Update on Mark and your help please

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fredswilma
fredswilma Member Posts: 185
in Esophageal Cancer #1
Hi all
First just want to apologise for my somewhat erratic posting at the moment, I do follow all posts daily, sometimes twice daily and my heart breaks and rejoices with you all. As those of you who have followed my posts my husband is stg iv with mets to the lungs, he has finished all chemo and is now palliative care only.
We live in NZ and so our health system is not quite the same here from what I can gather, our problem is this, Mark is finding it more and more difficult to swallow, it is heartbreaking to see him struggle to eat, so many things are now off the menu, even last night fish got stuck and he had to bring it all up, he is relying more and more on ensure to get sufficient calories the weight loss is frightening, before EC he was around 95kg now about 70kg.
With palliative care in NZ they will not give him a feeding tube, (think they would prefer to starve him to death), they have talked about inserting a stent, I am terrified of this, a few months ago they tried to do a eosaphageal stretch but because of scarring they wouldn't, scared that they would tear his eosaphagus, surely inserting a stent would have the same effect. I am so scared and sad just don't know what to do, it seems we are stuck between a rock and a hard place, you know damned if we do damned if we don't, any ideas?, I really do not know what is best.
Thank you all in advance.
Ann

Comments

  • sangora
    sangora Member Posts: 213
    #2
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    Stint
    Ann, after Lee's (Lee in London) experience with having the stint placed in the late stages, I personnaly wouldn't touch that with a ten foot pole. If the esophagus is too scared for a stretch, then common sense would indicate that the stint could potentally cause tears as well. I believe that is what happened in Lee's case. My docotor keeps bringing up the stinit and I keep moving on. I can't see that the benefits outway the problems and potential dangers and when confronted with this, my doctor changes the subject. This is just my take, I am not a doctor, but have done a lot of readiing on this site and other material on the stint and I am skeptical. On the other hand I have a feeding tube so the idea of starving to death is not in my future. You all have a hard choice to deal with and you have my prayers and concern as you wrestle with it. Sam
  • Daisylin
    Daisylin Member Posts: 365
    #3
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    sangora said:

    Stint
    Ann, after Lee's (Lee in London) experience with having the stint placed in the late stages, I personnaly wouldn't touch that with a ten foot pole. If the esophagus is too scared for a stretch, then common sense would indicate that the stint could potentally cause tears as well. I believe that is what happened in Lee's case. My docotor keeps bringing up the stinit and I keep moving on. I can't see that the benefits outway the problems and potential dangers and when confronted with this, my doctor changes the subject. This is just my take, I am not a doctor, but have done a lot of readiing on this site and other material on the stint and I am skeptical. On the other hand I have a feeding tube so the idea of starving to death is not in my future. You all have a hard choice to deal with and you have my prayers and concern as you wrestle with it. Sam

    Ann,
    If you decide to get the stent, PLEASE make sure they check his blood counts first. Our doctor that did Lee's stent practically admitted (without actually admitting it, of course) that Lee's blood was way too thin, and he should have had blood work done first. (Why they didn't do that I have no idea, but what's done is done and there's no changing that now) She said if she realized how thin his blood was, she never would have done the stent. Again, why would she not have checked first?????? Don't get me going. Compounded with that of course for Lee, was that his liver was all but failed, so between the two, there was not much hope.

    She did mention that most people do have some small cuts during placement, however, if the blood is good, the blood will clot normally and healing would not have been an issue. That being said, she was also the one who did his stretch, only a week or so earlier, and she commented on how hard it was to get the tiny wire in to do the stretch. She pushed hard for the stent, because she thought that if she kept stretching him, eventually he'd get a large tear and bleed to death. Well, that happened anyways...... I would not wish that on my worst enemy, trust me, it was horrible for him, and probably even more so for me. (He was in a bit of a confused and denial state for the last few weeks, not really sure he understood how dire the situation was)

    I don't know what to say as far as advice, I'm torn. Especially if they won't do a feeding tube. That is absolutely horrid that they won't give him one. Lee had a feeding tube, but he was choking on saliva, hence the stent. You have a very hard choice to make, and as you said, neither choice is a good one. We felt the same way, either face constant aspiration, or risk the stent. I don't even know what I would do if I had the chance to make that choice again. We were warned by many people here against it ahead of time. I guess maybe we should have listened.....

    Hoping you make the right choice, whatever that may be, so sorry for what you are going through.....
    Chantal
  • minikit
    minikit Member Posts: 23
    #4
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    Hi Ann
    I am also in good old
    Hi Ann

    I am also in good old NZ, services are being cut and it is becoming more difficult to obtain certain items, eg prepared ensure. May I suggest a nasal feed, perhaps engage H&D advocate.
    Kit
  • Unknown
    Unknown
    #5
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    This comment has been removed by the Moderator
  • chemosmoker
    chemosmoker Member Posts: 501
    #6
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    WOW you got the best money and experience can buy!!!
    Good God, between Sam, Chantal and Sherri you have gotten the best advice a human being could have DREAMED of Ann. A Plethora of information, advice, experience and hope that is ALL right on the money.

    ME: NO STENT. Death first.

    FIGHT FOR THAT FEEDING TUBE....MAKE SOME REAL NOISE. SQUEAKY WHEEL STUFF THIS IS LIFE OR DEATH HERE ANN. OK?? PPPPPPPPPLEASE!!!

    Stretch if needed as needed. Pain management, and they said all the rest. I would print this thread and read and re-read what they said.

    Priceless. I am saving this one for future posters asking similar questions!!
    Another "William" oft quoted and shared post on its way. LOL


    Love to you Ann and God bless. I don't envy you but I AM grateful you have such great support here and good advice to follow.

    With all of my love and prayers,
    Eric
  • fredswilma
    fredswilma Member Posts: 185
    #7
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    chemosmoker said:

    WOW you got the best money and experience can buy!!!
    Good God, between Sam, Chantal and Sherri you have gotten the best advice a human being could have DREAMED of Ann. A Plethora of information, advice, experience and hope that is ALL right on the money.

    ME: NO STENT. Death first.

    FIGHT FOR THAT FEEDING TUBE....MAKE SOME REAL NOISE. SQUEAKY WHEEL STUFF THIS IS LIFE OR DEATH HERE ANN. OK?? PPPPPPPPPLEASE!!!

    Stretch if needed as needed. Pain management, and they said all the rest. I would print this thread and read and re-read what they said.

    Priceless. I am saving this one for future posters asking similar questions!!
    Another "William" oft quoted and shared post on its way. LOL


    Love to you Ann and God bless. I don't envy you but I AM grateful you have such great support here and good advice to follow.

    With all of my love and prayers,
    Eric

    Thank you
    Sherri, Sam, Chantal, Eric and Kit
    Your advice as always so useful, I am going to enquire some more about a stretch I kind of thought that as he couldn't get the first one that maybe that was not an option, fingers crossed that might give Mark some relief.
    Sherri Mark has been on fish oil tablets for most of the last year, thanks to you, and my pressure cooker is used so regularly though, even with the most mushed up food, it is still getting stuck, he has been having porridge for brekkie, now its more like warm milk with some oats thrown in for good measure, with regards to a stent, Eric, Chantal and Sam we really are not keen but if we can't get a feeding tube, and yes Eric I have kicked up a storm, then maybe the stent might be the only option left, will try for a stretch first though.
    Kit it is nice to meet a fellow Kiwi, I looked up your profile, nothing there, would love to know more about where your at.
    Once again thanks for your support and advice, don't know where I would be without this site, its like having an online support crew that understands where I am at.
    Love to you all
    Ann
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #8
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    fredswilma said:

    Thank you
    Sherri, Sam, Chantal, Eric and Kit
    Your advice as always so useful, I am going to enquire some more about a stretch I kind of thought that as he couldn't get the first one that maybe that was not an option, fingers crossed that might give Mark some relief.
    Sherri Mark has been on fish oil tablets for most of the last year, thanks to you, and my pressure cooker is used so regularly though, even with the most mushed up food, it is still getting stuck, he has been having porridge for brekkie, now its more like warm milk with some oats thrown in for good measure, with regards to a stent, Eric, Chantal and Sam we really are not keen but if we can't get a feeding tube, and yes Eric I have kicked up a storm, then maybe the stent might be the only option left, will try for a stretch first though.
    Kit it is nice to meet a fellow Kiwi, I looked up your profile, nothing there, would love to know more about where your at.
    Once again thanks for your support and advice, don't know where I would be without this site, its like having an online support crew that understands where I am at.
    Love to you all
    Ann

    Hi Ann
    I would agree with
    Hi Ann
    I would agree with the others, go for the stretch and fight for that feeding tube. Your husband's quality of life is s important now. My dad passed from EC in 2010. He had a stent put in and it worked fine, until the cancer went to his liver. The dr who put the stent in said my dad had alot of scar tissue around the esophagus area caused from the radiation. Hope this helps. Just remember it is his cancer, let him make the decisions concerning his treatment. You will both know when enough is enough. I have been where you are. If I knew then what I know now, I would have done things differently with my dad. Keep in touch.
    Tina in VA
  • Patsy39
    Patsy39 Member Posts: 1 Member
    #9
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    Hi

    I am new to the site but would like to have up to date information on oesophageal stents, if anyone can help.

    I have been told I should have a stent as I am having so much trouble swallowing.

    This sad post was posted in 2011 and I am hoping things have moved on a bit.

    Thank you

    Patsy39

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