my dad and our fight

vera
vera Member Posts: 13
edited March 2014 in Esophageal Cancer #1
My father is 64 yrs old, a week before thxgiving we were told he has mastastic stage ivb esophageal cancer....with this we had one round of chemo with f5u pump, this has led him to become very ill and in the hospital the week of xmas.

So chemo has been placed on hold till this up coming week in which it has been modified..?
My fear is this is not going to woork at all in dADS FAVOR..CAN ANYONE RELATE TO MY SITUATION..
Thx Vera

Comments

  • Boston67
    Boston67 Member Posts: 61
    #2
    I can relate
    Hi,

    I share all your fears.

    I began with Tufts in Boston. It is a large and respected institution. But I have switched to Dana Farber which has much more depth in esophageal cancer.

    If you have not sought a second opinion, I urge you to do so immediately. You can begin by googling Esophageal cancer and find a place that works for you. You can also read Williams posts (William and Loretta) and he will probably respond to your post.

    He is fabulous and this site has much for you. Go through the posts as much as you can stand. There is a ton of information.

    Become active (very active) in controlling your care. I can help you and we can talk on the phone if you wish, but William is your best source of information.

    Keith
    Age 67 Boston
    Stage IV
  • vera
    vera Member Posts: 13
    #3
    Boston67 said:

    I can relate
    Hi,

    I share all your fears.

    I began with Tufts in Boston. It is a large and respected institution. But I have switched to Dana Farber which has much more depth in esophageal cancer.

    If you have not sought a second opinion, I urge you to do so immediately. You can begin by googling Esophageal cancer and find a place that works for you. You can also read Williams posts (William and Loretta) and he will probably respond to your post.

    He is fabulous and this site has much for you. Go through the posts as much as you can stand. There is a ton of information.

    Become active (very active) in controlling your care. I can help you and we can talk on the phone if you wish, but William is your best source of information.

    Keith
    Age 67 Boston
    Stage IV

    Keith! thank you for your
    Keith! thank you for your response, i have been researching as much as i can..i feel discouraged by alot at times..however i will take every bit of help i can to help my father..

    Are you keith a survivor, or still fighting?

    thx Vera
  • sal314
    sal314 Member Posts: 599 Member
    #4
    Hi Vera...
    I can relate your situation. My dad is 69 and was diagnosed March of '10 with stage IVb with liver mets. He did 28 radiation treatments and went through about 3 rounds of the heavy duty stuff (fu5 and I forget the other one). He had to stop because of 3 blood clots that developed. He's been off and on Taxol or is it Taxotere?....I can't keep it straight...anyway, he's handling that drug much better. But during his break back in Sept. the cancer spread to his spine. He did another couple of rounds with no problems, started gaining back weight and looked pretty good. His last chemo was the week of Thanksgiving. He will be getting scans on Tues. to see if the chemo is helping. He's had no eating or swallowing issues for which we are very grateful. And, he's felt pretty good up until this past week when he developed an extreme pain in his upper arm.

    I know it's hard. But you can't give up hope. I didn't think my father would be around for Christmas and he was. Even though there is no cure, it can be managed for a time. How much time?? Only God knows. Doctor's give their best "guess" and many times get it wrong! So...just enjoy the time you do have with your father and be with him as much as you can.

    It's definately an emotional rollercoaster. You just have to take it a day at a time and be thankful for each day. This board has been a great help for me in dealing with my dad's situation. So many others are going through the same thing. There are several very wise and knowledgeable people that have great advice. I've learned more than I ever wanted to about EC!Hang in there and know you are not alone!

    Blessings,
    Sally
  • Boston67
    Boston67 Member Posts: 61
    #5
    vera said:

    Keith! thank you for your
    Keith! thank you for your response, i have been researching as much as i can..i feel discouraged by alot at times..however i will take every bit of help i can to help my father..

    Are you keith a survivor, or still fighting?

    thx Vera

    We all feel this way
    Hi Vera,

    You are not alone and we all feel this way.

    You will find William very helpful. Read erything he suggests and become your own expert.

    My own second opinon caused me to immediately switch treatment centers. Getting that right is the key.

    You have a very hard road again and there will never be enough time to do all you may wish. Just keep going and just keep pushing. Ask foe help from family and friends.

    Good luck

    Keith
    Age 67 Boston
    Stage IV
    pre-treatment
  • unclaw2002
    unclaw2002 Member Posts: 599
    #6
    Vera,Can you give us more
    Vera,

    First, let me say we are all survivors - every day you live after the diagnosis is one more day you have survived and even those on this board who are showing no evidence of disease (NED) or say they are in remission are still fighting. I think all of us fight every day and survive as well. And as many caregivers say when one of our loved ones gets cancer the entire family gets cancer. So if really is encouraging to consider your dad a survivor and a fighter together.

    Can you give us more specific information so we can better help? For instance:
    1. Where does your dad live? Where is he being treated?
    2. Who are his doctors and what type of diagnostic tests has he had? What type of espohageal cancer does he have? Where is the cancer located. Where has the cancer spread?
    3. Has he had a second opinion?
    4. Has he been tested for the HER2 gene to see if he is eligible for Herceptin treatment?
    5. Does you dad have any other physical conditions which might effect the type of treatment he can receive?
    6. What was your dad's general health before his diagonosis - is he active still working full time?
    7. What kind of support system does your dad have?
    8. What is your dad's attitude, how does he feel about all this? Is he ready or able to discuss the EC yet? Is he open to suggestions? Does he want to talk? Is he willing to challenge what the doctors say? Is he open to leaving home to get treatment? Can you get him to a major cancer treatment center if he doesn't live near one?
    9. What is his insurance coverage? How may that complicate his treatment?
    10. Will he allow you to receive information about his care from the doctors? Will he authorize you as someone to receive information (A HIPPA waiver)?

    These are just a few of the questions that can help us help you. Also, begin keeping a notebook of all the information and see if you can get your dad to keep a notebook. Someone else should always go with your dad to his appointments to write down questions and answers. It is amazing how many things are said during the appointments that my dad would sometimes not hear or forget --- it is very stressful.

    Please feel free to message me with any questions - you can read my about me and get an idea about what is going on with my dad - also a recent post I made related to a question about a clinical trial from cher has information which may be helpful to you. My dad was diagnosed in December of 2009 so we have been through many ups and downs. Good luck and my prayers are with you and your family. Also, here is the link to my dad's caring bridge site http://www.caringbridge.org/visit/harrycollins2.

    Best wishes,
    Cindy
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • vera
    vera Member Posts: 13
    #8
    unclaw2002 said:

    Vera,Can you give us more
    Vera,

    First, let me say we are all survivors - every day you live after the diagnosis is one more day you have survived and even those on this board who are showing no evidence of disease (NED) or say they are in remission are still fighting. I think all of us fight every day and survive as well. And as many caregivers say when one of our loved ones gets cancer the entire family gets cancer. So if really is encouraging to consider your dad a survivor and a fighter together.

    Can you give us more specific information so we can better help? For instance:
    1. Where does your dad live? Where is he being treated?
    2. Who are his doctors and what type of diagnostic tests has he had? What type of espohageal cancer does he have? Where is the cancer located. Where has the cancer spread?
    3. Has he had a second opinion?
    4. Has he been tested for the HER2 gene to see if he is eligible for Herceptin treatment?
    5. Does you dad have any other physical conditions which might effect the type of treatment he can receive?
    6. What was your dad's general health before his diagonosis - is he active still working full time?
    7. What kind of support system does your dad have?
    8. What is your dad's attitude, how does he feel about all this? Is he ready or able to discuss the EC yet? Is he open to suggestions? Does he want to talk? Is he willing to challenge what the doctors say? Is he open to leaving home to get treatment? Can you get him to a major cancer treatment center if he doesn't live near one?
    9. What is his insurance coverage? How may that complicate his treatment?
    10. Will he allow you to receive information about his care from the doctors? Will he authorize you as someone to receive information (A HIPPA waiver)?

    These are just a few of the questions that can help us help you. Also, begin keeping a notebook of all the information and see if you can get your dad to keep a notebook. Someone else should always go with your dad to his appointments to write down questions and answers. It is amazing how many things are said during the appointments that my dad would sometimes not hear or forget --- it is very stressful.

    Please feel free to message me with any questions - you can read my about me and get an idea about what is going on with my dad - also a recent post I made related to a question about a clinical trial from cher has information which may be helpful to you. My dad was diagnosed in December of 2009 so we have been through many ups and downs. Good luck and my prayers are with you and your family. Also, here is the link to my dad's caring bridge site http://www.caringbridge.org/visit/harrycollins2.

    Best wishes,
    Cindy

    ec
    Cindy! my dad has been dx with stage ivb mets to lungs,lymphnodes and bone..we have inquired with other docs and we had no luck,,,So we are getting treted in mt.sinai hospital in new york city..we live near by in staten island.

    Mdad has been treated in the past for liver disease and arterial hypertension..he has a compromised liver now and didnt handle first chemo very well. so it now has been modified to only 5fu and cisplatin. Dad is retired and has moved in with me and mt husband so i can care for him..and he is willing to try and fight..
    thank you for your help...i feel alone and that i am not doing enough,thx Vera
  • vera
    vera Member Posts: 13
    #9
    unclaw2002 said:

    Vera,Can you give us more
    Vera,

    First, let me say we are all survivors - every day you live after the diagnosis is one more day you have survived and even those on this board who are showing no evidence of disease (NED) or say they are in remission are still fighting. I think all of us fight every day and survive as well. And as many caregivers say when one of our loved ones gets cancer the entire family gets cancer. So if really is encouraging to consider your dad a survivor and a fighter together.

    Can you give us more specific information so we can better help? For instance:
    1. Where does your dad live? Where is he being treated?
    2. Who are his doctors and what type of diagnostic tests has he had? What type of espohageal cancer does he have? Where is the cancer located. Where has the cancer spread?
    3. Has he had a second opinion?
    4. Has he been tested for the HER2 gene to see if he is eligible for Herceptin treatment?
    5. Does you dad have any other physical conditions which might effect the type of treatment he can receive?
    6. What was your dad's general health before his diagonosis - is he active still working full time?
    7. What kind of support system does your dad have?
    8. What is your dad's attitude, how does he feel about all this? Is he ready or able to discuss the EC yet? Is he open to suggestions? Does he want to talk? Is he willing to challenge what the doctors say? Is he open to leaving home to get treatment? Can you get him to a major cancer treatment center if he doesn't live near one?
    9. What is his insurance coverage? How may that complicate his treatment?
    10. Will he allow you to receive information about his care from the doctors? Will he authorize you as someone to receive information (A HIPPA waiver)?

    These are just a few of the questions that can help us help you. Also, begin keeping a notebook of all the information and see if you can get your dad to keep a notebook. Someone else should always go with your dad to his appointments to write down questions and answers. It is amazing how many things are said during the appointments that my dad would sometimes not hear or forget --- it is very stressful.

    Please feel free to message me with any questions - you can read my about me and get an idea about what is going on with my dad - also a recent post I made related to a question about a clinical trial from cher has information which may be helpful to you. My dad was diagnosed in December of 2009 so we have been through many ups and downs. Good luck and my prayers are with you and your family. Also, here is the link to my dad's caring bridge site http://www.caringbridge.org/visit/harrycollins2.

    Best wishes,
    Cindy

    ec
    Cindy! my dad has been dx with stage ivb mets to lungs,lymphnodes and bone..we have inquired with other docs and we had no luck,,,So we are getting treted in mt.sinai hospital in new york city..we live near by in staten island.

    Mdad has been treated in the past for liver disease and arterial hypertension..he has a compromised liver now and didnt handle first chemo very well. so it now has been modified to only 5fu and cisplatin. Dad is retired and has moved in with me and mt husband so i can care for him..and he is willing to try and fight..
    thank you for your help...i feel alone and that i am not doing enough,thx Vera
  • vera
    vera Member Posts: 13
    #10
    unclaw2002 said:

    Vera,Can you give us more
    Vera,

    First, let me say we are all survivors - every day you live after the diagnosis is one more day you have survived and even those on this board who are showing no evidence of disease (NED) or say they are in remission are still fighting. I think all of us fight every day and survive as well. And as many caregivers say when one of our loved ones gets cancer the entire family gets cancer. So if really is encouraging to consider your dad a survivor and a fighter together.

    Can you give us more specific information so we can better help? For instance:
    1. Where does your dad live? Where is he being treated?
    2. Who are his doctors and what type of diagnostic tests has he had? What type of espohageal cancer does he have? Where is the cancer located. Where has the cancer spread?
    3. Has he had a second opinion?
    4. Has he been tested for the HER2 gene to see if he is eligible for Herceptin treatment?
    5. Does you dad have any other physical conditions which might effect the type of treatment he can receive?
    6. What was your dad's general health before his diagonosis - is he active still working full time?
    7. What kind of support system does your dad have?
    8. What is your dad's attitude, how does he feel about all this? Is he ready or able to discuss the EC yet? Is he open to suggestions? Does he want to talk? Is he willing to challenge what the doctors say? Is he open to leaving home to get treatment? Can you get him to a major cancer treatment center if he doesn't live near one?
    9. What is his insurance coverage? How may that complicate his treatment?
    10. Will he allow you to receive information about his care from the doctors? Will he authorize you as someone to receive information (A HIPPA waiver)?

    These are just a few of the questions that can help us help you. Also, begin keeping a notebook of all the information and see if you can get your dad to keep a notebook. Someone else should always go with your dad to his appointments to write down questions and answers. It is amazing how many things are said during the appointments that my dad would sometimes not hear or forget --- it is very stressful.

    Please feel free to message me with any questions - you can read my about me and get an idea about what is going on with my dad - also a recent post I made related to a question about a clinical trial from cher has information which may be helpful to you. My dad was diagnosed in December of 2009 so we have been through many ups and downs. Good luck and my prayers are with you and your family. Also, here is the link to my dad's caring bridge site http://www.caringbridge.org/visit/harrycollins2.

    Best wishes,
    Cindy

    ec
    Cindy! my dad has been dx with stage ivb mets to lungs,lymphnodes and bone..we have inquired with other docs and we had no luck,,,So we are getting treted in mt.sinai hospital in new york city..we live near by in staten island.

    Mdad has been treated in the past for liver disease and arterial hypertension..he has a compromised liver now and didnt handle first chemo very well. so it now has been modified to only 5fu and cisplatin. Dad is retired and has moved in with me and mt husband so i can care for him..and he is willing to try and fight..
    thank you for your help...i feel alone and that i am not doing enough,thx Vera
  • vera
    vera Member Posts: 13
    #11
    unknown said:

    This comment has been removed by the Moderator

    ec smart
    Thank you sherri,,yes everyone here has been wonderful..i only hope there is a good turn out for all, this truely is a terrible disease..Vera

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