Colon Cancer Stage 4

2

Comments

  • impactzone
    impactzone Member Posts: 551 Member
    mcsauder said:

    thank you all
    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

    Stage 4 here
    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
  • poppabear67us
    poppabear67us Member Posts: 1
    Stage IV Colorectal Cancer
    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!
  • tko683
    tko683 Member Posts: 264 Member
    Nice to see so many stage 4 survivors!
    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
  • Jamietesta
    Jamietesta Member Posts: 10

    Stage 4 here
    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

    Lungs
    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
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    tko683 said:

    Nice to see so many stage 4 survivors!
    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

    To the newer members.........
    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
  • Love2Cats
    Love2Cats Member Posts: 127
    That's the rumor my doctor told me too
    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
    Nana b Member Posts: 3,030 Member
    Love2Cats said:

    That's the rumor my doctor told me too
    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!

    I kinda wish they would
    I kinda wish they would remove the people that have passed away, it's just a shock. Why keep them active?!!?
  • Kathy62
    Kathy62 Member Posts: 5
    PhillieG said:

    The truth (as your Oncologist sees it)
    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.

    It is good to see some still
    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.
  • Kathy62
    Kathy62 Member Posts: 5
    lisa42 said:

    never say never!
    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

    Love to know more about the
    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?
  • Patteee
    Patteee Member Posts: 945
    Buzzard said:

    To the newer members.........
    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

    oh it is so hard to see and
    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
    Patteee Member Posts: 945
    Buzzard said:

    To the newer members.........
    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

    oh it is so hard to see and
    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.
  • Barry B
    Barry B Member Posts: 1

    Stage IV Colorectal Cancer
    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!

    HIPEC with Cytoreduction, debulking
    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.
  • tommycat
    tommycat Member Posts: 790 Member
    Buzzard said:

    To the newer members.........
    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

    This is helpful. And sad.

    This is helpful. And sad.
  • F250
    F250 Member Posts: 1
    Answering your question
    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.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Nana b said:

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

    ?
    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".
    ;-)
  • jaycey11
    jaycey11 Member Posts: 1
    Barry B said:

    HIPEC with Cytoreduction, debulking
    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.

    hipec w/ cytoreduction

    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...

  • LIEBERT
    LIEBERT Member Posts: 6

    I have basically been told
    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.

    YOUR POST 11-13-09

    How did it go? My stage 4 last year with a colonostomy (and bag for a year, reversed this April) went okay, but liver tumor had come back up and new chemo starts this Friday with Avastin for 3 months, then MRI, then maybe surgery if the tumor is till there. Feel sort of okay.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Hello, F250

    This is an ancient thread - 2009, and sadly, many who have posted here are gone from this good earth.  I'm not sure about the original poster. her profile is up, but she hasn't posted since 2011.  

    Glad yo hear your brother is doing so well. May he continue to do well.

    Tru

  • LIEBERT
    LIEBERT Member Posts: 6
    STAGE 4 COLON CANCER

    YES, I WAS DIAGNOSED 3 YEARS AGO, PART WENT TO MY LIVER 2 YEARS AGO, SO MICROBEADS TO THE LIVER TUMOR IN MAY, MRI'S HAVE BEEN OKAY FOR IT STABILIZED, 10 ROUNDS OF GOLF THIS SUMMER, WORK FULL TIME, WALKS EVERY OTHER DAY, I'M 73 AND FEEL FINE. ANOTHER PETSCAN COMING UP IN 2 WEEKS. A LOT OF PRAYERS FROM ALL DO WORK. BEST OF LUCK FOR YOU

     

  • LIEBERT
    LIEBERT Member Posts: 6
    F250 said:

    Answering your question
    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.

    YOUR BROTHERS COLON CANCER

    AFTER 3 YEARS OF STAGE 4 COLON CANCER, PART WENT TO MY LIVER NOW BEING TREATED, I'VE HAD OVER 800 HRS. OF CHEMO, 26 RADIATION SHOTS, 14 HOURS OF SURGERY, MICROBEAD IMPLANTS THIS PAST MAY, PLAYED 10 ROUNDS OF GOLF THIS SUMMER, WORK EVERY DAY, WALK AT LEAST 1 HR. PER DAY PLUS STAIRS IN OUR HOUSE. BEST THING ARE THE PRAYERS AT OUR CHURCH EVERY SUNDAY WITH ME ON THE PRAYER LIST AND OTHERS. A GREAT WIFE'S SUPPORT FOR 45+ YRS. OF MARRIAGE. MY PRAYERS ARE WITH YOU. REGARDS. / PETER