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Stage 4 survivors

13

Comments

  • Randy33
    Randy33 Member Posts: 69

    It will be 7 years next week
    It will be 7 years next week for me. I have had 3 liver resections and 34 rounds of chemo with long periods of NED in between. I am currently NED for the third time. My quality of life is great except the chemo when i have to do it. I was heavily into mountain biking before cancer and am more into it since. I would even mountain bike 2 days after chemo. I radically changed my diet to mostly vegan with a lot of juicing.

    Longest period NED
    What was the longest period of time you were NED? I will be going on 4 yrs soon and I am interested in knowing if there are many people who go NED for 4 yrs or more and then have a recurrence. I see we follow a similar plan of lots of exercise and good diet. Do you take any supplements? I think its great you have made it for 7 yrs. I hope third times the charm and you stay NED.

    Randy
  • krishna12345
    krishna12345 Member Posts: 3
    Randy33 said:

    Almost 4 yrs NED
    I was dx with stage 4 colon cancer in July 2008. I had mets to the liver and lymph node in the neck. I had 10 rounds of Folfox w/ Avastin until the neurothopy got too bad and I had to quit. I still have numbness in my feet. After my last round of chemo my PET scan showed I was cancer free. That was in Dec. 2008. My doctor told me I had a 95% chance of recurrance, but I decided to do everything I could to prevent recurrance. My program is as follows:
    1. Exercise 3 hrs per day doing walking, yoga, weightlifting and running.
    2, Eat a Mediterranian diet. No red meat, limit sugar, sat. fat, white flour. Also eat lots of fruit, veggies, and whole grains. Green tea and tumeric every day.
    3. Take a variety of supplements: asprin, resveratrol, grape seed extract, fish oil, multi-vitamin, Co-Q-10, and Vit. D3.
    4. Avoid stress
    5. Prayer
    6. Visulize my anti-bodies attacking cancer cells.
    So far the program has been working. My next scan is in Jan. My last doctor's visit was last week and my CEA number indicated I was still NED. So far things are working out well. My doctor says I'm 62 going on 45. Except for the numbness in my feet I am in great shape. One positive thing about the whole experience has been a greater apprecdiation for life. I hope this helps.

    Randy

    Stage IV Colon Cancer
    Hi Randy

    My father was dx with stage 4 colon cancer in September 2012. He had mets to the liver (9mm tumor) and spleen (15mm tumor).Docs have advised chemo. Is chemo enough?

    Please describe the tratment given to you.
  • Randy33
    Randy33 Member Posts: 69

    Stage IV Colon Cancer
    Hi Randy

    My father was dx with stage 4 colon cancer in September 2012. He had mets to the liver (9mm tumor) and spleen (15mm tumor).Docs have advised chemo. Is chemo enough?

    Please describe the tratment given to you.

    Krishna
    I had 10 rounds of Folfox and Avastin until the neuropathy got too bad to continue. My Onc wanted me to originally do 12 rounds. After chemo I was suppose to have surgery and radiation to remove what was left of the tumors however the PET scan showed that the tumors had disapeared. We decided to wait and see what happened. I started out having scans every 6 months and now I am on yearly scans. I also have my CEA checked quarterly. So far so good. One thing I did was exercise and eat well during chemo. I don't know if that was a factor or not. Good luck to your father.
  • janderson1964
    janderson1964 Member Posts: 2,215
    Randy33 said:

    Longest period NED
    What was the longest period of time you were NED? I will be going on 4 yrs soon and I am interested in knowing if there are many people who go NED for 4 yrs or more and then have a recurrence. I see we follow a similar plan of lots of exercise and good diet. Do you take any supplements? I think its great you have made it for 7 yrs. I hope third times the charm and you stay NED.

    Randy

    I do a good amount of
    I do a good amount of supplements as well. I juice 3 times a day. I dont eant to make you nervous but i went 1 1/2 years NED the first time. 4 years the second and am going on a year NED NOW.
  • joemetz
    joemetz Member Posts: 493
    jen2012 said:

    Have you tried
    Have you tried grains...farrow quinoa etc....or maybe mashed cauliflower instead of the rice and potatoes. I made some pretty good quinoa and oatmeal cookies with very little sweetener that everyone here liked...can add fruits to those.

    cookies
    one of the guys at my work, provided me with hash-cookies to make it through the early and more aggressive folfox treatments. man those were good!

    but for some reason I craved cheeto's and freetoes, wanted to paint with water colors, sit in a bean bag chair with sun glasses and bell bottoms on... and I kept pressing that button on the stero trying to get it to change from Track 5 to track 7 of the Jethro Tull 8track.

    not sure what happened there.
  • JayhawkDan
    JayhawkDan Member Posts: 205
    Lots of great info here that
    Lots of great info here that gives me hope. Glad I found this site right after dx.

    1. How long since initial diagnosis?

    Right at 9 months (2/2/2012). About 10 seconds in to being told how bad it was (we knew it was cancer after the colonoscopy), the original onc said I'd be on chemo for the rest of my life, and that it would be terminal. After he said "chemo for life" my first thought was "I've got to do this for 30 years?" (I'm 57)' but I quickly found out he meant maybe 3 years but my worries about 30 years was unfounded...damnit. Anyway, the news hit my wife and I like a ton of bricks -- as you all know too well. I was at my local cancer center and told them I'd like a second opinion, which he was fine with that. Got into see an onc at a university hospital an hour away, that became an NCI center a few months later, which is nice. The 2 oncs are playing nice with each other. I'm being treated here in town, but the NCI onc is calling the shots, and that's where I'll have surgery if its deemed appropriate. Before I got involved in this crap I figured tx's were probably somewhat standard, but as you know, it's anything but. The 2 oncs have had different ideas at about every turn. Glad I went to the NCI center because the chemo is working well. CEA started at 44 and dropped steadily to right around 1. Last scan showed liver mets were kind of burned out (still there -- but minimized). I definitely believe I'll beat the 29 months that is the supposed average, and have been buoyed by the stories I read from you fine folks.

    2. What made you stage 4?

    Extensive mets to liver, which have been considered inoperable....but my oncologist has me seeing a liver surgeon In 2 weeks to discuss the good, bad, and the ugly. She's not sure it's the right thing at this time, but the surgeon is part of the tumor board that reviewed my case and he wants to talk to me. Apprently they would take one lobe and "burn out" lesions on the other side. Not sure -- would that be RFA?

    3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time.

    I've been on folfiri/vectibix for 18 tx's, and I'm definitely feeling the effects. After a few tx's I felt "heck, I can do this." But the chemo has had a cumulative effect that's kicking my butt.

    4. What is your quality of life - do you still work, enjoy everything as you always have.

    I worked extensively the first several months -- many times 60+ hours a week. I'm a realtor and that's the way it goes if you're busy and successful, so no complaints. But business fell off a couple of months ago and I applied for disability, which was approved almost immediately. Can still earn $1000 a month on top of that, so I'm still working, but minimally. That along with the cancer insurance that I fortuitously purchased a few years ago, should help us survive, along with my wife's job. We have no cancer history in my family and I guess I thought cancer insurance would "insure" I wouldn't get this dread disease. Lol. Quality of life hasn't been bad, other than getting way too acquainted with toilets, and chemo brain and nausea. I've taken 3 chemo breaks for short trips to Texas, Colorado, and a week long Caribbean cruise. The further I get from chemo the better I feel, then start another round, and start over.

    5. Did you make any life changes - diet, supplements, etc.

    Not really-- no real nutrition advice from either onc. I was told they wanted me to gain weight, and I've been successful! I had lost about 15 lbs and I've put that back on.

    The real joy in my life has been my 3 month grandson...see avatar. We have one daughter who was married a year ago and found out she was pregnant about the time I was dx. The little guy has sure helped bring joy to the family! The same as everybody walking the planet, I don't know how much time I have. But this disease has helped me focus on the important things and enjoy life to its fullest. In that way this has been a real gift. I love and appreciate you all, Dan.
  • jen2012
    jen2012 Member Posts: 1,607
    joemetz said:

    cookies
    one of the guys at my work, provided me with hash-cookies to make it through the early and more aggressive folfox treatments. man those were good!

    but for some reason I craved cheeto's and freetoes, wanted to paint with water colors, sit in a bean bag chair with sun glasses and bell bottoms on... and I kept pressing that button on the stero trying to get it to change from Track 5 to track 7 of the Jethro Tull 8track.

    not sure what happened there.

    Those cookies sound even
    Those cookies sound even better. Will have to find the recipe...maybe I'll share with my hubby :)
  • jen2012
    jen2012 Member Posts: 1,607

    Lots of great info here that
    Lots of great info here that gives me hope. Glad I found this site right after dx.

    1. How long since initial diagnosis?

    Right at 9 months (2/2/2012). About 10 seconds in to being told how bad it was (we knew it was cancer after the colonoscopy), the original onc said I'd be on chemo for the rest of my life, and that it would be terminal. After he said "chemo for life" my first thought was "I've got to do this for 30 years?" (I'm 57)' but I quickly found out he meant maybe 3 years but my worries about 30 years was unfounded...damnit. Anyway, the news hit my wife and I like a ton of bricks -- as you all know too well. I was at my local cancer center and told them I'd like a second opinion, which he was fine with that. Got into see an onc at a university hospital an hour away, that became an NCI center a few months later, which is nice. The 2 oncs are playing nice with each other. I'm being treated here in town, but the NCI onc is calling the shots, and that's where I'll have surgery if its deemed appropriate. Before I got involved in this crap I figured tx's were probably somewhat standard, but as you know, it's anything but. The 2 oncs have had different ideas at about every turn. Glad I went to the NCI center because the chemo is working well. CEA started at 44 and dropped steadily to right around 1. Last scan showed liver mets were kind of burned out (still there -- but minimized). I definitely believe I'll beat the 29 months that is the supposed average, and have been buoyed by the stories I read from you fine folks.

    2. What made you stage 4?

    Extensive mets to liver, which have been considered inoperable....but my oncologist has me seeing a liver surgeon In 2 weeks to discuss the good, bad, and the ugly. She's not sure it's the right thing at this time, but the surgeon is part of the tumor board that reviewed my case and he wants to talk to me. Apprently they would take one lobe and "burn out" lesions on the other side. Not sure -- would that be RFA?

    3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time.

    I've been on folfiri/vectibix for 18 tx's, and I'm definitely feeling the effects. After a few tx's I felt "heck, I can do this." But the chemo has had a cumulative effect that's kicking my butt.

    4. What is your quality of life - do you still work, enjoy everything as you always have.

    I worked extensively the first several months -- many times 60+ hours a week. I'm a realtor and that's the way it goes if you're busy and successful, so no complaints. But business fell off a couple of months ago and I applied for disability, which was approved almost immediately. Can still earn $1000 a month on top of that, so I'm still working, but minimally. That along with the cancer insurance that I fortuitously purchased a few years ago, should help us survive, along with my wife's job. We have no cancer history in my family and I guess I thought cancer insurance would "insure" I wouldn't get this dread disease. Lol. Quality of life hasn't been bad, other than getting way too acquainted with toilets, and chemo brain and nausea. I've taken 3 chemo breaks for short trips to Texas, Colorado, and a week long Caribbean cruise. The further I get from chemo the better I feel, then start another round, and start over.

    5. Did you make any life changes - diet, supplements, etc.

    Not really-- no real nutrition advice from either onc. I was told they wanted me to gain weight, and I've been successful! I had lost about 15 lbs and I've put that back on.

    The real joy in my life has been my 3 month grandson...see avatar. We have one daughter who was married a year ago and found out she was pregnant about the time I was dx. The little guy has sure helped bring joy to the family! The same as everybody walking the planet, I don't know how much time I have. But this disease has helped me focus on the important things and enjoy life to its fullest. In that way this has been a real gift. I love and appreciate you all, Dan.

    Awesome Dan...glad that the
    Awesome Dan...glad that the chemo seems to be working!

    Beautiful grandson you have! Babies are amazing! We had a surprise addition to our family 13 months ago....hes the best surprise ever. Its hard not to smile and laugh with the little ones around.

    Good luck with the surgeon!
  • traci43
    traci43 Member Posts: 773
    dx 6/2007
    Hi there - I was diagnosed 5 years ago with stage IV mets to ovaries and omentum. Since original surgery 6/07 followed by 12 rounds FOLFOX, I've had two recurrances. First in 2009, had HIPEC to remove three small tumors that were in a bit of omentum not removed in the first surgery and probably not new tumors. In December 2010 I had a recurrance with a tumor in the peritoneal fat near my rectum, 18 rounds of XELIRI knocked it back but didn't kill the sucker. In June 2012 my CEA jumped and I started XELIRI again (6 rounds). Just had surgery to remove what my surgeon says is an old tumor, so we think my body is fighting 6 months off after my first to recover and do chemo. Three months off after HIPEC to recover. Since then I switched to XELIRI because there are fewer side effects for me and I can keep working except for infusion days. I try to do as much as possible and only relax on infusion and post infusion days. In fact I delayed starting chemo this year to take my niece and nephew to Disneyland. My quality of life is pretty high and I try to keep it that way. We are fixing up our old house, weeding on weekends and going to shows and museums. I want to do more travel, but have to fit that in around work. ;-)

    I have tried to reduce sugar in my diet, I've stopped sodas and try to eat healthier--organic as much as possible. I'm taking high quality supplements for inflammation as well as Oncomar. I have also been exercising and that really helps to get through chemo--way more energy and fewer side effects. In fact I really need to get back to exercising. Oh and I started meditating a year ago. It's really helped my sleep!
  • traci43
    traci43 Member Posts: 773
    jen2012 said:

    Hey Joe...great new
    Hey Joe...great new picture...you look ready to get back to work! They say my husbands may have also been from previous radiation. Wouldn't it have been nice if someone suggested you guys had an earlier colonoscopy because it was possible for this to happen?


    Ive been having a hard time with faith too. My husbands faith has always been stronger than mine but we have both been so involved in church..volunteering many many hours and its hard to not look around at the pain so many suffer and not wonder why. Especially children...I wish I had the answers. I hope you find them and find comfort in your faith and also continue to do and feel well.

    previous radiation
    Interesting that 2 people mention radiation as cause of their tumors. I had over 20 IVPs as a teen, each IVP is 6-8 x-rays of the kidneys with dye. My original tumor was a the junction of the transverse and decending near the left kidney--the one they were x-raying. No one will say whehter that lead to this or not. It's been 30 years since I've had one, so maybe not.
  • PhillieG
    PhillieG Member Posts: 4,866
    jen2012 said:

    Hi Phil...I'm glad you had a
    Hi Phil...I'm glad you had a great response. I've been trying to talk my husband into going to Sloan...its a fairly easy drive for us. He likes his Dr here and trusts her. They must use rfa for nodes?? Id think they could... he had 2 removed in the biopsy. Surgeon said they were both positive even though he thinks he only got one of the two that lit up … so I would guess there is at least one more still in there.

    I agree a positive attitude goes a long way...he's doing better with that than I am.

    Hi Jen
    There are no musts with cancer other than we must try to do our best but even that doesn't really apply.
    Some have a fatalist approach to everything...
    I've had chemo, wedge resections, and RFAs done on my lungs. The RFA is by FAR the easiest on my body.
    The wedge resections were rather major surgery and not a lot of fun...

    Being "Happy" with your doctor is nice but I'd rather have one of the brightest minds there is treating me.
    I'm not suggesting your husband's doctor isn't smart or isn't good. I'm just saying that I believe mine is smart and good
    Attitude may not be the only thing but to me, it plays a HUGE role.
    If you think like a winner you'll be on your way to becoming one.
    If you think like a victim, you're on your way to becoming one.

    A no brainer for me.
    Good luck
    -phil
  • janderson1964
    janderson1964 Member Posts: 2,215

    still kicking'!
    Hi everyone,
    I used to be very active on this forum but have fallen off in recent years...although I still lurk sometimes.
    I was diagnosed in 2002 right before my 32nd birthday. I was later discovered to have a liver met and was treated w/ XELIRI...
    In 2004 I had 2 lung mets removed via open thoracotomy (wedge resection) and did not have any chemo after that. I have been NED since. I was treated primarily at MD Anderson and am grateful for finding doctors with a positive attitude and a belief that I could be cured.
    I exercise regularly although I do go through periods of laziness (like now, lol.)
    I also try to eat right and have taken a variety of supplements over the years. The only Rx that I take now is Celebrex 100 mg/day.

    Great story. Thank you for
    Great story. Thank you for sharing it with us.
  • MadeInMichigan
    MadeInMichigan Member Posts: 35
    traci43 said:

    dx 6/2007
    Hi there - I was diagnosed 5 years ago with stage IV mets to ovaries and omentum. Since original surgery 6/07 followed by 12 rounds FOLFOX, I've had two recurrances. First in 2009, had HIPEC to remove three small tumors that were in a bit of omentum not removed in the first surgery and probably not new tumors. In December 2010 I had a recurrance with a tumor in the peritoneal fat near my rectum, 18 rounds of XELIRI knocked it back but didn't kill the sucker. In June 2012 my CEA jumped and I started XELIRI again (6 rounds). Just had surgery to remove what my surgeon says is an old tumor, so we think my body is fighting 6 months off after my first to recover and do chemo. Three months off after HIPEC to recover. Since then I switched to XELIRI because there are fewer side effects for me and I can keep working except for infusion days. I try to do as much as possible and only relax on infusion and post infusion days. In fact I delayed starting chemo this year to take my niece and nephew to Disneyland. My quality of life is pretty high and I try to keep it that way. We are fixing up our old house, weeding on weekends and going to shows and museums. I want to do more travel, but have to fit that in around work. ;-)

    I have tried to reduce sugar in my diet, I've stopped sodas and try to eat healthier--organic as much as possible. I'm taking high quality supplements for inflammation as well as Oncomar. I have also been exercising and that really helps to get through chemo--way more energy and fewer side effects. In fact I really need to get back to exercising. Oh and I started meditating a year ago. It's really helped my sleep!

    Thank you for all of the
    Thank you for all of the posts, everybody... it gives me a bit more hope for my mom, who was recently told she had cancer for the third time.

    It doesn't look good, but these posts help. I appreciate every moment now. I used to give her a hard time, and had I lost her from something sudden? I'd've never forgiven myself.

    Thanks again for sharing. I'll be coming to this site and thread every now and then.
  • Bluejuniata
    Bluejuniata Member Posts: 20
    Chelsea71 said:

    Jen
    Those cookies sound

    Jen

    Those cookies sound good. When you say "sweetener" do you mean artificial sweeteners such as Splenda and Truvia etc.? This is something that confuses me. I believe that sugar does feed cancer. To me it makes sense to avoid it when possible. I have been "giving" Steve sweetener in place of sugar. Ex. Buying jam sweetened with Splenda, I baked muffins with Splenda, he uses Truvia to sweeten his tea etc. However, in the back of my mind I'm wondering if sweeteners too are harmful. I know aspartame is not the best choice, so I do avoid it. Should any type of sweetness be avoided? Just wondering what your thoughts are on this. You mentioned "very little sweetener," which made me think that you've done some research on the subject too. Last night he had ice cream sweetened with Splenda. Do you think this is a bad idea? It's so hard to figure out what's best with regard to diet, supplements etc. I find there's a lot of conflicting info. out there.

    Thanks

    Chelsea

    sweetner
    Hello there-- i believe that it does not matter what the sweetner is because any sweetner spikes your insulin levels. Anyone else?
  • janderson1964
    janderson1964 Member Posts: 2,215
    biglaur said:

    I was diagnosed Stage IV May '06
    I thought I had appendicitis...but after an emergency colonoscopy and ct scan...learned I had colon cancer with mets to liver and lung. First I had a colon resection...then I did 11 rounds of folfiri with Avastin plus a clinical trial drug. I took a 3 week break between rounds 5 and 6 (for my daughters wedding) and for stereotactic radiation. After the initial colon resection I was reluctant to have further surgery so opted for radiation to nuke my mets...worked great! I finished chemo, then did Xeloda for 6 months. I have been NED since Feb '09...30 ct scans and 6 PET scans later I think radiation poisoning will be my biggest worry now :) My quality of life hasn't diminished at all...we just got back from 2 weeks of bicycling in Italy, I have a 10 month old grandson who is the coolest thing ever...I'm about to have a one woman show of my watercolors in Hawaii and I'm super happy to be alive and kicking. Stay positive and keep a sense of humor...

    Great story. Thanks for
    Great story. Thanks for sharing.
  • LullabyEye
    LullabyEye Member Posts: 2
    My First Post
    I logged onto this site because I needed to know more about my daughter's condition. She also has Stage IV, does chemo every three weeks indefinitely at age 43. Her doctor told her in September 2011 that the average life expectancy was 2 years for her condition. I wanted to know how this compares to other people's experiences. I have to say I feel a bit encouraged by the longevity described in these posts, as well as the optimism. I feel like I'm in the middle of being a cheerleader and a pallbearer, and I need some balance between the two. A little perspective.

    Thanks for bringing up the topic.
  • Rubyrose
    Rubyrose Member Posts: 47
    Buzzard said:

    4 and one half years
    DX 3/25/2008 with rectal tumor

    Considered Stage 4 after metastisis was found in lower left lung lobe

    Initially I did Folfox to try and eliminate any foreign cancer cells after surgery

    Was out of treatment for two years before reoccurence happened

    Chemo Folfiri/with Avastin has really done a number on me and quality of life on it for me was near to none

    I have opted not to continue treatment........

    Buzzard how are you going?
    I saw your last post that you opted not to continue treatment. How are you? Rubyrose
  • cinreag
    cinreag Member Posts: 154

    My First Post
    I logged onto this site because I needed to know more about my daughter's condition. She also has Stage IV, does chemo every three weeks indefinitely at age 43. Her doctor told her in September 2011 that the average life expectancy was 2 years for her condition. I wanted to know how this compares to other people's experiences. I have to say I feel a bit encouraged by the longevity described in these posts, as well as the optimism. I feel like I'm in the middle of being a cheerleader and a pallbearer, and I need some balance between the two. A little perspective.

    Thanks for bringing up the topic.

    LullabyEye
    Keep reading the posts on this site. There is a lot of help and encouragement here for you and your daughter.
    Best of luck.....Cindy
  • Chelsea71
    Chelsea71 Member Posts: 1,169

    My First Post
    I logged onto this site because I needed to know more about my daughter's condition. She also has Stage IV, does chemo every three weeks indefinitely at age 43. Her doctor told her in September 2011 that the average life expectancy was 2 years for her condition. I wanted to know how this compares to other people's experiences. I have to say I feel a bit encouraged by the longevity described in these posts, as well as the optimism. I feel like I'm in the middle of being a cheerleader and a pallbearer, and I need some balance between the two. A little perspective.

    Thanks for bringing up the topic.

    Two years is what they tell
    Two years is what they tell everybody. Each situation is unique. There's so many here who have well exceeded their expiry dates and are living with very good quality of life. Welcome to the board. I'm sure you will find it helpful.

    Chelsea
  • jen2012
    jen2012 Member Posts: 1,607
    Chelsea71 said:

    Two years is what they tell
    Two years is what they tell everybody. Each situation is unique. There's so many here who have well exceeded their expiry dates and are living with very good quality of life. Welcome to the board. I'm sure you will find it helpful.

    Chelsea

    Thought i'd bump this up for
    Thought i'd bump this up for the new folks to read.
  • annalexandria
    annalexandria Member Posts: 2,571
    Diagnosed September 2009

    with tumors in the colon, small intestine, peritoneum, and 5 lymph nodes (including one para-aortic).  Two surgeries, followed by FOLFOX with Avastin.  Had major recurrence in September 2010, with further spread in the small intestines and peritoneum.  Another big surgery, followed by more chemo.  Two single tumors popped up in April 2011, and again in December 2011, leading to the removal of another piece of colon, a chunk of rectum, and a total hysterectomy.  No more chemo for me, after two failed attempts.  I've been NED since Dec. of last year, so celebrated one year of no treatment/surgery last month.  I have a very aggressive form of CRC, so making it a year is a pretty big achievement...knock on wood.  AA

  • YoVita
    YoVita Member Posts: 590
    Stage IV metastatic CRC

    Originally diagnosed as Stage IIIC rectal cancer February 2010.  Lung recurrence after 2 1/2 years June 2012.  In remission/NED since.  I'm doing well.  Life changes - I exercise more.  My diet has always been fairly healthy.  My major life change is in attitude - enjoying life each day!  Thanks for bumping this post Jen.  It should be permanently at the top! 

  • ron50
    ron50 Member Posts: 1,723
    YoVita said:

    Stage IV metastatic CRC

    Originally diagnosed as Stage IIIC rectal cancer February 2010.  Lung recurrence after 2 1/2 years June 2012.  In remission/NED since.  I'm doing well.  Life changes - I exercise more.  My diet has always been fairly healthy.  My major life change is in attitude - enjoying life each day!  Thanks for bumping this post Jen.  It should be permanently at the top! 

    G'day all
    On a current post 'Ron are you ok?' I had a call fro a long time friend of mine from Newzealand. Foxy(virginia) had stage 4 colon ca with liver met. She had surgery including a wedge resection of her liver and a year of chemo(5fu and levamisole). Next december she will be 20 years ca free...ron.
  • Varmint5
    Varmint5 Member Posts: 384
    ron50 said:

    G'day all
    On a current post 'Ron are you ok?' I had a call fro a long time friend of mine from Newzealand. Foxy(virginia) had stage 4 colon ca with liver met. She had surgery including a wedge resection of her liver and a year of chemo(5fu and levamisole). Next december she will be 20 years ca free...ron.

    Wow, Ron...

    Thank you for posting this. We need to hear these stories, believe that it can happen. The wife of a doctor I used to work with (he's now retired) had colon cancer about 15 years ago, stage IV. I don't remember the details except that I thought it would have a bad outcome and that it seemed they were chasing the cancer all over her body. She has been cancer free ever since then and is also retired now and doing wonderfully health-wise!

    Sandy

     

  • jen2012
    jen2012 Member Posts: 1,607

    Diagnosed September 2009

    with tumors in the colon, small intestine, peritoneum, and 5 lymph nodes (including one para-aortic).  Two surgeries, followed by FOLFOX with Avastin.  Had major recurrence in September 2010, with further spread in the small intestines and peritoneum.  Another big surgery, followed by more chemo.  Two single tumors popped up in April 2011, and again in December 2011, leading to the removal of another piece of colon, a chunk of rectum, and a total hysterectomy.  No more chemo for me, after two failed attempts.  I've been NED since Dec. of last year, so celebrated one year of no treatment/surgery last month.  I have a very aggressive form of CRC, so making it a year is a pretty big achievement...knock on wood.  AA

    Thats great Ann...i hope that
    Thats great Ann...i hope that Ned continues!
  • jen2012
    jen2012 Member Posts: 1,607
    YoVita said:

    Stage IV metastatic CRC

    Originally diagnosed as Stage IIIC rectal cancer February 2010.  Lung recurrence after 2 1/2 years June 2012.  In remission/NED since.  I'm doing well.  Life changes - I exercise more.  My diet has always been fairly healthy.  My major life change is in attitude - enjoying life each day!  Thanks for bumping this post Jen.  It should be permanently at the top! 

    I hope you continue to do

    I hope you continue to do well also yo vita! Must have been scary to have the reoccurence but im glad they took care of it!

    Thanks Ron and sandy for those great long term stories!

  • emrose
    emrose Member Posts: 136
    My husband

    1. diagnosed December 9, 2008 at 34 yrs old - stage 3 (but there was a tiny spot near the lung/esophogus that they determined was just acid reflux). In February 2010 a scan showed that acid reflux was bigger and brighter and it turns out it was a met in the lung, making him stage 4. This was disheartening since he had just sufferred through 6mo chemo (while I was pregnant!) 

    2. 3 small mets in the right lung 

    3. Colon surgery, 6mo chemo, lung surgery, supplements/diet changes

    4. He's doing very well! The chemo did cause him to get avascular necrosi in both hips, so he will need them replaced :( our son is amazing - he's 3 yrs old and wouldn't be here if my husband didn't get cancer (we quickly decided to try and get pregnant before he started chemo). His last scan was in June last year and was crystal clear - over 2 years since his lung surgery. Praying for another clear scan this year

    5. Yes yes yes. The chemo didn't work for my husband (though I know it does for many). We found an herbalist, nutritionist, and naturopath. His herbalist specializes in cancer treatment. He cut most sugar from his diet, began juicing and started a ton of supplements. 6mo of chemo made him miserable and the cancer grew the whole time. The supplements make him feel better, give him more energy, and so far no reccurance. Yes, his onc recommended chemo after the lung surgery but also agreed that it may not be effective for him and supported his deciscions to opt out. 

     

    Hope this was helpful. Best of luck to you! 

     

    Laura

  • HANRSC
    HANRSC Member Posts: 21

    It will be 7 years next week
    It will be 7 years next week for me. I have had 3 liver resections and 34 rounds of chemo with long periods of NED in between. I am currently NED for the third time. My quality of life is great except the chemo when i have to do it. I was heavily into mountain biking before cancer and am more into it since. I would even mountain bike 2 days after chemo. I radically changed my diet to mostly vegan with a lot of juicing.

    Hello janderson - Great News!!!!

    CONGATULATIONS!!!!!!!!!!!!!

    Great news I am right behind you nearing 7 years in July...All Praise to God!!!!... only had one initial round of chemo in 2006. Wow!!! I am also heavy in mountain bike riding here in Germany. As far as nutrition you and I are on the same page. I screwed-up with my diet between 2007 and 2009 with too much poultry and fish, as a result a small lung MET, since I only eat fish once or twice a month and poultry twice a year. NED since then...didn't think there were many survivors out there with Stage 4. My main ingredient the entire time is a mixture of yoghurt and mixed with frozen berries daily which is suppose to be good for the liver and immune system. In 2006, my surgeon said he would operate on my liver again; so far I proved him wrong. I used the article below as my guidance -

    Folfox/avastin Success




    I am a 47 year old Aussie who was diagnosed with Stage4+ metastatic bowel cancer in November 2005. I had metastasis’s (tumors) in the bowel (1), lungs (10), liver (7) and lymph nodes (2). The right lobe of the liver was splattered with tumors, the largest being 7cm (3 inches). The left lobe had only one small tumor over lapping from the right junction T4. My CEA, a cancer marker protein was 1560, normal is 5! After the initial shock was over I decided to fight the disease on multiple fronts. I chose to ignore the negative garbage of my oncologist, advising three months to live, and promptly sacked him. There is no place in my life for negative people. The new oncologist sat down with me and plotted a two year survival plan, together, with alternative treatments if the conventional medicine failed. It involved initial radiation treatment (10 days) with five weeks of 5FU, a 40 year old but effective cancer drug. This shrank the tumors about 30%. I then started on a FOLFOX/Avastin treatment, two days a fortnight, with 12 treatments planned. I also played a major role rather than just being a victim. I attended the Petrea King clinic in Australia http://www.petreaking.com.au/ and began to practice at least an hour’s daily meditation and a modified diet. I am a trained food scientist and had always followed a good diet, was very fit, and of normal weight, but realized that early age cancer was probably a failure of the immune system. Accordingly I now eat many immuno stimulating foods. Breakfast is a least a punnet of blueberries, blackberries, raspberries, dark grapes, combined with an active culture yoghurt. Try this and see the increase in the white blood cells, especially neutrophils which target cancer. I drank a daily glass of 3 carrots,2 celery and half a raw beet root. Within two months the lung nodules had disappeared, and ALL tumors had gone within 5 months. We stopped chemotherapy after 8 treatments (21 weeks total) and started surgery aiming for a total cure. Five weeks ago I had the right liver lobe embolised to shrink it and allow the left lobe to grow me a new liver. Last week the bowel was resectioned, and the primary tumor mass removed. There is a lot of debate in the literature about whether to do surgery or not after successful chemotherapy. Detailed pathology revealed some active cancer cells remained in the bowel mass and the lymph, so surgery was essential to ensure the cancers did not come back. In four weeks time the liver will be resectioned, removing all areas which were previously cancerous. I will then finish the remaining 4 treatments of FOLFOX , and finally rejoin the bowel again. Christmas will be wonderful this year! Finally may I say that the love of family and friends has helped me get though this. In December I was in desperate trouble, the bowel was shutting down and only passing black blood. I lost 7kg in three weeks. I was baptized and anointed in oil in front of 300 people in our church. My bowels started working the following day and have worked normally ever since. Being at peace with the Lord has been a major positive in this journey. David


     

    IGWT- CHARLES

  • HANRSC
    HANRSC Member Posts: 21
    Rubyrose said:

    Diagnosed July 2010 stage IV
    My husband diagnosed July 2010 bowel cancer with mets to liver. He had folfox which reduced tumours hopefully for him to have surgery to remove mets in liver. Due to small tumour being in different part of liver where the big tumours were, he had portal vein embolisation which enlarges liver to make surgery possible. Unfortunately the embolisation didn't work. Has had erbitux (cetuximab) which shrunk tumours again. Went to different surgeon who said he could do surgery on liver but needed PVE as before. This one worked. Unfortunately while waiting the timeframe (with no treatment), he had blocked bowel with emergency surgery removing upper bowel and 10cm tumour in December 2011. Now has illeostomy bag. When going in for liver surgery in February this year, surgeon couldn't complete as had spread to stomach lining. Huge disappointment. He went on avastin for three months which worked well at first, then stopped working and CEA levels started going back up. He is now on a new trial drug called regorafenib which appears to be working. He is very tired but otherwise OK and are hoping for improvement in energy levels. Please don't let our story worry you, everybody is different and my husband has aggressive tumours. We have great family and friends support. He is an inspiration to all, will always fight and in a lot of ways we are in a great place. He is determined to get back to golf. We regularly go out to dinner, meet up with friends etc. life is good. Good luck with everything, it is a rollercoaster but you will cope and there are many long term survivors, especially if your husband can have surgery. I would be interested to hear if anybody knows about regorafenib and any more survivors with similar symptoms. We live in Australia.

    Hello Rubyrose

    Maybe this will be of some help http://www.google.com/#hl=en&sugexp=les%3B&gs_rn=1&gs_ri=hp&cp=21&gs_id=1k&xhr=t&q=regorafenib+SURVIVORS&es_nrs=true&pf=p&tbo=d&sclient=psy-ab&oq=regorafenib+SURVIVORS&gs_l=&pbx=1&bav=on.2,or.r_gc.r_pw.r_qf.&bvm=bv.41524429,d.Yms&fp=ef830ce3ada7d871&biw=1600&bih=731

     

    IGWT- Charles

  • HANRSC
    HANRSC Member Posts: 21

    Stage 4 survivor - so far!!:)
    Hi Jen:

    My initial diagnosis was 8/3/11 during a colonoscopy. I had been constipated for a few months and the doctor told me I had IBS and needed more fiber and water. Because I had recently turned 50, he decided to do the colonoscopy. Well, he got about 2" in and found a huge mass. He woke me up saying 'get up - it's bad - you have cancer and need surgery right away". on 8/5/11 I had my Sigmoid Colon removed.
    They at first told me it was Stage 3 and I would need 12 rounds of Chemo. When I saw the Oncologist, he told me to get my Port put in and because they saw "small cysts" on my liver, he wanted a PET scan to be sure. He called with the results - they weren't cysts, they were tumors and I was now Stage 4.
    I had 5 founds of Chemo - FOLFOX with Avastin and then on 12/6/11, they removed my right lobe of my liver as well as my gall bladder. I started back on chemo a few weeks after surgery, but had a problem and was hospitalized for a week. We tried again, another problem -- they found that I had become allergic to the chemo and I had to stop. I have had 3 scans since I stopped in February (2 CT's and 1 PET) and they all show No Evidence of Disease.
    My Oncologist says not to get too excited until I have been "clean for 5 years" and still tells me that my chances are 20% for living 2 - 5 years, but I truly feel that I am healed and have beat this terrible disease!
    I am now trying to figure out how to move forward with life - to see what my "new normal" is. I do think that I need places like this for support as it is hard to find people who truly understand where I am at and where I have been. I would like to help people going thru similar issues as I believe I can help and I think there is a need for this kind of support.

    Hi Semiconlon811

    Hi

    I love your viewpoint of hope but with Stage 4 or any cancer I learned recently to use and understand the word- NED. so I understand your oncologist. I have know a fellow that went almost 15 years  on two different occassions with colorectal Stage 3; it came back, he has now had 10 of NED since...he still has to go every year for a checkup.  Some have had 20 years of NED and then one day...Note my reply above, I am almost a 7 year survivor. However, I agree with your statement,  "I do think that I need places like this for support as it is hard to find people who truly understand where I am at and where I have been. I would like to help people going thru similar issues as I believe I can help and I think there is a need for this kind of support." Please don't take my comment as a negative reply but as a motivator to keep fighting the battle with God's help...as we know all healing comes from him.  Note this recent email.

    Sent: Monday, August 20, 2012 9:04 AM
    Subject: CHEMO DAY
     Cancer is a strange cell. You can go along for years inremission and then oneday it pops its head up again. If you ever have it you will never be free of it. Pray for the day there will be a permanent cure.

    Dear God,







    I pray thatYou will guide someone to find a cure for cancer in 2013                           .






    Amen

    A SMALL REQUEST...All you are asked to do is keep this circulating.














    Even if it's only to one more person.














    In memory of anyone you know who  has been














    struck down by cancer or is still living with it.













     

    IGWT- Charles