Stage 4 survivors

jen2012
jen2012 Member Posts: 1,607 Member
in Colorectal Cancer #1
I know there have been many posts about survivors, but it's discouraging to look through old posts and then realize many have passed on. Was wondering if the stage 4 folks would mind posting? Things I'd love to know are:

1. How long since initial diagnosis?
2. What made you stage 4? My husband has only distant lymph node involvement and it's hard to find any info on those cases.
3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time.
4. What is your quality of life - do you still work, enjoy everything as you always have.
5. Did you make any life changes - diet, supplements, etc.

Thanks very much for anyone that takes the time to share! Also if you know of anyone no longer on the boards that is still surviving, the more stories the better!
«1345

Comments

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #2
    I'm stage 1V, diagnosed Dec.
    I'm stage 1V, diagnosed Dec. 2010...mets to ovaries, spleen, etc. lymph nodes. I did chemo. Folfiri for 10 months...10 month chemo. break, some progression showing again (ugggh) ...tried three months of xeloda, but wasn't effective enough, so I just restarted Folfiri, waiting for Avastin to be approved for me. I had two blood clots in my lungs which is why I went to hospital in the first place. Life is as it was before, work, kids games etc......I get slight side effects, some fatigue, sometimes tummy upset...but not anything that stops me from activities. A month ago I walked the 3 mile climb up Watkins Glen Gorge (gorgeous for anyone who enjoys a fall hike, do it, it's amazing, Finger Lakes area of New York, oh and the wineries too!!!)
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #3
    smokeyjoe said:

    I'm stage 1V, diagnosed Dec.
    I'm stage 1V, diagnosed Dec. 2010...mets to ovaries, spleen, etc. lymph nodes. I did chemo. Folfiri for 10 months...10 month chemo. break, some progression showing again (ugggh) ...tried three months of xeloda, but wasn't effective enough, so I just restarted Folfiri, waiting for Avastin to be approved for me. I had two blood clots in my lungs which is why I went to hospital in the first place. Life is as it was before, work, kids games etc......I get slight side effects, some fatigue, sometimes tummy upset...but not anything that stops me from activities. A month ago I walked the 3 mile climb up Watkins Glen Gorge (gorgeous for anyone who enjoys a fall hike, do it, it's amazing, Finger Lakes area of New York, oh and the wineries too!!!)

    Hi Smokeyjoe - wow that
    Hi Smokeyjoe - wow that ovaries met really threw me ... I thought you were a man! :)

    Thanks for sharing your story - sounds like an awesome hike you took Will have to find out how far a drive that is for us.
    I hope you do well with your new treatment - good luck!
  • abrub
    abrub Member Posts: 2,174 Member
    #4
    Stage IV Appendix Cancer
    Dx'd April, 2007 when metastatic tumor was found encompassing my ovary. Tumor showed to be appendiceal in origin, thus they then removed my healthy looking, tumor filled appendix. Therefore, state IV at dx. Had significant mets and seeding throughout the peritoneum - on the omentum, and on the outside of my colon and ileum.

    Debulking surgeries followed by intraperitoneal (IP) chemo followed by systemic chemo. Treatment completed in April, 2008.

    Been NED/remission since. Longterm prognosis looks excellent.

    Full, normal life; doing anything and everything.

    I can't say I've made many lifestyle changes, tho I've tried to eat healthier and get more exercise.
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #5
    Hi Jen,
    I find those old
    Hi Jen,

    I find those old posts upsetting too. I was really thrown off about Bruins1971. Sad for him and his family but also reminded of what might lie ahead my husband and I.

    Has Mark had surgery? Is the primary tumor gone? Was the tumor in his colon or rectum? Steve had several distant lymph nodes involved. They were removed during hipec. I'm wondering if Mark would be a candidate for hipec. Regardless, he has a lot going for him. He is young and strong and is tolerating treatment well. No organs are involved. He doesn't have other health issues. I would think you guys could be successful in managing it as a chronic disease for many years. (Until they find a cure!).

    Steve has not worked since diagnosis. But he feels well enough that he could. His onc told him that people with "your kind of cancer" don't work. She said they need to save their strength for managing the disease. He seems to have a really good quality of life. He doesn't think much about cancer. He has many hobbies and walks and lifts weights. Even while on chemo he can continue on normaly. Finds himself tired on the day following disconnection. In many ways his quality of life is better now that he has an ileostomy. The ulcerative colitis had him running to the bathroom constantly. Now, it's no longer an issue.

    As far as diet, he cut out sugar and reduced red meat. He takes MCP. Started only a month ago. I asked his onc if he should stop before chemo and she said to continue taking it!!!!!! She is full of surprises.

    Steve and I have only been at this slightly longer than you guys, so we consider ourselves novices. However, from what I've learned, I think you and Mark should be quite hopeful for many good years ahead.

    Good question. I too am looking forwar to many positive responses.

    Chelsea
  • Randy33
    Randy33 Member Posts: 69 Member
    #6
    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
  • Phil64
    Phil64 Member Posts: 838 Member
    #7
    Stage IV Colon Cancer, Stage 1 Testicular Cancer
    Oct 31, 2011: Diagnosed with testicular cancer, surgery followed on 11/1, Radiation treatments over Nov and Dec in 2011.

    Apr 21, 2012: Colonoscopy completed, found colon cancer. Was experiencing symptoms that lead to colonoscopy. Surgery followed. MET in Lung found. Surgery followed. Officially Stage IV colon cancer.

    June through Current: Undergoing FolFox chemo treatments. Currently in treatment 9 of 12 (disconnect will be on Sat 10/20.

    One year since testicular cancer diagnosis.
    Six months since Stage IV colon cancer diagnosis.

    I had one lymph node involvment, but later Lung MET was found which made it Stage IV.

    I'm working throught the chemo. I am losing about 1-1/2 days of work every months because of chemo. So far work has been understanding and supportive.

    Quality of life is good. Seems like chemo weekends are mostly sleep and some working from home. Other than chemo weekends I've been able to do most activities with help from friends and children.

    I've been trying to eat healthier; however the nutritionist didn't want me to lose weight during chemo so she has advised a higher calorie diet during chemo.

    Currently there was a small nodule on my lung. A follow-up scan is scheduled for 11/12. If the nodule grows that could mean another MET and it could mean that the FolFox is not working. Or the met may prove to be inflamation or congestion.

    so far, we all seem to be newbies... Where are the longer term stage IV survivors? I'm guessing that once NED most people forget about this discussion board???? Does anyone in NED status visit the board?
  • swimmer22
    swimmer22 Member Posts: 60
    #8
    My story
    At 46 years old, I was diagnosed Stage IV out of the gate on 12/16/10 so I am approaching the 2 year anniversary. I had rectal cancer with spread to the lung (two small nodules). They attacked my lung mets first with surgery via VATS, followed by 6 Folflox/Avastin treatments. The Folflox also reduced the size of my rectal tumor by 50%.

    Next, I progressed to 28 daily treatments of chemo/radiation, then waited 6 weeks and scanned. Results showed a complete response to the rectal tumor. I followed up with surgery at 10 weeks post chemo/radiation to remove the scar tissue from where the tumor was located. Clear pathology on all lymph nodes harvested as well as the scar tissue removed.

    I then went through 12 Folfiri treatments (preventative mop-up) that ended this past April 2012. I've had nothing more since. So far I am very fortunate as there have been no signs of disease since my PET scan after chemo/radiation. I have a PET scan completed once every 3 months for the first year and if all remains clear, they will stretch them out to once every 4 months, then just twice a year. I also get my CEA and CA19 tested monthly.

    I continued to work through all of my treatments (although I have an office job) only missing a few hours here and there for doctor appointments/chemo. For both surgeries, I was out for two weeks while recovering. I always scheduled chemo for Wednesday afternoon with a disconnect from the 5FU on Friday afternoon, allowing the weekend to recover. Saturday after disconnect was always my most tired/fatigued day.

    Really, no life changes with regard to diet. My life change is the realization to no longer take anything for granted. I try to experience life to the fullest and have grown to appreciate the little things much more. Career, wife, kids and all the realted activities of parenthood fill my days. Best of luck to you and your husband.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #9
    Phil64 said:

    Stage IV Colon Cancer, Stage 1 Testicular Cancer
    Oct 31, 2011: Diagnosed with testicular cancer, surgery followed on 11/1, Radiation treatments over Nov and Dec in 2011.

    Apr 21, 2012: Colonoscopy completed, found colon cancer. Was experiencing symptoms that lead to colonoscopy. Surgery followed. MET in Lung found. Surgery followed. Officially Stage IV colon cancer.

    June through Current: Undergoing FolFox chemo treatments. Currently in treatment 9 of 12 (disconnect will be on Sat 10/20.

    One year since testicular cancer diagnosis.
    Six months since Stage IV colon cancer diagnosis.

    I had one lymph node involvment, but later Lung MET was found which made it Stage IV.

    I'm working throught the chemo. I am losing about 1-1/2 days of work every months because of chemo. So far work has been understanding and supportive.

    Quality of life is good. Seems like chemo weekends are mostly sleep and some working from home. Other than chemo weekends I've been able to do most activities with help from friends and children.

    I've been trying to eat healthier; however the nutritionist didn't want me to lose weight during chemo so she has advised a higher calorie diet during chemo.

    Currently there was a small nodule on my lung. A follow-up scan is scheduled for 11/12. If the nodule grows that could mean another MET and it could mean that the FolFox is not working. Or the met may prove to be inflamation or congestion.

    so far, we all seem to be newbies... Where are the longer term stage IV survivors? I'm guessing that once NED most people forget about this discussion board???? Does anyone in NED status visit the board?

    Does 8-Years Count?
    Did you forget me, Phil?

    8.4 years and still counting...

    So, to answer your question..."Does anyone in NED status visit the board?"

    Answer: I do more than just visit - I actually live here:)

    -Craig
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #10
    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.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #11
    abrub said:

    Stage IV Appendix Cancer
    Dx'd April, 2007 when metastatic tumor was found encompassing my ovary. Tumor showed to be appendiceal in origin, thus they then removed my healthy looking, tumor filled appendix. Therefore, state IV at dx. Had significant mets and seeding throughout the peritoneum - on the omentum, and on the outside of my colon and ileum.

    Debulking surgeries followed by intraperitoneal (IP) chemo followed by systemic chemo. Treatment completed in April, 2008.

    Been NED/remission since. Longterm prognosis looks excellent.

    Full, normal life; doing anything and everything.

    I can't say I've made many lifestyle changes, tho I've tried to eat healthier and get more exercise.

    Wow - good for you! Thanks
    Wow - good for you! Thanks for sharing and I hope your remission continues for many years!
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #12
    Chelsea71 said:

    Hi Jen,
    I find those old
    Hi Jen,

    I find those old posts upsetting too. I was really thrown off about Bruins1971. Sad for him and his family but also reminded of what might lie ahead my husband and I.

    Has Mark had surgery? Is the primary tumor gone? Was the tumor in his colon or rectum? Steve had several distant lymph nodes involved. They were removed during hipec. I'm wondering if Mark would be a candidate for hipec. Regardless, he has a lot going for him. He is young and strong and is tolerating treatment well. No organs are involved. He doesn't have other health issues. I would think you guys could be successful in managing it as a chronic disease for many years. (Until they find a cure!).

    Steve has not worked since diagnosis. But he feels well enough that he could. His onc told him that people with "your kind of cancer" don't work. She said they need to save their strength for managing the disease. He seems to have a really good quality of life. He doesn't think much about cancer. He has many hobbies and walks and lifts weights. Even while on chemo he can continue on normaly. Finds himself tired on the day following disconnection. In many ways his quality of life is better now that he has an ileostomy. The ulcerative colitis had him running to the bathroom constantly. Now, it's no longer an issue.

    As far as diet, he cut out sugar and reduced red meat. He takes MCP. Started only a month ago. I asked his onc if he should stop before chemo and she said to continue taking it!!!!!! She is full of surprises.

    Steve and I have only been at this slightly longer than you guys, so we consider ourselves novices. However, from what I've learned, I think you and Mark should be quite hopeful for many good years ahead.

    Good question. I too am looking forwar to many positive responses.

    Chelsea

    I know it's heartbreaking,
    I know it's heartbreaking, when I realized some of these young vibrant people passed away I felt so sad - like I knew them.

    He has not yet had surgery. They want to do the chemo for a few months - hopefully surgery in January or February. It is rectal. He has been tolerating chemo very well and he seems so healthy that it's almost hard to believe.

    I'm still waiting to hear back from the doctor about MCP and some other vitamins.

    I hope Steve did well with him chemo this week.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #13
    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

    Just the kind of stories I
    Just the kind of stories I wanted to see - thanks so much for sharing! 3 hours of exercise a day? Yikes! I'm glad you are doing so well!
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #14
    Phil64 said:

    Stage IV Colon Cancer, Stage 1 Testicular Cancer
    Oct 31, 2011: Diagnosed with testicular cancer, surgery followed on 11/1, Radiation treatments over Nov and Dec in 2011.

    Apr 21, 2012: Colonoscopy completed, found colon cancer. Was experiencing symptoms that lead to colonoscopy. Surgery followed. MET in Lung found. Surgery followed. Officially Stage IV colon cancer.

    June through Current: Undergoing FolFox chemo treatments. Currently in treatment 9 of 12 (disconnect will be on Sat 10/20.

    One year since testicular cancer diagnosis.
    Six months since Stage IV colon cancer diagnosis.

    I had one lymph node involvment, but later Lung MET was found which made it Stage IV.

    I'm working throught the chemo. I am losing about 1-1/2 days of work every months because of chemo. So far work has been understanding and supportive.

    Quality of life is good. Seems like chemo weekends are mostly sleep and some working from home. Other than chemo weekends I've been able to do most activities with help from friends and children.

    I've been trying to eat healthier; however the nutritionist didn't want me to lose weight during chemo so she has advised a higher calorie diet during chemo.

    Currently there was a small nodule on my lung. A follow-up scan is scheduled for 11/12. If the nodule grows that could mean another MET and it could mean that the FolFox is not working. Or the met may prove to be inflamation or congestion.

    so far, we all seem to be newbies... Where are the longer term stage IV survivors? I'm guessing that once NED most people forget about this discussion board???? Does anyone in NED status visit the board?

    Phil - I hope the nodule is
    Phil - I hope the nodule is nothing. My husband too had stage 1 testicular - 13 yrs ago. Some docs think this tumor may have been from that radiation. Who knows. He also is working through chemo. Takes the day off for the treatment - since so far it's been an all day thing! So aggravating that there is so much sitting around and waiting before they get started!

    Good luck with your scan, I will pray for good results!

    Craig - I love your stories and the others like you that continue to share after all this time! True inspirations!!
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #15
    swimmer22 said:

    My story
    At 46 years old, I was diagnosed Stage IV out of the gate on 12/16/10 so I am approaching the 2 year anniversary. I had rectal cancer with spread to the lung (two small nodules). They attacked my lung mets first with surgery via VATS, followed by 6 Folflox/Avastin treatments. The Folflox also reduced the size of my rectal tumor by 50%.

    Next, I progressed to 28 daily treatments of chemo/radiation, then waited 6 weeks and scanned. Results showed a complete response to the rectal tumor. I followed up with surgery at 10 weeks post chemo/radiation to remove the scar tissue from where the tumor was located. Clear pathology on all lymph nodes harvested as well as the scar tissue removed.

    I then went through 12 Folfiri treatments (preventative mop-up) that ended this past April 2012. I've had nothing more since. So far I am very fortunate as there have been no signs of disease since my PET scan after chemo/radiation. I have a PET scan completed once every 3 months for the first year and if all remains clear, they will stretch them out to once every 4 months, then just twice a year. I also get my CEA and CA19 tested monthly.

    I continued to work through all of my treatments (although I have an office job) only missing a few hours here and there for doctor appointments/chemo. For both surgeries, I was out for two weeks while recovering. I always scheduled chemo for Wednesday afternoon with a disconnect from the 5FU on Friday afternoon, allowing the weekend to recover. Saturday after disconnect was always my most tired/fatigued day.

    Really, no life changes with regard to diet. My life change is the realization to no longer take anything for granted. I try to experience life to the fullest and have grown to appreciate the little things much more. Career, wife, kids and all the realted activities of parenthood fill my days. Best of luck to you and your husband.

    That's great swimmer. I
    That's great swimmer. I hope my husband has a good response too! May yours continue for a long long time!
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #16
    janderson1964 said:

    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.

    J - that is great! Like
    J - that is great! Like Craig, you are an inspiration. Thank you for sharing your story.
  • Phil64
    Phil64 Member Posts: 838 Member
    #17
    Sundanceh said:

    Does 8-Years Count?
    Did you forget me, Phil?

    8.4 years and still counting...

    So, to answer your question..."Does anyone in NED status visit the board?"

    Answer: I do more than just visit - I actually live here:)

    -Craig

    No, I didn't forget you craig.
    However, I'm wondering if there are lots more experiencing NED that we are not hearing from??? I hope we see a lot of responses to this thread. :-)
  • Rubyrose
    Rubyrose Member Posts: 47
    #18
    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.
  • jjaj133
    jjaj133 Member Posts: 867 Member
    #19
    1. How long since initial
    1. How long since initial diagnosis? 12 years!!
    2. What made you stage 4? My husband has only distant lymph node involvement and it's hard to find any info on those cases.
    I had mets to the liver after 5 years clear.

    3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time.
    after a colon resection i was clear for 5 years. It came back in the liver. chemo, resection and chemo. 1 year later, back again. liver resection and Xeloda for 9 months. I am currently NED 20 months as of today. I am chemo free for 1 year.
    4. What is your quality of life - do you still work, enjoy everything as you always have. I have the same quality as prior to all this. The only difference is the discomfort from 3 major surgeries.
    5. Did you make any life changes - diet, supplements, etc.
    Not really, I pretty much think if its gonna come back, there is not a whole lot you can do. I do try and keep active, and I pray a lot. I am 67 and I know I am so fortunate to have made it this far. Many of my friends and family have not. But I am going to suck up every minute of life I can. I am retired and very, aware how blessed I have been. ( I have a bit of neuropathy in my feet. such a small price to pay. )
    Jen, there are so many stories,the thread that connects us all is that
    we seem to get doses of hope and determination, along with the chemo.
    Stage 4 does not mean you are doomed. It means you might have to fight harder and longer. It does not mean you are down for the count.
    God bless, Judy
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #20
    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.

    Hi rubyrose...I'm sorry for
    Hi rubyrose...I'm sorry for your husbands problems. I will pray for good outcome with the new drug. Why don't you post new topic about that ...not many will see your question about it here and I think I remember reading that someone here has been on it.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #21
    jjaj133 said:

    1. How long since initial
    1. How long since initial diagnosis? 12 years!!
    2. What made you stage 4? My husband has only distant lymph node involvement and it's hard to find any info on those cases.
    I had mets to the liver after 5 years clear.

    3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time.
    after a colon resection i was clear for 5 years. It came back in the liver. chemo, resection and chemo. 1 year later, back again. liver resection and Xeloda for 9 months. I am currently NED 20 months as of today. I am chemo free for 1 year.
    4. What is your quality of life - do you still work, enjoy everything as you always have. I have the same quality as prior to all this. The only difference is the discomfort from 3 major surgeries.
    5. Did you make any life changes - diet, supplements, etc.
    Not really, I pretty much think if its gonna come back, there is not a whole lot you can do. I do try and keep active, and I pray a lot. I am 67 and I know I am so fortunate to have made it this far. Many of my friends and family have not. But I am going to suck up every minute of life I can. I am retired and very, aware how blessed I have been. ( I have a bit of neuropathy in my feet. such a small price to pay. )
    Jen, there are so many stories,the thread that connects us all is that
    we seem to get doses of hope and determination, along with the chemo.
    Stage 4 does not mean you are doomed. It means you might have to fight harder and longer. It does not mean you are down for the count.
    God bless, Judy

    Yay! Great news!
    Yay! Great news! Congrats...I hope you are celebrating this weekend. I know there is hope thanks to the Internet! We walked out of that drs office several weeks ago after hearing the 2 yr timeline and felt that was it. I hate that drs do that. Our youngest just turned 1 so hopefully my husband will have the great response that many of you have!

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