Stage 4 survivors

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  • annalexandria
    annalexandria Member Posts: 2,571
    Diagnosed September 2009

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

  • YoVita
    YoVita Member Posts: 590
    Stage IV metastatic CRC

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

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

    Stage IV metastatic CRC

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

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

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

    Wow, Ron...

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

    Sandy

     

  • jen2012
    jen2012 Member Posts: 1,607 Member

    Diagnosed September 2009

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

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

    Stage IV metastatic CRC

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

    I hope you continue to do

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

    Thanks Ron and sandy for those great long term stories!

  • emrose
    emrose Member Posts: 136
    My husband

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

    2. 3 small mets in the right lung 

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

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

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

     

    Hope this was helpful. Best of luck to you! 

     

    Laura

  • HANRSC
    HANRSC Member Posts: 21

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

    Hello janderson - Great News!!!!

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

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

    Folfox/avastin Success




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


     

    IGWT- CHARLES

  • HANRSC
    HANRSC Member Posts: 21
    Rubyrose said:

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

    Hello Rubyrose

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

     

    IGWT- Charles

  • HANRSC
    HANRSC Member Posts: 21

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

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

    Hi Semiconlon811

    Hi

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

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

    Dear God,







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






    Amen

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














    Even if it's only to one more person.














    In memory of anyone you know who  has been














    struck down by cancer or is still living with it.













     

    IGWT- Charles












     


     

     



     


  • HANRSC
    HANRSC Member Posts: 21

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

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

    Hi Semiconlon811

    Hi

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

     

    Sent: Monday, August 20, 2012 9:04 AM
    Subject: CHEMO DAY


















    Cancer is a strange cell.
















    You can go along for years inremission















    and then oneday it pops its head up again.















    If you ever have it you will never be free of it.















    Pray for the day there will be a permanent cure.


    Dear God,







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








    Amen
















    AIGWT- Charles









     


  • karguy
    karguy Member Posts: 1,020
    Well now

    I was first dx with colorectal cancer in march of 2008,I did xeloda,then surgery.The tumor had spread to my tailbone,after surgery I ended up with a colonoscopy.No follow up chemo.Then in november 20011, I was dx with a cancer recurrance to my liver,a golf ball sized tumor was found then,and then I did 5fu coctail with avastin.Surgery was in july 2012,no follow up chemo,and I have been ned eversince.I did have to make diatery changes,but because I became diabetic.I can do what I did before,except I now have a broken leg,fell down,but I am going to retire probably next month.So far I have been NED twice.Good luck.

  • impactzone
    impactzone Member Posts: 539 Member
    almost 6.5 years here. I was

    almost 6.5 years here. I was dx with liver, colon and lung tumors. I had 4 lung surgeries, colon and liver and folfox. All were done at Stanford.

    I get scans about every 3 - 4 months. I just got one thursday and this makes the first time I have gone 1 year without a met showing up, usually in lung. I have had 4 thoracic surgeries and still surf and ski. I teach high school and coach and still do that. Greeat times with kids and wife and I am 53 years old.

    Life changes have been to be more alive. I never miss a chance to do something. I try to eat healthy, take an aspirin a day, exercise read a lot and mentally have gone through some antidepressants but now take nothing. It is tough but I get angry about this and then try to find sosmething I like and can laugh. My wife has been great and helps me so I can help her, which really helps me.

    Live life, fight and never ever, ever give up.

    Chip

  • taraHK
    taraHK Member Posts: 1,952
    10 years

    1. How long since initial diagnosis? - 10 years
    2. What made you stage 4? Initially diagnosed Stage 3. Since then I've had mets in lung, bone, brain, breast (!)
    3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time -- in and out of treatment although have to say my longest period NED was 2 years. I've sometimes had chemo breaks. 
    4. What is your quality of life - do you still work, enjoy everything as you always have - I consider my quality of life to be good. Until recently, I have been working full-time, exercising, travelling, good social life. I'm about to go on sick leave from work and exercising not much these days (discomfort from bone mets) but still active....
    5. Did you make any life changes - not much. I was a pretty health eater pre-diagnosis (lots of fruits and veggies, low-fat, no junk). I take a lot of vitamins

    I consider myself lucky to have had these 10 years, especially since my sons were 10 and 12 when I was diagnosed and they are now handsome young men of 20 and 22. 

    Tara

  • wahine56
    wahine56 Member Posts: 3
    jen2012 said:

    I hope you continue to do

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

    Thanks Ron and sandy for those great long term stories!

    LMS

    This has been a great thread to read. Encouraging. So wish I had found this last year.  Was diagnosed Sep2011 after a complete hysterectomy for fibroids. Was told I had LMS and stage IV, mets to liver, lungs, back.  First Dr. said I had a few months, nothing could be done.  My husband had a complete breakdown and committed suicide Jun2012, not being able to deal with life without me.  The pisser is I'm still fairly healthy; tired mostly.  I've had radiation on my back, chemo, and am now on Votrient.  Still not being given much encouragement; am told survival is less than a year.  So good to see stories of those who have done well.  Have just moved and starting with Seattle Cancer Alliance.  Hoping for positive results.  Thanks all for your postings.

  • BusterBrown
    BusterBrown Member Posts: 221
    Dec. 2004, DX w/ CRC and Liver Mets...

     

    Hey Jen,

    For me it started Dec. 2004, DX w/ CRC and Liver Mets, I was 42 years old when dx.  Today, i'm 51 years old and I'm cancer free. My next appointment with my oncologist is July 2013:)  It's been a long road, I've been through the ringer, however, I never once thought that I could not beat this disease. My best advice is to compartmentalize your disease, visit it when you have to, but do your best to live your life.  

    Buster...

     

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Thank you all for sharing

    Thank you all for sharing your stories.   I read them often when I'm feeling anxious....fully understanding there are no guaranties, but there is hope!

    Bumping this for all the new folks that have recently joined.