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Stage 4 survivors

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  • PhillieG
    PhillieG Member Posts: 4,866
    Stage IV Colon Cancer
    1: DX Feb 2004

    2: At the time of DX my cancer had already spread to my liver and lungs so I was designated Stage IV

    3: I did 6 months of FOLFOX with Avastin, then had surgery to remove the diseased portions of colon and liver. I also had an HAI pump installed to treat any remaining liver issues. I did more chemo after that. From the beginning I also had many lung mets in both lungs so after the colon and liver were "fixed" we concentrated on my lung mets. While the chemo, Erbitux and Irinotecan shrunk and/or stabilized the tumors, there were points when removing the tumors was an option so over the next few years I had 3 lung wedge resections to remove small clusters of tumors that had developed. For the past 4-5 years I've had a total of 5 RFA (Radio Frequency Ablations) to remove a spot or two that have continued to develop. The RFA's are great because the just insert a needle into the tumor, heat up the needle, then the tumor gets dissolved. I've returned home the same day from those.

    4: Quality of life has been up and down but I've worked throughout all of this. The surgeries were rough but ever since the RFA's my Quality of life has been good to very good+. I do get some skin issues from the Erbitux and Irinotecan but it's manageable.

    5: I've improved my diet somewhat but haven't made any major changes to it. I (try) to keep a positive attitude and sense of humor. I do not view myself as a victim by any means. My view is that Cancer has been a Mixed Blessing.

    I was VERY fortunate to hook up with one of the best oncologists in this field at Sloan Kettering, Dr. Nancy Kemeny. I have no doubt that if I had not found her I wouldn't be here today. I've been very fortunate that the right drugs were developed at the right times and became available to me. I've also been very fortunate that I've responded well to the new treatments.
    EVERYONE responds differently to treatments and no two cancers or patients are alike. What's helped me may have killed another just as what's killed someone may have helped me. Some people have had great success through diet, others through TCM, and others by who-knows-what.
    There is no one size fits all...
    -phil
    Living With Cancer Since February 2004
    :-)
  • jen2012
    jen2012 Member Posts: 1,607
    PhillieG said:

    Stage IV Colon Cancer
    1: DX Feb 2004

    2: At the time of DX my cancer had already spread to my liver and lungs so I was designated Stage IV

    3: I did 6 months of FOLFOX with Avastin, then had surgery to remove the diseased portions of colon and liver. I also had an HAI pump installed to treat any remaining liver issues. I did more chemo after that. From the beginning I also had many lung mets in both lungs so after the colon and liver were "fixed" we concentrated on my lung mets. While the chemo, Erbitux and Irinotecan shrunk and/or stabilized the tumors, there were points when removing the tumors was an option so over the next few years I had 3 lung wedge resections to remove small clusters of tumors that had developed. For the past 4-5 years I've had a total of 5 RFA (Radio Frequency Ablations) to remove a spot or two that have continued to develop. The RFA's are great because the just insert a needle into the tumor, heat up the needle, then the tumor gets dissolved. I've returned home the same day from those.

    4: Quality of life has been up and down but I've worked throughout all of this. The surgeries were rough but ever since the RFA's my Quality of life has been good to very good+. I do get some skin issues from the Erbitux and Irinotecan but it's manageable.

    5: I've improved my diet somewhat but haven't made any major changes to it. I (try) to keep a positive attitude and sense of humor. I do not view myself as a victim by any means. My view is that Cancer has been a Mixed Blessing.

    I was VERY fortunate to hook up with one of the best oncologists in this field at Sloan Kettering, Dr. Nancy Kemeny. I have no doubt that if I had not found her I wouldn't be here today. I've been very fortunate that the right drugs were developed at the right times and became available to me. I've also been very fortunate that I've responded well to the new treatments.
    EVERYONE responds differently to treatments and no two cancers or patients are alike. What's helped me may have killed another just as what's killed someone may have helped me. Some people have had great success through diet, others through TCM, and others by who-knows-what.
    There is no one size fits all...
    -phil
    Living With Cancer Since February 2004
    :-)

    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.
  • Semira
    Semira Member Posts: 378
    THANKS
    Jen for starting this thread and all of you for sharing your stories. We (husband is the patient) are facing our 1 year cancervery in nov and it is good to read all you stories.

    A hug from germany
    Petra
  • Buzzard
    Buzzard Member Posts: 3,043
    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........
  • jen2012
    jen2012 Member Posts: 1,607
    Semira said:

    THANKS
    Jen for starting this thread and all of you for sharing your stories. We (husband is the patient) are facing our 1 year cancervery in nov and it is good to read all you stories.

    A hug from germany
    Petra

    Hi Petra - I'm sorry you
    Hi Petra - I'm sorry you guys are dealing with this too. Best to you and your husband!
  • jen2012
    jen2012 Member Posts: 1,607
    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........

    Buzz - When I first started
    Buzz - When I first started searching this website back in August, I found many of your posts and were comforted by them. I am so sorry that you have had such a hard time. I wish you peace and happiness.
  • abrub
    abrub Member Posts: 2,173 **
    jen2012 said:

    Wow - good for you! Thanks
    Wow - good for you! Thanks for sharing and I hope your remission continues for many years!

    PS - I'm another Sloan Kettering success story
    Without the experts at Sloan Kettering who knew how to treat my rare form of cancer, I would not be alive.

    Alice
  • Chelsea71
    Chelsea71 Member Posts: 1,169
    jen2012 said:

    Buzz - When I first started
    Buzz - When I first started searching this website back in August, I found many of your posts and were comforted by them. I am so sorry that you have had such a hard time. I wish you peace and happiness.

    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.
  • shmurciakova
    shmurciakova Member Posts: 906
    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.
  • tanstaafl
    tanstaafl Member Posts: 1,299
    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.
  • 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?