NED 5 Years & Counting


I wanted to share my good news for the benefit of the newly diagnosed and terrified out there.  I remember how I felt when I -- in the middle of the night, unable to sleep from worry --  found this website and discovered that it was possible to fight and survive this dreadful disease, even starting from a Stage 4 diagnosis. 

I was diagnosed with Stage 4 rectal cancer in September of 2009.  I was lucky in that my single liver met was operable.  The primary tumor was removed in Jan 2010 and the liver tumor in April 2010, and I had 12 rounds of chemo (folfox regimen) -- some before, most after -- the surgeries.  I also had radiation before.  I spent almost a year in treatment at a NCI cancer center (Duke) with excellent doctors and staff.  I am been NED since, most recently confirmed with a CT scan yesterday.  I'm on a yearly schedule now and won't feel completely out of the woods until I get a couple more good reports under my belt. 

But I've lived to see my 2 daughters graduate from high school and my son graduate from college.  My middle daughter will get her BS in Nursing in May, an aspiration she took on after dressing my surgical wounds.  My youngest will graduate from college next year, and I'm confident I'll be there.  I may even see marriages and grandchildren and an active retirement, all things I despaired of having.

It's tough to read of the struggles and setbacks of wonderful, kind, helpful, and deeply DESERVING members of this community.  I wonder if it's just luck or if there's something we do or don't do that influences which way it goes.  I hesitate to advocate for the things I did that I think might have helped because who knows, and who wants to bear the responsibility if the advice proves worthless, and who wants to ignite a debate about this idea or the other.  But here it is from my experience:  my doctor advised me to take an enteric-coated baby aspirin a day and to exercise vigorously, which I did, almost every day even when all I could manage was 10 minutes or so.  I also read a book, Life Over Cancer, which was challenging going, but here is the gist of what I took away from it:  In addition to traditional therapy, 1) control blood sugar 2) control inflammation and 3) boost immunity. Notice that the doc's advice spoke to 2 of those: exercise for blood sugar and aspirin for inflammation.  I tried my best to follow the book's guidance with regard to diet, nutrition and supplements.

I don't post much, but I lurk and I am pulling for all of us  -- especially you, Craig!  I do know this:  you have to  fight it.  It can be done.                


  • Easyflip
    Easyflip Member Posts: 588 Member
    A very

    Inspiring story. Congratulations on your NED status! My daughter is graduating from college in June and I fully plan on attending, and I want to walk her down the aisle,  and I want to play with a grandchild! Your story gives me hope! Thanks!


  • NewHere
    NewHere Member Posts: 1,427 Member
    That Is Great News

    Tremendous news for sure and reading about your daughters and son.  You will have the marriages, grandchildren and active retirement - you have done so well and I cannot wait to here the news on those.


    Thanks for posting, I am new to this all (No cancer that I knew of in mid January, surgery two weeks ago and meeting with Oncologist next week for chemo) and seeing stories such as yours really helps and is good news indeed.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    Thank you!

    Your story is a real inspiration, and a great lift of spirits; especially this week, with the passing of our dear friend, NanaB. 

    I too had one liver met, and pray that the Ablation took care of it. 

    i also appreciate that you shared what you think has helped you get to this five year stage. 

    May you see many more five years. 

    Sue - Trubrit

  • John212
    John212 Member Posts: 116 Member

    I appreciate hearing your story. Thanks for sharing it.

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    Congrats on 5 years!

    I also was diagnosed stage IV with only 1 single liver met.  I have been NED since surgery, which will be 3 years this June.  I didn't think I would be here also to see things like my twins graduating in June and the birth of my first grandbabies (my profile pic of them) twin girls. why do we remain NED, possibly only having a single met? Who knows?

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Thank you for sharing your

    Thank you for sharing your story, we need inspiration!

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member

    Thank you for sharing your

    Thank you for sharing your story, we need inspiration!


    and needed!  Congratulations!  Many good thoughts for many more NED years. 



  • marbleotis
    marbleotis Member Posts: 720 Member
    So so happy for you

    Enjoy.  Love your advice and agree because that is exactly what I am doing at 3 years and 2 months NED.  I think it makes a difference.