sherri-please answer me ok

lindadanis
lindadanis Member Posts: 235
edited March 2014 in Esophageal Cancer #1
you and I have talked before Sherri, his doctor does not want to put in a feeding tube nor does eddie want one right from the beginning. We see an oncologist where there are four other doctors, should I ask for a second opinion before we start chemo tomorrow. I have thought about this before but ed just says "no" leave everything alone. He did have iv fluids friday in the office and he had lost 5 pounds in three days., the doctor did not make a big deal out of it., I am getting very frustrating and ed and I are fighting, I do not know what is going on with him because he is a very distant man even before this cancer. I am sure if they think his body cannot handle anymore chemo, they will not give it. the doctor said friday to me and my daughter " I do not have much hope on this new chemo because Ed is not a fighter, he never has been, and this definately affects how the chemo will do". We both got very mad and left the office. Ed has just finished three rounds of cisplatin and campostar and last week's pet scan showed no benefit at all, in fact, his cancer grew even more spots on his liver and stomch.

What do you think, is he wasting his time treating this with chemo?????

thanks so much Sheri,

Linda

Comments

  • ndmp
    ndmp Member Posts: 36
    #2
    Linda,
    I am sorry to hear
    Linda,

    I am sorry to hear Ed's news. I have been where you are right now. My advice to you is never give up hope. We too had a Dr. that took all of Dad's hope away it was devestating and I know that is why Dad gave up. Go for the second opinion, you have nothing to lose and everything to gain, I know I have shared this with you a Dr. told me I would NEVER have my 2 beautiful children and to abort them, I found another Dr. With dad I never did lose hope not even in the face of defeat from this terrible beast. My thoughts and prayers are with you if you need me I am only a phone call away.

    Nicole
  • MOE58
    MOE58 Member Posts: 589 Member
    #3
    Linda I am not Sherri but maybe I can spread some light
    First off I am Moe and have walked many shoes on this board. If you look back over my posts you will see. I honestly don't know what stage your husband is in, my Jeff was a stage 2, and I know where you are coming from of being distant and hateful, Chemo does alot of things to the body it makes them very angry, very hateful, they are asking themselves why me, it sounds like Ed does not want to fight, fortunately Jeff wanted to fight his Cancer, we were told of this ugly disease on April fools day so you can imagine how we felt. There is alway hope you say the doctor doesn't want a feeding tube and neither does your husband i don't know too much about them as Jeff only had to have one after surgery and about a week when he got home, and never had to use it, due to the fact that he was able to tolerate soft foods, I don't know what ED is eating but if you need help I can help you. If he had a PET SCAN last week and it showed more spots than that may be the reason the doctor don't want to do more Chemo, cause he feels that its not helping, Of course there is always a second opinion if your ED would do it. Some of our friend on this site, will relate what kind of CRAP I put up with while he was going through CHEMO, Luckly Jeff never gave up and was able to have the IVOR LEWIS surgery back in July, now we had problems after surgery and it was a long battle but he is doing good now.

    Sometimes, when you look around you find out that sometimes you feel too many people are telling you what to do, and you have to go with your heart, no opinions. If you will sit your husband down, and say "Hey you know I am sorry you have Cancer but as a caregiver I have it too" I know you are tired and don't feel good but why do you not want to proceed with anything else, do you not want to be here for me and your family, you just want to give up and go to heaven? I have been here with you through all this and I would like some answers.

    That is what I had to do with Jeff, I will say its not easy being a caregiver at all, cause what your loved don't know is your hurting also inside and out. I can only say I cried many tears, at night when he wasn't around.

    Fortunately Jeff is doing good now and he counts his many blessings but knows someday it could return for the worse.

    The doctor told us this is a very agrressive cancer and once it attacks the body its hard to conquer.

    If I can help further let me know

    Lori aka MOE
  • Unknown
    Unknown
    #4
    MOE58 said:

    Linda I am not Sherri but maybe I can spread some light
    First off I am Moe and have walked many shoes on this board. If you look back over my posts you will see. I honestly don't know what stage your husband is in, my Jeff was a stage 2, and I know where you are coming from of being distant and hateful, Chemo does alot of things to the body it makes them very angry, very hateful, they are asking themselves why me, it sounds like Ed does not want to fight, fortunately Jeff wanted to fight his Cancer, we were told of this ugly disease on April fools day so you can imagine how we felt. There is alway hope you say the doctor doesn't want a feeding tube and neither does your husband i don't know too much about them as Jeff only had to have one after surgery and about a week when he got home, and never had to use it, due to the fact that he was able to tolerate soft foods, I don't know what ED is eating but if you need help I can help you. If he had a PET SCAN last week and it showed more spots than that may be the reason the doctor don't want to do more Chemo, cause he feels that its not helping, Of course there is always a second opinion if your ED would do it. Some of our friend on this site, will relate what kind of CRAP I put up with while he was going through CHEMO, Luckly Jeff never gave up and was able to have the IVOR LEWIS surgery back in July, now we had problems after surgery and it was a long battle but he is doing good now.

    Sometimes, when you look around you find out that sometimes you feel too many people are telling you what to do, and you have to go with your heart, no opinions. If you will sit your husband down, and say "Hey you know I am sorry you have Cancer but as a caregiver I have it too" I know you are tired and don't feel good but why do you not want to proceed with anything else, do you not want to be here for me and your family, you just want to give up and go to heaven? I have been here with you through all this and I would like some answers.

    That is what I had to do with Jeff, I will say its not easy being a caregiver at all, cause what your loved don't know is your hurting also inside and out. I can only say I cried many tears, at night when he wasn't around.

    Fortunately Jeff is doing good now and he counts his many blessings but knows someday it could return for the worse.

    The doctor told us this is a very agrressive cancer and once it attacks the body its hard to conquer.

    If I can help further let me know

    Lori aka MOE

    This comment has been removed by the Moderator
  • lindadanis
    lindadanis Member Posts: 235
    #5
    unknown said:

    This comment has been removed by the Moderator

    a big thanks to all of you
    first, I want to thank all of you for trying to help me out during his horrible time in my life, ed is stage four with lots of mets to chest cavity, abdomen, pelvis, liver right from the beginning when he was diagnosed back in october. He is going to start a new chemo tomorrow which is oxalipatin, once every twenty one days, and xeloda, six pills for fourteen days. I am hoping and praying that this does something positive. He does not want a feeding tube nor does his doctor want it. His urine is not too dark, I just checked it, it is not clear either, kind of middle yellow, yes, I do think he is somewhat dehydrated, although he drank today. I believe that ed is suffering severe depression which started the day he was diagnosed and they told him it was terminal cancer. He asked the question, he got his blunt answer, and to this day, he has never ever been the same. Sherri, I appreciate you leaving me your number and will call you soon, however, I do not know if ed will talk to you or your husband, but I do appreciate the offer and maybe someday he will. I know I have all of you to talk to and call and thanks Nicole for calling me., I appreciate it. I am scared, sad, depressed and need my ec friends so thanks to all of you. Eddie is a very aloof person whom I do not believe will ever get on this website or call anyone. He is a very private man and I am having a hard time getting through to him. I think his biggest problem is the bad news last week over the lousy pet scan showing more cancer and that his three rounds of chemo did nothing, it seemed to have put him deeper into depression. I am going to ask the doctor tomorrow to increase his paxill, he is only on 10 mgs, which is way too low., hopefully uping it might change things. any sugggestions on what dose he should be on. He did eat a little today, I do not believe that it is not because he cannot eat, but he is giving up. This has been the hardest thing to go through in my life and watching my husband suffering is something very difficult to watch. I know all you wifes out there feel the same as I. Sometimes there is just nothing we can do but pray. Thanks again, I will keep you updated on how things go this week., I am concerned that this xeloda is in pill form and wondering how he is going to do trying to swollow six pills daily. Will keep you posted.
    Linda
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #6
    lindadanis said:

    a big thanks to all of you
    first, I want to thank all of you for trying to help me out during his horrible time in my life, ed is stage four with lots of mets to chest cavity, abdomen, pelvis, liver right from the beginning when he was diagnosed back in october. He is going to start a new chemo tomorrow which is oxalipatin, once every twenty one days, and xeloda, six pills for fourteen days. I am hoping and praying that this does something positive. He does not want a feeding tube nor does his doctor want it. His urine is not too dark, I just checked it, it is not clear either, kind of middle yellow, yes, I do think he is somewhat dehydrated, although he drank today. I believe that ed is suffering severe depression which started the day he was diagnosed and they told him it was terminal cancer. He asked the question, he got his blunt answer, and to this day, he has never ever been the same. Sherri, I appreciate you leaving me your number and will call you soon, however, I do not know if ed will talk to you or your husband, but I do appreciate the offer and maybe someday he will. I know I have all of you to talk to and call and thanks Nicole for calling me., I appreciate it. I am scared, sad, depressed and need my ec friends so thanks to all of you. Eddie is a very aloof person whom I do not believe will ever get on this website or call anyone. He is a very private man and I am having a hard time getting through to him. I think his biggest problem is the bad news last week over the lousy pet scan showing more cancer and that his three rounds of chemo did nothing, it seemed to have put him deeper into depression. I am going to ask the doctor tomorrow to increase his paxill, he is only on 10 mgs, which is way too low., hopefully uping it might change things. any sugggestions on what dose he should be on. He did eat a little today, I do not believe that it is not because he cannot eat, but he is giving up. This has been the hardest thing to go through in my life and watching my husband suffering is something very difficult to watch. I know all you wifes out there feel the same as I. Sometimes there is just nothing we can do but pray. Thanks again, I will keep you updated on how things go this week., I am concerned that this xeloda is in pill form and wondering how he is going to do trying to swollow six pills daily. Will keep you posted.
    Linda

    Paxil
    Linda,
    Have the dr up the dosage.....when Charlie was diagnosed we started him on 25 mg of Paxil. A few months ago we upped it to 37.50mg. It did help. He also takes Ativan 2x a day....morning and night.....it definitely helped Charlie with the depression and anxiety. Of course if Ed were to receive good news, that is the best medicine. You may need something too....to help you get over this bump in the road. I think of your often and pray things get better for you. When Charlie was at his lowest, I just kept telling him to please fight for ME.....I need him. It seemed to help him and gave him the push he needed.
    Try to stay strong,
    Jane
  • Pghmomma
    Pghmomma Member Posts: 141
    #7
    JaneE2366 said:

    Paxil
    Linda,
    Have the dr up the dosage.....when Charlie was diagnosed we started him on 25 mg of Paxil. A few months ago we upped it to 37.50mg. It did help. He also takes Ativan 2x a day....morning and night.....it definitely helped Charlie with the depression and anxiety. Of course if Ed were to receive good news, that is the best medicine. You may need something too....to help you get over this bump in the road. I think of your often and pray things get better for you. When Charlie was at his lowest, I just kept telling him to please fight for ME.....I need him. It seemed to help him and gave him the push he needed.
    Try to stay strong,
    Jane

    Linda,
    Im very sorry that you are going thur this with your husband. Its very hard for us as caregivers to watch our love ones go thur something so horrible. Then to just give up hope is even more frustarating. Hang in there and get a second oppinion. I know my dad is a stage 3. He went straight for surgery because the dr recommended getting the tumor out now cause it was progressing so fast. He is now on his 2nd treatment of chemo, he takes 4 xeolda pills a day. he was worried about swallowing them too, the dr said that they can be crushed but in pill crusher that is not used for anything else and is kept away from everything... But he was able to swallow them. Now that he is on the chemo he lost 6lbs in 1 day from not eating as much because he is sick from the chemo they are trying to find the right meds for him. Its hard, he has his feeding tube in but WILL NOT USE IT. He said that it causes him a stomach ache. Just talk to the dr and tell them your concerns with his depression.

    Take care and I hope all goes well.
    Tina
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #8
    Pghmomma said:

    Linda,
    Im very sorry that you are going thur this with your husband. Its very hard for us as caregivers to watch our love ones go thur something so horrible. Then to just give up hope is even more frustarating. Hang in there and get a second oppinion. I know my dad is a stage 3. He went straight for surgery because the dr recommended getting the tumor out now cause it was progressing so fast. He is now on his 2nd treatment of chemo, he takes 4 xeolda pills a day. he was worried about swallowing them too, the dr said that they can be crushed but in pill crusher that is not used for anything else and is kept away from everything... But he was able to swallow them. Now that he is on the chemo he lost 6lbs in 1 day from not eating as much because he is sick from the chemo they are trying to find the right meds for him. Its hard, he has his feeding tube in but WILL NOT USE IT. He said that it causes him a stomach ache. Just talk to the dr and tell them your concerns with his depression.

    Take care and I hope all goes well.
    Tina

    This is my 2nd post to you
    Hi Linda,
    I wanted to add one more thing to my very long first response. How about having him talk to a counselor or therapist. I see that you said he is on paxil. That is a good anti depressant. My dad is on lexapro and ativan for the anxiety. I am sure there are support groups at the hospital, even for you. ACS offers support groups too. They also have a 24 hr hotline. You sound like you could use these too. Hope this all helps. Hugs to you both.And...with the Xeloda, my dad did crush it the first time when he took it for his ec...it worked! Now with the mets to his liver they told him he has to take the pills whole. With the help of his stent in his esophagus, he is able to do this. Good luck.
    Tina B
  • lindadanis
    lindadanis Member Posts: 235
    #9
    Pghmomma said:

    Linda,
    Im very sorry that you are going thur this with your husband. Its very hard for us as caregivers to watch our love ones go thur something so horrible. Then to just give up hope is even more frustarating. Hang in there and get a second oppinion. I know my dad is a stage 3. He went straight for surgery because the dr recommended getting the tumor out now cause it was progressing so fast. He is now on his 2nd treatment of chemo, he takes 4 xeolda pills a day. he was worried about swallowing them too, the dr said that they can be crushed but in pill crusher that is not used for anything else and is kept away from everything... But he was able to swallow them. Now that he is on the chemo he lost 6lbs in 1 day from not eating as much because he is sick from the chemo they are trying to find the right meds for him. Its hard, he has his feeding tube in but WILL NOT USE IT. He said that it causes him a stomach ache. Just talk to the dr and tell them your concerns with his depression.

    Take care and I hope all goes well.
    Tina

    Tina and xeolda pills and crushing
    I asked the pharmacist if xeolda can be crushed and she said it has a nasty taste if crushed so just break them in half, I asked the oncologist about it and he did not know??? Makes me question this oncologist for sure if he doesn't know if they can be crushed, broken or whatever. Ed is one three in the morning, 500 mg each and 3 at night and we just started oxalipatin today. He is very sick to his stomach, gave him anti nasuea med's today in his iv with his chemo and I just gave him zofram, which he just vomitted. Should I crush the xeolda pills tonight for him????

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