my dad-new to this

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ecdad
ecdad Member Posts: 11
edited March 2014 in Esophageal Cancer #1
my dad was initially dx with esophageal cancer stage IV with mets to his liver and nodes, the local oncologist said chemo only to substain his quality of life and left it at that with one year max. we went for a second opinion at duke university medical center and that doc said it has only affected one node and the spots on the liver were minimal. I don't understand how one doctor could sentence him to death and the other doc has such a good attitude. well i kind of do but i have read so much about it being the last stage and there is no hope. i know we are in for a tough battle and it depends on his reaction to chemo/rad. I just want some advice, do you think that is what makes a good doctor is their good attitude about it and their education/experience what makes them better or is the first doctor just living in reality and telling us the truth. i really hope it is not the latter as i trust duke and think they are the best, which is why we went there.

BTW:

he is 66
smoked and drank all his life
actually in good health, has 2 checkups a year
is ready to fight and loves his family

Comments

  • linda1120
    linda1120 Member Posts: 389
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    Your Dad
    We have some very knowledgeable people in this group and I am sure you will be hearing from them soon. It is good he is ready to fight and getting that second opinion is excellent. I wish your dad and your entire family the best and know that there are a lot of people on this list, including myself that pray for others going through this cancer. You have found the right place to get excellent information. There are many on here that are in stage IV and are in treatment, in clinical trials, etc.

    My husband just came home after his surgery and by coming on this group I was able to learn so much and get him to the right cancer center out of state. We are in a hotel for another week while he is healing and then has his check-up. Sometimes we have to do things that are difficult, but if it means your life or your spouses life you will do it.

    Linda
  • zinniemay
    zinniemay Member Posts: 522
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    Ec cancer
    Sorry you did not chat tonight, I woulld have tried to help. MY husband 57 dx E.C. Larynx stage 4 mets t lung. I may not have answered your questions but could have tried to help,
    Zinniemay
  • paul61
    paul61 Member Posts: 1,391 Member
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    The first Oncologist is merely quoting statistics
    Hello,

    Welcome to our group, I am sorry you had to find us under these difficult circumstances for your Dad. You will find a number of survivors here who are in Stage IV and living with cancer.

    I think it is important to pick an oncologist who you are comfortable with and in whom you have confidence. When you hear a dire prognosis like "all we can provide is palliative treatment and n Months to a Year survival" they are merely quoting statistics.

    Three important things to remember about statistics:

    1. They define an average of the results experienced by patients with a vast difference in mental and physical health levels
    2. They do not define the "Current" results experienced by patients in an area where significant advances are made every year
    3. They do not reflect a patient's resolve to survive nor the viability of that patient's support system.

    In short they should be ignored.

    I would go with the oncologist who has a positive perspective. I sounds like your Dad is a survivor and his family is ready to support him. I would pick an oncologist who is ready to help him fight.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • ecdad
    ecdad Member Posts: 11
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    paul61 said:

    The first Oncologist is merely quoting statistics
    Hello,

    Welcome to our group, I am sorry you had to find us under these difficult circumstances for your Dad. You will find a number of survivors here who are in Stage IV and living with cancer.

    I think it is important to pick an oncologist who you are comfortable with and in whom you have confidence. When you hear a dire prognosis like "all we can provide is palliative treatment and n Months to a Year survival" they are merely quoting statistics.

    Three important things to remember about statistics:

    1. They define an average of the results experienced by patients with a vast difference in mental and physical health levels
    2. They do not define the "Current" results experienced by patients in an area where significant advances are made every year
    3. They do not reflect a patient's resolve to survive nor the viability of that patient's support system.

    In short they should be ignored.

    I would go with the oncologist who has a positive perspective. I sounds like your Dad is a survivor and his family is ready to support him. I would pick an oncologist who is ready to help him fight.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!

    thank you
    Thank you so much, it really does help to get support with this. I am in SC also!
  • Susan_E
    Susan_E Member Posts: 9
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    Some doctors need to work on their delivery
    My dad had a similar experience with his first oncologist. While I know the doctor didn't actually tell my dad to go home and die, that's the impression my dad received. To make things worse, the doctor gave him 3-6 months to live.

    When you run into a doctor that offers little to no encouragement, it's time to find a new doctor. If your dad is ready to fight, you need to find an oncologist who will give him every opportunity to do so. Moreover, if a doctor stamps an expiration date on your dad's forehead, head for the nearest exit and don't look back!

    I suppose doctors are like actors. Some deliver their lines beautifully. Others truly need to work on their delivery.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
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    Welcome
    Hello ECDAD
    Welcome to our wonderful family of EC sufferers and survivors! I was a caregiver for my dad. He fought the battle with ec for 16 mos. He passed away in March 2010, after it went to his liver. He had his second opinion at UVA, where they told him they could treat his cancer. Second opinions are always recommended and appreciated. Duke University is an excellent hospital and cancer center. I know of one girl here named Kim, whose dad went there and is now a survivor! I am sure she will respond to you also. Keep your chins up, think positive, and fight the fight. We are always here for you. Keep us up to date.
    Tina in Va
  • vera
    vera Member Posts: 13
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    ec dad
    hey there ecdad..
    My dad has stage iv ec with mets to lungs.lymphnodes and bone..i understand how you feel we were given a short time frame to help my dad and his time here is grimm..however we have begun to fight because we have hope..however his first chemo treatment has been very hard on him and now waS ADJUSTED..this group has really helped so much..we felt so alone..

    Please keep me posted on your dad perhaps we can compare notes..what helps me i keep a journal from the day he was dx..that was this very thxgiving..good luck to you all..every case is different but notes are wonderful to share..whats the treatment? my dad started with cisplatin,doxitoxil,f5u port a cath for 4 days straight..inoperable tumor,,but was stented. This wed. will be 2 hrs of cispaltin anf 5 days of 5fu no radiation.
    Hope we can help each other.

    God Bless you and and dad,,
    Vera

    My dad is 64
    retired, also drank and smoked his life but quit 11 yrs ago..

    He too loves all of us very much and is willing to fight..
  • ecdad
    ecdad Member Posts: 11
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    vera said:

    ec dad
    hey there ecdad..
    My dad has stage iv ec with mets to lungs.lymphnodes and bone..i understand how you feel we were given a short time frame to help my dad and his time here is grimm..however we have begun to fight because we have hope..however his first chemo treatment has been very hard on him and now waS ADJUSTED..this group has really helped so much..we felt so alone..

    Please keep me posted on your dad perhaps we can compare notes..what helps me i keep a journal from the day he was dx..that was this very thxgiving..good luck to you all..every case is different but notes are wonderful to share..whats the treatment? my dad started with cisplatin,doxitoxil,f5u port a cath for 4 days straight..inoperable tumor,,but was stented. This wed. will be 2 hrs of cispaltin anf 5 days of 5fu no radiation.
    Hope we can help each other.

    God Bless you and and dad,,
    Vera

    My dad is 64
    retired, also drank and smoked his life but quit 11 yrs ago..

    He too loves all of us very much and is willing to fight..

    Thank You Vera and Everyone Else!
    Hi Vera, these posts have helped me so much, I have a list of questions to ask the oncologist at our appointment Wednesday from reading them. We just found out on the 7th and last weeks storms prevented us from getting anything done but did manage to get him up to Duke Friday and she will work with the oncologist here in our small town about his treatment. Can't say enough about them, they were wonderful. She said there was just a small spot on his liver and only one node involved and she hopes that will clear up with chemo/radiology, she did tell us what the meds would be and I have listed them below. She also said no stent and no feeding tube at this point as he is maintaining his weight, today was not such a good day with eating. Funny how I planned to keep a journal as well and you suggested it. Plus writing gives me great comfort and is good for my soul! Hopefully he can started being treated this week! Good luck to your father and don't give up hope, miracles happen everyday! Keep me posted as well.

    Chem: Epirubicin, Xeloda, Oxaliplatin, Avastin, not sure if he is going to be getting all of these, I think it will be a combo of just two, but not sure, one may be for the liver and the other for the esophgeaus. Doc wrote it down on another paper that Dad has and I don't have it.

    The clinical trail study drug is a combo of Avastin, Oxaliplatin and Capecitabine (Xeloda)(trial drug)
    Well I think the above is what I understood but I could be wrong will know more Wednesday.

    God Bless to you and your Dad as well and to all other people going throught this nightmare!
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
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    ecdad said:

    Thank You Vera and Everyone Else!
    Hi Vera, these posts have helped me so much, I have a list of questions to ask the oncologist at our appointment Wednesday from reading them. We just found out on the 7th and last weeks storms prevented us from getting anything done but did manage to get him up to Duke Friday and she will work with the oncologist here in our small town about his treatment. Can't say enough about them, they were wonderful. She said there was just a small spot on his liver and only one node involved and she hopes that will clear up with chemo/radiology, she did tell us what the meds would be and I have listed them below. She also said no stent and no feeding tube at this point as he is maintaining his weight, today was not such a good day with eating. Funny how I planned to keep a journal as well and you suggested it. Plus writing gives me great comfort and is good for my soul! Hopefully he can started being treated this week! Good luck to your father and don't give up hope, miracles happen everyday! Keep me posted as well.

    Chem: Epirubicin, Xeloda, Oxaliplatin, Avastin, not sure if he is going to be getting all of these, I think it will be a combo of just two, but not sure, one may be for the liver and the other for the esophgeaus. Doc wrote it down on another paper that Dad has and I don't have it.

    The clinical trail study drug is a combo of Avastin, Oxaliplatin and Capecitabine (Xeloda)(trial drug)
    Well I think the above is what I understood but I could be wrong will know more Wednesday.

    God Bless to you and your Dad as well and to all other people going throught this nightmare!

    Xeloda
    Hey ECDAD
    Just a quick note....my dad took oral Xeloda, one pill 3 x a day. 500 mg each. They come in different strengths. He did very well with this chemo and also had radiation. Dad had 13 good mos. Like I said, everyone is different, everyone has different results. Keep up the good work. We had a journal also, greatest thing we ever did! See you soon.
    Tina in Va
  • ecdad
    ecdad Member Posts: 11
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    linda1120 said:

    Your Dad
    We have some very knowledgeable people in this group and I am sure you will be hearing from them soon. It is good he is ready to fight and getting that second opinion is excellent. I wish your dad and your entire family the best and know that there are a lot of people on this list, including myself that pray for others going through this cancer. You have found the right place to get excellent information. There are many on here that are in stage IV and are in treatment, in clinical trials, etc.

    My husband just came home after his surgery and by coming on this group I was able to learn so much and get him to the right cancer center out of state. We are in a hotel for another week while he is healing and then has his check-up. Sometimes we have to do things that are difficult, but if it means your life or your spouses life you will do it.

    Linda

    thank you
    I feel like I already have a family here. Best wishes to you and your husband. This is so hard for me, but mostly it just breaks my heart for my mom and dad to go through this, that is really the worst part! I wish I could take it all away but I just have to be strong for them and the rest of the family and do what I can to help. Bless you both!
  • ecdad
    ecdad Member Posts: 11
    Options

    Xeloda
    Hey ECDAD
    Just a quick note....my dad took oral Xeloda, one pill 3 x a day. 500 mg each. They come in different strengths. He did very well with this chemo and also had radiation. Dad had 13 good mos. Like I said, everyone is different, everyone has different results. Keep up the good work. We had a journal also, greatest thing we ever did! See you soon.
    Tina in Va

    Xeloda
    I hope my Dad does well also on all the chemo and praying he doesn't get too sick, I am hopeful, he has had pretty major surgeries in the past and didn't even take pain meds afterward so he is a pretty tough cookie! Thanks for your comments! Very helpful!
  • unclaw2002
    unclaw2002 Member Posts: 599
    Options
    ecdad said:

    Xeloda
    I hope my Dad does well also on all the chemo and praying he doesn't get too sick, I am hopeful, he has had pretty major surgeries in the past and didn't even take pain meds afterward so he is a pretty tough cookie! Thanks for your comments! Very helpful!

    Hi one thought you may want
    Hi one thought you may want to do is to get your dad to authorize you to receive medical and insurance information for him. It is helpful with the privacy issues and will let you help your parents out. I found out with my parents that at first they were hesistant but as we have gone through this fight they are thankful that I can help out, fight for things for them and receive information.

    Good luck, I am glad you went to get a second opinion. I wont rehash my dad's story here you can check under my about me. If you have any questions please feel free to send me an email.

    Best,
    Cindy
  • ecdad said:

    Thank You Vera and Everyone Else!
    Hi Vera, these posts have helped me so much, I have a list of questions to ask the oncologist at our appointment Wednesday from reading them. We just found out on the 7th and last weeks storms prevented us from getting anything done but did manage to get him up to Duke Friday and she will work with the oncologist here in our small town about his treatment. Can't say enough about them, they were wonderful. She said there was just a small spot on his liver and only one node involved and she hopes that will clear up with chemo/radiology, she did tell us what the meds would be and I have listed them below. She also said no stent and no feeding tube at this point as he is maintaining his weight, today was not such a good day with eating. Funny how I planned to keep a journal as well and you suggested it. Plus writing gives me great comfort and is good for my soul! Hopefully he can started being treated this week! Good luck to your father and don't give up hope, miracles happen everyday! Keep me posted as well.

    Chem: Epirubicin, Xeloda, Oxaliplatin, Avastin, not sure if he is going to be getting all of these, I think it will be a combo of just two, but not sure, one may be for the liver and the other for the esophgeaus. Doc wrote it down on another paper that Dad has and I don't have it.

    The clinical trail study drug is a combo of Avastin, Oxaliplatin and Capecitabine (Xeloda)(trial drug)
    Well I think the above is what I understood but I could be wrong will know more Wednesday.

    God Bless to you and your Dad as well and to all other people going throught this nightmare!

    This comment has been removed by the Moderator
  • ecdad
    ecdad Member Posts: 11
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    unknown said:

    This comment has been removed by the Moderator

    sherri
    Thanks, I will def ask, we have an appt tomorrow and I have it on my list of questions. I will update everyone on what the docs plan tomorrow. Thanks to everyone! God bless!
  • vera
    vera Member Posts: 13
    Options
    ecdad said:

    Thank You Vera and Everyone Else!
    Hi Vera, these posts have helped me so much, I have a list of questions to ask the oncologist at our appointment Wednesday from reading them. We just found out on the 7th and last weeks storms prevented us from getting anything done but did manage to get him up to Duke Friday and she will work with the oncologist here in our small town about his treatment. Can't say enough about them, they were wonderful. She said there was just a small spot on his liver and only one node involved and she hopes that will clear up with chemo/radiology, she did tell us what the meds would be and I have listed them below. She also said no stent and no feeding tube at this point as he is maintaining his weight, today was not such a good day with eating. Funny how I planned to keep a journal as well and you suggested it. Plus writing gives me great comfort and is good for my soul! Hopefully he can started being treated this week! Good luck to your father and don't give up hope, miracles happen everyday! Keep me posted as well.

    Chem: Epirubicin, Xeloda, Oxaliplatin, Avastin, not sure if he is going to be getting all of these, I think it will be a combo of just two, but not sure, one may be for the liver and the other for the esophgeaus. Doc wrote it down on another paper that Dad has and I don't have it.

    The clinical trail study drug is a combo of Avastin, Oxaliplatin and Capecitabine (Xeloda)(trial drug)
    Well I think the above is what I understood but I could be wrong will know more Wednesday.

    God Bless to you and your Dad as well and to all other people going throught this nightmare!

    ec dads
    hello again ecdad...

    Best of luck this wed...as we too are going for treatment...my email is vbab3@aol.com if u should ever want to talk and compare..god bless and start the journal..

    keep me posted,,keep hope!!
  • ecdad
    ecdad Member Posts: 11
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    vera said:

    ec dads
    hello again ecdad...

    Best of luck this wed...as we too are going for treatment...my email is vbab3@aol.com if u should ever want to talk and compare..god bless and start the journal..

    keep me posted,,keep hope!!

    thx
    I will do Vera and your name has a special signifigance to me. I will probably email you soon. You keep up the hope also!
  • ecdad said:

    thx
    I will do Vera and your name has a special signifigance to me. I will probably email you soon. You keep up the hope also!

    This comment has been removed by the Moderator