PLEASE all survivors of stage III and IV post five years!

kristasplace
kristasplace Member Posts: 957 Member
edited March 2014 in Colorectal Cancer #1
I think many of us need your stories of survival right now. Stage IV, and since stage III has a very high rate of recurrence and graduation to stage IV, we need your stories too. Anyone who has survived NED for five years or more, tell us how you have survived.

Comments

  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #2
    bumping up
    bumping up + Krista please read my post about the stage4 cancer survivor of 23 years+.
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #3
    Stage 4 survivor
    Hi Krista
    This fall will mark 6 years since my emergency surgery to remove tumor completely blocking my intestines. The tumor had grown through the intestine and engulfed an overy. Lymph nodes tested positive. Had colostomy about a year, had the reversal, with some digestion problems, pain, hemorrhoid pain, scar adhesion problems and so on after. Quit my chemo early, did 8 out of 12 treatments, my colostomy prolapsed and needed surgery, so just had the reversal done then. Some liver lesions have showed on subsequent CT and MRI scans, the last scan in June showed significant shrinkage and disappearance on these, this was with no treatment. I can not say I have significantly changed my lifestyle or diet, I guess I am just one of the "lucky" ones so far. I don't get enough exercise, I eat meat, I eat processed sugar and so on. I do have a positive attitude, and have moved on with my life, and do not dwell on the cancer, until it is scan time. So, it just goes to show, there is hope, and survival after all.
    Pam
  • sasjourney
    sasjourney Member Posts: 395 Member
    #4
    PamPam2 said:

    Stage 4 survivor
    Hi Krista
    This fall will mark 6 years since my emergency surgery to remove tumor completely blocking my intestines. The tumor had grown through the intestine and engulfed an overy. Lymph nodes tested positive. Had colostomy about a year, had the reversal, with some digestion problems, pain, hemorrhoid pain, scar adhesion problems and so on after. Quit my chemo early, did 8 out of 12 treatments, my colostomy prolapsed and needed surgery, so just had the reversal done then. Some liver lesions have showed on subsequent CT and MRI scans, the last scan in June showed significant shrinkage and disappearance on these, this was with no treatment. I can not say I have significantly changed my lifestyle or diet, I guess I am just one of the "lucky" ones so far. I don't get enough exercise, I eat meat, I eat processed sugar and so on. I do have a positive attitude, and have moved on with my life, and do not dwell on the cancer, until it is scan time. So, it just goes to show, there is hope, and survival after all.
    Pam

    Thanks For Sharing Your Story Pam!
    Hi Pam,

    Thanks for sharing your story. As a new cancer fighter it gives me hope to hear from people that have survived and moved on. That is where I want to be very soon. There are so many scary survival statistics that I can't even go there. It is too overwhelming to read and does not help me or any of us fight this disease.

    Thank you again Pam. Your words are very powerful. Enjoy your beautiful life!

    Sara
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    You all know me...I'm still hanging around...
    Stage III rectal, stage II breast 6 months later....does that make me stage 5??????

    NED on both for 5 years...(well, 4.5 for the breast...lol!)

    As you know, I'm doing lots of traveling, and share my living space between 2 different countries....

    Yes, Virginia, it CAN happen to you, too!!!!!

    Hugs, Kathi
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
    As RobInVan used to say
    you haven't survived cancer until you die from something else.
    I'm stage IV for 6 1/2 years. Living WITH cancer and enjoying life.
  • ron50
    ron50 Member Posts: 1,723 Member
    #7
    Hi Krista
    At diagnoses I was not given a great deal of hope. My colon was all but closed and my GI believed I was within a week or so of it rupturing and developing gangrene. My surgeon was equally uplifting ,he described my tumour as frightfully aggressive ,only moderate in size but already into six lymph glands. He thought he had it all but he said it was very hard to detect once it reached fatty tissue. My oncologist just shrugged and said what will be will be ,I will do my best. That ended up being 48 weekly sessions of 5fu enhanced every second week with 9 tablets of levamisole. It was a crappy year in more ways than one. After the second month of chemo I went back to work and haven't stopped since. It has now been 12 yers and seven mos , I am still ca free but I do suffer a lot of auto-immune problems. I have just turned 60 and I am still hard at work,cheers Ron.
  • jams67
    jams67 Member Posts: 925 Member
    #8
    Still here
    I celebrated 5 years NED this month!!!! Mine was discovered during a routine colonoscopy. After the removal of a foot of my colon, lymph nodes, and half my liver (3 tumors in liver) and 6 mo. of chemo, I have been cancer free. I still have neuropathy in my feet and hands, but we are old friends now. I count myself among the lucky ones. I think of all that has occurred since I was diagnosed and am very thankful I'm still here. We have a 16 mo. old grand baby and he is so very precious.
    As far as any special diet and exercise, I am working out 2or 3 times a week at the gym and just trying to eat with my brain and not my cravings. Not easy I know, and I don't always win that battle. Come celebrate life with us at CP8!
    Hugs to all of you,
    Jo Ann
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    #9
    jams67 said:

    Still here
    I celebrated 5 years NED this month!!!! Mine was discovered during a routine colonoscopy. After the removal of a foot of my colon, lymph nodes, and half my liver (3 tumors in liver) and 6 mo. of chemo, I have been cancer free. I still have neuropathy in my feet and hands, but we are old friends now. I count myself among the lucky ones. I think of all that has occurred since I was diagnosed and am very thankful I'm still here. We have a 16 mo. old grand baby and he is so very precious.
    As far as any special diet and exercise, I am working out 2or 3 times a week at the gym and just trying to eat with my brain and not my cravings. Not easy I know, and I don't always win that battle. Come celebrate life with us at CP8!
    Hugs to all of you,
    Jo Ann

    Hi Jo Ann
    Good to see your still jumping in with us year 2006 survivors. I am only four years + out and having some trouble with CEA being high so not a five year'er yet. I too have a 16 month old grand baby Good to hear you are doing well. Lou
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #10
    Almost 9 yrs!!
    I will be celebrating 9 yrs CLEAR this October. I was stage 4 with liver mets and have been all clear, totally NED since then. My doctor even called me cured. Pretty bold, but I'll take it! lol

    Rather than just hear from the stage 4 folks, I think ANYBODY who is NED ought to post...I think we could ALL benefit from success stories.

    Happy Hump Day! (interpret as you deem necessary! lol)

    Stacy
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #11
    All stories of success
    I think we all should post any little success we can celebrate....there has been some serious saddness here lately....
  • serrana
    serrana Member Posts: 163 Member
    #12
    StacyGleaso said:

    Almost 9 yrs!!
    I will be celebrating 9 yrs CLEAR this October. I was stage 4 with liver mets and have been all clear, totally NED since then. My doctor even called me cured. Pretty bold, but I'll take it! lol

    Rather than just hear from the stage 4 folks, I think ANYBODY who is NED ought to post...I think we could ALL benefit from success stories.

    Happy Hump Day! (interpret as you deem necessary! lol)

    Stacy

    IV survival
    It is wonderful to hear from folks who are 4 years out whether or not they are NED or not!!
    My onc seems to think that I am beyond the charts and out in limbo land re what will work now.. and I am the one encouraging him about long(er) term survival with or without mets hanging around!!! Geeze it must be hard to be an onc and hooked in to stats and chemistry etc THere is sooooooooo much they don't know scientifically that is working here.
    Big hurrah for all of us who are "living" with cancer, lets continue to holler.
    Lets stay connected
    Serrana
  • Doug_B
    Doug_B Member Posts: 27
    #13
    Stage 3 level C
    Great topic Krista

    DX'd in june 2004. NED August 2010.

    Two back to back surgeries (from complications)and chemo. That was the medical side of things. My part was the attitude. Research and understanding of what I faced was very important. Get to know the enemy. Accepting the fact I had cancer and realizing there was something "I" could do about it.

    I call it "The Survivor State of Mind" which is in all of us. Simply put, cancer can take a back seat in life. "I have more important things to do than die from cancer". Diet and exercise is paramount. Getting involved with other cancer patients gives us a purpose, another way to put cancer in the back seat and keep it there.

    Due diligence to ourselves and other cancer patients/survivors keeps our foot on the head of the beast pinning it to the ground; subdued and dominated. The only way.

    There is always hope.

    Doug
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #14
    9 YEARS !!
    Hi Krista,

    Haven't been on the boards for about a month (and only just popping in briefly and really cannot stay for many reasons--feeling so very sad about Kimby) but just wanted to share my survivorship.

    Stage III lymph pos (2/19) zero mets sigmoid colon ca dx August 2001.

    Have remained cancer free with zero recurrences for 9 years (scans will be this fall).

    DID NOT DO ANY CHEMO AT ALL-- only surgery and alternative medicine including Traditional Chinese Medicine, vegan/macro diet, juicing fresh organic veggies, yoga, exercise, herbs, supplements, and prayer.

    Am currently eating no grains whatsoever after reading a wonderful book, Dangerous Grains that connects gluten consumption with intestinal cancers. My sister died at 33 with cancer of the small intestine. I am convinced that she was either celiac or gluten intolerant that led to her cancer and mine as well. Am also on a low inflammation regime cutting out foods with histamine and high allergy foods. HAve lost 43 pounds and feel awesome. Inflammation can cause a host of diseases (not to mention make one hold onto weight).

    I think that the fact that I did NOT do any chemo is a HUGE reason why I have not had any recurrences for 9 years. I just heard an interview with a doctor/researcher on NPR last week and he stated that chemo will only go so far and then when the cancer comes back it comes back stronger. I know this will be met with controversy but I just want folks to know that we DO have choices and you CAN take your health into your own hands. The key is to RESEARCH YOUR OPTIONS and think outside the medical/big pharma box. Find what works for YOU and your body. If you're having recurrences then chemo ain't workin'!!

    peace, emily aka the juice chick
  • SueRelays
    SueRelays Member Posts: 485
    #15
    2bhealed said:

    9 YEARS !!
    Hi Krista,

    Haven't been on the boards for about a month (and only just popping in briefly and really cannot stay for many reasons--feeling so very sad about Kimby) but just wanted to share my survivorship.

    Stage III lymph pos (2/19) zero mets sigmoid colon ca dx August 2001.

    Have remained cancer free with zero recurrences for 9 years (scans will be this fall).

    DID NOT DO ANY CHEMO AT ALL-- only surgery and alternative medicine including Traditional Chinese Medicine, vegan/macro diet, juicing fresh organic veggies, yoga, exercise, herbs, supplements, and prayer.

    Am currently eating no grains whatsoever after reading a wonderful book, Dangerous Grains that connects gluten consumption with intestinal cancers. My sister died at 33 with cancer of the small intestine. I am convinced that she was either celiac or gluten intolerant that led to her cancer and mine as well. Am also on a low inflammation regime cutting out foods with histamine and high allergy foods. HAve lost 43 pounds and feel awesome. Inflammation can cause a host of diseases (not to mention make one hold onto weight).

    I think that the fact that I did NOT do any chemo is a HUGE reason why I have not had any recurrences for 9 years. I just heard an interview with a doctor/researcher on NPR last week and he stated that chemo will only go so far and then when the cancer comes back it comes back stronger. I know this will be met with controversy but I just want folks to know that we DO have choices and you CAN take your health into your own hands. The key is to RESEARCH YOUR OPTIONS and think outside the medical/big pharma box. Find what works for YOU and your body. If you're having recurrences then chemo ain't workin'!!

    peace, emily aka the juice chick

    I LOVE your story Emily.
    I LOVE your story Emily. I've read many books that lean towards this type of healing, and it's great to hear first hand from someone who has done well.

    I LOVE these posts so full of HOPE. I gave a speech about it at my Relay event! You are all inspirations to me, and I thank each and every one of you for the time and care you exude here on a daily basis~~~

    Stage IV anal cancer with mets to liver. 6 months NED! Enjoying LIFE :)!
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #16
    5 years +
    Hi Krista -

    I know you technically asked about folks who had been NED for 5 years, but since most people seem to be ignoring that, I thought I'd chime in: diagnosed Stage 4 in May 2005 and doing really well. So 5+ years out and currently NED - was NED once for 3 years and am NED again for 16 months. For some of us that's as good as it gets and it's pretty good.

    See my signature for details. I did have a recurrence in my lung after 35 months off chemo - liver still clear 5 years later, however.

    Take care,

    Betsy

    diag. Stage IV, 5/05, liver met
    lap sigmoid colectomy, 6/05
    6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
    11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
    6 cycles Xeloda + Avastin,
    NED (PET every 3 mo)
    Currently on Avastin only every 3 weeks

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