Bummed: Colon cancer has metastasized to my liver!

Posted by tinad @tinad, Jul 6, 2020

I’ve been cancer free for 4 years and now it has metastasized to my liver!!! Ugh! I’ve had the liver resection, stomach resection and gallbladder removed only to get news halfway through chemo (2nd time around) that there may be disease at the liver surgical site and chemo is not working. My blood work does not indicate any tumor activity but I’m scared and anxious that the cancer has in fact survived the chemo blast. I’m active, I eat well, I’m not over weight, I don’t have a family history of colon cancer, I haven’t had any polyps since the original one went haywire...I feel defeated by something that was never on my radar to being with! I want options.

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I’m now on Lonsurf since Folfox and Folfury did not stop or slow disease progression. The last 2 scans have shown disease is stable and no new disease but my oncologist says to be guarded about what scans indicate as the type of tumors could be hard to detect through imaging. I’ve also been taking Turmeric supplements and am choosing to believe that those are helping. I have scans this week so we’ll see if there’s any change.

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Stable scans sounds good. I believe you mentioned the disease is inoperable, are all the interventional radiology approaches (ablation, freezing) also out?. I'm sorry if that is the case. Are you tolerating Lonsurf well?

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@marshmallowjones

Hi I'm 2 months post liver resection surgery and trying to make sure I've researched all my options. 3C Cancer 2018 1.Colon Resection, 2. Folfox treatment, disease free until Sep20 (which is/was encouraging to me). 3. We tried an ablation and it came back. So 4. the big Liver Section surgery was rough. I am very hung up on my 5 year survival rate. I'm 53. No interesting markers, just TP53 which is common. Chemo is not being recommended - which I am OK with. Chemo was very difficult for me. So I'm told we wait....and we hope for 6 months clear and 2 months clear and at that point I could exhale. It's a 60% chance of returning apparently which stinks. Any advice? The NSK tumor test was send out but I don't understand the real value of that if doing a 2nd resection is what is recommended (if operable) Thank you for reading this

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@marshmallowjones I wanted to say hello. I don't have cancer and I can't share any medical advice, but I had an aunt with a bad lymphatic cancer and she should have only lived a year, but she got much more than that, somewhere around 10 years. She had a positive attitude that she was going to beat cancer. She had quality of life. Her first husband had passed away, and she got married again. I made her wedding cake. She believed with every part of her being that she could do it and she taught me a lesson about the power patients have over their health and healing if they embrace it, make intelligent choices, and believe in a positive outcome.

Have you heard of the book called "The Last Lecture" by Randy Pausch? He had terminal cancer and wrote this book about his journey. He also believed in his fight and got more years than his doctors promised. The premise of the book came from a college writing assignment to write a "last lecture" to say what is important to you and what has meaning to your life and to write it as if you were dying. His honesty about living is very uplifting.

I hope some other patients can share some relevant experience with you.

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@marshmallowjones

Hi I'm 2 months post liver resection surgery and trying to make sure I've researched all my options. 3C Cancer 2018 1.Colon Resection, 2. Folfox treatment, disease free until Sep20 (which is/was encouraging to me). 3. We tried an ablation and it came back. So 4. the big Liver Section surgery was rough. I am very hung up on my 5 year survival rate. I'm 53. No interesting markers, just TP53 which is common. Chemo is not being recommended - which I am OK with. Chemo was very difficult for me. So I'm told we wait....and we hope for 6 months clear and 2 months clear and at that point I could exhale. It's a 60% chance of returning apparently which stinks. Any advice? The NSK tumor test was send out but I don't understand the real value of that if doing a 2nd resection is what is recommended (if operable) Thank you for reading this

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Hi @marshmallowjones, Thanks for sharing your story and what you are going through. You will notice that I moved your post to the conversation that you found as well about the same discussion. This way, the members in this group can see your experience and connect with you.
Can you give any detail about your resection being so hard?

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@jenniferhunter

@marshmallowjones I wanted to say hello. I don't have cancer and I can't share any medical advice, but I had an aunt with a bad lymphatic cancer and she should have only lived a year, but she got much more than that, somewhere around 10 years. She had a positive attitude that she was going to beat cancer. She had quality of life. Her first husband had passed away, and she got married again. I made her wedding cake. She believed with every part of her being that she could do it and she taught me a lesson about the power patients have over their health and healing if they embrace it, make intelligent choices, and believe in a positive outcome.

Have you heard of the book called "The Last Lecture" by Randy Pausch? He had terminal cancer and wrote this book about his journey. He also believed in his fight and got more years than his doctors promised. The premise of the book came from a college writing assignment to write a "last lecture" to say what is important to you and what has meaning to your life and to write it as if you were dying. His honesty about living is very uplifting.

I hope some other patients can share some relevant experience with you.

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awww thank you - I do need to get my hands on uplifting stories like yours and the book suggestion. I'm a pragmatic accountant so I see statistics. I do try to visualize every cell being in my abdomen as being healthy. See it Believe it type of thing.

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@amandaa

Hi @marshmallowjones, Thanks for sharing your story and what you are going through. You will notice that I moved your post to the conversation that you found as well about the same discussion. This way, the members in this group can see your experience and connect with you.
Can you give any detail about your resection being so hard?

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@amandaburnett Hi Amanda I hope I'm doing this post more correctly. The liver resection is a massive surgery for anyone to undergo and comes with risks. I was under 4 1/2 hours, it was not laparoscopic bc the surgeon needed to get to a difficult area by blood supply. He described it as "complicated but successful." The surgical drain caused me severe discomfort. It hurt a lot even while in the hospital and I thought that it was normal where is was not. I lasted a week at home with it (in tears with pain on several occasions) and went to the ER to have it taken out. The opinion was that it had to have been touching nerves. In my instance 60% of my liver (the right side is larger) and gall bladder were removed. There was definitely pain and fatigue. Tomorrow is post-op 2 months officially and I still need to be careful about doing too much or lifting too much. Do I need to do @theperson each time?

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@marshmallowjones

@amandaburnett Hi Amanda I hope I'm doing this post more correctly. The liver resection is a massive surgery for anyone to undergo and comes with risks. I was under 4 1/2 hours, it was not laparoscopic bc the surgeon needed to get to a difficult area by blood supply. He described it as "complicated but successful." The surgical drain caused me severe discomfort. It hurt a lot even while in the hospital and I thought that it was normal where is was not. I lasted a week at home with it (in tears with pain on several occasions) and went to the ER to have it taken out. The opinion was that it had to have been touching nerves. In my instance 60% of my liver (the right side is larger) and gall bladder were removed. There was definitely pain and fatigue. Tomorrow is post-op 2 months officially and I still need to be careful about doing too much or lifting too much. Do I need to do @theperson each time?

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Hi Marshmellowjones, you do not need to @mention a member in your posts unless you want to ensure that a specific person gets an email notification of your reply.

You're right that a liver resection is a complicated surgery. Being only 2 months out, I can imagine you're still having to be cautious about lifting and exerting yourself. I assume you're also not yet able to drive. Any sudden stops with a seatbelt on would not be good. Are you able to add a little more activity each day - a few more steps - to help with fatigue?

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I feel so sorry for you. 🙏🏼 I am going through liver cancer right now with the colon . It started in the colon snd mestasized into the liver by the time they caught it . I have gone through chemo and a illosophy . It is growing n the liver . They told us my livrrr looks like cottage cheese . I have been holding my weight though and go for fluids 6 days a week .
Prsyers that everything turns out in your favor . 🙏🏼 Good Luck

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My husband has stage 4 liver metastasis from colon cancer. Has been on 5 Fu with bev irinoteczn, xeloda, and showed liver metastasis reducing slightly. Then off for a moth and showed increase, diagnosed with hi pylori with antibiotics. In constant pain given morfin and we are going in for the celiac plexus block which hopefully will last .also had Y90 on left lobe snd next week for right lobe. Taking lonsurf. But he has lost a lot of weight 10 kilos and now staring a bit of eating hope these are the right treatments. Also am tired of taking to nurse practioners so next week am asking we speak to an MD from now on. Any advice for getting weight on and prognosis of therapy indicated.

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@yannis

My husband has stage 4 liver metastasis from colon cancer. Has been on 5 Fu with bev irinoteczn, xeloda, and showed liver metastasis reducing slightly. Then off for a moth and showed increase, diagnosed with hi pylori with antibiotics. In constant pain given morfin and we are going in for the celiac plexus block which hopefully will last .also had Y90 on left lobe snd next week for right lobe. Taking lonsurf. But he has lost a lot of weight 10 kilos and now staring a bit of eating hope these are the right treatments. Also am tired of taking to nurse practioners so next week am asking we speak to an MD from now on. Any advice for getting weight on and prognosis of therapy indicated.

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I am also stage IV colon. And all other options have been exhausted, doc recommends lonsurf, what is your experience withit?

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