Still NED

rthornton
rthornton Member Posts: 346 Member
edited March 2014 in Colorectal Cancer #1
With new people getting diagnosed and the tragic losses we've seen, I'm never sure if/when good news is appropriate. But then I guess for those that are recently diagnosed, it's good to know that it's possible to beat this disease.

I was diagnosed with stage four colon cancer on May 11 of this year at 35 years of age, with multiple liver mets. I had a total colectomy on May 23, and soon after started chemotherapy: 5FU + Avastin + Oxaliplatin. After six chemo cycles (three months) I had a PET scan which showed no evidence of disease. That was two months ago. Yesterday I had a new PET scan that also showed NED. I stopped 5FU about a month ago because it was making me so sick, and next Wednesday I start CPT-11 + Erbitux. I'm hoping for the best, for more clean scan reports in the future. Also, for those that are recently diagnosed, I hope I can provide a bit of hope with my own story. I don't know if I did anything special to make the tumors disappear. I did radically change my diet and start taking some supplements, and maintained (I think) a healthy attitude through treatment. Anyway, best of luck to everyone, and as always, thanks to those who have answered all of my questions and offered so much support.

Rodney

Comments

  • Kanort
    Kanort Member Posts: 1,272 Member
    #2
    Hi Rodney,

    Good news is appropriate any and all the time. You are evidence that winning the battle is achievable. Congratulations on your NED status and may all your future scans show complete healing!

    Kay
  • goldfinch
    goldfinch Member Posts: 735
    #3
    Yippee!
    With 2 ned reports, how long are they going to give you chemo? I realize that most oncs will continue to treat to be sure that all of those unseen ca cells are taken care of. I'm just curious to hear how long yours feels you need treatment.
    Mary
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #4
    Hi Rodney -

    That's great news! Good news is always welcome here! I was diagnosed a couple of weeks after you, and was NED at my PET/CT after 2 cycles of Xeloda/oxaliplatin/avastin. I'm just starting my 5th cycle this week (we took a 6 week break to allow me some quality recovery time). I know I will go to the scanner again in Dec or early January, but not sure how many chemo cycles my onc plans if that goes well. So, I'm really curious what your doc plans.

    It seems more and more this terrible disease may be managed as a chronic disease for many. I wonder if I won't be on and off chemo for the rest of my life - even if the rest of my life turns out to be quite long.

    Take care. Thanks for sharing your good news.

    Betsy
  • rthornton
    rthornton Member Posts: 346 Member
    #5
    Betsydoglover said:

    Hi Rodney -

    That's great news! Good news is always welcome here! I was diagnosed a couple of weeks after you, and was NED at my PET/CT after 2 cycles of Xeloda/oxaliplatin/avastin. I'm just starting my 5th cycle this week (we took a 6 week break to allow me some quality recovery time). I know I will go to the scanner again in Dec or early January, but not sure how many chemo cycles my onc plans if that goes well. So, I'm really curious what your doc plans.

    It seems more and more this terrible disease may be managed as a chronic disease for many. I wonder if I won't be on and off chemo for the rest of my life - even if the rest of my life turns out to be quite long.

    Take care. Thanks for sharing your good news.

    Betsy

    Hi again. I don't yet know how long I will be going through treatment, except that next week I start the CPT-11 + Erbitux (which I've heard is much easier than Folfox). My doc only said if I was 30 or 40 years older he'd give me a break over the holidays and start in January, but instead, with me, he wants to start next week. I take that as a sign that he has confidence in the results of the new therapy.

    I have read some reports of people having questionable experiences with doctors. I have had only good experiences with my docs. Would it even be legal to share info with eachother regarding what doctors have been good and which ones, well, not so good? My oncologist (Dr. Carlos Franco) and my surgeon (Dr. Wayne Ambroze) have both been excellent!

    Rodney
  • kerry
    kerry Member Posts: 1,313 Member
    #6
    Rodney,

    Great news! Good news is always welcome news, it give hope and encouragement.

    I hope we can see you at one of our colon paloozas soon. Take care and continue to be well.

    Kerry
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #7
    That is great news and I think it is always welcome. I sometimes feel guilty posting good news, but I think is it so important esp. for the newcomers. Life does go on after your cancer diagnosis and people do get better. I saw my surgeon yesterday and he said, wow, it's been almost 2 1/2 years since your surgery. That brought a smile to my face. I remember when all I did was cry.

    As always I am praying for everyone to be NED also.

    Moe
  • taraHK
    taraHK Member Posts: 1,952 Member
    #8
    Congratulations! And thanks for sharing the wonderful NED news with us. It always lifts my heart and spirits. Wishing you the best of luck with the new regime....
    Tara
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #9
    taraHK said:

    Congratulations! And thanks for sharing the wonderful NED news with us. It always lifts my heart and spirits. Wishing you the best of luck with the new regime....
    Tara

    Hiya Rodney...well done mate. There is definately a big plus in telling us the good news. Hearing stories of the demon copping a double wammy from stage 4'ers has to be some of the best uplifting news on this board particularly for our new friends here who have so many questions and so much anxiety in their lives. So keep the good news coming mate!
    cheers n huggs from oz, Ross n Jen
  • taunya
    taunya Member Posts: 390 Member
    #10
    Rodney, that is WONDERFUL NEWS!!!!!!!! I am thrilled to hear it. Keep up the good work.
    Love and Hugs to you,
    Taunya
  • scouty
    scouty Member Posts: 1,965 Member
    #11
    Rodney,

    You just keep on kicking some serious cancer **** and keep us posted. We love it!!!!!!!!

    Congrats guy and enjoy the freedom it can bring.

    Lisa P.
  • crazylady
    crazylady Member Posts: 543 Member
    #12
    Rodney,
    Congratulations on remaining NED. It's always good to post good news. It always gives me hope to hear that others have been doing well!
    Jamie
  • HisJoy
    HisJoy Member Posts: 113
    #13
    Yahooooooo for Rodney! SO happy to hear you are NED, especially as sick as you've been. Here's wishing you many, many more years with our pal, NED. I have a CT scan coming up Nov. 21 to see about this pesky new nodule that is in my abdomen. Should know more then. I hope I can join you in the ranks of NED.

    Joyfully,
    BB
  • jsabol
    jsabol Member Posts: 1,145 Member
    #14
    Hi Rodney, CONGRATS on the great news; after all you have been through it's wonderful to hear the outcome; keep up the good work! Regards, Judy

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