I'm Stage IV now, Any Stage IV Long Term Survivors?

mccoomb
mccoomb Member Posts: 15
in Esophageal Cancer #1
They tell me I am at stage 4 now, since I had a bone met in my skull March 2012. I have the cancer recurring in my remnant esophagus now, and node involvement n my neck. I will be starting chemo aqsap. They say this area was already radiated however during my chemoradiation and surgery in 2010, so it will not be radiated again. After this upcoming chemo a surgeon has suggested removal of my esoph. and replacing it with part of my intestine. My onco says this is a major operation which probably cannot be done laproscopically. So I will need to get a sense of whether it will buy me enough time to be worthwhile. Do stave IV patients survive for any considerable length of time? Mitch

Comments

  • jgwright
    jgwright Member Posts: 242
    #2
    5 years...
    I believe Sam Sagora lived for about 5 years after his diagnosis as Stage IV. Me, I've only been around since December of last year. My doctor doubts I'll make 2 years, but I plan on making a "liar" out of him.

    William, Paul, or Sherry will probably have more information.

    --Jerry
  • paul61
    paul61 Member Posts: 1,392 Member
    #3
    I believe only God knows how long we have
    Mitch,

    If anyone suggests to you that they can estimate your survival time as a Stage IV survivor I would say they are kidding themselves and misleading you. There are so many factors that enter into individual survival time; personal health profile, access to treatment methodologies, support systems, will to survive, overall life style, and some people even suggest heredity.

    I am aware of a number of Stage IV survivors that have gone beyond 5 years. If you post to the American Cancer Online Resource (ACOR) website:

    Click Here to go to the website

    And look for the EC subject area you will find a number of long term Stage IV survivors.
    My personal opinion is that there is a balance between quality of life and quantity of years and only the person who is living with cancer and its effects can decide what that balance is for them.

    I would definitely get input from more than one surgeon before I embarked on a second surgery that was as invasive as the one you are describing.

    I wish you many more years as a survivor.

    Best Regards,

    Paul Adams
    Grand Blanc, Michigan

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Amjosmom
    Amjosmom Member Posts: 212
    #4
    Paul said it best!
    No one knows but the One. My Dad was given 4 months to live in August of 2010. Obviously, he outlived that bunch of hooey! He is doing well, considering having EC with mets to bone and liver. We are using A LOT of holistic and integrative medicine. Everyone is different. I would also seek another opinion on such an invasive surgery. Don't give up!

    ~Jayme
    Dad Stage IV EC
    DX 2010
  • NGC1514
    NGC1514 Member Posts: 46 Member
    #5
    jgwright said:

    5 years...
    I believe Sam Sagora lived for about 5 years after his diagnosis as Stage IV. Me, I've only been around since December of last year. My doctor doubts I'll make 2 years, but I plan on making a "liar" out of him.

    William, Paul, or Sherry will probably have more information.

    --Jerry

    Stage 4 survival
    A tough question to answer. A woman on the ACOR EC list has survived more than 35 years after a stage 4 diagnosis. A friend here in Atlanta was diagnosed 4 with mets to the lungs. While I don't remember all his treatments, he was treated with chemo and it cleared up. He suffered a recurrence a couple of years later to a bone in his neck, was treated with radiation and it cleared up. A few years later he was diagnosed with a new primary to his lung. The small tumor was excised and it cleared up.

    He was initially diagnosed Stage 4 12 years ago and never had surgery. He continues to do well.

    Quite honestly, I don't know why your doc is suggesting a full colonic replacement for your esophagus. You mention the remnant of your esophagus which means you've already had an esophagectomy. Did you ask your doc what would be accomplished by going through all that again?

    Eric in Atlanta
    DX 10/6/2000
    Surgery 4/9/2001
    Still hanging in.
  • goty2001
    goty2001 Member Posts: 71
    #6
    Amjosmom said:

    Paul said it best!
    No one knows but the One. My Dad was given 4 months to live in August of 2010. Obviously, he outlived that bunch of hooey! He is doing well, considering having EC with mets to bone and liver. We are using A LOT of holistic and integrative medicine. Everyone is different. I would also seek another opinion on such an invasive surgery. Don't give up!

    ~Jayme
    Dad Stage IV EC
    DX 2010

    2nd Anjo'smom
    I'm stage 4, inoperable and not a candidate for radiation. Not a long term survivor yet, but intend to be, and after 3 rounds of IV and with xloda everyday for 7 weeks without breaks - when I've kept with the holistic/nutritional route it's leaving me feeling better, fitter, with more energy, than before, or any time in the last 20 years. In my opinion oncology/chemo & surgery are weapons for half the battle only.
  • jgwright
    jgwright Member Posts: 242
    #7
    goty2001 said:

    2nd Anjo'smom
    I'm stage 4, inoperable and not a candidate for radiation. Not a long term survivor yet, but intend to be, and after 3 rounds of IV and with xloda everyday for 7 weeks without breaks - when I've kept with the holistic/nutritional route it's leaving me feeling better, fitter, with more energy, than before, or any time in the last 20 years. In my opinion oncology/chemo & surgery are weapons for half the battle only.

    Keeping that in mind
    What exactly are you getting in the IV??? When I find out, 'll post your regimen to my oncologist and maybe it'll work for me. Totally agree that chemo/rads/surgery etc., is only half the battle.

    --Jerry
  • goty2001
    goty2001 Member Posts: 71
    #8
    jgwright said:

    Keeping that in mind
    What exactly are you getting in the IV??? When I find out, 'll post your regimen to my oncologist and maybe it'll work for me. Totally agree that chemo/rads/surgery etc., is only half the battle.

    --Jerry

    treatments
    Jerry, I'm on oxaliplatin and herceptin (I'm HER2+) introveneously every 3 weeks, and 3g xloda every day.
  • ebawa
    ebawa Member Posts: 38
    #9
    Stage IV
    I was diagnosed stage III in Feb 11, mets to liver stage IV in June 2011. Clean scans started in Oct 11, so far so good but I have another scan on Sept 5th and another endoscopy on the 19th. Prior to clean scans I had two series of Chemo and 28 sessions of radiation. No surgery.
  • ECson
    ECson Member Posts: 26
    #10
    ebawa said:

    Stage IV
    I was diagnosed stage III in Feb 11, mets to liver stage IV in June 2011. Clean scans started in Oct 11, so far so good but I have another scan on Sept 5th and another endoscopy on the 19th. Prior to clean scans I had two series of Chemo and 28 sessions of radiation. No surgery.

    My Dad
    Was diagnosed Nov 12, 2011 and staged IV Nov 19th or so. We started Cisplatin, Taxotere, and 5 day infusion pump 5FU on November 30th, followed that with 25 rounds of rads. My Dad has had two endos with biopsies and two PETs that show NED. Tumor board gave him 6-12 months....so we're hoping for the long term remission at 3-5 years that they have said is a possibility. Not long term yet, but he is working daily at it.
  • stephikindred
    stephikindred Member Posts: 140
    #11
    ECson said:

    My Dad
    Was diagnosed Nov 12, 2011 and staged IV Nov 19th or so. We started Cisplatin, Taxotere, and 5 day infusion pump 5FU on November 30th, followed that with 25 rounds of rads. My Dad has had two endos with biopsies and two PETs that show NED. Tumor board gave him 6-12 months....so we're hoping for the long term remission at 3-5 years that they have said is a possibility. Not long term yet, but he is working daily at it.

    Your dad
    Wow your dad was diagnosed right around the same time my mom was diagnosed. She was not given the option for radiation and her cancer has progressed. I wonder if it was the radiation that made the difference. Congratulations on NED!
  • DanTheMan
    DanTheMan Member Posts: 24
    #12
    stage 4 survivor
    Im 37 and stage 4a,inoperable and spread to distant lymph nodes, diagnosed and treated in june/july 2010 with chemo and radiation.Im still alive so i guess that makes me a survivor?long term,well im not sure about that..the doctor did say i wouldnt survive this long but i have so who knows.I will get back to you in 3 years :)
  • stephikindred
    stephikindred Member Posts: 140
    #13
    DanTheMan said:

    stage 4 survivor
    Im 37 and stage 4a,inoperable and spread to distant lymph nodes, diagnosed and treated in june/july 2010 with chemo and radiation.Im still alive so i guess that makes me a survivor?long term,well im not sure about that..the doctor did say i wouldnt survive this long but i have so who knows.I will get back to you in 3 years :)

    Dan, you are the man!
    Good for you! Keep on keeping on! I love to hear this type of news. You're definitely a survivor.
  • Ginny_B
    Ginny_B Member Posts: 532
    #14
    DanTheMan said:

    stage 4 survivor
    Im 37 and stage 4a,inoperable and spread to distant lymph nodes, diagnosed and treated in june/july 2010 with chemo and radiation.Im still alive so i guess that makes me a survivor?long term,well im not sure about that..the doctor did say i wouldnt survive this long but i have so who knows.I will get back to you in 3 years :)

    Well, that explains your
    Well, that explains your name, Dan! A brave Dan the Man!
  • mccoomb
    mccoomb Member Posts: 15
    #15
    ECson said:

    My Dad
    Was diagnosed Nov 12, 2011 and staged IV Nov 19th or so. We started Cisplatin, Taxotere, and 5 day infusion pump 5FU on November 30th, followed that with 25 rounds of rads. My Dad has had two endos with biopsies and two PETs that show NED. Tumor board gave him 6-12 months....so we're hoping for the long term remission at 3-5 years that they have said is a possibility. Not long term yet, but he is working daily at it.

    Hi ebawa, how did your
    Hi ebawa, how did your latest scan turn out?
    I started chemo again now, 2 weeks done out of 16. It is pretty rough on my mouth gums, stomach even bloody stool.
    I am on taxotere, cisplatin and 5 fu.
    Good luck with your latest results,
    Mitch
  • ebawa
    ebawa Member Posts: 38
    #16
    mccoomb said:

    Hi ebawa, how did your
    Hi ebawa, how did your latest scan turn out?
    I started chemo again now, 2 weeks done out of 16. It is pretty rough on my mouth gums, stomach even bloody stool.
    I am on taxotere, cisplatin and 5 fu.
    Good luck with your latest results,
    Mitch

    Scans
    Hello Mitch,

    My scans came back clean thank God. I had another endoscopy this week and they said my esophagus looks fine with no signs of cancer. I am waiting for biopsy results but they tell me everything looks great.

    Sorry to hear you are having a rough patch with the chemo, hang in there, I was pretty down when I had to start my second round but it did its job as I was blessed to celebrate my 54th birthday yesterday.

    Do you have Biotene to prevent and cure the moth sores? It really helped me.

    Thanks for your wishes, I will have you in my prayers.
  • jgwright
    jgwright Member Posts: 242
    #17
    DanTheMan said:

    stage 4 survivor
    Im 37 and stage 4a,inoperable and spread to distant lymph nodes, diagnosed and treated in june/july 2010 with chemo and radiation.Im still alive so i guess that makes me a survivor?long term,well im not sure about that..the doctor did say i wouldnt survive this long but i have so who knows.I will get back to you in 3 years :)

    Your Job...
    ...Dan, is to make your doctor a liar. That's my job too. Attitude is everything. 10% of life is what happens to us, 90% is how we respond. So go for it.

    --Jerry
  • mccoomb
    mccoomb Member Posts: 15
    #18
    ebawa said:

    Scans
    Hello Mitch,

    My scans came back clean thank God. I had another endoscopy this week and they said my esophagus looks fine with no signs of cancer. I am waiting for biopsy results but they tell me everything looks great.

    Sorry to hear you are having a rough patch with the chemo, hang in there, I was pretty down when I had to start my second round but it did its job as I was blessed to celebrate my 54th birthday yesterday.

    Do you have Biotene to prevent and cure the moth sores? It really helped me.

    Thanks for your wishes, I will have you in my prayers.

    Good for you Dan! I look
    Good for you Dan! I look forward to a few clean scans as this round of treatments
    draws to a close. They prescribed for me a mouthwash which includes lydocaine
    to numb the roof of my mouth and gums, it does help. Good Luck! Mitch

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