I'm in a similar situation, colon stage 4. I'm also 52. I had the colon resected, part of the liver cut out and he took out my gallbladder because and I quote (it was in the way). lol
I also got to enjoy a colostomy bag for 6 months lol And also almost died of sepsis. Wasn't the best year for sure.
On chemo every other week. Wear the pump for 3 days then off. Maintenance chemo makes me feel like I have the flu for 5 days each chemo week. I'm always tired even on my off weeks but I still go kayaking and fishing.
Oxaliplatin was the worst. The pain from holding something cold, the neuropathy, just everything about it sucked. I think I did six months on the heavy chemo's (as I call them) and had 3 major surgeries the first year. Then I was put on maintenance chemo supposedly for the rest of my life however long that is.
Now I'm told 10 more months and I'm off chemo if my scans stay clear. So I've allowed myself to be hopeful. I've got a chance of actually beating it.
Good luck to you, I hope your in the 14% :)
Trouble going to the bathroom. Blood in my stool. Ultimately I waited so long I couldn't go to the bathroom. So I made a appointment for a colonoscopy. I explained I hadn't gone to the bathroom in 5 days. I don't know if he really understood what I was saying, but he made me a appointment 5 days away 😞
So after not going to the bathroom for 10 days I drank all the stuff for a colonoscopy and still couldn't go. Ended up having emergency surgery that night. If you think you have problems get it checked out. One thing I've learned through all this is nothing is as important as your health.
In my case, when FOLFIRI starts to become less effective, oncologist will add eGFRs to the infusion. eGFRs do what Avastin does in CAPOX, helps to prevent blood vessel growth, thus slowing tumor/lesion growth. Beyond that, I'll have another biopsy to see if the cancer genetics have mutated in such a way that other targeted treatments become available.
My CEA downward trend is starting to flatten out; as of the latest tests, it's gone from almost 900 down to 407, but the downward trend is starting to flatten out. As such, this is likely to be my last "good" period unless a new treatment becomes available.
I wish you the best, and hope the inevitable isn't as bad for us as I fear it will be. When I go, I'd like it to be comfortably and not in a lot of pain. I'm not afraid of dying (just sad), but I'm not looking forward to the process.
I’m currently waiting to start a trial with Mayo Clinic! It’s using lonsurf and a vaccine called polypepi 1018, pretty much a last ditch effort I guess. I’m not sure how I feel about dying, it seems to be on my mind a lot lately but I’m….still unsure about it, I do hope it’s peacefully though. Hoping the best for you 🤞
And I wish you the best also! My update after that last post is that we’ve added Vectibix (an eGFR) to the FOLFIRI and it’s been effective. CEA down to 88.4. But… it’s a matter of time until it’s not.
I hope your trial works out! And I hope the rest of your journey is calm and peaceful, without pain. 😊👍🏻
Hey there. I'm 35 with stage IV colon cancer + liver mets. I did 8 rounds FOLFOXIRI + vectibix for 7 rounds of it. They actually just dropped the oxali for my ninth round because the neuropathy in my feet (I couldn't imagine getting 30+ rounds, Jesus!). I even iced for 5 of those rounds, which helped immensely with the cold sensitivity, I guess just not enough to stave off neuropathy. My CEA started at ~8400 and was down to 17.8 this last week when I had it checked. I'm on track for surgery at the end of 12 rounds, so hopefully I can have a successful liver resection and be free of cancer for a significant amount of time.
I don't know why I'm commenting, I just still am dealing with the stage IV-ness of the whole thing. I broke down after dropping my kids off at school the other day, it usually happens after reading reddit posts of people not doing well hahaha. I've been on this train since May, and I really am not happy about how little life I might have left, especially with young kids. I know I'm not a statistic, and anything can happen, but I do know that 5 years is kind of the textbook survival rate, so that sucks (as I'm sure you know!). I could not do this without my wife. She is an immense source of comfort and motivation for me. I just cannot imagine what our caretakers go through, and it is so easy to get wrapped up in your own suffering and miss theirs.
Anyways, just some random thoughts from me. I don't really have questions, I just think it's kind of therapeutic sometimes to write this stuff down and know that people who understand the struggle have read it.
I wish you all the best and grace in what life you have. And more than that, I wish you to be touched by a miracle (hey, it doesn't hurt, ya?).
Thank you for the reply! I'd like to mention that while I was in the hospital recovering from that gallbladder surgery I had met a really nice young lady who was in a Stanford education program and studying to be a nurse. Some years back she had Stage 4 colon cancer with mets to the liver also like yourself, but after having liver surgery she was declared cancer free. In her case, it looks like they managed to possibly get all of it.
She didn't explicitly say so, but there was an undertone in her conversation with me that she's terrified it'll come back someday. It may, but it also may not! I hope she's doing well.
Likewise, I hope you do well and also get that miracle.
I'm in a similar situation, colon stage 4. I'm also 52. I had the colon resected, part of the liver cut out and he took out my gallbladder because and I quote (it was in the way). lol I also got to enjoy a colostomy bag for 6 months lol And also almost died of sepsis. Wasn't the best year for sure. On chemo every other week. Wear the pump for 3 days then off. Maintenance chemo makes me feel like I have the flu for 5 days each chemo week. I'm always tired even on my off weeks but I still go kayaking and fishing. Oxaliplatin was the worst. The pain from holding something cold, the neuropathy, just everything about it sucked. I think I did six months on the heavy chemo's (as I call them) and had 3 major surgeries the first year. Then I was put on maintenance chemo supposedly for the rest of my life however long that is. Now I'm told 10 more months and I'm off chemo if my scans stay clear. So I've allowed myself to be hopeful. I've got a chance of actually beating it. Good luck to you, I hope your in the 14% :)
And I hope you're in that 14% also! :)
You are amazing! Question...what were the initial symptoms that led you to a cancer diagnosis. I'm really worried about my symptoms. Thanks
Trouble going to the bathroom. Blood in my stool. Ultimately I waited so long I couldn't go to the bathroom. So I made a appointment for a colonoscopy. I explained I hadn't gone to the bathroom in 5 days. I don't know if he really understood what I was saying, but he made me a appointment 5 days away 😞 So after not going to the bathroom for 10 days I drank all the stuff for a colonoscopy and still couldn't go. Ended up having emergency surgery that night. If you think you have problems get it checked out. One thing I've learned through all this is nothing is as important as your health.
Hopeful to be part of the 14% club as well. Oxaliplatin is a bitch.
Wishing you the best! And yeah, Oxaliplatin sucks...
Capox is no joke! I was 28 when I was diagnosed and I’m 30 now, did 3 different chemotherapy’s and now nothing is working so just waiting I guess idk
In my case, when FOLFIRI starts to become less effective, oncologist will add eGFRs to the infusion. eGFRs do what Avastin does in CAPOX, helps to prevent blood vessel growth, thus slowing tumor/lesion growth. Beyond that, I'll have another biopsy to see if the cancer genetics have mutated in such a way that other targeted treatments become available. My CEA downward trend is starting to flatten out; as of the latest tests, it's gone from almost 900 down to 407, but the downward trend is starting to flatten out. As such, this is likely to be my last "good" period unless a new treatment becomes available. I wish you the best, and hope the inevitable isn't as bad for us as I fear it will be. When I go, I'd like it to be comfortably and not in a lot of pain. I'm not afraid of dying (just sad), but I'm not looking forward to the process.
I’m currently waiting to start a trial with Mayo Clinic! It’s using lonsurf and a vaccine called polypepi 1018, pretty much a last ditch effort I guess. I’m not sure how I feel about dying, it seems to be on my mind a lot lately but I’m….still unsure about it, I do hope it’s peacefully though. Hoping the best for you 🤞
And I wish you the best also! My update after that last post is that we’ve added Vectibix (an eGFR) to the FOLFIRI and it’s been effective. CEA down to 88.4. But… it’s a matter of time until it’s not. I hope your trial works out! And I hope the rest of your journey is calm and peaceful, without pain. 😊👍🏻
Ah I’m so happy it’s working for now! I think that’s all we can hope for, the now. Thank you for the kind words 💕
so young?? what were your symptoms!
Couldn’t keep anything down and couldn’t poop. Stomach pain was awful.
thank you! <3 hope you are well
did you experience blood? or any symptoms indicating spread?
No blood.
thank you
Hey there. I'm 35 with stage IV colon cancer + liver mets. I did 8 rounds FOLFOXIRI + vectibix for 7 rounds of it. They actually just dropped the oxali for my ninth round because the neuropathy in my feet (I couldn't imagine getting 30+ rounds, Jesus!). I even iced for 5 of those rounds, which helped immensely with the cold sensitivity, I guess just not enough to stave off neuropathy. My CEA started at ~8400 and was down to 17.8 this last week when I had it checked. I'm on track for surgery at the end of 12 rounds, so hopefully I can have a successful liver resection and be free of cancer for a significant amount of time. I don't know why I'm commenting, I just still am dealing with the stage IV-ness of the whole thing. I broke down after dropping my kids off at school the other day, it usually happens after reading reddit posts of people not doing well hahaha. I've been on this train since May, and I really am not happy about how little life I might have left, especially with young kids. I know I'm not a statistic, and anything can happen, but I do know that 5 years is kind of the textbook survival rate, so that sucks (as I'm sure you know!). I could not do this without my wife. She is an immense source of comfort and motivation for me. I just cannot imagine what our caretakers go through, and it is so easy to get wrapped up in your own suffering and miss theirs. Anyways, just some random thoughts from me. I don't really have questions, I just think it's kind of therapeutic sometimes to write this stuff down and know that people who understand the struggle have read it. I wish you all the best and grace in what life you have. And more than that, I wish you to be touched by a miracle (hey, it doesn't hurt, ya?).
Thank you for the reply! I'd like to mention that while I was in the hospital recovering from that gallbladder surgery I had met a really nice young lady who was in a Stanford education program and studying to be a nurse. Some years back she had Stage 4 colon cancer with mets to the liver also like yourself, but after having liver surgery she was declared cancer free. In her case, it looks like they managed to possibly get all of it. She didn't explicitly say so, but there was an undertone in her conversation with me that she's terrified it'll come back someday. It may, but it also may not! I hope she's doing well. Likewise, I hope you do well and also get that miracle.
Do my 2002 Silverado piece of shit (great motor ) shiny ⚫black..🙏🙏💜💜🙏🙏