1 Year Update

hopefuldreams
hopefuldreams CSN Member Posts: 11 Member
edited October 2023 in Colorectal Cancer #1

Good morning everyone,

I wanted to post a status update as I hit my 1-year post diagnosis for stage IV rectal cancer. I just finished my 23rd treatment with Folfiri and Cetuximab. A couple weeks ago I had a PET scan and consults for liver resection and even liver transplant. Unfortunately, the pet shows some spots still in my lungs, so surgeries are off the table for now, but I am still in a very stable disease state currently.


It's been a long hard year, but my mental/emotional health has made a decent improvement in the past couple weeks after being in a big slump for a while. I think I am finally accepting that I will be on chemo for a long time or for the rest of my life and that is sad, but it is the reality, and I can learn to adapt. At the end of the day the side effects from chemo are rough, but I still feel much better than I did a year ago with the disease running rampant through my body. Thank you everyone for your support and stories about getting through this terrible disease your stories have really helped me in so many ways.


Much Love,


Ben

Comments

  • SandiaBuddy
    SandiaBuddy CSN Member Posts: 1,381 Member
    #2

    It sounds like it's been a rough road for you, but it is good to hear that you are still moving forward. Every day is precious. Thank you for the update.

  • Canadian Sandy
    Canadian Sandy CSN Member Posts: 784 Member
    edited September 2023 #3

    Thank you for the update. I love your optimistic outlook and hope the road ahead is something you can cope with. Keep posting new updates as were always interested in everyone’s journey.

    This site has been so helpful in many ways that I also would have been lost without it. Take care Ben.

  • hopefuldreams
    hopefuldreams CSN Member Posts: 11 Member
    #4
    https://csn.cancer.org/discussion/comment/1708869#Comment_1708869

    Thank you much, optimism and gratefulness has been helpful with coping through this. I agree with how helpful this site is, the strength of others battling cancer is truly inspiring.


    You take care as well and thank you for your reply!

  • SnapDragon2
    SnapDragon2 CSN Member Posts: 722 Member
    #5

    Just throwing this out there...

    Research Rolles Laser Surgery, Coswig Germany and maybe consult with them after they review all your history. Ask what they need to see to be a candidate for lung met surgery.

  • hopefuldreams
    hopefuldreams CSN Member Posts: 11 Member
    #6
    https://csn.cancer.org/discussion/comment/1709448#Comment_1709448

    Awesome thank you for the information I will check them out. I am also hopeful for this new treatment called dostarlimab. Looks like it is currently approved for uterine cancer but is looking effective in trials for certain colorectal cancers.

  • SnapDragon2
    SnapDragon2 CSN Member Posts: 722 Member
    #7

    I had 4 potential lung mets on scans. Not definitive but I knew they were based on bloodwork. No reasonable options here in the states. One met was sitting on a bronchial tube, another one was also in a hard to get location based on techniques used here in the states. So, basicly I was screwed with what is available here. Reached out to The lung hospital in Coswig Germany and they said YES they could do surgery. I went, surgery was a success. Best decision I ever made!

  • hopefuldreams
    hopefuldreams CSN Member Posts: 11 Member
    #8
    https://csn.cancer.org/discussion/comment/1709462#Comment_1709462

    That's awesome to hear, how are you doing now and what was your initial diagnosis/treatment plan before surgery?

  • SnapDragon2
    SnapDragon2 CSN Member Posts: 722 Member
    #9

    IIIC rectal, 1/20 + lymph nodes. kRAS. CEA was 82.6 at dx. I was really a IV from the get go just not definitive on scans.

    Folfox was a fail so stopped at 7th infusion and went my seperate ways with SOC.

    Mets showed up in lungs. Back and forth with surgeons and scans. I did not agree with any options laid on the table of all 4 consults. Went to Germany instead.

  • hopefuldreams
    hopefuldreams CSN Member Posts: 11 Member
    #10
    https://csn.cancer.org/discussion/comment/1709465#Comment_1709465

    That's wild, how was your liver? My docs are most concerned with my liver and really haven't talked with me a ton about the lung mets. Sorry about all the questions just love hearing others stories.

  • SnapDragon2
    SnapDragon2 CSN Member Posts: 722 Member
    #11

    Liver is clear.

  • SnapDragon2
    SnapDragon2 CSN Member Posts: 722 Member
    #12

    I believe low toxic as possible proven chemo effacicy should be the base for treatment along with alt therapy for immune building and cancer pathway kill, cancer stem cells ect. Doing just chemo has only one target when there are many.

  • SnapDragon2
    SnapDragon2 CSN Member Posts: 722 Member
    #13

    This is a geat site and another one is colontalk. Lots of good info there also.

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