Feeling hopeless

John Char
John Char Member Posts: 30
in Esophageal Cancer #1

my husband has stage 3 esophagus cancer, it is in the lymp nodes and stomach and made it to his back. Doctor gave him 2 to 4 months. he started on Radiation 3 days ago. are the doctors close on how long you have to live?   

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    Your Husband

    No one knows exactly how long we have, only the man upstairs.  My aunt fought esophageal cancer for 3 1/2 years before her death.  My husband has been fighting first laryngeal cancer, then cancer at the cervical of his esophagus, then a reoccurrence at the cervical of his esophagus and spread to his right lung.  Cancer at the cervical of the esophagus is rare and he has already survived longer than any of his doctors thought he would.  He has been on in-home hospice since September 2013 and isn't doing too bad.  My husband decided in January 2013 that he wouldn't do any further treatments after 72 rounds of radiation, 10 rounds of chemo and surgery.  He said enough. 

    Doctors can only guess.  I pray that you and your husband have a long time together yet.  Take each day as it comes and enjoy it the best you can. 

    Wishing you and your family peace and comfort.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #3
    Sorry to hear your news

    Hello,

     

    Sorry to hear of your situation.  From what you're describing, it sounds like the correct staging would be stage IV.  Stage IV is metastatic, where it has spead to other, distant points.  Stage III is more localized spread to nearby lymph nodes.  I can't speak to how accurate your doctors may be, but I have a couple of suggestions in case you're not just looking to get affairs in order and wait.  

     

    First and foremost, the most important thing you can do in my opinion is to get to a top of the line cancer center.  Something like Johns Hopkins, Memorial Sloan Kettering, UPenn, M.D. Anderson (sorry for my east coast bias, but that's where I'm from).  I'm sure there are comparable facilities in your part of the world and someone here could probably point them out to you if you let folks know where you're from.  This is not a minor ailment, it is best treated by people who deal with it for a living instead of at your local hospital.  Secondly, find out about the HER2/Neu status.  If your husband is positive for that, there's a potentially powerful treatment available.  

     

    Hope your doctors are wrong,

     

    Ed

  • paul61
    paul61 Member Posts: 1,392 Member
    #4
    Deathorglory said:

    Sorry to hear your news

    Hello,

     

    Sorry to hear of your situation.  From what you're describing, it sounds like the correct staging would be stage IV.  Stage IV is metastatic, where it has spead to other, distant points.  Stage III is more localized spread to nearby lymph nodes.  I can't speak to how accurate your doctors may be, but I have a couple of suggestions in case you're not just looking to get affairs in order and wait.  

     

    First and foremost, the most important thing you can do in my opinion is to get to a top of the line cancer center.  Something like Johns Hopkins, Memorial Sloan Kettering, UPenn, M.D. Anderson (sorry for my east coast bias, but that's where I'm from).  I'm sure there are comparable facilities in your part of the world and someone here could probably point them out to you if you let folks know where you're from.  This is not a minor ailment, it is best treated by people who deal with it for a living instead of at your local hospital.  Secondly, find out about the HER2/Neu status.  If your husband is positive for that, there's a potentially powerful treatment available.  

     

    Hope your doctors are wrong,

     

    Ed

    Your doctor is just making an educated quess

    I have been on this forum for about four years. During that time I have seen many patients significantly outlive the time their doctor estimates they will live. I have also seen some who did not do as well as their doctor hoped. In the final analysis the doctor makes a guess on how long a patient has based on the extent of the cancer in the body and the physical condition of the patient. This guess ignores many things like the patient's support system, their will to survive, and new treatment approaches that that particular doctor may not be familiar with. 

    I would incourage you to get a second opinion from a hospital that has significant experience with the treatment of EC, they may have some ideas your current oncologist has not considered.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

     

    Cisplatin, Epirubicin, 5 FU - Four Year Survivor

  • John Char
    John Char Member Posts: 30
    #5
    Deathorglory said:

    Sorry to hear your news

    Hello,

     

    Sorry to hear of your situation.  From what you're describing, it sounds like the correct staging would be stage IV.  Stage IV is metastatic, where it has spead to other, distant points.  Stage III is more localized spread to nearby lymph nodes.  I can't speak to how accurate your doctors may be, but I have a couple of suggestions in case you're not just looking to get affairs in order and wait.  

     

    First and foremost, the most important thing you can do in my opinion is to get to a top of the line cancer center.  Something like Johns Hopkins, Memorial Sloan Kettering, UPenn, M.D. Anderson (sorry for my east coast bias, but that's where I'm from).  I'm sure there are comparable facilities in your part of the world and someone here could probably point them out to you if you let folks know where you're from.  This is not a minor ailment, it is best treated by people who deal with it for a living instead of at your local hospital.  Secondly, find out about the HER2/Neu status.  If your husband is positive for that, there's a potentially powerful treatment available.  

     

    Hope your doctors are wrong,

     

    Ed

    To deathorglory

    We are going to the Cleveland Clinic in Ohio. Have you ever heard of it?

  • John Char
    John Char Member Posts: 30
    #6
    Ladylacy said:

    Your Husband

    No one knows exactly how long we have, only the man upstairs.  My aunt fought esophageal cancer for 3 1/2 years before her death.  My husband has been fighting first laryngeal cancer, then cancer at the cervical of his esophagus, then a reoccurrence at the cervical of his esophagus and spread to his right lung.  Cancer at the cervical of the esophagus is rare and he has already survived longer than any of his doctors thought he would.  He has been on in-home hospice since September 2013 and isn't doing too bad.  My husband decided in January 2013 that he wouldn't do any further treatments after 72 rounds of radiation, 10 rounds of chemo and surgery.  He said enough. 

    Doctors can only guess.  I pray that you and your husband have a long time together yet.  Take each day as it comes and enjoy it the best you can. 

    Wishing you and your family peace and comfort.

    To Ladylacy

    When you say 72 rounds of radiation does that mean you went 72 times? My husband it doing 10 radiation in a row. Is that 10 rounds or 1?? Is the chemo worth taking? Is it going to take the time he has left and make him so sick he will wish he didn't do it? 

  • John Char
    John Char Member Posts: 30
    #7
    paul61 said:

    Your doctor is just making an educated quess

    I have been on this forum for about four years. During that time I have seen many patients significantly outlive the time their doctor estimates they will live. I have also seen some who did not do as well as their doctor hoped. In the final analysis the doctor makes a guess on how long a patient has based on the extent of the cancer in the body and the physical condition of the patient. This guess ignores many things like the patient's support system, their will to survive, and new treatment approaches that that particular doctor may not be familiar with. 

    I would incourage you to get a second opinion from a hospital that has significant experience with the treatment of EC, they may have some ideas your current oncologist has not considered.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

     

    Cisplatin, Epirubicin, 5 FU - Four Year Survivor

    To paul61

    We are going to the Cleveland Clinic. I don't know if you ever heard of it. It takes us 2 hours 1 way to get there. Nobody believes he has this he does so much for so many people. After his radiation treatment he goes to the nursing home to take care of my dad. We have 3 neighbors that count on him that are in their 70s to 90s. He has been pushing himself to much I'm afraid.  This just don't seem like God could take someone so good.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #8
    John Char said:

    To Ladylacy

    When you say 72 rounds of radiation does that mean you went 72 times? My husband it doing 10 radiation in a row. Is that 10 rounds or 1?? Is the chemo worth taking? Is it going to take the time he has left and make him so sick he will wish he didn't do it? 

    Radiation

    The first time my husband had 35 radiation treatments.  One a day for 7 weeks for his laryngeal cancer.  The second time (a year later) he had 72 radiation treatments for the tumor at the cervical of his esophagus. 

    You need to know that not everyone responds to chemo or radiation in the same manner.  My husband did well considering his age when he started his journey with laryngeal cancer he was 73 and that has been 4 years ago.  As far as the chemo, we were told upfront when the reoccurrence and spread was found that the chemo would only prolong his life and possibly hasten it because this time the chemo would be stronger.  We were told this by three different doctors and they all agreed with my husband's decision.  But like I said before my husband had already told me no more that he preferred quality of life over quantity.  Hard decision to accept but it was his decision and his alone.

    I see where you are going for a second opinion that is great.  Also make sure you have a surgeon and oncologist who are very knowledgeable in this field.  That is very important.  But after all is said and done it is still your husband's decision to make.  Any cancer treatment is hard on the body and some just can't handle the chemo while others have no side effects or very little side effects.

    Wishing you and your family peace and comfort  

  • paul61
    paul61 Member Posts: 1,392 Member
    #9
    John Char said:

    To paul61

    We are going to the Cleveland Clinic. I don't know if you ever heard of it. It takes us 2 hours 1 way to get there. Nobody believes he has this he does so much for so many people. After his radiation treatment he goes to the nursing home to take care of my dad. We have 3 neighbors that count on him that are in their 70s to 90s. He has been pushing himself to much I'm afraid.  This just don't seem like God could take someone so good.

    The Cleveland Clinic has an excellent reputation

    The Cleveland Clinic has an excellent reputation as a diagnostic facility. I have not heard a lot about their capabilities in the esophageal cancer area. Two facilities that do have excellent reputations as esophageal cancer treatment faciliteis that would be near you include University of Michigan Cancer Center in Ann Arbor, MI and University Pittsburgh Medical Center in Pittsburgh, PA.

    Both of these facilities are nationally recognized as centers of excellence in the treatment of EC.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU - Four Year Survivor 

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #10
    Cleveland Clinic

    The Cleveland Clinic has an outstanding reputation.  I hope they're able to help you guys.

     

    Ed

  • John Char
    John Char Member Posts: 30
    #11
    paul61 said:

    The Cleveland Clinic has an excellent reputation

    The Cleveland Clinic has an excellent reputation as a diagnostic facility. I have not heard a lot about their capabilities in the esophageal cancer area. Two facilities that do have excellent reputations as esophageal cancer treatment faciliteis that would be near you include University of Michigan Cancer Center in Ann Arbor, MI and University Pittsburgh Medical Center in Pittsburgh, PA.

    Both of these facilities are nationally recognized as centers of excellence in the treatment of EC.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU - Four Year Survivor 

    Paul61

    Thank you so much for taking time to write to us. Tomorrow we go see the doctor after radiation I wish you was here to go with us.

  • John Char
    John Char Member Posts: 30
    #12
    Deathorglory said:

    Cleveland Clinic

    The Cleveland Clinic has an outstanding reputation.  I hope they're able to help you guys.

     

    Ed

    To deathorglory

    Thank You for answering me. We go for radiation and to see the doctor after Tomorrow. He has been having pain in his chest so we are going to ask for the first time for him some pain pills. He has been getting real bad head acks too. He hasn't wanted to complain before but it's bad enough he is going to ask. 

  • John Char
    John Char Member Posts: 30
    #13
    Getting ready to start chemo

    My husband just finished he radiation. the radiation doctor said he did better than expected. He is going to the chemo doctor next week. I have been reading and saw somewhere there is a pill that will help him with the chemo sickness. Does any one remember what it is.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #14
    Sounds good

    Hello,

     

    I was given 7-8 months about 3 years ago.  I was given a series of medications (I think about 3-4) to take to minimize the side effects of my chemo (folfox).  My doctor was 100X more concerned about side effects than I was.  I was only concerned with killing the cancer.  It worked out well, b/c she killed the cancer and I only suffered minimal side effects.  I don't recall which medications she prescribed, but they are what worked for me, not what would necessarily work in your case.  The key is to have a doctor that you trust to prescribe what will work for you.  

     

    I hope things work out as well as possible,

     

    Ed

  • paul61
    paul61 Member Posts: 1,392 Member
    #15
    John Char said:

    Getting ready to start chemo

    My husband just finished he radiation. the radiation doctor said he did better than expected. He is going to the chemo doctor next week. I have been reading and saw somewhere there is a pill that will help him with the chemo sickness. Does any one remember what it is.

    Emend was very helpful for me

    There are a number of medications used by oncologists to deal with nausea side effects from chemotherapy. My oncologist prescribed two anti-nausea drugs for me when I was completing my chemotherapy treatment. The main drug was Emend. It took this medication for three days after each chemotherapy infusion. I also took Decadron for break through nausea, although I seldom had to take it. Emend seemed to do a good job of managing the nausea.

    Here is a reference that describes the common anti-nausea drugs used in chemotherapy:

    http://chemocare.com/chemotherapy/side-effects/nausea-vomiting-chemotherapy.aspx#.U76IqfldXg8

    Best Regards,

    Paul Adams

    McCormick, South Carolina
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Four Year Survivor

     

     

  • JKGulliver
    JKGulliver Member Posts: 93
    #16
    Cleveland Clinic

    You can have confidence in Cleveland Clinic.  It is known nationwide.  But doctors there are still making educated guesses. And people respond to treatment differently.  

  • Di
    Di Member Posts: 2
    #17
    Deathorglory said:

    Sounds good

    Hello,

     

    I was given 7-8 months about 3 years ago.  I was given a series of medications (I think about 3-4) to take to minimize the side effects of my chemo (folfox).  My doctor was 100X more concerned about side effects than I was.  I was only concerned with killing the cancer.  It worked out well, b/c she killed the cancer and I only suffered minimal side effects.  I don't recall which medications she prescribed, but they are what worked for me, not what would necessarily work in your case.  The key is to have a doctor that you trust to prescribe what will work for you.  

     

    I hope things work out as well as possible,

     

    Ed

    Esophagal cancer mets to liver and lungs.

    Dear Ed you give me hope! My husband has been diagnosed with the above, he is waiting to hear if he is her positive, due to start chemo on the 8th of August cisplatin with her if a candidate, he is a fit 59 yr old never smoked drank or been overweight...seems very unfair..we are in London so Nhs have bought him to the heat on holiday prior to chemo thank God for pain meds will keep you posted thank you for your positivity D 

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