Stage IV sigmoid colon ca metastasis to the Liver
Good afternoon all. I was told this is the best forum to post on. I am a 45 year old mother of 3 beautiful children. I was incidentally diagnosed on December 26, 2021 with an 8cm mass to the sigmoid colon right by the top of the rectum. On CT scan they also see multiple masses on the Liver the largest measuring 5cm. Biopsy of both confirmed colon primary. My CEA was only 6.6 which was surprising. Recent blood workup shows CEA has increased to 20, is this because chemo is working or is it getting worse?
I am going for my second dose of folfox tomorrow and they are adding Panitumumab to my treatment. Has anyone had this combination? Has anyone experienced continued growth/spread after they were already having treatments? I am very positive and strong, I believe I can do this and have a great support system. At the same time I am scared to death of the possibilities. It is comforting to hear all the survivor stories but at the same time depressing to hear of those who fought so hard to survive and didn't make it. Any words of advice or encouragement are greatly appreciated!!
Comments
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I have been lurking here for a while but posting mainly on Colontown. My wife was diagnosed with stage 4 in July 2021. But this sounds a bit like her case. Her primary tumor is in her sigmoid, and had liver mets and lymph nodes. She is being treated at Hopkins and did FOLFOXIRI before her liver resection that she had early this month (Jan 2022) with additional chemo planned for March/April before hopefully a June colon resection.
You’re still at the beginning of this and have lots of options. First, you need to see what’s happening beyond CEA. That’s not always an accurate measurement. One of those options might be getting a second opinion if your onc team isn’t moving in a direction that you want.
Everybody’s cancer journey is different. Have you had genomic testing to see what your biomarkers are? Are there plans for surgery or other methods for the liver? Knowing your biomarkers will help guide you and your onc.
My wife has been doing Signetera testing for biomarkers and to check tumor DNA and hasn’t been tested as often for CEA (she hasn’t tested it since liver resection but it started at 6000, then 600). I think I will ask about Guardant 360 testing too for her, to see if there any additional mutations for immunotherapy for the future.
After 2-4 treatments, your onc will likely have you do scans and check your CEA again to check if the chemo is doing its thing.
Sending healing thoughts.
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CEA remains the big mystery on the board. One person said it best perhaps, if you have been NED during your treatment or oligo metastatic you will probably see a very low CEA number for a long time, and it may increase to the #s your seeing. You may add a couple of tumors on scans with a low number, or like some, add nothing with a fast-rising number. We don't know what it means, doctors aren't clear on what it means. They go with scans on diagnosis.
You are very early in your treatment, too early to really worry I think. Focus on making the nasty side-effects disappear and having a good quality of life. The treatment is what it is. You might not react strongly to this chemo but another one may show strong anti-tumor growth or shrink them. They are adding a targeting drug because they believe it will help, these drugs seem to be what docs have faith in at the moment.
Good luck.
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I am 58 and was diagnosed with Stage 4 colon cancer in September. My CEA was 180 when I saw the first oncologist. I had a liver biopsy as well showing 2 lesions at 3.4cm and 2.4cm. That Dr. told me I had 2yrs to live, my cancer was incurable and then walked out the door and let the nurse handle the rest. My lower jaw was on the floor. I couldn't believe what I just heard. I went home trying to process this information. A couple of days past and I knew I had to see another DR. I got a referral from another Doctor I trusted and the experience was like night and day. He did a PET scan right away and the cancer was only in my sigmoid colon and liver. The first Doctor assumed since the CEA was so high I had cancer everywhere , but that wasn’t the case. My new oncologist told me this was curable , the CEA is not reliable and my first treatment started with Oxaliplatin, Vectibix and Fluoracil. I could only tolerate Oxaliplatin for 2 treatments, but after treatment 3, we did a CT Scan and the lesions reduced from 3.4 to 2.5 and the second one from 2.4 to 1.3. Seeing a surgeon on Monday for surgery on the Liver and will go from there.
Hearing you have Cancer is just devastation! I am so sorry you have been diagnosed with this terrible disease. Stay strong, keep a positive attitude. Tell yourself everyday you will be cancer free! My 6yr old grandson lives with me and he is just the love of my life. I can't even imagine not being here to watch him grow up. So I can definitely relate to your situation .
When I first got my diagnosis I cried for 2 days straight. I needed something to pull me out of the darkness. I found some great visual meditions on YouTube and listens to them every night before bed. It gave me the hope I needed and it really made me feel so much better.
I am sending good vibes your way and pray that you will be healed!!
Jacqi
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Welcome, my sigmoid colon cancer was 3b, but 3 masses popped up in my liver after Folfox, so the onc decided they were likely already there, even though it took two years to ID them proper. My CEA was 73 to start and didn't stay below 5 until after the second liver resection a couple years after the first. It was a rough start, but a marathon over time that changed me in ways I didn't see coming, some good and bad. But I'm here and NED, 7 1/2 ears after the last liver operation, and 14 1/2 total since diagnosis. I'll never ask what some white coat thinks is my time left on this planet, and they'd be wise not to try and tell me. Good luck with your treatments and again, welcome................................Dave
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