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Colon Cancer Stage 4

mcsauder's picture
mcsauder
Posts: 68
Joined: Nov 2009

Colon Cancer Stage 4
Is there any recovery from it !!!!!!!!!!
My Hematology/Oncology is telling me that I will never be cured or should I say go into remission the only thing that they can do for my cancer is to keep it stable.
It started in the colon and moved to other organs
Is this true

just4Brooks's picture
just4Brooks
Posts: 987
Joined: Jun 2009

We have many stage 4's on the board who are still here and kicking. Don't be so fast to wright yourself off. I'm a stage 3 myself and I dont plan on going anywhere for a while. The stage 4's will answer soon.

Life is funny sometimes
Brooks

P.S. PM me anytime you want

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

You're waiting for "us" to come out the woodwork! You know me/us well my friend!
-p

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Your profile says you were dx'd in 2006. Is this a new dx where cc has returned and spread?

I wish you well. Like Brooks said, many of the Stage IV's will answer soon.

Diane

jmaddox915's picture
jmaddox915
Posts: 80
Joined: Nov 2009

I have basically been told the same thing. So I have the same question. My cancer spread to my liver, not sure about the lungs. They think it could be sarcodosis so I have to have a biopsy to be sure. It has also spread to the lymph nodes in my abdomen area.

My last CT scan showed the liver lesion gone or at least small enough they can't see it. If my lungs do turn out to be sarcodisis, that leaves me with the abdomen.

My oncologist said I would always be on maintenance chemo like Avastin. Her hope is it will keep it stable and hopefully new things will be developed.

I have left this in the hands of God and ask his will to be done. the more I think about it the more depressed I get so I rely on the fact that God has a plan and I need to be patient.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Do you believe that you can't be cured ? Is that the only Hema/Onc in the Nation ? Get a second opinion, then a third and fourth if you have to. Never ever say "uncle". Yes there are Stage 4 IVs in here that have been stage 4s for a longggg time...They are a bunch of tough birds that believe in never giving in and always believing that there can be a cure anyday...Thats why they fight so hard to move from one treatment to another until a cure is found....Join in here and you will see that we all intend to live forever...the stage IVs are the real Warriors even though we all wear head dresses....You won't find a better bunch to sit and talk with.........Buzzard

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Welcome to our wonderful, humble family!I was diagnosed with Stage 4 colon cancer with mets to my liver in January of 2009, this year, and going on one year since diagnosis here in a couple months. I have a temporary colostomy, and have had many surgeries due to blockages from scar tissue from the surgeries I've had, I had my sigmoid part of the colon taken out, and have been on chemo (Folfiri with Avastin) since February. I go every other week on a Wednesday and sometimes a Thursday, and am hooked up to a pump for 46 hours, and disconnected on a Friday or Saturday by a home health nurse.

My onc said we have to look at this as a chronic disease, kind of like diabetes, where we keep trying to keep it under control. There may be a cure, you never know, there could be one next week, next year, but for now, there is just hope. There are alot of Stage 4's who have been living with this for years, I'm not operable, I guess my mets are at a place where they can't get too. I may think of going for a second opinion once I talk to my onc next week, to see what exactly is going on with my liver, but for now, we just take it day by day. I live for the day, like it would end tomorrow, I have 4 children, and not ready to go anywhere yet.

Don't give up, you never know what can come out with this disease. It definitely isn't pleasant, but I could think of worse things, like it happening to my child, and thank god it isn't, and that it's me. There are anti-depressants, and anti-anxiety pills out there to help cope with the ups and downs, I am on Zoloft, which helps quite abit, and I get out alot now, which puts me in a whole new frame of mind, just live like you been living, and don't let this stop you. Keep your chin up, and am sure you'll be hearing from more Stage 4's :) anytime you need to chat, we're here :)

Hugsss!
~Donna

Patteee's picture
Patteee
Posts: 949
Joined: Jul 2009

love you
*hugs*
I mean, you know what I mean
you always send me the best stuff on farmville

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

(((((HUGGLESSS))))

You send me good stuff, if you ever want me to send anything specific that you need for your farm, let me know!

XOXOXO

~Donna

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

Hi Donna,
I just read your profile and I'm so impressed with your attitude. You have been through the ringer and back and yet you are so up beat. I feel as you do that I am not ready to leave my kids so I will fight to the death! I was DX in 2006 Stage III but have since had a reocurrance to gut and lung area. I'm about to go back into treatment. I know God has a plan for me so I try to stay focused on Him. Stay strong as you are doing and keep fighting. You are amazing!!
Jill

allackey's picture
allackey
Posts: 19
Joined: Oct 2009

Seems like technically your onc is right; In reality I beg to differ though and I have been surmising that the Dr.s are not all that sure either. Right now all we have to go on is data. Most of this is many years old and not updated. (Kind of like the 10 year census). New drugs are out and continue to come out, including Avastin. Above all, mindset is most important. Don't just say you can beat this; say "I HAVE BEATEN THIS CANCER". One other thing to avoid is internet research regarding survival and studies. Stuff comes up that is 5-10 years old; thus obsolete in my opinion.

Be strong. My wife is a "stage iv" w/ mets to her ovaries. After surgery she was basically rendered disease free. I believe she will be here for a lifetime; truly I do. There's too much to do here so focus on that. Don't sell yourself short.

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

Also, birth has a horrible prognosis as Leslie(?) on the board says. From the day we are born as are on our journey to death. So now that I've cheered you up let's get down to business. I see it as semantics. Many, if not most, oncologists are wary of using the word "cured". Maybe they feel that IF the cancer does return, which it can but doesn't mean it always does, they might hear "you told me I was cured..." from people so to cover their colons they use it sparingly.

I would get another opinion if I were you. They do not sound like they have all of the possible treatments available at your hospital or that possibly they are not as knowledgeable as other oncologists might be. There are so many treatment options out there and more become available all of the time. Don't listen to one team, shop around.

-phil
(Living with Stage IV colon cancer for over 5 1/2 years.)
Yeah, I'm not CURED (yet) but I'm here and very well could be "living a more fulfilling life" than some people who do not have cancer are.

Kathy62's picture
Kathy62
Posts: 5
Joined: Sep 2011

It is good to see some still fighting and in the game at 5 plus years. I think I can beat it but discomfort and fatigue get in the way sometimes of enjoying my life like I would like. I have been really fatigued since I started Erbitux and Irirotecan mix. Also lots of burning in my lower back. I have stage 4 colon cancer it spread to my liver and lung when the found it. My last scan showed nothing in my liver, but 7 small spots in my lungs. 6mm is the largest. So tired of being tired mostly. What do you do to gain energry since you have been fighting for so long. And way to go by the way! My last CEA was like 6.1 but has been lower(that was after I took a break for about 7 weeks). Miss my break.:( My big question for you is has your life slowed down alot since you found out you had the cancer or are you able to keep doing the same things. I am a youth pastor and am full time and try so hard to keep up with my old self, not easy.

dorookie's picture
dorookie
Posts: 1684
Joined: Jul 2007

I was first DX in May 2007, had it come back in Oct 2008, finished second round of chemo and now I am NED! Last few scans are all clear! I know there is a chance the cancer can come back, but there is also a chance I could be killed by a passing car, so I try not to think of it and just move forward. There was a time that I didnt believe I was going to make it, but that time is over and with God on my side, I truely feel I am clear of this beast. There is hope, so please dont give up, life is worth living, I became a grandma for the first time a few weeks ago and I just thank my God that I am here to meet him and will continue to be here to watch him grow. Lets be honest its not easy, the journey with cancer is hard for us all, but we do what we have to to get through all the crap and to live.

You have found the best board and group of people that can help you through anything and everything when it comes to support and great advice.

God Bless
Beth

joanneire
Posts: 75
Joined: Jun 2005

Hi All

Haven't been on this site for ages. My (now) husband was diagnosed in 2004 (age 25) with colon cancer - mets to lung and liver. Since then we got married, had a baby and have another one due in 5 weeks. Unfortunately my husband is unlikely to live to see the birth of his baby as his poor body just can't take anymore. However he has lived life to the full for the last 5 years. His liver is finally failing and the cancer has spread to his bones and stomach. I know this all sounds very depressing, but in fact he has been inspirational and until May of this year was working full-time. I wish all of you the very best of luck and plan to enjoy every precious moment of the week or two that I have left with my beloved husband.

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

I was diagnosed stage 3 a little over two years ago and have had three recurrences this year. Two phrases in this thread are particularly meaningful to me: "just live your life the way you've been living it" (Thank you, Donna!), and "live life to the fullest."

My approach is that I can't change much about the disease; I can control how I experience it.

By focusing our attention on how we live (not on how I have a disease), even at stage 4, my partner and I live well. Differently, but every bit as well as we always have, and in some ways even better, with intensity and intention.

John

mikejones_53
Posts: 33
Joined: Nov 2009

I was diagnosed in mid June with stage 4 rectal cancer with small mets to brain, bones, liver & lungs. Had 15 radiation treatments to the brain right away and am now about to get the 10th out of twelve Folfox 5-FU +avastin and something for the bones every other treatment. It's a long haul and the weariness and distaste for food is seeming to not go away at all between treatments. I have also been told that there will always be cancer in my body, but it should be something that they can treat as a chronic disease and there will be a good chance for long term survival. For what it's worth-the rectal tumor doesn't show up on the scans anymore and the other lesions are all shrinking at a good rate. The dr. used the term remission as a probability for me, so I don't see why it cant be a possibility for you, as well. Hang in there and fight hard, keep a positive attitude and enjoy whatever you can to the fullest
Mike

patsy1954's picture
patsy1954
Posts: 85
Joined: Sep 2009

I am Stage4 dx in April. Mets to liver and multiple lymph node involment. Both my medical and surgical oncologists tell me the same thing. There is currently no cure for this but it can be treated as a chronic illness. I choose to live with that description. I am hoping for NED within the next year. I have finished 12 weeks of FOLFOX and now taking Xeloda and Avastin treatment. So far so good. I, like others, choose to live my life saying, "my cancer is gone", not "I hope my cancer will be gone." After my dx I went for a second opinion at Dana Farber Cancer Hospital and they told me the same as my other docs, this is a chronic illness. Live each day to the fullest is my moto.

Pat

angelsbaby's picture
angelsbaby
Posts: 1161
Joined: May 2008

All i know is that some people make it some don't But i always thought angel would make it but he didn;t I don't know why but that is just the way it was for us. But never give up hope.

michelle

ganders2's picture
ganders2
Posts: 13
Joined: May 2008

Hello,
I have been reading the wonderful and wise comments from folks for a while and wanted to jump in on this one. I too am Stage IV, diagnosed 5/08,treated and was NED 12/08, recurred 7/09, and still kicking hard! Like you, the cancer has spread to my liver and is considered inoperable since the recurrance is all over. I am currently lon 5FU, leucovorin, and Avastin biweekly and just had my 14th dose.
My doctor also told me that with the new drugs like Avastin that I may be able to treat this as a chronic disease for a very long time. There is a lot of research going on and who knows? maybe someone will find the magic bullet for all of us.
In the meantime, I try to focus on the present and keep as active as I can. I agree with everyone who recommended staying physically active - I find yoga and meditation helpful too. Really, when you think about it, no one knows when their time is up,and people don't really think about it much. so in an odd way, we all have an opportunity to clean up old messes and enjoy the people we love and truly be alive that not eveyone gets.
Hope this helps!

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi,

I'm a stage IV and am definitely still full of life and kicking! I was dx'd 2-1/2 years ago as stage IV. Although I'm not yet "cured", I still have hopes to become so! I still function as a busy mom of three. I'm currently getting chemo every two weeks- I have my few down days after chemo, then I know the following week I'll be fine. I still drive my kids to and from school, go shopping, and pretty much do everything I ever did before except the 3-5 days following chemo I'm really tired.
As Phil said, if they're telling you at this point to not plan on being cured, then maybe you're not seeing an aggressive enough or knowledgeable enough oncologist. I'd go get another opinion or two and make sure those opinions are from oncologists (and surgeons if needed) who are from major cancer centers, NOT just a local small oncology office. It really is amazing how doctors can have different ideas. There are lots of new treatments on the brink and several clinical trials to look into. Personally, I'm heading to Nashville to Dr. Cantrell to try a differrent kind of therapy (check out www.neoplas.org)- I'm really excited with this & think it just may be something that could cure me (or, at the very least, be far less caustic on my body than the chemo is).

Take care- chin up, and don't give up hope- there's ALWAYS hope!!

Blessings,
Lisa

Kathy62's picture
Kathy62
Posts: 5
Joined: Sep 2011

Love to know more about the treatment you may seek in Nashville. I have stage 4 colon cancer that had spread to my liver and lung. I didn't get any hope from MD Anderson after I had taking 12 chemo treatments more locally. They said life time chemo and keep up what I was taking. What I was taking only was keeping it from growing, not shrinking. I wanted to beat this. I found another doctor with in 20 min. of my house and a new clinic. He tried a new mix and last PET scan nothing lit up and my last Ct scan showed nothing in my liver, still have spots in my lungs 6-7 largest is 6mm. Is this anything like your cancer? Just wondering. I am not trying a mix of Erbitux and Irirotecan. I am very tired with this mix and my skin really hurts, just had 4 treatments so far. I have noticed a burning sensation in my lower back and my right side up under my ribs hurts, aches. Anything like this for you?

mcsauder's picture
mcsauder
Posts: 68
Joined: Nov 2009

Hi everyone
I would like to thank you all for the postings that you all posted,
I halved read them and will keep reading them they were a big help to me and I would like to thank you for the support that you gave. I'm glade that I singed up in here
Mike

impactzone's picture
impactzone
Posts: 435
Joined: Aug 2006

dx 9/06 Stage 4 with liver mets and still here. 2 lung surgeries, liver surgery and chemo. I would talk to surgeons if you can and not just oncs. Make sure you are comfortable with a plan and then just try to enjoy things when you can... get rid of clutter, eat well, love often and thank the people that help you get through...
Chip

Jamietesta
Posts: 10
Joined: Aug 2011

Hi, your story brought inspiration as im facing similar situation. Dx st 4 colon cancer last april, went on chemo and just had hipec surgery to remove colon. The surgery and chemo has worked so far and im going back on chemo next week. My question is regarding your lung tumors, i was told one side of my lungs would be a pretty major surgery and the other not as much. Can you talk a bit abut your lung surgerys, how long you stayed in hospital, recovery, etc. Thanks, jamie

poppabear67us
Posts: 1
Joined: Aug 2011

I would like to tell you my story. I was diagnosed with Colon cancer in 2007 and underwent surgery to remove my distending and Sygmoid Colon. I had ten Chemo treatment before work forced me to stop. I was diagnosed with Small intestinal Cancer (Extremely rare) in October 2010 and had about eight inches of my Small Intestines removed. In December 2010 Blood test showed that cancer had returned. In January a Colonoscopy showed the cancer had returned in my rectum. I underwent a third surgery in February 2010 to remove the the mass and wound up losing my entire colon and acquiring an ostomy. The doctor said it could be reversed in six to eight months. When I had a PET scan in late 2010 it revealed that the cancer had spread again and that I had probably been at Stage Four since the bout with the small intestinal cancer. I began Chemotherapy in November 2010 since the cancer had spread to my right lung, my shoulder and my stomach, so it was inoperable. As of my last PETscan in May 2011 I am almost in full remission. Only a small area of the lymphnodes are swollen in my stomach area and are considered nonmalignant. I have another PETscan next Monday, August 29th to hopefully get a clean bill of health. The Chemo Kept me alive, prayers from Family, Friends and Strangers and their undying support helped provide remission. Good luck!

Barry B
Posts: 1
Joined: Sep 2011

Good evening,
I am new to this board and came to this board to see if I could attract a survivor of this procedure to share his/her experience. We are trying to determine if it is worth the extensive risk and highly invasive operation. Statistically as I understand it now, my dear wife of 39 years could be trading 6 months to a year of what is now decent health to six months to a year of not so good health due to recovery. Statistically, the best case scenario she could get 2-5 years or more. She has undergone two surgeries, resection of colon the first time followed by 6 months chemo then removal of 15cm growth from ovaries with 6 months chemo only now to find out the chemo wasn't worth much for this type of cancer. It almost seems like they are learning with us, as we only learn as we go.

Can someone please help with their personal testimonial that may have undergone this surgery. I would love to hear from many people. I have come to the conclusion that medicine is great but only if we are involved to the fullest every step of the way. We are only good patient advocates with the best information. I believe my best information may come from patients that have undergone the surgery. No sugar coating straight up experience as you see it. Thank you.

jaycey11
Posts: 1
Joined: Dec 2013

hi Barry, i was diagnosed w/ colon cancer stage3c last april 2012, undergone left hemicolectomy May of same year then followed by chemotherapy started july 2012 ( oxaliplatin + capecitabine ) i only finished 5 cycles of oxaliplatin as im struggling with both and only completed the capecitabine ( total of 8 cycles) last january 2013. i had my ct scan march 2013 which seems to be good and i manage to go back to work like nothing happen. i get a phone call june of this year from my oncology nurse that they arrange an appointment for ct scan as my cea count rise from 1.8 to 40.ct scan was done last august and my cancer returned back to my left ovary and peritoneum. my oncologist and my colorectal surgeon given me a timeframe of 3 to 6 months to live. they given me 3 option,one is to undergo chemo just for palliative, second option my colorectal surgeon will view the inside of my abdomen by laparoscopic method if still operable and the 3rd option is to sit and wait.im from the philippines now migrated to scotland with my husband and 4 children. i spoke to my siblings in the philippines and asked their opinion and they all advised me to go home and seek second opinion. i went home august of this year and find a doctor that can answer all my questions.after a week of searching, i find the doctor and undergo cytoreduction plus hipec.its a massive risk but i still want to live,i also spend a lot of money but i am buying my life here, i thought that i will not recover again, lost a lot of weight but 2 months after the surgery i manage to return back here in scotland. i am now getting chemotherapy every 2 weeks and still alive.i dont recommend anything and just sharing my experience.if i did not go home and get second opinion im already dead by now.i also do a lot of prayers...

tko683
Posts: 257
Joined: Aug 2011

My husband was diagnosed with stage 4 rectal cancer in June and was also told by the doctor that there is no cure. I really think that doctors should not say that to people and instead tell them about all the treatment that is available like everyone here is saying. It is so much better to focus on the positive instead of the negative. There are new treatments available and it sounds so much better saying you have a chronic disease instead of one that is incurable. Sending you prayers for strength, hope and healing.
Teri

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

all of us here are here to help and do whatever we can to help whomever asks. Please though as you review posts and threads that are 2-3 years old take note that some of these people have since passed on. Three of them that I know of. In light of new members coming in I know how easily this mistake can be made, please do not take this wrong, just maybe try and keep the posting to the latest threads and if you have a question about someone or a certain topic that may be a year or two passed maybe try to PM someone or maybe contact the person that posted the older message....Thank you for your posts and there is an unending knowledge base here at your fingertips.....I wish only the best for each of us.....and we'll leave the light on for ya .....buzz

Patteee's picture
Patteee
Posts: 949
Joined: Jul 2009

oh it is so hard to see and remember the lives that have been lost. John and Donna, I just gasp when I see them in a thread.

Patteee's picture
Patteee
Posts: 949
Joined: Jul 2009

oh it is so hard to see and remember the lives that have been lost. John and Donna, I just gasp when I see them in a thread.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

This is helpful. And sad.

Love2Cats's picture
Love2Cats
Posts: 127
Joined: Dec 2010

My doctor told me the same thing (I am stage 4 also). To tell the truth, I don't care what she, or anyone says. In a strange way I feel lucky about being diagnosed with 2 years to live, rather than just dropping dead of a heart attack, or aneurysm. This has given me time to set things up to make sure my family and kitties will be ok without me. I have time to enjoy with the people I love, and an opportunity to tell them how much they mean to me.

Maybe I will die in 2 years, or maybe I will live 5, or 7, or? I am 48, and I had a sister who died 2 days after she was born. There are young children who are battling cancer. Look at all the people who died in Japan, and never got to say goodbye to the people they loved. Yes, I do feel lucky.

Please try not to worry, only the man upstairs knows what will happen in the future, and miracles do happen.

PS Your doggies are adorable!

Nana b's picture
Nana b
Posts: 2912
Joined: May 2009

I kinda wish they would remove the people that have passed away, it's just a shock. Why keep them active?!!?

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

Maybe they had something important to offer others?
I can understand that it would be nice if they had something next to their screen name to let people know they've passed away.
I sure hope my words live on when I "go".
;-)

F250
Posts: 1
Joined: Oct 2011

My brother was diagnosed with stage iv colon cancer november of 2010. He was told by his surgeon in Florida that he had 18 months to live. We flew him up to Ohio and started his treatments at the james at OSU, and Dr. Gerad in Lima, Ohio for Chemo. He was told the same things as you.After 6 chemo treatments Dr Gerad said his mri showed 80% shrinkage of combined tumors. Around his 8th chemo treatment he started experiencing extreme pain in his shoulder from what we thought was a pinched nerve from his chemo port. They couldn't figure out what was causing his pain by x ray so they sent him to do another mri. This was done around the 11th chemo treatment. When Dr. Gerad read the mri, he told my brother that he was in 100% remission.He didn't even have to do his 12 chemo treatment. Now his florida Dr is saying he has to do lower dosage maintenance chemo every two weeks. Dr Gerad in Ohio is the best on the planet bar none. He is the one who read the scan. He not once told my brother he would have to do maintenance chemo. I think some doctors just expect the worse from all patients.This florida doctor was the same one who only gave my brother 18 months to live. My brother looks great. He didn't lose any weight and he looks like he always has. Please stay positive. Also, have your doctor consult with O.S.U. James hospital and Dr. Gerad 419-222-3737 in Lima. He is the best in the world. This is by no means a death sentence. You can live a long life. Praying for you. Keep fighting the good fight.

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