Why isn't surgery offered to Stage4 patients

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Comments

  • mardigras
    mardigras Member Posts: 215 Member
    #22
    Daisylin said:

    stopping chemo
    William is so very right!! Before you decide anything about chemo, get a jtube put in. This may seem like an icky thing to to, but trust me, and the others who've had experience with it. Your energy levels and overall feeling of well being will improve. You will tolerate treatment better. We had to fight tooth and nail to get one in, but being a blabbermouth persistent nag finally got us one! Thanks of course to the people here who counselled us and told us more than our doctors ever did.

    As for chemo, I am Chantal, wife of LeeinLondon that William mentioned above. He was affected horribly by chemo, and his life during treatment was miserable. Once he finally decided to stop chemo it was too late for quality. Of course, this is not the case for everyone, people seem to tolerate it differently for whatever reason. I have not updated my 'about me' page recently, but it may be a bit more informative than Lee's as far as his treatment plan. Up until our dear friend Chemosmoker came along discussing his choice not to have any chemo ever, we did not even consider it as an option. Now, in retrospect, I wish that Lee had made that same choice. He passed away in November, at the age of 49. He may have been afforded some quality time had he chosen no chemo. In his case, he got neither quality or quantity. From what we know of Eric (chemosmoker) he had about the same life span as Lee, but far more quality. It's completely a personal decision, and everyone handles the drug differently.

    And finally, about surgery, we were told pretty much exactly what TerryV said. Even if they were to remove the esophagus the cancer is still going to be there, in the case of a stage iv. They don't see much point performing surgery if they can't remove all of the cancer. In your case, as with my husband as well, it had spread too distantly.

    I have not posted here very often since I lost Lee, I have been trying to read most of the posts, but it's just so hard having to re-live this nightmare over and over again. Please know, I think of all of you often and pray that you all will beat this, and move on to better days.

    be well my dear friends,
    Chantal

    Hello Chantal, how lovely to see a post from you
    Hi Chantal,
    I just wanted to say how lovely it was to hear from you.
    I know that we all wonder how you and Eric's wife are
    faring. You were such a help to so many people and you
    gave so unselfishly of your time and energy to us all.
    I think about you often and thank you so much.
    I wish you peace, happiness and love Chantal.
    May god bless you and keep you.
    Hugs and prayers
    Marci x
  • mardigras
    mardigras Member Posts: 215 Member
    #23
    Daisylin said:

    stopping chemo
    William is so very right!! Before you decide anything about chemo, get a jtube put in. This may seem like an icky thing to to, but trust me, and the others who've had experience with it. Your energy levels and overall feeling of well being will improve. You will tolerate treatment better. We had to fight tooth and nail to get one in, but being a blabbermouth persistent nag finally got us one! Thanks of course to the people here who counselled us and told us more than our doctors ever did.

    As for chemo, I am Chantal, wife of LeeinLondon that William mentioned above. He was affected horribly by chemo, and his life during treatment was miserable. Once he finally decided to stop chemo it was too late for quality. Of course, this is not the case for everyone, people seem to tolerate it differently for whatever reason. I have not updated my 'about me' page recently, but it may be a bit more informative than Lee's as far as his treatment plan. Up until our dear friend Chemosmoker came along discussing his choice not to have any chemo ever, we did not even consider it as an option. Now, in retrospect, I wish that Lee had made that same choice. He passed away in November, at the age of 49. He may have been afforded some quality time had he chosen no chemo. In his case, he got neither quality or quantity. From what we know of Eric (chemosmoker) he had about the same life span as Lee, but far more quality. It's completely a personal decision, and everyone handles the drug differently.

    And finally, about surgery, we were told pretty much exactly what TerryV said. Even if they were to remove the esophagus the cancer is still going to be there, in the case of a stage iv. They don't see much point performing surgery if they can't remove all of the cancer. In your case, as with my husband as well, it had spread too distantly.

    I have not posted here very often since I lost Lee, I have been trying to read most of the posts, but it's just so hard having to re-live this nightmare over and over again. Please know, I think of all of you often and pray that you all will beat this, and move on to better days.

    be well my dear friends,
    Chantal

    Hello Chantal, how lovely to see a post from you
    Hi Chantal,
    I just wanted to say how lovely it was to hear from you.
    I know that we all wonder how you and Eric's wife are
    faring. You were such a help to so many people and you
    gave so unselfishly of your time and energy to us all.
    I think about you often and thank you so much.
    I wish you peace, happiness and love Chantal.
    May god bless you and keep you.
    Hugs and prayers
    Marci x
  • mardigras
    mardigras Member Posts: 215 Member
    #24
    Daisylin said:

    stopping chemo
    William is so very right!! Before you decide anything about chemo, get a jtube put in. This may seem like an icky thing to to, but trust me, and the others who've had experience with it. Your energy levels and overall feeling of well being will improve. You will tolerate treatment better. We had to fight tooth and nail to get one in, but being a blabbermouth persistent nag finally got us one! Thanks of course to the people here who counselled us and told us more than our doctors ever did.

    As for chemo, I am Chantal, wife of LeeinLondon that William mentioned above. He was affected horribly by chemo, and his life during treatment was miserable. Once he finally decided to stop chemo it was too late for quality. Of course, this is not the case for everyone, people seem to tolerate it differently for whatever reason. I have not updated my 'about me' page recently, but it may be a bit more informative than Lee's as far as his treatment plan. Up until our dear friend Chemosmoker came along discussing his choice not to have any chemo ever, we did not even consider it as an option. Now, in retrospect, I wish that Lee had made that same choice. He passed away in November, at the age of 49. He may have been afforded some quality time had he chosen no chemo. In his case, he got neither quality or quantity. From what we know of Eric (chemosmoker) he had about the same life span as Lee, but far more quality. It's completely a personal decision, and everyone handles the drug differently.

    And finally, about surgery, we were told pretty much exactly what TerryV said. Even if they were to remove the esophagus the cancer is still going to be there, in the case of a stage iv. They don't see much point performing surgery if they can't remove all of the cancer. In your case, as with my husband as well, it had spread too distantly.

    I have not posted here very often since I lost Lee, I have been trying to read most of the posts, but it's just so hard having to re-live this nightmare over and over again. Please know, I think of all of you often and pray that you all will beat this, and move on to better days.

    be well my dear friends,
    Chantal

    duplicate post - sorry
    duplicate post - sorry
  • beowulf88
    beowulf88 Member Posts: 23
    #25
    goty2001 said:

    neither surgery nor radiotherapy
    I thought that was the definition of stage IV .. ie IV is synonomous with inoperable? I've been told mine is too advanced for either surgery or radiotherapy. How do I go about challenging that? In the meantime, a quasi Gerson type regime is keeping me actually very fit & healthy (although only 2 weeks into chemo & daily 3000mg xloda).

    You take the xloda every
    You take the xloda every day. I get a 5fu bottle every other week as well as cisplatin and toxel. Is the xloda in lieu of the bottle and what side effects does it have? You seem to be doing well. I'm on my 12th treatment and am so far so good. Not in the shape I was in when I got my DX in January but don't feel I'm losing the fight. They have removed tumours in stage 4 patients as a form of paliative care. I was just wondeering if anyone had it done and how they were doing. I read a post where he's 6 years from surgery and still around, so maybe it's an option.
    Thanks for any insight you can give, Bill
  • beowulf88
    beowulf88 Member Posts: 23
    #26
    unknown said:

    This comment has been removed by the Moderator

    Hi William, as always thanks
    Hi William, as always thanks for the info. What's the difference between a jtube and a peg. I had a peg put in but had to have it taken out because it was in the way. Not something I was going to need. Does it come with a tube sticking out of you or is it not so invasive? I see a lot of talk about the jtube on this site. If I can drink a shake, what benefit does the tube give me?
    Thanks, Bill
  • beowulf88
    beowulf88 Member Posts: 23
    #27
    captdave said:

    I personally only know of
    I personally only know of one stage IV who has had surgery and that is my cousin. In fact I just saw him yesterday and we were talking about our surgeries and our surgeon. Any way, he had his surgery I believe six years ago and is doing well. His surgery was performed at the VA hospital in Seattle by University of Washington Surgeon Mike Mulligan. Now I can speak of Dr. Mulligan's skill as he was also my surgeon. He is in my opinion a rock star! There are surgeons out there who will operate on stage IV EC patients although I'm sure they have a very specific criteria on who is a surgical candidate at stage IV.

    Dave

    Hi Dave, did he have a chemo
    Hi Dave, did he have a chemo or radiation therapy to get the cancer that spread after surgery? I'm in pretty good shape after all the chemo I've had and was looking for someone who had the surgery and was a long term survivor. Just curius where the mets were and how bad?
  • beowulf88
    beowulf88 Member Posts: 23
    #28
    cindyruggs said:

    My husband is stage IV
    My husband is stage IV


    My husband Rocky is stage IV and was DX on October 4, 2011. He has had clean scans since the end of January. We are going on 10 months, so he has already outlived the prognosis that was first given. He has only missed a couple of days of work due to chemo, he eats anything he wants, he has no issues swallowing, and most days you would never know he is sick. He lost 20 pounds initially with the harder chemo but has put most of that back on now even though that was weight he needed to lose :-).

    You can read more of the details in the about me section. We were told that surgery was not an option due to over 17 lymph nodes being involved and massive liver mets. They could not even distinguish his liver there were so many mets. All scans to date show NED, that's a WOW! That is also a big praise! We do not know how much longer the remission will last, that is the hard part. The doctor told us the other day we are beating the odds, who know's remission might last years. That was a first from our doctor who tends to be brutally honest. The fact is, none of us know. We take each new day as it comes, pray and make memories while we can.

    Cindy

    Those seem like excellent
    Those seem like excellent results. Wish I could say the same. I'll have another scan in a couple of weeks and see what happens. Good luck with everything, so happy to se good news on thei site.
  • Unknown
    Unknown
    #29
    beowulf88 said:

    Hi William, as always thanks
    Hi William, as always thanks for the info. What's the difference between a jtube and a peg. I had a peg put in but had to have it taken out because it was in the way. Not something I was going to need. Does it come with a tube sticking out of you or is it not so invasive? I see a lot of talk about the jtube on this site. If I can drink a shake, what benefit does the tube give me?
    Thanks, Bill

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #30
    beowulf88 said:

    Hi William, as always thanks
    Hi William, as always thanks for the info. What's the difference between a jtube and a peg. I had a peg put in but had to have it taken out because it was in the way. Not something I was going to need. Does it come with a tube sticking out of you or is it not so invasive? I see a lot of talk about the jtube on this site. If I can drink a shake, what benefit does the tube give me?
    Thanks, Bill

    This comment has been removed by the Moderator
  • jaycc
    jaycc Member Posts: 122
    #31
    beowulf88 said:

    You take the xloda every
    You take the xloda every day. I get a 5fu bottle every other week as well as cisplatin and toxel. Is the xloda in lieu of the bottle and what side effects does it have? You seem to be doing well. I'm on my 12th treatment and am so far so good. Not in the shape I was in when I got my DX in January but don't feel I'm losing the fight. They have removed tumours in stage 4 patients as a form of paliative care. I was just wondeering if anyone had it done and how they were doing. I read a post where he's 6 years from surgery and still around, so maybe it's an option.
    Thanks for any insight you can give, Bill

    On the flip side
    For my husband quality of life was very good for 6 months, but once his body could not take in the Oxyplatin , the second set of chemo had little impact. We needed to act faster,and should of had some options lined up the clock began ticking fast. Just an opinion enjoy your good days, and maybe with a help of a caregiver push to have the next options lined up.
    In those tough last 2 months, he always had a clear mind, I'm gratefully for that.

    Just an added note for Surgery,my husband needed 2, liver transplant (mets covered like a net over the liver (unusual), then Esphog. For the liver transplant the immune system has to be shut down, and the surgeons that turned him away felt the EC cells would grow even faster on liver transplant recovery.
    So learning, don't wait to start targeted treatment of critical organs.
    Sounds like others had success with radiation liver treatment and then surgery for other areas.
  • goty2001
    goty2001 Member Posts: 71
    #32
    beowulf88 said:

    You take the xloda every
    You take the xloda every day. I get a 5fu bottle every other week as well as cisplatin and toxel. Is the xloda in lieu of the bottle and what side effects does it have? You seem to be doing well. I'm on my 12th treatment and am so far so good. Not in the shape I was in when I got my DX in January but don't feel I'm losing the fight. They have removed tumours in stage 4 patients as a form of paliative care. I was just wondeering if anyone had it done and how they were doing. I read a post where he's 6 years from surgery and still around, so maybe it's an option.
    Thanks for any insight you can give, Bill

    Yes- I take the xloda every day
    don't get the 1 in three weeks off that many takers get. I think they think I'm able for it (sort of am so far). Just had my 2nd Ive session and had a worse reaction that before with a temperature... in fact have come back into hospital for observation but afetr 36 hrs it has mostly passed and was on day release today.

    XLODA is the tablet version of 5fu. I don't thnk i got many side effects from xloda .. more from the IVtreatments (I need to start remembering the names.. one was herceptin which I switched to this round as I'm Her2 positive .. Still figuring out if that's good or bad).
  • NLMCEM
    NLMCEM Member Posts: 50
    #33
    Daisylin said:

    stopping chemo
    William is so very right!! Before you decide anything about chemo, get a jtube put in. This may seem like an icky thing to to, but trust me, and the others who've had experience with it. Your energy levels and overall feeling of well being will improve. You will tolerate treatment better. We had to fight tooth and nail to get one in, but being a blabbermouth persistent nag finally got us one! Thanks of course to the people here who counselled us and told us more than our doctors ever did.

    As for chemo, I am Chantal, wife of LeeinLondon that William mentioned above. He was affected horribly by chemo, and his life during treatment was miserable. Once he finally decided to stop chemo it was too late for quality. Of course, this is not the case for everyone, people seem to tolerate it differently for whatever reason. I have not updated my 'about me' page recently, but it may be a bit more informative than Lee's as far as his treatment plan. Up until our dear friend Chemosmoker came along discussing his choice not to have any chemo ever, we did not even consider it as an option. Now, in retrospect, I wish that Lee had made that same choice. He passed away in November, at the age of 49. He may have been afforded some quality time had he chosen no chemo. In his case, he got neither quality or quantity. From what we know of Eric (chemosmoker) he had about the same life span as Lee, but far more quality. It's completely a personal decision, and everyone handles the drug differently.

    And finally, about surgery, we were told pretty much exactly what TerryV said. Even if they were to remove the esophagus the cancer is still going to be there, in the case of a stage iv. They don't see much point performing surgery if they can't remove all of the cancer. In your case, as with my husband as well, it had spread too distantly.

    I have not posted here very often since I lost Lee, I have been trying to read most of the posts, but it's just so hard having to re-live this nightmare over and over again. Please know, I think of all of you often and pray that you all will beat this, and move on to better days.

    be well my dear friends,
    Chantal

    sorry for your lose but thank you for sharing
    Dear Chantal, My husband did have surgery and for 1 1/2 years all his scans showed cancer free. This past week they show 5 small circles in his lungs and at this time say a biopsy is out of the question due to their size. They want to have us go on our planned 1 week vacation and come back for another pet scan and at that time make a decision if the biopsy is still not an option to start 1 of 2 possible chemo treatments. I also want Nino to have quality over quantity and your post and some of the others are what I needed to read to help me help Nino with what is best for him when he decides what he wants to do. Thank you and again sorry for your lose of Lee.
    Carolyn (wife to Nino)
  • NLMCEM
    NLMCEM Member Posts: 50
    #34
    unknown said:

    This comment has been removed by the Moderator

    messaged you before I read post
    Dear William so glad to see you are doing well. I have been so busy with my grandchild, work and Nino I have not been on here. First off thanks to you and others for making these post to give us HOPE. Nino's esophageal cancer surgery went well although he has constant pain in his side and eating is still a problem with many stretching s. Scan this week shows possible spread to lungs. The doctors say chemo will be in order. no other cancer any where else shows just the lungs. Nino had the j tube first round then surgery and the j tube was no fun for him at all, he was in constant pain from it and like you fed all night while sleeping as we could not get the rate higher then 35. They have not mentioned another j tube with this new round of chemo so we will have to see how it effects his eating. Nino is also always fatigued and unable to work. So glad to see you are still posting.
    Carolyn (Ninos wife)

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