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Stage 4 survivors

124

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.