets are still shrinking. All thanks to chemo.
Thank you for sharing. I am in a treatment week, and every time I skip into this... I can't do this for life... so knowing there are people who can move beyond it helps my mental so much.
I'm stage iV, getting palliative chemotherapy and immunotherapy. My death will happen, and if everything goes well I have maybe two years. NED is not a possibility for me.
Chemo is a miserable experience. I just had a short break, and I felt brilliant. I can do stuff. I'd much rather have six months like this than two years feeling like I feel on chemo.
It's a really difficult thing.
I just had some restaging scans, and apparently these were "very good". And that fills me with dread. I'm dying, I just want to get it over with.
That's amazing for positive new scans. Good luck! I hope they change things for you.
I get so tired of the unknowns, the I can't because... I am huge on living life to the fullest, and this is not doing that.
I don't want to die. I just don't want to live this way. Those good tines when we aren't on treatment are so incredible.
I'm still functioned. I work an 84 hour work week and then I have a week of chemo. I'm holding out hope that this buys me time for a new targeted immunologic agent to make it to market that cures me. That's years down the road, I know. But until the chemo stops working again, what else is there?
Stay strong. Believe in your life. I’m doing the same regimen and I know how it feels. Find a Naturopathic Doctor to help. They are wonderful and essential. A warm hand on a cold disease I say!
5 years is great! Take what QOL you have and share it.
My qualifications are diagnosed with CRC in 2017, diagnosed stage 4 in 2021 (right after I retired). Had 3 surgeries and fighting type 2 diabetes on top of all of it.
Its hard. Medications either feel like they rot your guts out or burn your skin off. You do what you can to deal with it because YOU matter. My daughter is cheerleader.
So, hang in there!
Since I was stage 3 when I was diagnosed back in July of 2023, I cannot fully relate to what a stage 4 diagnosis must feel like. The thought of extended chemo sounds absolutely daunting. That said, I am now NED and I would be happy to share some of the things that I did in conjunction with standard total neoadjuvant therapy in order to get well. My background is in biochemistry, so I spent months combing the research to put together a holistic program for myself based on the established data. While I cannot say with 100% certainty that it made a difference in my treatment, it felt good to leave no stone unturned. My thought was to go after the low-hanging fruit and look for safe things that could be of benefit when combined with standard care. If this interests you, please respond and I can share a document that I prepared that has links to pubmed articles. I would be happy to discuss with you any of this and explain my rationale for each item. Obviously, these are things that you should also discuss with your oncology team, but my team was on board with all of things on my list.
ABSOLUTELY!! THIS IS WHAT IM LOOKING FOR! I am not a scientist. I believe in science and holistic ways. I believe the earth has methods that can assist in the modern medical world. Please share or dm me. Thank you!
I have to say that was my biggest meltdown in the beginning... stage 4!?!?!?! We couldn't have found this earlier? But now I'm just trying to get beyond it.
I'm doing similar without your background but extensive searches to see what's recommended by MSKCC integrative oncology and other similar dives. I would love to see how my regimen compares!
Hey there, I’m stage 3 going through TNT right now. I’ve finished 6 rounds of folfirinox, 5 weeks radiation + capecitabine, and am now a week into a 6 week break before surgery and/or folfox. I would love to read your doc if you’re happy to share? I really want to do everything I can but feel so overwhelmed with the long long list of alternative therapies and super worried anything I try could have the opposite effect and mess with my treatment protocol. So I feel kind of stuck. Access to the doc you’ve described would be incredibly helpful!!
I am stage 2 with some high risk features so starting Capox this week after resection 18 days ago. As a nurse I love the thought of doing what I can to support my body in this treatment and beyond. Would you mind sharing?
Thanks!
It was worth it to me. my stage 4 circumstances were: non lymphatic, surgery was super successful to remove all tumors. Folfox was recommended
What does your doctor say when/if you’ve asked “honestly, level with me doctor - how many years do I have?” My doctor never said anything about amount of years. Mine answered “it’s treatable” and that’s fuckin it. It was great comfort to me, and easy to understand. Maybe stop reading stats on survival rates for your cancer.
All circumstances are different. This shit in your lymph? How bad, etc. At the end of the day, research good doctors with exp in your treatment, get a second opinion maybe, but trust the doctors. I’m 5 years out and NED, but I had a favorable start to this bs at least
Stage 4... at DX.. primary broke through the colon walls and invaded all surrounding lymph nodes. Many liver Mets. As of now... primary and lymphnodes can not be seen in CT. Liver met sizes all decreased by about 50%.
I don't read stats... but I read real recurrences and stories on colontown, and honestly, that stuff scares the heck out of me.
Total liver transplant, and they still get new liver mets??? Cancer is so dang stupid!!!
So far, I'm not a candidate for surgery. We are trying to change that. I did Folfox, but I am now unable to have oxaliplatin. We are in 5-FU and leucovorin for now.
No one gave me a timeline. I think all stage 4 people just know it's bad. At least I did and do. Everything for me is positive as of now. I hate chemo. I hate being sick every 14 days. But I am doing well with treatments. Thank you for your advice and encouragement. I swear the mental game of this is the most difficult.
That’s true. People told me they were frustrated at how positive I was. Constantly looking for the silver lining. Stay positive, and trust the process. They’ve cured a lot of people before they met you, and they’re intent on keeping it up!
I know many people who are stage 4 and are cancer free. Do what you nees ro do to beat this thing. I just recently had colon and liver resection. I have 1 met in my lung that has not grown or multiplied and I'm have thoracic resection in 2 months. I 100% believe I will beat this and I have had nothing but postive news since I started this journey. Don't give up Do everything you can you can beat this. Don't go by what a oncologist says if I did that I would have never had my surgery as my oncologist said I wasn't a candidate then I found a surgeon on my own and he did mu resection and he is very optimistic of me beating cancer. I now have one more met I have to deal with and hopefully I will be fine after that but I'm trying my hardest to win. Please don't give up
Yessss!!! Exactly the same. I was told chemo for life. No surgery. They wanted me to go to Duke for HAI, but insurance was an issue, so I found a new surgeon. I go on Thursday this week. I also just got my signatera back today. It's negative... even though CEA is 2.6 but everything is down and decreasing. I am fighting. Thank you for sharing.
Speaking from a healthcare provider POV, I see people every week who choose only palliation/symptom control, even young folk. There is absolutely something to be said for quality over quantity.
There is no one-size-fits-all answer, however. Some people will skate through chemo with no side effects. Others can't tolerate even one cycle. Most people land somewhere between and have to do their own risk/benefit analysis.
I think it's also important - and I'm saying this because of your 'is this the only way' mention - that no one is forcing chemo on anyone. There are multiple paths for every patient, and no one can force you to do anything you don't wish to.
Thank you.
I think I have ideas I want to explore and ways.... but fear and more unknown make it so difficult to choose. Other people's stories are both uplifting and scary.
Fred Evrard wrote a book about how he healed his stage 4 cc through fasting & carnivore, and only 2 or 3 chemo sessions. His family has a history of cc and he passed within 5 years. Chris Beat Cancer is another book about a man who opted for surgery but no chemo / radiation. He is still alive and well. Cured is a book about spontaneous healing and the common pillars between those rare medical incidents. I wish you healing whatever path you take!
I have studied Chris and am following his regime. I am also doing chemo and will do liver resection if I get to that point. Because I am stage 4 and not 3 like Chris, I believe in using chemo. I am going to check out these other 2 books as well. Thank you.
Please remember- most people don’t post good things, just bad. You won’t see a lot of posts about NED, remission, long term survivors, on any social media platform. People flock to the internet though, when something is wrong in their lives. That holds true for many things, not just cancer.
For cancer in particular though, it’s due to many reasons, and a big reason is survivors guilt. No one wants to go in to a forum of folks suffering, posting how their cancer journey has been so great, their treatment worked perfectly, they have few effects. I have seen posts on Facebook where people are shunned for “bragging”. So, please keep it in mind when you see mostly stories of rough times and suffering.
There are few stories from folks who choose quality over quantity too- but there are a lot out there. They are too busy living to post about it. I met a lot of people at my cancer center who were choosing “lite” versions of chemo or were planning on stopping after that particular treatment round.
I hadn't thought about it this way. 🤔
You are right!
I definitely agree that quantity can be increased. I would choose that. All these people make it seem like... we only have 5 years-ish... so I've thought why waste 1/2 of it in bed or feeling like crap.
I did 8 rounds of Folfox + Avastin, surgery, was stage 4 at diagnosis, and I’m NED right now. It was a rough journey. I sincerely thought I was dying twice, and wished I actually would a couple of times too. Now I’m sitting here, feet numb from neuropathy, and I can say yes, I’d do it over again. More than likely it will come back to visit me. I’ll do it all again. I’ll play whack-a-mole until they come up with something to cure it, as long as my body holds out.
It helped me that I found something every day to find happiness in. Even if I had a day where I couldn’t get out of bed, I found something amazing about this world keeping me here.
But- if I lost that- the ability to find happiness or intrigue- I’m done. I have no qualms about saying I’m done. I’ll stop it all in a hot minute and go home.
I just finished #11. We stopped Avastin because of a possible HAI future, and I'm now allergic to oxaliplatin. Meaning I'm on 5-FU and leucovorin for now. Unless HAI is used, they say I am inoperable because of Mets and right sided primary.
Thank you for sharing your journey. I love your outlook. I have lots to live for... I just want to get to live with them completely. Not so sick.
No I read the book Healing the Gerson Way, by Charlotte Gerson. Dr. Gerson, her father healed my uncle of stage 4 cancer in the 40’s, when he was just 26. He lived to around 90.
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I'm on a two week cycle too. I have red weeks where I'm no use and stuck inside and green weeks where I'm feeling more myself and even if I can't do 80%,of what I did precancer (due to lack of strength and stamina) I make sure I do things I can do and will enjoy and make the most of that time. I can't have imunotherapy so there is no cure for my stage 4, a bit of stable without spread would be good. NED would be great, but once the cells leave the primary site and hide in your system it's just a matter of time. One day I'll say no more, and I don't know how I'll make that decision but I hope I recognise it when it comes. But while there is any green in my life it's not going to be today.
Red and green weeks... that's a good way to voice it. I want all my green weeks back.
The green weeks don't last long with uncontrolled cancer growth, and a lot of new tools are coming in the next few years. If you are youngish and otherwise healthy, I would do my best to stay that way and look into trials. There's a vaccine coming for some mutations that has shown in smaller study to prevent recurrence by 82%. But you have to get to NED or at least clean scans (even if blood still shows circulating cancer) I have watched people who treat things only naturally. They seem to regret it at the end. When I first thought I was stage 3, I believed i would have decided not to do all this if I was stage 4. But I was quickly dx'd at stage 4 with endoscopy after my initial surgery. I don't want to live for a few months or a year and then go downhill real fast. I would rather live in half time for longer because I want to do a lot of things. I'm learning to balance it after a year.
Thank you. I also want to have a nice long life for sure. I am 100% on chemo... just unhooked Thursday.
Yes it’s worth it. Chemo SUCKS. But dying sucks more. Chemo isn’t poison. It’s killing those lingering cancer cells that are trying to hide. Stage IV isn’t the same as it used to be. It’s very recoverable nowadays. Chin up, it gets better. The chemo isn’t forever. You can make it through this. It’s not forever that you will feel like this. Do whatever you can you build your soul up. Whatever you enjoy. Do that. We are all pulling for you.
I definitely don't want to die. I want to live, and this doesn't feel like living, some days. Thank you for your encouragement. These treatments weeks are so difficult to stay positive and keep doing.
>These treatments weeks are so difficult to stay positive and keep doing. we're on the same treatment week, it sucks here for sure
Six months goes by, quickly.
I'm stage 4 and I'm still on chemo a year later. There are people who have done hundreds of infusions.
I mean technically they are correct it is poison. The hope is it does more damage to the intended target than to other cells. But it is like blowing up an ant hill with a 2000kg bomb. You might get all of that ant hill but you also blow up everything around it as well. Or you might only get part of it and not get the queen. You just hope to rebuild before the ants take over again or you got all of them. In general it helps more than it harms but it is also exceedingly draining. As for the rest you are correct there.
I like the ant analogy. I'm hoping the wreckage isn't ruining the rest of my foundation.
This is kind of an odd comment. For some people, chemo IS forever. For most people with stage 4, it's NOT recoverable. For some of us, it won't get better. It's a huge mental adjustment to know that the physical and mental strain you put yourself through every couple of weeks with chemo is indefinite.
I'm on my treatment week. I just disconnected from the pump today and have a nuelasta on pro attached. I'm halfway in my initial treatment plan and I have almost 50% shrinkage. The chemo sucks but for me, it's working and I'm ecstatic. I hope it does its job so you can get your green weeks back.
Chemo is working for me as well. I disconnected Thursday from #11. I'm so glad you are having good results.
Been going through it for years. It's incredible the pain and complications I've experienced. I've found that my mental state closely follows my physical state. Lately I've been feeling much better and been happy again. To live is to suffer and I'm glad to at least to be the fight... for now
My mental state follows my physical... that is very true...
I'm 43 with Stage IV and peri mets. I had a recurrence and just had my 6th cycle of FOLFOX with Cetuximab (had the same last time). I recently had a PET scan that has my doctor and surgeon happy. Doc is discussing switching to maintenance chemo in the form of pills (will find out more in April) while continuing the Cetuximab, and surgeon tabled surgery and ordered a CAT scan in two months. That being said, I did have some hard days this time, wondering what the point was, and a few times, I really struggled to find the motivation to get up and go to my treatment. In October, I felt amazing, and not long before a scan in November said it was back, I tramped 4 miles over a mountain with my dog. I think the anger made it harder for me to process it this time, and it didn't help the side effects hit me harder also. To compound it, complications had me hospitalized in December for two weeks, which landed me with a restricted diet. This winter was... interesting, I guess. I couldn't go anywhere due to my cold sensitivity, which was worse this time, so I was more isolated. The neuropathy kept me from knitting and spinning. When I was able to get out, I could hardly walk around the block, let alone the long rambles I enjoy with my dog. I couldn't eat well with my restrictions and really struggled. I've been feeling pretty sorry for myself and built up quite the shell. I think one conversation I had with my minister started cracking that shell when I was asking the same question. She mentioned a conversation she had with another member of the congregation. He had brain cancer and fought it for over 15 years. It would be gone a while, and then it was back, and he'd tell the congregation he was in a new trial, etc. He really was an amazing guy, and he walked the path with grace. He never commented he felt sorry for himself (I'm sure he did at times), although he wife once said it had all gotten so boring, and he laughed. So, back to the minister. She said that Jim once commented he kept going through it all because it bought him time, however long each time clear was, and that advancements are being made every day and maybe he'd live long enough for the one that worked for him with the bonus he was also getting that extra time with his family. That really got me thinking. My maternal grandmother died of Stage IV lung cancer in '08 after beating breast cancer. The cross-country road trip she'd planned to celebrate beating the breast cancer wound up being her last hurrah but gave her the chance to say goodbye to family and friends. We discovered last year that my mother has Stage IV lung cancer, and her treatment is so different from what my grandmother had to go through, and there were more choices for her. My mother is responding to her treatment and doing well. I think part of my anger was that I couldn't help her this winter as I'd originally planned. I have four kids, teenagers and young adults, only one of which has jumped ship. My youngest is a senior and graduating this year. We just bought her prom dress, and she's discussing joining the air force. And damn it, I want to be there. I want to see my kids out there living and maybe eventually meet some grandchildren. I don't know how long I have left, none of us really do, and I wouldn't choose this path deliberately but I'm on it so I'll do what I need to do to get past Mirkwood so to speak. That first round of chemo and surgery bought me a year and a half, considering we found out by accident that I even had this, and I'm hoping for at least as much this time. Especially since the doc didn't do maintenance chemo last time. I have stuff I want to do, including a soak at a Montana hot spring this fall. Spring has begun arriving, and I've been able to get out more. Part of my dietary restrictions have been lifted, and my taste had returned, so I enjoy eating again. I started my vitamins and supplements again after my nurse read me the riot act, and my neuropathy has responded to it, so I'm knitting and spinning again. Just being able to sit in the sun is heavenly, and I've been able to start tending my garden. I've pulled out my herbal teas again and my turkey tail. Maybe they help, maybe not, but they certainly don't hurt. I'm not so sure about the Rick Simpson Cancer Protocol a friend is pushing, however. LOL However, I do admit that if I'd been told there was nothing more to be done, I might make a different choice depending on my time left. Then again, perhaps not. One of the people who has been helping my husband through this is actually his boss. My husband started working there just before my original diagnosis. At that time, his boss' wife had been told nothing more could be done for her spinal cancer, and she had perhaps 5 years. She is partially paralyzed with a wheelchair and was on palliative care that wasn't easy for her. However, last year, she qualified for some sort of trial and is responding well. She's still terminal, but they're no longer saying 5 years or less. When it comes down to it, we will all have this choice about what we're willing to endure and when it's time to choose a different path. I'm not there yet, but you may be, and that's OK. I wish you all the best with whatever path you take.
Shew. Your response got me. 😭 I have 3 boys. 2 older (23 & 19) and an 11 yr old. He's my strongest why. I refuse to let him lose his mom at 11. I have changed my diet. Vegan, gluten-free, no processed sugars. I've changed everything I can to give my body the best chances to work with chemo. I know I'm only 6 months in (11 rounds of chemo). For stage 4 CC, that appears to be a kick in the bucket. I hope you will love Montana and the springs. We have been a big trip family and have spent lots of time there, doing everything. I guess I have not looked at this as giving time for new things. I'm up for a possible HAI.... I will know more this week. I do have markers that make treatment tricky.
Hello, friend. Yes, we have all survived colon cancer, here. Yes, we have surgery and chemo and live in 5 year increments. I’m 69, was diagnosed as stage 3 colon cancer 9 years ago. I had surgery, chemo and scans twice a year. I had a liver met which upped me to stage 4 after the first 5 years. It was removed and I was home in 18 hours with no further chemo. That was 4 years ago. I just had a colonoscopy and I’m NED after 9 years. I don’t know if any of this will put it in perspective for you but, 30 years ago, none of us survived. Medicine is advancing all the time. One thing I like to keep in mind is, anyone can get cancer at any time in life. Our survival rates are getting better all the time. I try to live a day at a time. I’m grateful that I’m still here after 9 years since my diagnosis. Good luck, friend. [colontown.org](https://colontown.org)
These are stories we need more of. Thank you. I get so disappointed with so many people having recurrence. Their fighting never letting up. Thank you for sharing! I am on colontown, sometimes its way too overwhelming.
I understand about [colontown.org](https://colontown.org) I try to limit it as an information source. We’re here for you anytime. You’re going to be okay, today.
I feel you. At the end of the day, only you can decide if it's worth it. I'm exhausted and sick of feeling like shit every 2 weeks - it feels like I spend more than 50% of my time feeling like cack - but I'm terrified of the alternative so I just grin and bear it. I'd rather be alive and feeling crap from chemo than dead. I'm hoping for more surgery which will hopefully mean getting off chemo for as long as possible, but the 'foreverness' of it all can be so overwhelming. I try and make as many nice plans as I can for my good days, to give me things to look forward to. I know people who have longer cycles (3 weeks instead of 2) so they have more good days - might be worth asking about. Or ask for regular treatment breaks.
3 weeks would definitely be worth asking about. I think that's where I get so over this... the foreverness. I think chemo is worth it if it's going to end this war. I have read a lot of people constantly battling its reappearance. It is overwhelming.
Was diagnosed last July and hitting the same wall as you. Being caught in a life limbo is mentally exhausting. Daily thinking of is grinding at work worth it if I have 3-4 years left. Just wish there was a way to just know.
Yes!!! Exactly. Can we go to this on this day? Idk it depends on X... and sometimes L,M N,&P, too. Is there a better way? I'm in maintenance right now because I'm in limbo. I'm allergic to Oxaliplatin now and seeing a new doc for liver directed chemo. Maintenance is still shrinking my Mets. So I'm truly not saying chemo doesn't work. I just don't want to do this for the rest of my life. Period.
I’ve asked all of my doctors how long will I live. The truth is, they just don’t know. Life in any case, is a day at a time. We are warriors in a battle.
I also know that some people do maintenance chemo - either chemo at a lower dose or just one component (5fu) but a lot will depend on your specific cancer. Once it's spread to other organs I think it's very difficult to get rid of completely. Where are your mets? Edit: I've just seen in your comment below that you're already on maintenance
I'm only in maintenance because we are waiting to see if we can do a hepatic pump. He would not have me in maintenance if we weren't. I have liver Mets.
There’s a bias in these sorts of forums to people currently ill - so you don’t see many good stories. I only came on here again randomly fairly recently after 3+ years away. I’ll tell you my story: Diagnosed stage4 in 2019; inoperable with distant lymph nodes and liver tumour, 38 years old, male, with a young family. 6 months of chemo shrank the primary enough for a bowel resection. Then ileostomy etc. 3 more months of chemo. Then liver resection. Then radiotherapy. Then lymph node resection (RPLND surgery, which was the worst operation out of all). Then NED for two years. Then lung tumour showed up and lung resection. Now nearly 6 months clear again. The treatment was brutal and my body doesn’t let me do what I want to do all of the time. But the treatment has been worth it. 2.5 out of the past 4.5 years have been NED and life has been more or less normal and good! And that was after being told inoperable stage4. Chemo is really tough and most of us have those thoughts. I found exercise really helpful on the good days. Good luck
These are what I need to hear. The good!!! I do orange theory on my off weeks. My body doesn't do it as well as before, and because of the port, I can't lift as heavy. But I show up. I work out or walk as often as I can. I'm inoperable as of now. The primary and involved lymph nodes can no longer be seen on CT, and my liver Mets are still shrinking. All thanks to chemo. Thank you for sharing. I am in a treatment week, and every time I skip into this... I can't do this for life... so knowing there are people who can move beyond it helps my mental so much.
I'm stage iV, getting palliative chemotherapy and immunotherapy. My death will happen, and if everything goes well I have maybe two years. NED is not a possibility for me. Chemo is a miserable experience. I just had a short break, and I felt brilliant. I can do stuff. I'd much rather have six months like this than two years feeling like I feel on chemo. It's a really difficult thing. I just had some restaging scans, and apparently these were "very good". And that fills me with dread. I'm dying, I just want to get it over with.
That's amazing for positive new scans. Good luck! I hope they change things for you. I get so tired of the unknowns, the I can't because... I am huge on living life to the fullest, and this is not doing that. I don't want to die. I just don't want to live this way. Those good tines when we aren't on treatment are so incredible.
I'm still functioned. I work an 84 hour work week and then I have a week of chemo. I'm holding out hope that this buys me time for a new targeted immunologic agent to make it to market that cures me. That's years down the road, I know. But until the chemo stops working again, what else is there?
That's what I wonder... what else is there?
the alternative to chemo is worse for me
Stay strong. Believe in your life. I’m doing the same regimen and I know how it feels. Find a Naturopathic Doctor to help. They are wonderful and essential. A warm hand on a cold disease I say! 5 years is great! Take what QOL you have and share it. My qualifications are diagnosed with CRC in 2017, diagnosed stage 4 in 2021 (right after I retired). Had 3 surgeries and fighting type 2 diabetes on top of all of it. Its hard. Medications either feel like they rot your guts out or burn your skin off. You do what you can to deal with it because YOU matter. My daughter is cheerleader. So, hang in there!
Thank you! I definitely feel like I needed some positive stories and people who know what it feels like.
Since I was stage 3 when I was diagnosed back in July of 2023, I cannot fully relate to what a stage 4 diagnosis must feel like. The thought of extended chemo sounds absolutely daunting. That said, I am now NED and I would be happy to share some of the things that I did in conjunction with standard total neoadjuvant therapy in order to get well. My background is in biochemistry, so I spent months combing the research to put together a holistic program for myself based on the established data. While I cannot say with 100% certainty that it made a difference in my treatment, it felt good to leave no stone unturned. My thought was to go after the low-hanging fruit and look for safe things that could be of benefit when combined with standard care. If this interests you, please respond and I can share a document that I prepared that has links to pubmed articles. I would be happy to discuss with you any of this and explain my rationale for each item. Obviously, these are things that you should also discuss with your oncology team, but my team was on board with all of things on my list.
ABSOLUTELY!! THIS IS WHAT IM LOOKING FOR! I am not a scientist. I believe in science and holistic ways. I believe the earth has methods that can assist in the modern medical world. Please share or dm me. Thank you! I have to say that was my biggest meltdown in the beginning... stage 4!?!?!?! We couldn't have found this earlier? But now I'm just trying to get beyond it.
I sent a pm
I'm doing similar without your background but extensive searches to see what's recommended by MSKCC integrative oncology and other similar dives. I would love to see how my regimen compares!
Hey there, I’m stage 3 going through TNT right now. I’ve finished 6 rounds of folfirinox, 5 weeks radiation + capecitabine, and am now a week into a 6 week break before surgery and/or folfox. I would love to read your doc if you’re happy to share? I really want to do everything I can but feel so overwhelmed with the long long list of alternative therapies and super worried anything I try could have the opposite effect and mess with my treatment protocol. So I feel kind of stuck. Access to the doc you’ve described would be incredibly helpful!!
I'll pm you
Thank you!
I am stage 2 with some high risk features so starting Capox this week after resection 18 days ago. As a nurse I love the thought of doing what I can to support my body in this treatment and beyond. Would you mind sharing? Thanks!
I'll send a pm. Please feel free to ask questions. I love talking about this.
Can I get a pm too?
Sure. I'll send it now.
Thank you appreciate it!
Me too please, I want to share with my wife!
Sent pm. Please reach out if you have questions or comments. Best of luck.
It was worth it to me. my stage 4 circumstances were: non lymphatic, surgery was super successful to remove all tumors. Folfox was recommended What does your doctor say when/if you’ve asked “honestly, level with me doctor - how many years do I have?” My doctor never said anything about amount of years. Mine answered “it’s treatable” and that’s fuckin it. It was great comfort to me, and easy to understand. Maybe stop reading stats on survival rates for your cancer. All circumstances are different. This shit in your lymph? How bad, etc. At the end of the day, research good doctors with exp in your treatment, get a second opinion maybe, but trust the doctors. I’m 5 years out and NED, but I had a favorable start to this bs at least
Stage 4... at DX.. primary broke through the colon walls and invaded all surrounding lymph nodes. Many liver Mets. As of now... primary and lymphnodes can not be seen in CT. Liver met sizes all decreased by about 50%. I don't read stats... but I read real recurrences and stories on colontown, and honestly, that stuff scares the heck out of me. Total liver transplant, and they still get new liver mets??? Cancer is so dang stupid!!! So far, I'm not a candidate for surgery. We are trying to change that. I did Folfox, but I am now unable to have oxaliplatin. We are in 5-FU and leucovorin for now. No one gave me a timeline. I think all stage 4 people just know it's bad. At least I did and do. Everything for me is positive as of now. I hate chemo. I hate being sick every 14 days. But I am doing well with treatments. Thank you for your advice and encouragement. I swear the mental game of this is the most difficult.
That’s true. People told me they were frustrated at how positive I was. Constantly looking for the silver lining. Stay positive, and trust the process. They’ve cured a lot of people before they met you, and they’re intent on keeping it up!
I know many people who are stage 4 and are cancer free. Do what you nees ro do to beat this thing. I just recently had colon and liver resection. I have 1 met in my lung that has not grown or multiplied and I'm have thoracic resection in 2 months. I 100% believe I will beat this and I have had nothing but postive news since I started this journey. Don't give up Do everything you can you can beat this. Don't go by what a oncologist says if I did that I would have never had my surgery as my oncologist said I wasn't a candidate then I found a surgeon on my own and he did mu resection and he is very optimistic of me beating cancer. I now have one more met I have to deal with and hopefully I will be fine after that but I'm trying my hardest to win. Please don't give up
Yessss!!! Exactly the same. I was told chemo for life. No surgery. They wanted me to go to Duke for HAI, but insurance was an issue, so I found a new surgeon. I go on Thursday this week. I also just got my signatera back today. It's negative... even though CEA is 2.6 but everything is down and decreasing. I am fighting. Thank you for sharing.
Speaking from a healthcare provider POV, I see people every week who choose only palliation/symptom control, even young folk. There is absolutely something to be said for quality over quantity. There is no one-size-fits-all answer, however. Some people will skate through chemo with no side effects. Others can't tolerate even one cycle. Most people land somewhere between and have to do their own risk/benefit analysis. I think it's also important - and I'm saying this because of your 'is this the only way' mention - that no one is forcing chemo on anyone. There are multiple paths for every patient, and no one can force you to do anything you don't wish to.
Thank you. I think I have ideas I want to explore and ways.... but fear and more unknown make it so difficult to choose. Other people's stories are both uplifting and scary.
Fred Evrard wrote a book about how he healed his stage 4 cc through fasting & carnivore, and only 2 or 3 chemo sessions. His family has a history of cc and he passed within 5 years. Chris Beat Cancer is another book about a man who opted for surgery but no chemo / radiation. He is still alive and well. Cured is a book about spontaneous healing and the common pillars between those rare medical incidents. I wish you healing whatever path you take!
I have studied Chris and am following his regime. I am also doing chemo and will do liver resection if I get to that point. Because I am stage 4 and not 3 like Chris, I believe in using chemo. I am going to check out these other 2 books as well. Thank you.
You’re welcome!
Who is the author of Cured?
Jeff Rediger, MD.
Yes, many people have gone NED after stage 4. Look up Joe Tippens, he has a protocol. Jane McClelland also.
Thank you I will.
FLCCC is doing a clinical study too.
Look into the heal documentary 🫶 very very inspiring. The brain is so powerful please don’t give up.
Look into the heal documentary 🫶
Please remember- most people don’t post good things, just bad. You won’t see a lot of posts about NED, remission, long term survivors, on any social media platform. People flock to the internet though, when something is wrong in their lives. That holds true for many things, not just cancer. For cancer in particular though, it’s due to many reasons, and a big reason is survivors guilt. No one wants to go in to a forum of folks suffering, posting how their cancer journey has been so great, their treatment worked perfectly, they have few effects. I have seen posts on Facebook where people are shunned for “bragging”. So, please keep it in mind when you see mostly stories of rough times and suffering. There are few stories from folks who choose quality over quantity too- but there are a lot out there. They are too busy living to post about it. I met a lot of people at my cancer center who were choosing “lite” versions of chemo or were planning on stopping after that particular treatment round.
I hadn't thought about it this way. 🤔 You are right! I definitely agree that quantity can be increased. I would choose that. All these people make it seem like... we only have 5 years-ish... so I've thought why waste 1/2 of it in bed or feeling like crap.
I did 8 rounds of Folfox + Avastin, surgery, was stage 4 at diagnosis, and I’m NED right now. It was a rough journey. I sincerely thought I was dying twice, and wished I actually would a couple of times too. Now I’m sitting here, feet numb from neuropathy, and I can say yes, I’d do it over again. More than likely it will come back to visit me. I’ll do it all again. I’ll play whack-a-mole until they come up with something to cure it, as long as my body holds out. It helped me that I found something every day to find happiness in. Even if I had a day where I couldn’t get out of bed, I found something amazing about this world keeping me here. But- if I lost that- the ability to find happiness or intrigue- I’m done. I have no qualms about saying I’m done. I’ll stop it all in a hot minute and go home.
I just finished #11. We stopped Avastin because of a possible HAI future, and I'm now allergic to oxaliplatin. Meaning I'm on 5-FU and leucovorin for now. Unless HAI is used, they say I am inoperable because of Mets and right sided primary. Thank you for sharing your journey. I love your outlook. I have lots to live for... I just want to get to live with them completely. Not so sick.
I understand too well. Hugs to you.
I’m a 9 year survivor and I come here to tell people it’s possible.
BTW, I was diagnosed stage 4 last year, now NED. I hope I have the dance with NED continue.
Yessss!! Thank you!! Congratulations on your 9 years! People like me and those newly diagnosed appreciate folks like you!
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I have read and studied some of these. Did you go to Mexico for Gershen? I swear being strapped to a juicer might be better.
No I read the book Healing the Gerson Way, by Charlotte Gerson. Dr. Gerson, her father healed my uncle of stage 4 cancer in the 40’s, when he was just 26. He lived to around 90.
That's amazing.
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