New member...Need stage IV remission encouragement

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marykos
marykos Member Posts: 1
edited March 2014 in Colorectal Cancer #1
Greetings,

After reading this board for months seeking encouragement, I have finally decided to post a message. I am 53 and up until now perfectly healthy. I have never smoked, always exercised regularly and ate well, so I don't need to tell you how shocked I was to be diagnosed with cancer. I am stage IV, diagnosed 6/9/2010 with mets to the liver. I have had a colon resection, nine sessions of chemo and a liver resection (11/18/2010). I am in remission, with a clean scan. I thought that when I reached this point I would be elated, but I'm not. I don't know why. My liver surgeon indicated that I would need some post-op chemo, maybe three to six months. When I visited my oncologist, he put me on maintenance chemo for an indefinite amount of time to prolong my remission. Not exactly what I expected. My doctor did indicate I would go off chemo at some point, but he's not sure when. I know from reading this board that I can go for a long term remission or NED, but I need some advise on how to stay focused and positive. I feel like cancer consumes my head and all the outdated statistics don't help. My doctor told me that the liver resection helped my odds but he said he couldn't really give me a percentage. I have read that this can be curable. I have read on posts that some oncologists feel that this can be treated as a chronic condition, please let me know what your doctor's opinion on this is.

I know that a positive attitude is important in fighting this disease so please give advise on how to cope and enjoy life. Thanks in advance for your support.

Mary

Comments

  • Nana b
    Nana b Member Posts: 3,030 Member
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    Welcome to the team no one volunteers to be on
    I'm not on any maintenance Chemo. I did 12 rounds of chemo. I also had a liver resection and have been NED since, June 2009. I've heard of some om maintenance Avastin but not all the chemo. I'm sure others will chime in. I believe positive energy has to come from within. You are in remission, get back to your life and think healthy, live healthy. Enjoy each day. Be happy!
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    Nana b said:

    Welcome to the team no one volunteers to be on
    I'm not on any maintenance Chemo. I did 12 rounds of chemo. I also had a liver resection and have been NED since, June 2009. I've heard of some om maintenance Avastin but not all the chemo. I'm sure others will chime in. I believe positive energy has to come from within. You are in remission, get back to your life and think healthy, live healthy. Enjoy each day. Be happy!

    Mary...in all honesty and the best way I can......
    I will tell you a shortcut in helping you get on with life.....I had a grave issue with loss of control..with cancer your only control is your mental stability...Physically it will dictate itself to you until time that its gone, but you can keep the mind healthy by not allowing it to take your mental strength away from you...It will in an instant if you let it...What you have to do first is come to grips with your mortality...yep, we're all gonna die someday, but I think that it is the sudden slap in the face we get with cancer that seems to really wake us up to the fact that damn, I may really, really die here. OK, now you got your taste of mortality and how actually real it is. So, instead of taking all things so "for granted" as do we all (or did) we get a new perspective of life and all around us. Now, Stage 4 isn't a death sentence, life is...so until they say there is no more they can do for you then your alive, healthy, and still in the hunt for whatever you want life to lead you into....Don't stop planning for the future, plan trips a year in advance, then when ya find that yeah ya did live another year, you then don't have to pay large prices for plane fare to Disney World cause ya thought ya might not be here.....You are in the drivers seat as far as how you want your protocol to go. The more knowledgeble in the cancer arena you are the better off your treatments and the body reaction to them will be. So, now that we have your control issue back intact we will move on to the next issue, in the next question you may ask.......OK, that will be $39.95 payable in advance or 3 Snickers bars and a Dr Pepper........Your friendly neighborhood Buzz ( with a z )........
  • Nana b
    Nana b Member Posts: 3,030 Member
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    Buzzard said:

    Mary...in all honesty and the best way I can......
    I will tell you a shortcut in helping you get on with life.....I had a grave issue with loss of control..with cancer your only control is your mental stability...Physically it will dictate itself to you until time that its gone, but you can keep the mind healthy by not allowing it to take your mental strength away from you...It will in an instant if you let it...What you have to do first is come to grips with your mortality...yep, we're all gonna die someday, but I think that it is the sudden slap in the face we get with cancer that seems to really wake us up to the fact that damn, I may really, really die here. OK, now you got your taste of mortality and how actually real it is. So, instead of taking all things so "for granted" as do we all (or did) we get a new perspective of life and all around us. Now, Stage 4 isn't a death sentence, life is...so until they say there is no more they can do for you then your alive, healthy, and still in the hunt for whatever you want life to lead you into....Don't stop planning for the future, plan trips a year in advance, then when ya find that yeah ya did live another year, you then don't have to pay large prices for plane fare to Disney World cause ya thought ya might not be here.....You are in the drivers seat as far as how you want your protocol to go. The more knowledgeble in the cancer arena you are the better off your treatments and the body reaction to them will be. So, now that we have your control issue back intact we will move on to the next issue, in the next question you may ask.......OK, that will be $39.95 payable in advance or 3 Snickers bars and a Dr Pepper........Your friendly neighborhood Buzz ( with a z )........

    Oh gosh, Buzz!
    Snicker Bars and a Dr Pepper, I never craved that until I got cancer, then I learned that the little devil, called cancer was tempting me. When I knew better. My stomach has never been able to digest sugar properly. Talk about the most painful burping. My esophagus was saying, I do not like this!!

    I'm doing okay now with the sugar, but, in wasn't"t initially. I am also getting heartburn when I eat oranges. I need to look up citrus and an acidic tummy. I know that cancer likes an acidic environment.

    Anyway. Good post.
  • dmdwins
    dmdwins Member Posts: 454 Member
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    Nana b said:

    Oh gosh, Buzz!
    Snicker Bars and a Dr Pepper, I never craved that until I got cancer, then I learned that the little devil, called cancer was tempting me. When I knew better. My stomach has never been able to digest sugar properly. Talk about the most painful burping. My esophagus was saying, I do not like this!!

    I'm doing okay now with the sugar, but, in wasn't"t initially. I am also getting heartburn when I eat oranges. I need to look up citrus and an acidic tummy. I know that cancer likes an acidic environment.

    Anyway. Good post.

    Stage IV
    Hi Mary

    I, like you came to this board for encouragement from other Stage IVers. Hoping to find many who were NED or living well with Stage IV cancer. Many people posted as I am sure you will see to tell their stories. It was such a help to me. I would like to share some of my remission story to you....

    My original diagnosis was 10/2007 Stage IV Colon cancer, 5 positive nodes, with mets to left ovary( right ovary was not removed at that time as metastasis was not discovered until final pathology) I wanted the other ovary removed however my oncologist and gyne onc agreed that it was more important to start chemo as the other ovary was normal looking at surgery.
    I did 6 months of Folfox + Avastin. I was to continue 6 more months of Avastin alone however I developed a pulmonary embolis and could not continue the Avastin. Took awhile to get to feeling almost normal again but was enjoying life and spending time with my husband and daughters. My Pet scans were clear until 11/2008 when there was slight uptake in my right ovary. It was enough for my oncologist to agree to have it removed. It was positive for metastasis also. The thought is that it was not a recurrence but there initially and chemo kept it in check. My pelvic washing were negative for cancer so my oncologist and a consult oncologist at Mayo agreed that I should not have chemo post op since there was no evidence of any disease( I think they also did not want to exhaust my options for the future)

    I have not had to use that option and am very grateful for that. I have been NED since 11/2008 and just had a clear PET in 12/2010. I feel very blessed to be where I am today. I am back to work part-time and trying to remember to enjoy each moment. I feel well.

    It was very difficult to start living again....as I was concentrating so hard on not dying. But each day it got a little easier. As I filled my day with more normal activites and my scans continued to be clear the staring you in the face fear started getting pushed back. It is still there and rears its ugly head more than I would like as cancer has changed me forever but I am able to enjoy my life, appreciate it more, and be thankful to God that it has been over 3 years and I am living well.

    Hope and Smiles,
    Dawn
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    dmdwins said:

    Stage IV
    Hi Mary

    I, like you came to this board for encouragement from other Stage IVers. Hoping to find many who were NED or living well with Stage IV cancer. Many people posted as I am sure you will see to tell their stories. It was such a help to me. I would like to share some of my remission story to you....

    My original diagnosis was 10/2007 Stage IV Colon cancer, 5 positive nodes, with mets to left ovary( right ovary was not removed at that time as metastasis was not discovered until final pathology) I wanted the other ovary removed however my oncologist and gyne onc agreed that it was more important to start chemo as the other ovary was normal looking at surgery.
    I did 6 months of Folfox + Avastin. I was to continue 6 more months of Avastin alone however I developed a pulmonary embolis and could not continue the Avastin. Took awhile to get to feeling almost normal again but was enjoying life and spending time with my husband and daughters. My Pet scans were clear until 11/2008 when there was slight uptake in my right ovary. It was enough for my oncologist to agree to have it removed. It was positive for metastasis also. The thought is that it was not a recurrence but there initially and chemo kept it in check. My pelvic washing were negative for cancer so my oncologist and a consult oncologist at Mayo agreed that I should not have chemo post op since there was no evidence of any disease( I think they also did not want to exhaust my options for the future)

    I have not had to use that option and am very grateful for that. I have been NED since 11/2008 and just had a clear PET in 12/2010. I feel very blessed to be where I am today. I am back to work part-time and trying to remember to enjoy each moment. I feel well.

    It was very difficult to start living again....as I was concentrating so hard on not dying. But each day it got a little easier. As I filled my day with more normal activites and my scans continued to be clear the staring you in the face fear started getting pushed back. It is still there and rears its ugly head more than I would like as cancer has changed me forever but I am able to enjoy my life, appreciate it more, and be thankful to God that it has been over 3 years and I am living well.

    Hope and Smiles,
    Dawn

    Good for you Dawn......Good for you...Great read
    It gives all of us encouragement to persevere through the harsh stuff to see the other side of the rainbow...Clift
  • Erinb
    Erinb Member Posts: 293
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    Nana b said:

    Oh gosh, Buzz!
    Snicker Bars and a Dr Pepper, I never craved that until I got cancer, then I learned that the little devil, called cancer was tempting me. When I knew better. My stomach has never been able to digest sugar properly. Talk about the most painful burping. My esophagus was saying, I do not like this!!

    I'm doing okay now with the sugar, but, in wasn't"t initially. I am also getting heartburn when I eat oranges. I need to look up citrus and an acidic tummy. I know that cancer likes an acidic environment.

    Anyway. Good post.

    Nana
    I was suprised to learn that a lot of acidic things in nature like lemons come out alkaline in the urine or saliva.
  • bruins1971
    bruins1971 Member Posts: 227
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    Welcome and Congradulations
    I too was diagnosed stage 4 but at the young age of only 38 although I am now 39 as of last month.... I did basically the same as you colon surgery 5 rounds of chemo then liver resection with two tumors one on each lobe. Then I just finished up seven more rounds of chemo and I will have my scan on Feb 1st to make sure that they got it all and that it did not spread. I know in my heart that God has taken away this cancer and that I will be hear for many, many years to come to raise my 4 awesome children ages 19, 14, 4 and 6 months...yes I said 6 months I guess you could say I like to spread things out a bit...

    As for how to stay positive for me it's really easy. I am not saying I don't get my down times every once in a while but I stay focused on beating this cancer and living a long life for my family. My mother fought cancer for 18 years before she finally lost her battle. It started in the breast then the lung and then the pancreas and that's the kiss of death it seems. Stay busy and never let a day go by without enjoying the moments given to you. I am glad to see you finally posted and hope you will post more in the future.

    God Bless,
    Bobby in Dallas
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Hey
    Mary,

    You're already doing one of the best things for yourself right now, by being here. A support group can really hold you up under the pain and confusion and worry of a cancer diagnosis.

    Another thing that is SO emphasized by every doctor I've seen or any medical article I've read is exercise. I'm not as good about it as I should be, but when I do walk on a regular basis, I feel better, both physically and mentally.

    *hugs*
    Gail
  • hopeforcure49
    hopeforcure49 Member Posts: 111
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    dmdwins said:

    Stage IV
    Hi Mary

    I, like you came to this board for encouragement from other Stage IVers. Hoping to find many who were NED or living well with Stage IV cancer. Many people posted as I am sure you will see to tell their stories. It was such a help to me. I would like to share some of my remission story to you....

    My original diagnosis was 10/2007 Stage IV Colon cancer, 5 positive nodes, with mets to left ovary( right ovary was not removed at that time as metastasis was not discovered until final pathology) I wanted the other ovary removed however my oncologist and gyne onc agreed that it was more important to start chemo as the other ovary was normal looking at surgery.
    I did 6 months of Folfox + Avastin. I was to continue 6 more months of Avastin alone however I developed a pulmonary embolis and could not continue the Avastin. Took awhile to get to feeling almost normal again but was enjoying life and spending time with my husband and daughters. My Pet scans were clear until 11/2008 when there was slight uptake in my right ovary. It was enough for my oncologist to agree to have it removed. It was positive for metastasis also. The thought is that it was not a recurrence but there initially and chemo kept it in check. My pelvic washing were negative for cancer so my oncologist and a consult oncologist at Mayo agreed that I should not have chemo post op since there was no evidence of any disease( I think they also did not want to exhaust my options for the future)

    I have not had to use that option and am very grateful for that. I have been NED since 11/2008 and just had a clear PET in 12/2010. I feel very blessed to be where I am today. I am back to work part-time and trying to remember to enjoy each moment. I feel well.

    It was very difficult to start living again....as I was concentrating so hard on not dying. But each day it got a little easier. As I filled my day with more normal activites and my scans continued to be clear the staring you in the face fear started getting pushed back. It is still there and rears its ugly head more than I would like as cancer has changed me forever but I am able to enjoy my life, appreciate it more, and be thankful to God that it has been over 3 years and I am living well.

    Hope and Smiles,
    Dawn

    This great to here!
    This motivates me and gives me more hope. I am very happy for you Dawn... Blessings
  • hopeforcure49
    hopeforcure49 Member Posts: 111
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    Hi Mary
    Your story is just like mine. I was healthy aswell. I guess work related stress. I was diagnosed in 12/2009 with stage IV colorectal, had radiation and oral chemo. then in 4/2010 had colon resection and ileostomy, but I prayed they remove my uterus and ovaries. and I guess it was answered. It was too large and in the way at time of surgery. So I had it all removed at same time. Recovery was hard, but not too bad. But the bad news was that my surgeon felt a corn size lump on the surface of my liver. Yeap, it mets to liver with 5 lesions. My oncologist wanted me to start chemo right away. All was good my CEA levels were dropping. But when I hit the 10th cycle they increased to 25. Had my liver resection in 11/2010. But my cea levels elevated to 55 post 6 weeks if surgery. I restarted chemo. Had a CT scan done on the 1/13/2011. Will get results on wed. 1/19/2011. We'll see from there. We are all survivors. Some just take a little longer to recoupe. But have faith, Buzz is right, Live life, laugh enjoy family and friends. BLessings from Lourdes.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Welcome
    Welcome to the group. Sorry that you had to join us, but we are glad you found us. Don't look at statistics on the internet, they aren't accurate. There are a lot of people here that can give you some valuable information on Stage IV. Cancer can consume your every thought and motion. Try and divert your thoughts onto something else. At times it won't work, but if you just find things to busy yourself, you will find that you aren't thinking about it all the time. Hope that you post again.

    Kim
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Welcome Mary
    I am sorry you need to be here, but you have come to the right place. In terms of enjoying life, I think it is important to make plans, no matter how small so we have things to look forward to.