looking for long term stage iv survivors for hope

[scottg]

Thank you to the supportive responses but the one thing that gives me hope are stories of LONG TERM survivors.
It seems all i can find in my situation are people who are 2-3 years and fighting.
ANY STORIES OF STAGE IV SURVIVORS WITH SIMILAR DIAGNOSIS 5+ YEARS??? 7-10 years????
I dont want to sound pushy but i havent seen long term "cured" people with the same issues as me.
Thanks for the support,,please let me know,,,scott
thank you all

[Edward]

Hi Scott,

I know you would like to see many results of Stage IV past five years and at the 10 year mark and at this time it is hard to be patient. I just want you to keep in mind that most of these medicines, treatments and surgical techniques have come out after the year of 2000. Being a Stage IV long term survivor is relatively a new thing. Don't be upset if you don't see many responses to your post on possibly 10 year survivorship.

[Erika]

Scott- There IS hope. Ed's right- the advancements in cc treatments the last few years are bound to increase long-trem survival rates for stage IV but it will obviously take some time to show that. I was diagnosed with stage IV cc in 2000 (liver mets) so I'm a 5 1/2 year survivor and in October I'll technically be cancer-free for 5 years. Those who are 2, 3, 4 years out give me hope- it's a good sign.
Can I ask where you are being treated and what your treatment is?
Erika

[Ron50]

Hi Scott,
I was dx with an aggresive stage three into six lymph nodes and my friend Foxy in New Zealand had liver mets . I'm up to eight and a half years now and considered cured ,Foxy is up over eleven and also cured,Ron.

[Carol Connell]

Hi Scott,
I am older (64) but I was diagosed with Stage 4 CC in April of 2004.
I have mets to my Liver, 7 tumors with no chance of surgery and 2
in my right Lung. I had 2 feet of my colon removed and I have been
on chemo since 2004. I work full time and never miss a day because
of my treatments. It isn't easy, a lot of days I would rather stay in
bed but I believe the routine helps me keep going.

You will get a lot of support here and we can
help you with the roller coaster of emotions you will go through.
There will be side effects from your treatments, as soon as you
do, post here and let us help you, we can tell you what worked
for us to get you through the rough times. You will be in our prayers,
try to have as many positive days as you can and pray for
strength to get through the not so good days.

Carol

[Andrea]

Scott,
I understand why you want to hear from people who are 5+ years into survivorship. I was dx July 2004 with Stage IV. It has definately been a roller coaster ride. Today I am happy and have finally found my new "normal". If you go to the Colon Cancer Alliance website they have stories from survivors. I found it very hopeful especially when I was first dx. I have 6 and 12 year old daughters and I want so badly to live long enough to send them off to college. The truth is 2 years after being dx I still have no ideal anymore than someone with no health problems on how long I'll be around. I hope you find strength, comfort, and support in my postings.
Andrea

[Holly]

Scott,

Welcome to the Colon Club and congratulations on your survivorship!

Scott, I can appreciate your wanting to connect with other stage IV long term survivors. I was dx with stage IV in Sept 2003 and was given little hope for survival. Told I was rare, unique, etc to have been dx with CRC at 30, I desperately wanted to find someone who looked like me and was experiencing what I was. Currently, I am NED.

I mention that I am NED because in your post you stated that you were looking for persons who were stage IV and "cured". What is NED? It means that I have no evidence of metastatic disease. I have been NED for more than 2 years. To most, NED is simply symantics. Label it as you wish. As for your mention of "fighting"? Beating colon cancer will be the physical fight of yor life. It is important to note that even though I am not fighting metastatic disease, I have redirected my energy to fight for awareness, and other issues related to colon cancer. So we each have our own battle to fight and win.

Scott, as for the stastics...Those numbers were calculated before you were diagnosed and realistically do not apply to you. Since the late 90's, there have been a myriad of new drugs and technologies approved for the treatment of colorectal cancer. It will take time for the experts to recalculate such stastical data.

Scott, it is my hope that through this forum you will find support, encouragement and friendship. Scott, you can beat this. Remember that ALL things are possible! Know that you are in my thoughts and prayers!

So...Go kick a little cancer a#@~

Holly

[mtsko]

Scottt,
That is a good question that I have been afraid to ask. I was dx in March 04 w/ Stage IV CC w/ mets to one of my ovaries.I was 38 yrs old at the time. Since then, it spread to my other ovary and had a hysterectomy. I'm in my 3rd yr of many diff txs. 5FU, Leukovorin and Oxaliplatin, Avastin and Camptosar, radiation txs (those sucked! damaged my intestines badly) , Erbitux and 5FU and now Erbitux and Oxaliplatin. I am so encouraged to hear about 10+ survivors. and I still am too scared to ask my doctor my prognosis. I heard it wan't to good. But this encouraging new is a blessing for my day. I'm so glad to hear it! Good luck to all on this message board!

[Harleyman]

i copy pasted this from what my mother wrote. hope this helps and feel free to contact me anytime

want to give a story of encouragement. My oldest son Darrick was diagnosed with colorectal cancer 1 week after his 16th birthday.
Let me back up.... this is to all the YOUNG kids out there.... if you have something going on TELL YOUR PARENTS.......
June of 1987 Darrick had chicken pox and we moved in July and he did alot of work around the new house so that fact that he was pale I just attributed to the fact he was overdoing it. I did notice he was "homesteading" in the bathroom alot but he said he was fine so I left it at that. Well September rolls around and it was the year that the Pope was in Los Angeles, I read something in the paper and wanted to verify it in Darricks bible, it had a reference section. I have 5 kids and all were in school. I know he kept it in his dresser so I went looking for it, well in the bottom drawer I found a horrendous sight.... blood soaked underwear.... lots of pairs..... I panicked. I contacted his school that I would be picking him up in a while, we lived 35 miles from his school. I made arrangements for my other kids and went and got Darrick. He got in my car and I said I was taking him to the doctor... he started to cry and said that God .... I asked him WHY he did not tell me something was wrong... he was SCARED... but did pray the night before for some help and he felt this was his answer. Well this was friday and he had lost 1/2 his blood supply , that is why he was so pale, and as the doctor said a very sick young man. He was admitted that day to the hopsital and they did their test and scheduled surgery for Sunday later postponed to Monday. I was told the worst.... He had 1 tumor 1/2 inch into his colon that they could not send the scope anyfarther, but when there is one there are more I was told. The xrays showed a mishaped liver and they thought it had gotten to there also. The diagnosis was " do surgery, radiation and chemo and they could give him 3 months, he would be gone by Christmas." I remember asking" after all that only 3 months" and they said yes. I don't remember much after that because they sedated me. When I could realize what was happening again my focus was "How do I help my Son die?" Well surgery was 4 hours not 6, when the Doctor came out he looked funny so I was scared. He said and I will never forget" We don't know what happened in there but there was only 1 tumor the size of a silver dollar and nothing else. " They took out 3 feet of colon and the sphinter muscle and his liver is just a weird shape no tumors. " Something happened in there and I don't know what but if you believe in a higher being he had a hand in it" is what the surgeon told us.
It was a struggle for my son to have a colostomy at 16, girls made fun of him, they can be so mean. He is now a wonderful 35 year old healthy man. In fact as I write this he is upstate New York with the Colon Club shotting the 2007 colondar. He is one of the models, he was contacted by someone when they read his article in WebMD Magazine where he thanked his doctors. My son will tell you he knows GOD saved him for something and for years he kept his condition to himself and a few people but now due to the calendar all his co worker know and he is not afraid to let people hear his story. He spoke to his girlfriend lastnight , they live in Corpus Christi, and he said this trip is theraputic, he has never been around people young people with the same condition and he can relate. I thank this organization for the efforts and help. My son is a wonderful person and a positive role model in his community. He will help kids with Cancer anytime they want to talk.
My point of this long post is to say... Don't give up..... My son should be dead but is not... I have been on a emotional rollercoaster ride with him because of this disease. I can not understand what he or you feel or felt but as a parent I can relate there. My other kids can relate to thinking that their brother was dying and how to handle that. Our second son Jason, his comment when he was told his brothers illness...." I always wanted to be the oldest and him to be gone but not to die". I think this is something alot of people can relate to. God Bless all of you. I hope this is a post of encouragement to you.
Ilona

[Monique]

Hello Scott,

When, at the age of 39, I was diagnosed with what my oncologist suspects is stage iv colon cancer I was devastated. Utterly devastated. Like you I was desperate to know of people who had survived what appeared to be a truly grim diagnosis. After a month of online searching I have found a few glimmers of hope.

I read of Barry Stein, a Canadian lawyer and colorectal advocate who has lived with stage iv colon cancer for over ten years. Apparently he manages his disease through surgery and chemotherapy. I have learned of people with either liver metastasis or lung metastasis (sometimes, but rarely, both) who have been operated on and have been cured of their cancer. I’m not saying that these people are the majority, but as you can see here, they do exist. Furthermore, some survivors now view their stage iv colon cancer diagnosis as a chronic condition, as opposed to a terminal disease. Just today I read a post on another forum by a cancer survivor whose oncologist has had a seventeen year stage iv colon cancer who manages his disease through drug therapy. I hope this has been of some help.

Best to you,
Monique

[debcanmcg]

When my husband was diag in 5/04 of stg IV colonrectal cancer I too look for information. Don't look! Enjoy each day while you can. I wish I had. He died 4/15/06. He had meds. to liver. lungs, bones. Never had a change and I wish I could go back and not found the information I did and just held on to HOPE!

[pjmanes]

I am not a l-t survivor either - 2 years 2 months now of stage IV. I posted the same question last year because I felt the same way. I talked to one lady who said that she had survived 5 years and supposely was cancer free. Only heard from her a couple of times though so don't know if she is still making it. I'm not making much progress myself but I do see my 47th birthday today which my original doctor didn't give any hope that I would do. Hope is all we have. I feel like God has given me this last year as a bonus. Let me know if you do find any of those long-term survivors. Phyl

[kbf]

i think its important to remember that often if you are 10+ year survivor you are not on message boards etc. The internet is also a relatively new technology and when 10 year survivors were diagnosed there was minimal support online. With every passing day, research is closer to making further advances with treatment. Our oncologist even reminded me of that, after giving a grim 24 month prognosis to my sister.

Stay positive. There is recent evidence suggesting the power of mind over body. If intereseted I can email you the information.. kbfmango@yahoo.com

[Guest]

Scott I was dxs December 2004 stage 4 colon cancer (bad) been through the ringer since then! I am NED off chemo 5 months feel wonderful better than ever and I will be the big 40 next month! No offense but the 10 year plus survivors are probably to busy enjoying their life then remember their cancer and disscussing it! Beast be gone! Enjoy today... etl nj

[Renee]

Scott,
WOW, I kinda wanted the answer to that one myself. I was dx with stage IIB in June 05, that was bumped to Stage IV when they found tumors in my lungs, liver spine and bones in my hip and iliac crest. It would have been kinder to just hit me in the head with a very large shovel. OH< THEY DID THAT! The stage IV was dx. this past Feb. 06, needless to say I am a disaster. I survived breast cancer I was 35 then I am 52 now. I thought that, I didn't know what I thought. I was going to doctor after doctor I weighed 77 pounds and was 5'5. They dx. me as having anorexia, they did not listen to me complain about the abd. pain, vomiting, and all the other symptoms until it was too late.
WE WILL SURVIVE..... I have been through radiation and will be on chemo they said forever. That's okay as long as it holds the cancer. Don't give up. They are coming out with new drugs all the time. God willing we will live to see and benefit from them. I have heard of people with stage IV living 3 and 4 years. Who knows what their health or age was to begin with. There are so many factors. I learned when I had breast cancer that it is a lonely and terrifying disease but I also learned it can be beaten.
Let us know how your doing.
Renee