diagnosed 2 mos ago

mumphy
mumphy Member Posts: 440
edited March 2014 in Esophageal Cancer #1
My husband was diagnosed 2 mos ago with EC. We were so lucky that the Dr.'s referred him to the Hillman Cancer Center in Pittsburgh. He has stage IV cancer and is on chemo therapy until he has a new PET scan in 9 weeks at which time Dr. Luketich will decide if he can do the esophagectomy.

I guess what I want to know is any suggestions about how to hang in there with all thats going on. Sometimes I feel like I'm all alone. I do have a good support system but even with them I still feels like I'm all alone.

Comments

  • kitten0385
    kitten0385 Member Posts: 248
    #2
    Mumphy,

    I'm glad you found this sight, there are some wonderful people on here, and even one that has the same surgeon your husband does! I am 24, and am several months out from my esophagectomy, I was diagnosed with stage 3 EC in October when I was 23. At this point I am doing well and am awaiting another CT for follow up in August. Keep your chin up, and I am here to chat if you want!

    I wish you and your husband the best!!

    Cathy
  • mumphy
    mumphy Member Posts: 440
    #3
    kitten0385 said:

    Mumphy,

    I'm glad you found this sight, there are some wonderful people on here, and even one that has the same surgeon your husband does! I am 24, and am several months out from my esophagectomy, I was diagnosed with stage 3 EC in October when I was 23. At this point I am doing well and am awaiting another CT for follow up in August. Keep your chin up, and I am here to chat if you want!

    I wish you and your husband the best!!

    Cathy

    Cathy,
    Thank you for sharing
    Cathy,

    Thank you for sharing your story with me. My husband goes tomarrow for he weekly labs and
    and for more 5fu infusion hook up. He has been such a bear all day today. This is the first day since his chemo started that he complained. I think that he is anxious about tomarrow. By the way his name is Al and mine is Kathy he is 61, before he was diagnosed he was as healthy as a horse as they say. He never had more than a cold in the 12 years that we have been together.

    Thank again for your reply.
    Talk to you soon.
    Kathy
  • seeker777
    seeker777 Member Posts: 1
    #4
    2 months
    I have been "c free" for over 20 years. My throat C was very aggressive requiring, radical surgery. I elected to be the 5th "trial operation" and it worked, difficult but successful. The one thing that truly got me through and still does today is PMA, for real. My terrific Dr. even commented he had never seen anyone with such FAITH, and it clearly proved itself. Wish I could offer more,so please remember, never ever give in to C. It has a mind of its own waiting for less than 100% effort to rid the C.
    Best of life to you and yours!
    John K.
  • ctgringa
    ctgringa Member Posts: 2
    #5
    mumphy said:

    Cathy,
    Thank you for sharing
    Cathy,

    Thank you for sharing your story with me. My husband goes tomarrow for he weekly labs and
    and for more 5fu infusion hook up. He has been such a bear all day today. This is the first day since his chemo started that he complained. I think that he is anxious about tomarrow. By the way his name is Al and mine is Kathy he is 61, before he was diagnosed he was as healthy as a horse as they say. He never had more than a cold in the 12 years that we have been together.

    Thank again for your reply.
    Talk to you soon.
    Kathy

    My Husband also!
    Hello Kathy,

    My name is Maureen and my husband was diagnosed in April of this year. He is stage 4 and surgery is not an option at this point. He went for 4 chemo sessions and then last week they did a scan. The doctor told him that the tumor in his esophagus has shrunk and the other lymph nodes that were scattered around his body have decreased in half, so they are going to continue on with the chemo, because it working. My husband is 55 and like yours had never been sick in the 12 yrs we've been together, he had never missed a day of work. Since he has started the chemo treatments he has only missed one day and that was after the first treatment. The day he has the hook up he straps on his pack to his belt and goes to work. It does get lonely being the wife and life now is all about the cancer and him and the treatments. He had been a horror to live with until we got the positive news last week. I know he is frustrated and it does seem selfish to complain, but I am only human. I totally feel what you are going through and it is nice to be able to share with someone going through the same. Please feel free to write back.
    Maureen
  • mumphy
    mumphy Member Posts: 440
    #6
    ctgringa said:

    My Husband also!
    Hello Kathy,

    My name is Maureen and my husband was diagnosed in April of this year. He is stage 4 and surgery is not an option at this point. He went for 4 chemo sessions and then last week they did a scan. The doctor told him that the tumor in his esophagus has shrunk and the other lymph nodes that were scattered around his body have decreased in half, so they are going to continue on with the chemo, because it working. My husband is 55 and like yours had never been sick in the 12 yrs we've been together, he had never missed a day of work. Since he has started the chemo treatments he has only missed one day and that was after the first treatment. The day he has the hook up he straps on his pack to his belt and goes to work. It does get lonely being the wife and life now is all about the cancer and him and the treatments. He had been a horror to live with until we got the positive news last week. I know he is frustrated and it does seem selfish to complain, but I am only human. I totally feel what you are going through and it is nice to be able to share with someone going through the same. Please feel free to write back.
    Maureen

    So happy for you
    Maureen,

    I am so glad that you got some good news that the chemo is working!!! I can only imagine
    how great that made you both feel. I do have a question did the DR's say how many more treatment your husband will need and if he will need and esophagectomy or will they just try to get rid of the tumors without surgery.


    As far as being a frustrated caregiver I would rather be frustrated and mad and upset every day of my life with him then not having here with me at all. I pray to GOD that
    he will give us all a chance to have better days in the future.

    Thanks
    Kath
  • poopsiegal
    poopsiegal Member Posts: 23
    #7
    ctgringa said:

    My Husband also!
    Hello Kathy,

    My name is Maureen and my husband was diagnosed in April of this year. He is stage 4 and surgery is not an option at this point. He went for 4 chemo sessions and then last week they did a scan. The doctor told him that the tumor in his esophagus has shrunk and the other lymph nodes that were scattered around his body have decreased in half, so they are going to continue on with the chemo, because it working. My husband is 55 and like yours had never been sick in the 12 yrs we've been together, he had never missed a day of work. Since he has started the chemo treatments he has only missed one day and that was after the first treatment. The day he has the hook up he straps on his pack to his belt and goes to work. It does get lonely being the wife and life now is all about the cancer and him and the treatments. He had been a horror to live with until we got the positive news last week. I know he is frustrated and it does seem selfish to complain, but I am only human. I totally feel what you are going through and it is nice to be able to share with someone going through the same. Please feel free to write back.
    Maureen

    stand strong
    hi maureen my name is aderienne and my son name is jj he is 27 and he also is batteling stage four ec and surgery is out for him also.
    it feels so good to c someone who has the same ugly disease as him but my heart goes out to you and your hubby u understand what i mean when i say to c someone going through this i hate that any one hasto to go through this but it gives you more hope to c that person doing good and is making it day by day.
    jj cant work but he is doing ok his tuomr also is shrinking and he had a spot on his liver but it has just about vanished we have no clue how this happen but we just continue to pray and hold on to our faith thats all we have and this blog i love this sight it gives me hope and a chance to vent lol.
    jj was dx jan o8 and on that day our lives has been changed forever more.
    he has had some rough days but he is a fighter but being his mom omg its killing me on the inside we have a very strong family but they really dont understand the pain within.
    i just wanted to say hello and let u know to hang in there and we can be chatting buddies when we need to vent lol tell your hubby we r praying for him and you and your family just remeber its not over to GOD say its over GOD bless from the STL.
    my email is poopsiegal@yahoo.com
  • kitten0385
    kitten0385 Member Posts: 248
    #8
    poopsiegal said:

    stand strong
    hi maureen my name is aderienne and my son name is jj he is 27 and he also is batteling stage four ec and surgery is out for him also.
    it feels so good to c someone who has the same ugly disease as him but my heart goes out to you and your hubby u understand what i mean when i say to c someone going through this i hate that any one hasto to go through this but it gives you more hope to c that person doing good and is making it day by day.
    jj cant work but he is doing ok his tuomr also is shrinking and he had a spot on his liver but it has just about vanished we have no clue how this happen but we just continue to pray and hold on to our faith thats all we have and this blog i love this sight it gives me hope and a chance to vent lol.
    jj was dx jan o8 and on that day our lives has been changed forever more.
    he has had some rough days but he is a fighter but being his mom omg its killing me on the inside we have a very strong family but they really dont understand the pain within.
    i just wanted to say hello and let u know to hang in there and we can be chatting buddies when we need to vent lol tell your hubby we r praying for him and you and your family just remeber its not over to GOD say its over GOD bless from the STL.
    my email is poopsiegal@yahoo.com

    Adrienne,

    My name is Cathy. I am only 24, and was 23 at the time of my diagnosis in October of 08. I was diagnosed with stage 3 esophageal cancer. Your son is one of the only ones I have heard of being around my age with the same kind of cancer. It is great to hear he is hanging in there! I did not work during any of my treatments either. I plan to go back to teaching next month...I was off for a total of 10 months. I can't say I know what you're going through as JJ's mother, but I do know how upset my mother has been throughout this ordeal, and my heart goes out to you. If you ever want to e-mail me, or if your son ever wants someone to talk to that is around his age, my e-mail is kitten0385@gmail.com. I also check this sight daily. My thoughts and prayers are with you and your family!

    Cathy
  • kitten0385
    kitten0385 Member Posts: 248
    #9
    seeker777 said:

    2 months
    I have been "c free" for over 20 years. My throat C was very aggressive requiring, radical surgery. I elected to be the 5th "trial operation" and it worked, difficult but successful. The one thing that truly got me through and still does today is PMA, for real. My terrific Dr. even commented he had never seen anyone with such FAITH, and it clearly proved itself. Wish I could offer more,so please remember, never ever give in to C. It has a mind of its own waiting for less than 100% effort to rid the C.
    Best of life to you and yours!
    John K.

    John,

    Thank you so much for your post! It is wonderful to know that there are survivors out there that have been around for over 20 years! Wow, so wonderful!! I am 24 and have been battling esophageal cancer, I am awaiting another scan in just a few weeks to see if all is still clear. Thanks again for your post!

    Cathy
  • poopsiegal
    poopsiegal Member Posts: 23
    #10
    kitten0385 said:

    Adrienne,

    My name is Cathy. I am only 24, and was 23 at the time of my diagnosis in October of 08. I was diagnosed with stage 3 esophageal cancer. Your son is one of the only ones I have heard of being around my age with the same kind of cancer. It is great to hear he is hanging in there! I did not work during any of my treatments either. I plan to go back to teaching next month...I was off for a total of 10 months. I can't say I know what you're going through as JJ's mother, but I do know how upset my mother has been throughout this ordeal, and my heart goes out to you. If you ever want to e-mail me, or if your son ever wants someone to talk to that is around his age, my e-mail is kitten0385@gmail.com. I also check this sight daily. My thoughts and prayers are with you and your family!

    Cathy

    aderienne
    dear kathy thanks alot it truly helps talking to someone whos going through this also i am so glad i found this sight i will give my son your email and hopefully he uses it because even though he knows we r there and feel his pain its still good to talk to someone who has been there.i notice u encourage alot of ppl on here and u just keep it up because GOD IS SMILING DOWN on you for your words of encouragement.
    and we continue to pray for you that u continue to stay on the road of recovery.
  • kitten0385
    kitten0385 Member Posts: 248
    #11
    poopsiegal said:

    aderienne
    dear kathy thanks alot it truly helps talking to someone whos going through this also i am so glad i found this sight i will give my son your email and hopefully he uses it because even though he knows we r there and feel his pain its still good to talk to someone who has been there.i notice u encourage alot of ppl on here and u just keep it up because GOD IS SMILING DOWN on you for your words of encouragement.
    and we continue to pray for you that u continue to stay on the road of recovery.

    Aderienne,

    Thank you for your kind words as well!! I look forward to hearing from your son if he wishes to talk, I do know how he feels...especially when this is a cancer typically not found in our age group. I will continue sending prayers your way as well!!

    Cathy
  • kitten0385
    kitten0385 Member Posts: 248
    #12
    poopsiegal said:

    aderienne
    dear kathy thanks alot it truly helps talking to someone whos going through this also i am so glad i found this sight i will give my son your email and hopefully he uses it because even though he knows we r there and feel his pain its still good to talk to someone who has been there.i notice u encourage alot of ppl on here and u just keep it up because GOD IS SMILING DOWN on you for your words of encouragement.
    and we continue to pray for you that u continue to stay on the road of recovery.

    Aderienne,

    Thank you for your kind words as well!! I look forward to hearing from your son if he wishes to talk, I do know how he feels...especially when this is a cancer typically not found in our age group. I will continue sending prayers your way as well!!

    Cathy
  • szaboe
    szaboe Member Posts: 19
    #13
    Hello
    Hello,
    My brother was diagnosed with esophageal cancer stage 1V. He has recieved chemo and radiation, and he has had alot of side effects,,, Can you tell me how I can contact this place in Pitsburg, As I wish to take my brother for a second opionion...? Also, who do I contact,and how do I get the referral,
    MY prayers are to him, and your family, as I and everyone here on this site know the power of prayer and family,
    thanks for your reply!!

    Eileen
  • mumphy
    mumphy Member Posts: 440
    #14
    eileen
    The cancer center that we are going to Hillman Cancer Center they have great Dr's and staff
    here is the phone #for Dr. Michael Gibson 412-692-4724 let your Dr know you would like to
    go there for another opinion.

    Glad to help

    Kathy
  • szaboe
    szaboe Member Posts: 19
    #15
    mumphy said:

    eileen
    The cancer center that we are going to Hillman Cancer Center they have great Dr's and staff
    here is the phone #for Dr. Michael Gibson 412-692-4724 let your Dr know you would like to
    go there for another opinion.

    Glad to help

    Kathy

    thankyou


    Dear Kathy:

    thankyou for your information:I sincerly appreciate your efforts and everyone else's, you truly are gems on earth to go out of your way to help other people in need

    thankyou and prayers to you and your family and all.

    Eileen

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