Need advice on Colon Cancer Stage 4

I had a tumor removed on my right side at the end of colon.  19 of 31 lymph nodes positive for metastatic carcinoma.  Margins are negative for involvement.  AJCC stage pT4a N2b.  I had a CT scan and the results were very small spots on the lungs...the doctor wasn‘t sure if cancerious but but his professional opinion was positive.  I went from stage 3c to 4, because 9 spots on outside lining of the lungs. I was told chemo every two weeks (all day).  I will be getting a second opinion Fri. 2 Feb 2018, Siteman Cancer Center, St. Louis, MO.  Seeking people who have the same problem....what’s expected or any information is welcome.  Thanks

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Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Sorry

    I'm sorry for your diagnosis and also that I'm not able to help you.  It is a good thing that you are getting a second opinion.  There are others on this board that have had Stage 4 and are still posting on this board years later.  Wishing you well and if you need questions answered this is definitely the board to be on.  We are all on here to help and support you.

    Kim

  • Volrecruiter
    Volrecruiter Member Posts: 22
    Thank you Kim....

    for replying.  Ed

  • Woodytele
    Woodytele Member Posts: 163
    Similar situation

    Stage 4, Mets to liver, back, lungs.  This cancer thing is tough to predict, everyone responds differently, so it’s tough to predict what will happen. I was on chemo every two weeks initially, did FOLFoxFiri , ”kitchen sink”.  they usually only do this if they think you can handle it.  They may do another chemo cocktail, Folfox, folfiri, depends on what is going on. Your dr. Will explain it all.  It’s definitely not easy, but we all do it, and you can too!

  • Volrecruiter
    Volrecruiter Member Posts: 22
    Thank..

    you Woodytele.  When and how long have had cancer? Ed

  • Woodytele
    Woodytele Member Posts: 163

    Thank..

    you Woodytele.  When and how long have had cancer? Ed

    Started treatment 1 year ago, 44 years old

    been a tough ride. 

  • Phil64
    Phil64 Member Posts: 838
    I was diagnosed as Stage IV

    I was diagnosed as Stage IV colon cancer in April 2012. Just six months earlier diagnosed with Stage I testicular cancer. Surgery and radiation for testicular cancer followed by 53 rounds of chemo and six surgeries for colon cancer. I managed to work through this all and am here today, with no evidence of disease (NED). There were a couple bleak times where I was “not a candidate“ for surgery. I too had the FolFoxFiri and Avastin (kitchen sink). However, Erbitux proved most effective in my case.

    The best advice I can pass along was given to me by someone else on this forum...

    Fighting Cancer is like running a marathon. Pace is important. It’s not a sprint and your done. So manage your expectations appropriately. Also very importan. Determination, commitment, pushing through the pain... Never give up.

    i will add my own advice as well. Find an oncologist and cancer team that you TRUST. For me it boiled down to some common sense and a lot of gut feel. I ended up choosing University of Michigan Health Care. Common sense was that they processed a LOT of colorectal cancer patients. Gut feel was that my doctor knew what he was talking about. 

    Also plan to learn. Bring a notebook. Use this forum. Others have gone through what you will be going through. KNOW that even Stage IV colorectal cancer is beatable. 

    And for me my Faith and community of fellow Christians were very helpful in both practical and spiritual ways.

    Another thing that helped me a ton was to openly blog my way through this ordeal. I had a lot of family and friends wanting updates so I decided to share openly. You can read my entire story at:

    http://pscamihorn.me 

    Wishing you the very best! 

  • Volrecruiter
    Volrecruiter Member Posts: 22
    Update..2 Feb 18

    They will be giving me the following for chemo:  Fluorouracil (adrucil or 5-fluorourcil-5-FU, Oxaliplatin-Eloxatin and Leucovorin). Before chemo I will have a PET scan to see if the cancer has spread besides my lungs (still not sure about the lungs-most likely).  Any info about these drugs would be appreciated.  Ed

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    Stay strong

    You (we) are challenged by cancer and I'm sorry that you're going through this now.   I underwent 5-Fu with Oxaliplatin for 3 cycles.  Didn't have any problem at that.  For convenience, I shifted to the oral form of 5-Fu, Xeloda.  The oxaliplatin's dose must have been higher because I was knocked down on my 1st infusion.  The succeeding ones were not walks in the park, but it was all tolerable.  Thankfully, didn't have any nausea or neuropathy.  Only had diarrhea which I didn't really attribute to the chemo but most likely because of something I ate.  

    I wish you well during and after your treatments.  What I would usually (try) to say to myself is I am stronger than the cancer, so I'll beat it.  There are times when I feel like I'm losing but thankfully I'm still alive today.  Not sure what happens tomorrow, or what happens to my suspicious lung nodule but I'll keep praying for me to beat this.    You can do it! One day at a time.  Your mind is one strong weapon you can have to beat this.  So try to stay positive and tell yourself you can beat this.

  • Volrecruiter
    Volrecruiter Member Posts: 22
    Thanks plsletitrain..

    my concern is the PET scan, hopefully the cancer hasn’t spread.  Ed

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    Yeah, the PET scan..

    I remember I had my first PET scan last december and I was literally trembling and shaking in fear when I was about to get the results.  I didn't have nausea while on chemo but when I was on my way to the PET center I felt like throwing up, I felt fever-ish, I felt like I can't walk.  Really.  I understand how you feel and I wish I can do something to ease the worry but all I can say is, let's face this.  This is part of what we have now, we gotta do what we gotta do.  Praying for good results on your scan.

  • Canadian Sandy
    Canadian Sandy Member Posts: 725 Member
    edited February 2018 #12
    I took an Ativan it really

    I took an Ativan it really helped with the anxiety. 

  • Volrecruiter
    Volrecruiter Member Posts: 22
    edited February 2018 #13
    Thanks plsletitrain and Canadian Sandy....

    the unknown is what causes anxiety for me!

  • SophDan2
    SophDan2 Member Posts: 150

    Update..2 Feb 18

    They will be giving me the following for chemo:  Fluorouracil (adrucil or 5-fluorourcil-5-FU, Oxaliplatin-Eloxatin and Leucovorin). Before chemo I will have a PET scan to see if the cancer has spread besides my lungs (still not sure about the lungs-most likely).  Any info about these drugs would be appreciated.  Ed

    Oxaliplatin is the one to keep your eye on

    Hi Vol,

    I was diagnosed with stage 3C colon cancer last April. I had surgery to remove the cancerous portion of my colon and 25 lymph nodes (6 were cancerous). After this, I had a port placed and began the Folfox 5FU chemo plan. The Oxaliplatin was the only drug, of the three, that I found to generate some weird side affects. The first noticeable side affect is extreme sensitivity to cold. If you were to hold a glass of icewater, where ever the cold touches will create a feeling of receiving an electric shock at the exact location the cold touches you. That feeling went away as soon as my treatment stopped in November. The main side affect to be aware of and dicuss with your doctor, is that Oxaliplatin causes neuropathy. Typically it isn't very noticeable in the earlier treatment stages, however, once you start to feel the tingling fingers and toes you have to be very conscious with how long it last after your day of treatment. I had 12 treatments, every 2 weeks for 48 hours, but I decreased the Oxaliplatin for numbers 10 & 11 and eliminated it all together for number 12. I still have tingling in toes and fingers, but it is tolerable. I can only imagine how bad the neuropathy would have been had I not paid attention for treatments 10,11 & 12. That is why it is so important to share how the side affects feel with your doctor after each treament.

    I hope you found this info helpful.

    Good luck.

  • kyolcu
    kyolcu Member Posts: 111
    edited February 2018 #15
    Phil64 said:

    I was diagnosed as Stage IV

    I was diagnosed as Stage IV colon cancer in April 2012. Just six months earlier diagnosed with Stage I testicular cancer. Surgery and radiation for testicular cancer followed by 53 rounds of chemo and six surgeries for colon cancer. I managed to work through this all and am here today, with no evidence of disease (NED). There were a couple bleak times where I was “not a candidate“ for surgery. I too had the FolFoxFiri and Avastin (kitchen sink). However, Erbitux proved most effective in my case.

    The best advice I can pass along was given to me by someone else on this forum...

    Fighting Cancer is like running a marathon. Pace is important. It’s not a sprint and your done. So manage your expectations appropriately. Also very importan. Determination, commitment, pushing through the pain... Never give up.

    i will add my own advice as well. Find an oncologist and cancer team that you TRUST. For me it boiled down to some common sense and a lot of gut feel. I ended up choosing University of Michigan Health Care. Common sense was that they processed a LOT of colorectal cancer patients. Gut feel was that my doctor knew what he was talking about. 

    Also plan to learn. Bring a notebook. Use this forum. Others have gone through what you will be going through. KNOW that even Stage IV colorectal cancer is beatable. 

    And for me my Faith and community of fellow Christians were very helpful in both practical and spiritual ways.

    Another thing that helped me a ton was to openly blog my way through this ordeal. I had a lot of family and friends wanting updates so I decided to share openly. You can read my entire story at:

    http://pscamihorn.me 

    Wishing you the very best! 

    Hı Phıl64

    I wanted to share my story wıth you as well, ıt looks lıke yours but your progress ıs better. Colon cancer stage 4 wıth mets to lıver and lungs. Inıtal CEA was 17000. I had Avastın, Irınotecan and 5FU for about one and half year(ınıtal dıagnosıs on 2-26-16), 2 months ago I started Irınotecan and Elbıtux and had CEA dropped from 175 to 34 so ıt looks lıke Elbıtux ıs workıng excellent. Inıtıallt I was told that I am not elıgıble for surgery. I hope one day I wıll be elıgıble for surgery lıke you and eventually NED.

  • Volrecruiter
    Volrecruiter Member Posts: 22
    edited February 2018 #16
    Step 1 completed..

    Port was installed today.  Step 2, PET scan this Fri.!  Hoping for positive results!

  • JanJan63
    JanJan63 Member Posts: 2,478
    edited February 2018 #17
    A tip for the port. When they

    A tip for the port. When they go to use it, make sure they wait a minute after they wipe it with a cleaner before they put the line in. If they don't it burns. The needle seems to have the cleaner stick to it and puts it under the skin. I remember mine burning one time for about ten minutes. Usually it was just a few minutes until I figured out why. 

    Good luck with the PET scan!

    Jan

  • Volrecruiter
    Volrecruiter Member Posts: 22
    Thanks Jan...

    for the tip.  Anyother advice is much needed.

  • Tunadog
    Tunadog Member Posts: 235
    Have them spray a local anesthetic..

    Have them spray a local anesthetic around before they stick it in.

    Worked for me. Tip from a lost soul.

  • Volrecruiter
    Volrecruiter Member Posts: 22
    Thanks..

    for the Tunadog.  Ed

  • SophDan2
    SophDan2 Member Posts: 150

    Step 1 completed..

    Port was installed today.  Step 2, PET scan this Fri.!  Hoping for positive results!

    one more tip

    Afrer the treatment is over and they pull the needle from the port put pressure on the spot immediately. In only happend 1 time out of my 12 treatments, but the blood worked it way to the outside skin layer and created a big blood blister that was there for 2 weeks.