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Stage 4 survivors

24

Comments

  • semicolon811
    semicolon811 Member Posts: 2
    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.
  • mstults
    mstults Member Posts: 1
    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

    Glad you're doing so well
    That reinforces my hope. I was diagnosed in June this year with colon cancer and mets to liver. Had colon resection and surgeon said liver is eaten up. Started folfox in July. After 6 treatments the ct showed all tumors are shrinking. The largest was 9 cm to start and was 6 cm at the ct after 6 treatments. The Cancer Protein marker went from 303 at the beginning to 9.7 after 6 treatments. Dr. said I was tolerating so well that he added Avastin with the 7th treatment. That was last week. It increased the fatigue but if it helps I can tolerate it. Other then the fatigue the neuropathy is the worst side effect for me. But I can tolerate that too to live. Dr. says we have a good start in the fight.
  • Jen
    Stage 4 diagnosed 4/11/12 - rectal tumor,1 liver met. 5 weeks if chemoradiation, 4 weeks off, surgery 6 hours - removed rectal tumor, liver met, and gallbladder. Folfox started 4 weeks later, just finished round 8 of 12. Tired of chemo, all of the usual side effects, the cold sensitivity has gradually gotten worse. Have not been hospitalized any time during chemo or have not missed a dose. 4 more to go, should be finished by dec 17. I have not changed my diet too much. I was a big coke drinker before all this and now can't drink it every other week. I am not working now because I am a nurse on med/surg and can't be around sick people with my WBC so low. I have 4 children - 2 are married and have twin 15 year old boys that are in the high school band. I do go to every football game Friday night to watch them march. Every other week is usually good and feeling good. I have had 2 CT scans that have been clear and next one is in dec. Hope your husband is doing well.
    Sandy :)
  • sammer4u
    sammer4u Member Posts: 37
    My story
    1. How long since initial diagnosis? Diagnosed November 4, 2011 had surgery to remove tumor.
    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. Had tumors in the Liver.
    3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time. Had 12 treatments of chemo, folfox, oxiplatin, a couple of other mixtures.
    4. What is your quality of life - do you still work, enjoy everything as you always have. Slowed me down during surgeries, but for the most part worked as much as I could.. office job helped.. was out for 2½ - 3 weeks with surgery recovery. Still try to do what I used to do with a few exceptions, weight restrictions, and other stuff. Miss hot tubing it and swimming, and bowling.. but eventually I will get back to it.
    5. Did you make any life changes - diet, supplements, etc. No life changes, not diet changes, no supplements... continued on with normal diet when I could.

    My life was on hold for about a year. I had first surgery when I went to the hospital in pain, and sick.. found out there was blockage in the colon, removed it.. and found out I had a colostomy. Life changed a bit, but never looked back, never felt bad, angry, just lived life to the best I could and always looked forward and positive. Felt the Oncologist and staff knew what to do and the best for me. Liver Specialist felt she got all the cancer/tumors out and I should be good to go! Just one last surgery to do the take down (colostomy reversal) in November and then it is life as usual, with a little less of the right side of my liver. I cannot wait for a hot tub, swimming, returning to my normal routine stuff! Been a hell of a year, but from what I have seen.. I am glad I am on this side of the dirt. Had a good friend die from Colon Cancer and was diagnosed a week before me. Saw a few die from cancer while I have been having my fun, but I think my positive attitude and dedicated girlfriend (now fiance) helped a ton!!!
  • cinreag
    cinreag Member Posts: 154
    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........

    Hi, Buzzard. I was beginning
    Hi, Buzzard. I was beginning to think I was the only person who had opted to discontinue treatment. Still waiting to see if my "rare form" of cancer is going to met to my liver or not. Will be 3 years in May 2013.
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    Fighting fire with fire
    Hi Jen,

    I was dx'd in May 2010, my Stage IV is due to one met to the right lung and (at the time of dx) too many and too large of mets in the liver to count. I did the 6 weeks of radiation while getting chemo. My white blood cell count bottomed out in Sept. 2010 and put me in the hospital. Treatment started again after about a month, then the WBC got too low again in April 2011 and I went two months without treatment. When I started again in June, my CEA had soared to 2000 and blood work said that my liver was about a week to 10 days away from failure. I've been on chemo ever since only missing a week twice due to vacation in March and a hospital stay with pneumonia at the end of August, beginning of September.

    I have to admit that many of the things I enjoy doing I've had to stop or pull back on to a large degree. I love cooking and Sunday was the first time I was able to do so since before going in the hospital in August. I've been on disability due to spinal damage since 1999, so I've filled my time wallpapering my office with academic diplomas. I had to end my Masters in History program one semester short because I had to move from Arizona to Utah. I'm currently pursuing a third Bachelors (this one in Philosophy) but had to put the current semester off due to my health. I intend to finish that one in December of next year and then say farewell to the Ivory Halls of Academia. I'm just getting too tired to maintain classes and I have my own writing that I want to finish and try to get published (I am planning on publishing my first novel as an eBook on Amazon.com by the end of this year.)

    Finally, I have had to make some adjustments to my diet according to the blood draws every two weeks. And I'm on blood thinners right now because of blood clots in my lungs, so I've had to curtail foods with Potassium while trying to consume more with Magnesium because that level is dangerously low.

    Ray/Doc
  • biglaur
    biglaur Member Posts: 72
    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...
  • PatchAdams
    PatchAdams Member Posts: 271
    For semicolon811
    Your onc said you have a 20% chance of living 2-5 years? MD Anderson disagrees when liver mets are surgically removed.

    Solitary Colorectal Liver Metastasis Resection Determines Outcome FREE
    Thomas A. Aloia, MD; Jean-Nicolas Vauthey, MD; Evelyne M. Loyer, MD; Dario Ribero, MD; Timothy M. Pawlik, MD, MPH; Steven H. Wei, MS, PA-C; Steven A. Curley, MD; Daria Zorzi, MD; Eddie K. Abdalla, MD


    Researchers at M.D. Anderson Cancer Center at the University of Texas prospectively studied patients with a first solitary liver metastasis who were treated either with hepatic resection or radiofrequency ablation. ….

    The present study shows an 80% 3-year survival rate (and a 71% 5-year survival rate) after HR and well-established data showing 10- and 20-year survivors after HR of solitary and multiple metastases, even without adjuvant chemotherapy.

    http://archsurg.ama-assn.org/cgi/content/abstract/141/5/460
  • jen2012
    jen2012 Member Posts: 1,607
    Chelsea71 said:

    None of my business,
    None of my business, however, if Sloan is an option for you guys, I would jump on it. I've noticed that the people who are involved with Sloan and MD Anderson etc. seem to do very well. My cousin was diagnosed with having a fairly rare cancer (leiomyosarcoma) by an oncologist in Syracuse. She was told to go home and enjoy her last few months with her children. (she was 40 with a one year old and a three year old). A friend convinced her to visit Sloan. This was over seven years ago. She has had many surgeries and challenges but it is amazing what they've done for her. Sloan oncologists are the best of the best. I would love to have access to such a great hospital. It's hard isn't it? I run into this a lot. Ultimately, it's Mark's (in my case Steve's) decision as to the details of his course of treatment and it's very important that he is comfortable with the decisions that need to be made. I often wish it was me that had the cancer (instead of Steve) as then I would be able to do everything my way! It is nice though that Mark likes and trust his current onc. There seems to be a lot of people who are stuck with a doctor they don't like.

    Take care,

    Chelsea

    PS - yes, Steves's treatment went really well on Wed. No problems have developed yet. Lots of energy. No nausea etc. Hopefully it will continue.

    I know! I'm still trying to
    I know! I'm still trying to convince him - he feels that everything is going well so far where he is and there's no reason to do anything else at this point. We met another man in the chemo room yesterday who is 2 yrs out and has been on chemo the whole time. Mets to lungs. He had his colon surgery at another hospital yrs ago and never had even a temp colosomy, has been doing chemo here, no surgery for lungs, but he looks great and says "it's no big deal"

    Glad Steve's treatments are going well.
  • jen2012
    jen2012 Member Posts: 1,607

    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.

    Amazing story - thanks for
    Amazing story - thanks for sharing!! Keep up that exercise!

    Did your oncologist prescribe the celebrex?
  • jen2012
    jen2012 Member Posts: 1,607
    tanstaafl said:

    experimental: LEF, orthomolecular supplements and Japanese chemo
    1. Diagnosed March, 2010 after 25% weight lost in 3-4 weeks and near total colon obstruction.
    2. Distant lymph nodes, para aortic cluster. Unresolved "thingies" lungs and liver with questionable or minor activity. Mesenteric fat invaded and partially unresectable-couldn't get clean margins with presumable seeding to peritoneum, all dead/necrosed at time of surgery by massive granulocyte attack following cimetidine etc.
    3. Permanent, massive immunological treatment from 2nd-3rd day of diagnosis, pallative surgery 4 weeks after dx, permanent immunochemotherapy 6 weeks after surgery. 2nd surgery for para aortic nodes 13.5 months after dx.
    4. High quality of life - more physically fit, not chemo sick, not symptomatic.
    5. Massive reduction of carbs and bad fats, improved diet with liver, more vegetables and herbs, lots of specialized anticancer supplements and lots of IV vitamin C (over 400 large vit C infusions). Use targeted generic drugs and supplements **not** FDA approved for cancer. Still no oxaliplatin, irinotecan, avastin, or erbitux.

    Thanks Tans - I always
    Thanks Tans - I always appreciate your info...you have done your homework! I hope your wife continues to do well.
  • jen2012
    jen2012 Member Posts: 1,607

    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 - glad you are doing
    Hi - glad you are doing well! I love your attitude.

    I hope you do stick around - to give support and receive support!
  • jen2012
    jen2012 Member Posts: 1,607

    Jen
    Stage 4 diagnosed 4/11/12 - rectal tumor,1 liver met. 5 weeks if chemoradiation, 4 weeks off, surgery 6 hours - removed rectal tumor, liver met, and gallbladder. Folfox started 4 weeks later, just finished round 8 of 12. Tired of chemo, all of the usual side effects, the cold sensitivity has gradually gotten worse. Have not been hospitalized any time during chemo or have not missed a dose. 4 more to go, should be finished by dec 17. I have not changed my diet too much. I was a big coke drinker before all this and now can't drink it every other week. I am not working now because I am a nurse on med/surg and can't be around sick people with my WBC so low. I have 4 children - 2 are married and have twin 15 year old boys that are in the high school band. I do go to every football game Friday night to watch them march. Every other week is usually good and feeling good. I have had 2 CT scans that have been clear and next one is in dec. Hope your husband is doing well.
    Sandy :)

    Hi Sandy - your child
    Hi Sandy - your child situation sounds similar to ours - oldest is 15, the youngest is 1!! But you look younger than us....I was 43 when I had the baby- yikes!
    I'm glad you are doing well - I hope it continues. 4 more treatments - You can do it!
  • jen2012
    jen2012 Member Posts: 1,607
    sammer4u said:

    My story
    1. How long since initial diagnosis? Diagnosed November 4, 2011 had surgery to remove tumor.
    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. Had tumors in the Liver.
    3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time. Had 12 treatments of chemo, folfox, oxiplatin, a couple of other mixtures.
    4. What is your quality of life - do you still work, enjoy everything as you always have. Slowed me down during surgeries, but for the most part worked as much as I could.. office job helped.. was out for 2½ - 3 weeks with surgery recovery. Still try to do what I used to do with a few exceptions, weight restrictions, and other stuff. Miss hot tubing it and swimming, and bowling.. but eventually I will get back to it.
    5. Did you make any life changes - diet, supplements, etc. No life changes, not diet changes, no supplements... continued on with normal diet when I could.

    My life was on hold for about a year. I had first surgery when I went to the hospital in pain, and sick.. found out there was blockage in the colon, removed it.. and found out I had a colostomy. Life changed a bit, but never looked back, never felt bad, angry, just lived life to the best I could and always looked forward and positive. Felt the Oncologist and staff knew what to do and the best for me. Liver Specialist felt she got all the cancer/tumors out and I should be good to go! Just one last surgery to do the take down (colostomy reversal) in November and then it is life as usual, with a little less of the right side of my liver. I cannot wait for a hot tub, swimming, returning to my normal routine stuff! Been a hell of a year, but from what I have seen.. I am glad I am on this side of the dirt. Had a good friend die from Colon Cancer and was diagnosed a week before me. Saw a few die from cancer while I have been having my fun, but I think my positive attitude and dedicated girlfriend (now fiance) helped a ton!!!

    Hi Sam - you do sound like
    Hi Sam - you do sound like you have a great attitude. I'm sorry about your friend. Congrats on the upcoming wedding and continue to stay well!
  • jen2012
    jen2012 Member Posts: 1,607
    Doc_Hawk said:

    Fighting fire with fire
    Hi Jen,

    I was dx'd in May 2010, my Stage IV is due to one met to the right lung and (at the time of dx) too many and too large of mets in the liver to count. I did the 6 weeks of radiation while getting chemo. My white blood cell count bottomed out in Sept. 2010 and put me in the hospital. Treatment started again after about a month, then the WBC got too low again in April 2011 and I went two months without treatment. When I started again in June, my CEA had soared to 2000 and blood work said that my liver was about a week to 10 days away from failure. I've been on chemo ever since only missing a week twice due to vacation in March and a hospital stay with pneumonia at the end of August, beginning of September.

    I have to admit that many of the things I enjoy doing I've had to stop or pull back on to a large degree. I love cooking and Sunday was the first time I was able to do so since before going in the hospital in August. I've been on disability due to spinal damage since 1999, so I've filled my time wallpapering my office with academic diplomas. I had to end my Masters in History program one semester short because I had to move from Arizona to Utah. I'm currently pursuing a third Bachelors (this one in Philosophy) but had to put the current semester off due to my health. I intend to finish that one in December of next year and then say farewell to the Ivory Halls of Academia. I'm just getting too tired to maintain classes and I have my own writing that I want to finish and try to get published (I am planning on publishing my first novel as an eBook on Amazon.com by the end of this year.)

    Finally, I have had to make some adjustments to my diet according to the blood draws every two weeks. And I'm on blood thinners right now because of blood clots in my lungs, so I've had to curtail foods with Potassium while trying to consume more with Magnesium because that level is dangerously low.

    Ray/Doc

    I know you haven't had an
    I know you haven't had an easy time Ray, but I hope things turn around for you. You are a fighter!

    I can't wait to hear that your book is published - saving a space on my kindle for it, so please let us know!
  • jen2012
    jen2012 Member Posts: 1,607
    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...

    Awesome story Laur and
    Awesome story Laur and beautiful grandbaby! Enjoy him and your good health! Thanks for sharing your story.
  • PatchAdams
    PatchAdams Member Posts: 271

    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.

    See my reply to you further down Semicolon811
    Here's another link to disagree with your onc

    http://www2.mdanderson.org/depts/oncolog/articles/11/4-5-aprmay/4-5-11-2.html

    The results of the study were recently reported in the Journal of Clinical Oncology. The 3- and 5-year overall survival rates were 67% and 51%, respectively, for patients who underwent at least the first stage of two-stage resection versus 41% and 15%, respectively, for patients who underwent chemotherapy only. The 3- and 5-year overall survival rates were significantly higher (84% and 64%, respectively) among patients who underwent the second stage of resection than among those who underwent the first stage only.
  • Nana b
    Nana b Member Posts: 3,030

    For semicolon811
    Your onc said you have a 20% chance of living 2-5 years? MD Anderson disagrees when liver mets are surgically removed.

    Solitary Colorectal Liver Metastasis Resection Determines Outcome FREE
    Thomas A. Aloia, MD; Jean-Nicolas Vauthey, MD; Evelyne M. Loyer, MD; Dario Ribero, MD; Timothy M. Pawlik, MD, MPH; Steven H. Wei, MS, PA-C; Steven A. Curley, MD; Daria Zorzi, MD; Eddie K. Abdalla, MD


    Researchers at M.D. Anderson Cancer Center at the University of Texas prospectively studied patients with a first solitary liver metastasis who were treated either with hepatic resection or radiofrequency ablation. ….

    The present study shows an 80% 3-year survival rate (and a 71% 5-year survival rate) after HR and well-established data showing 10- and 20-year survivors after HR of solitary and multiple metastases, even without adjuvant chemotherapy.

    http://archsurg.ama-assn.org/cgi/content/abstract/141/5/460

    1. How long since initial
    1. How long since initial diagnosis?

    4 years come November, DT November 2008

    2. What made you stage 4? Liver Mets

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

    Folfox - every other week for 6 months

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

    My body aches more, and I have had 3 hernias so that has slowed me down some.

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

    Yes, I try and eat all that will help my immune system, D3, Calcium, Tumeric, milk thistle, green tea, berries, greens, a couple other things that aren't in front of me right now.

    I had pain in my stomach, felt like big time cramping one weekend when I was at the beach, I came home in pain went to a local doctor, as I had just moved here. She told me it was gas and IBS for 2 months, to go home and do sit ups. I finally demanded a colonoscoy and had to to through extreme measures to get it. Tumor in ascending colon, 7 out of like 14 lymph nodes affected, stage 3, then later Stage 4 with liver mets. Had a liver resection, 60%. I have been NED since, but last January my CEA stated going up. We did a mild Xeloda which I still have 1.5 months to go, but CEA should be at normal range. It had dropped drastically to 8 the last time I got checked. THere wasn't an evidence of cancer on my CT, PET or Colonoscopy, but we figured better be safe then sorry. Not sure if that CEA climb makes me start my 5 year again but,I'm not worrying about it.

    My motto is, fight, fight, I haven't been afraid since day one. Maybe shock, but I have just been dealing with it, staying out of stressful situations, and moving on....
  • joemetz
    joemetz Member Posts: 493
    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

    thank you Randy
    Randy

    I like... I mean, I LOVE your simple six steps.

    I am approaching my year anniversary of joining this colon cancer club... and I and making my goals for how/what I am going to do in this new year.

    I plan to be a copy cat of your list.

    thank you!

    JoeMetz
  • joemetz
    joemetz Member Posts: 493
    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

    amen judy
    Amen Judy!

    Your post here is awesome!!

    You are inspiration for me and many others.

    I'm coming up on a year since this battle began... and honestly, I feel better than I have felt in over 5 years.

    crazy... as I certainly didn't think i had a flying hope to feel this good, back when I was in the throws of my first 30 chemo treatments. But, its working.

    thanks for sharing judy!

    U Rock!

    Many blessings to you.

    joe
  • joemetz
    joemetz Member Posts: 493
    stage IV "fighter"
    Greetings

    thank you for leading this post. I really needed to read everyone's story.

    I'm coming up on my one year since dx'd. (November 26, 2011)
    I felt like crap for a long time, and when dx'd I was anemic and they found colon cancer in the transverse colon, which we now know what caused by my radiation treatments for my non-hodgkins lymphoma battle from 1989.

    the large tumor was in the transverse colon, only 4mm from the Liver.
    the tumor "started" on the outside of the colon, and grew inward and spread to the liver.
    so my 'stage IV' might be a bit different than others.

    I've had the bag, the port and had 26 treatments of Folfox6 and Erbitux.
    had surgery to remove the bag, and they cut out the colon tumor and about 10" of the colon

    the liesons in my liver went from 30+ leisons a year ago... and as of July I had only six.!

    In September I restarted chemo treatments (after healing from the surgery for 8 weeks) and now I'm on Xeloda and Avastin. And, they are calling this "maintenance chemo".

    I have six weeks of treatments under my belt and begin week 7 tomorrow morning.

    Quality of life...
    honestly, I feel better today than I have felt in over 5 years.
    its strange. really strange. But i feel like this is WORKING!

    I was eating really healthy for the three months of the summer... but now on Xeloda and my nausea feels like hunger pains and I crave starching foods. (bread, rice, potatoes, veggies) but not much appetite for fruits right now.

    I'm back working full time (I had taken over 5 months off work).

    I have a problem avoiding the stress... but working hard to make sure I don't get dragged too deep into the stress of work and life.

    I've been very frustrated with my faith, and I plan to work on that this fall and winter.
    It's hard not to question God on his plan, and the "why me? Pitty party" seems to raise its head to me way too often.

    thanks again... and i wish the best for everyone here.

    joe
  • jen2012
    jen2012 Member Posts: 1,607
    joemetz said:

    stage IV "fighter"
    Greetings

    thank you for leading this post. I really needed to read everyone's story.

    I'm coming up on my one year since dx'd. (November 26, 2011)
    I felt like crap for a long time, and when dx'd I was anemic and they found colon cancer in the transverse colon, which we now know what caused by my radiation treatments for my non-hodgkins lymphoma battle from 1989.

    the large tumor was in the transverse colon, only 4mm from the Liver.
    the tumor "started" on the outside of the colon, and grew inward and spread to the liver.
    so my 'stage IV' might be a bit different than others.

    I've had the bag, the port and had 26 treatments of Folfox6 and Erbitux.
    had surgery to remove the bag, and they cut out the colon tumor and about 10" of the colon

    the liesons in my liver went from 30+ leisons a year ago... and as of July I had only six.!

    In September I restarted chemo treatments (after healing from the surgery for 8 weeks) and now I'm on Xeloda and Avastin. And, they are calling this "maintenance chemo".

    I have six weeks of treatments under my belt and begin week 7 tomorrow morning.

    Quality of life...
    honestly, I feel better today than I have felt in over 5 years.
    its strange. really strange. But i feel like this is WORKING!

    I was eating really healthy for the three months of the summer... but now on Xeloda and my nausea feels like hunger pains and I crave starching foods. (bread, rice, potatoes, veggies) but not much appetite for fruits right now.

    I'm back working full time (I had taken over 5 months off work).

    I have a problem avoiding the stress... but working hard to make sure I don't get dragged too deep into the stress of work and life.

    I've been very frustrated with my faith, and I plan to work on that this fall and winter.
    It's hard not to question God on his plan, and the "why me? Pitty party" seems to raise its head to me way too often.

    thanks again... and i wish the best for everyone here.

    joe

    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.
  • jen2012
    jen2012 Member Posts: 1,607
    Nana b said:

    1. How long since initial
    1. How long since initial diagnosis?

    4 years come November, DT November 2008

    2. What made you stage 4? Liver Mets

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

    Folfox - every other week for 6 months

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

    My body aches more, and I have had 3 hernias so that has slowed me down some.

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

    Yes, I try and eat all that will help my immune system, D3, Calcium, Tumeric, milk thistle, green tea, berries, greens, a couple other things that aren't in front of me right now.

    I had pain in my stomach, felt like big time cramping one weekend when I was at the beach, I came home in pain went to a local doctor, as I had just moved here. She told me it was gas and IBS for 2 months, to go home and do sit ups. I finally demanded a colonoscoy and had to to through extreme measures to get it. Tumor in ascending colon, 7 out of like 14 lymph nodes affected, stage 3, then later Stage 4 with liver mets. Had a liver resection, 60%. I have been NED since, but last January my CEA stated going up. We did a mild Xeloda which I still have 1.5 months to go, but CEA should be at normal range. It had dropped drastically to 8 the last time I got checked. THere wasn't an evidence of cancer on my CT, PET or Colonoscopy, but we figured better be safe then sorry. Not sure if that CEA climb makes me start my 5 year again but,I'm not worrying about it.

    My motto is, fight, fight, I haven't been afraid since day one. Maybe shock, but I have just been dealing with it, staying out of stressful situations, and moving on....

    Hi nana b...thanks for
    Hi nana b...thanks for sharing. I hope the xeloda works well!
  • Chelsea71
    Chelsea71 Member Posts: 1,169
    joemetz said:

    stage IV "fighter"
    Greetings

    thank you for leading this post. I really needed to read everyone's story.

    I'm coming up on my one year since dx'd. (November 26, 2011)
    I felt like crap for a long time, and when dx'd I was anemic and they found colon cancer in the transverse colon, which we now know what caused by my radiation treatments for my non-hodgkins lymphoma battle from 1989.

    the large tumor was in the transverse colon, only 4mm from the Liver.
    the tumor "started" on the outside of the colon, and grew inward and spread to the liver.
    so my 'stage IV' might be a bit different than others.

    I've had the bag, the port and had 26 treatments of Folfox6 and Erbitux.
    had surgery to remove the bag, and they cut out the colon tumor and about 10" of the colon

    the liesons in my liver went from 30+ leisons a year ago... and as of July I had only six.!

    In September I restarted chemo treatments (after healing from the surgery for 8 weeks) and now I'm on Xeloda and Avastin. And, they are calling this "maintenance chemo".

    I have six weeks of treatments under my belt and begin week 7 tomorrow morning.

    Quality of life...
    honestly, I feel better today than I have felt in over 5 years.
    its strange. really strange. But i feel like this is WORKING!

    I was eating really healthy for the three months of the summer... but now on Xeloda and my nausea feels like hunger pains and I crave starching foods. (bread, rice, potatoes, veggies) but not much appetite for fruits right now.

    I'm back working full time (I had taken over 5 months off work).

    I have a problem avoiding the stress... but working hard to make sure I don't get dragged too deep into the stress of work and life.

    I've been very frustrated with my faith, and I plan to work on that this fall and winter.
    It's hard not to question God on his plan, and the "why me? Pitty party" seems to raise its head to me way too often.

    thanks again... and i wish the best for everyone here.

    joe

    You look great, Joe.
    You look great, Joe. Congratulations on your return to work. I admire the way you're not letting this disease take over your life. It's great that your body responds so well to the chemo. My husband, Steve, was pleased to hear about your liver met reduction. He just started chemo (again) two weeks ago as liver lesions developed. Good luck at work. Don't let the stress get to you. Thanks for sharing your story.

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

    stage IV "fighter"
    Greetings

    thank you for leading this post. I really needed to read everyone's story.

    I'm coming up on my one year since dx'd. (November 26, 2011)
    I felt like crap for a long time, and when dx'd I was anemic and they found colon cancer in the transverse colon, which we now know what caused by my radiation treatments for my non-hodgkins lymphoma battle from 1989.

    the large tumor was in the transverse colon, only 4mm from the Liver.
    the tumor "started" on the outside of the colon, and grew inward and spread to the liver.
    so my 'stage IV' might be a bit different than others.

    I've had the bag, the port and had 26 treatments of Folfox6 and Erbitux.
    had surgery to remove the bag, and they cut out the colon tumor and about 10" of the colon

    the liesons in my liver went from 30+ leisons a year ago... and as of July I had only six.!

    In September I restarted chemo treatments (after healing from the surgery for 8 weeks) and now I'm on Xeloda and Avastin. And, they are calling this "maintenance chemo".

    I have six weeks of treatments under my belt and begin week 7 tomorrow morning.

    Quality of life...
    honestly, I feel better today than I have felt in over 5 years.
    its strange. really strange. But i feel like this is WORKING!

    I was eating really healthy for the three months of the summer... but now on Xeloda and my nausea feels like hunger pains and I crave starching foods. (bread, rice, potatoes, veggies) but not much appetite for fruits right now.

    I'm back working full time (I had taken over 5 months off work).

    I have a problem avoiding the stress... but working hard to make sure I don't get dragged too deep into the stress of work and life.

    I've been very frustrated with my faith, and I plan to work on that this fall and winter.
    It's hard not to question God on his plan, and the "why me? Pitty party" seems to raise its head to me way too often.

    thanks again... and i wish the best for everyone here.

    joe

    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.
  • Chelsea71
    Chelsea71 Member Posts: 1,169
    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.

    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
  • jen2012
    jen2012 Member Posts: 1,607
    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

    Hi Chelsea - we have always
    Hi Chelsea - we have always avoided artificial sweeteners. I used 1/4 real maple syrup - the base was 3 cups of cooked quinoa and 3 cups of oatmeal. I would have used honey, but didn't have any in the house. I also juiced some apples and used the pulp and the juice.

    Will post the recipe later if you are interested.
  • Chelsea71
    Chelsea71 Member Posts: 1,169
    jen2012 said:

    Hi Chelsea - we have always
    Hi Chelsea - we have always avoided artificial sweeteners. I used 1/4 real maple syrup - the base was 3 cups of cooked quinoa and 3 cups of oatmeal. I would have used honey, but didn't have any in the house. I also juiced some apples and used the pulp and the juice.

    Will post the recipe later if you are interested.

    Yeah, that would be great.
    Yeah, that would be great. Thank you.

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

    Yeah, that would be great.
    Yeah, that would be great. Thank you.

    Chelsea

    Chelsea....there is a lot of
    Chelsea....there is a lot of conficting info about sweeteners. They say stevia is natural but I haven't used it or researched it. The dietician did say she uses splenda and feels its safe. We aren't obsessive about avoiding sugar but try to not overdue it.

    These cookies are probably closer to breakfast bars than cookies and I don't really have a recipe...just throw in random stuff. I make some for the baby without nuts...put some chocolate chips in the ones for the older kids. Seems you cant mess them up. I use 3 cups of cooked quinoa and 3 cups of uncooked oatmeal. 1/4 cup of maple syrup or honey or I'm sure agave syrup or brown sugar will work. Tablespoon of vanilla and couple tablespoons of butter or peanut butter. Mix it all together and add whatever you want ...chopped nuts...chopped dried fruit...unsweetened coconut...chocolate or carob chips....couple mashed bananas....apple or pear juice and pulp. Form into small balls and bake at 350 for 15 to 20 mins. I threw all in - coconut, fruit and nuts.

    Not the best recipe to follow but you really cant mess them up.
  • Randy33
    Randy33 Member Posts: 69
    joemetz said:

    thank you Randy
    Randy

    I like... I mean, I LOVE your simple six steps.

    I am approaching my year anniversary of joining this colon cancer club... and I and making my goals for how/what I am going to do in this new year.

    I plan to be a copy cat of your list.

    thank you!

    JoeMetz

    I hope it works for you
    Joe,

    My plan is not the easiest to follow, especially all the exercise and the diet. It helps that I am retired. I tell my wife and friends that my new job is fighting cancer. I really feel good now both physically and mentally. I really feel I am going to make it. When I first got my diagnosis I thought for sure I only had a couple of years at most to live. Now I have got confidence I will survive although I still get anxious waiting for scan and CEA results. Good luck on your fight and I will be following your progress.

    Randy