Now what?

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BarefootBob
BarefootBob Member Posts: 72
edited September 2012 in Head and Neck Cancer #1
Now that my doc has given me 8-10 months, and said that this is Non-curable, what now? We are looking into trials an options, looking at hospitals like MD Anderson in Houston, UIC (Chicago), Mayo, etc.

I guess what I am saying is there any chance that the doctor could be wrong, and that one of these trials nay give me another 3 yrs, five years of should I just start planning for the inecitable?

Still waiting on word from UIC and calling Anderson later on today...they are supposed to be no. 1 in the country. Anyway, maybe I am in just denial, but is there a sliver of hope?

Grasping at straws,
Robert Eckhart
«1

Comments

  • Redbanker
    Redbanker Member Posts: 36
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    Hope
    Bob, there is always hope and so many stories to back that up. I was thinking of the author Katherine Russell Rich who was able to live 25 years past a Stage 4 breast cancer diagnosis. I heard her interviewed last year and she talked about enrolling herself in a new trial every time she had a setback. Then I recalled the results that UPenn had with a trial for chronic lymphocytic leukemia in which they were able to effect a cure. Every advance, every cure had its genesis in a trial, in some researcher’s best guess. The kicker will always be the how punishing is the treatment and also picking the most promising if there is more than one trial. I’d just say keep researching your options and make your decision as each comes into focus. You have my prayers for the best possible outcome.

    Nancy
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Redbanker said:

    Hope
    Bob, there is always hope and so many stories to back that up. I was thinking of the author Katherine Russell Rich who was able to live 25 years past a Stage 4 breast cancer diagnosis. I heard her interviewed last year and she talked about enrolling herself in a new trial every time she had a setback. Then I recalled the results that UPenn had with a trial for chronic lymphocytic leukemia in which they were able to effect a cure. Every advance, every cure had its genesis in a trial, in some researcher’s best guess. The kicker will always be the how punishing is the treatment and also picking the most promising if there is more than one trial. I’d just say keep researching your options and make your decision as each comes into focus. You have my prayers for the best possible outcome.

    Nancy

    Wow.
    I can't improve on Nancy's answer, except to repeat that yes, there is always hope. Sometimes, remission is enough.

    Deb
  • ooo
    ooo Member Posts: 105
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    Bob, I'm so very sorry to
    Bob, I'm so very sorry to hear what you're going through. There are people who survive the most frightening diagnoses. Even when the odds are not good, someone survives. And that someone could be you. I live in Boston and there are a lot of clinical trials going on around here. If you happen to find anything in the area and you need some logistic support, feel free to contact me.

    Best of luck to you my friend.

    Dre.
  • Sam999
    Sam999 Member Posts: 319 Member
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    D Lewis said:

    Wow.
    I can't improve on Nancy's answer, except to repeat that yes, there is always hope. Sometimes, remission is enough.

    Deb

    Hi Bob,
    So sorry to hear

    Hi Bob,

    So sorry to hear this. My thoughts and prayers for you and your family. As they say, docs can give you any diagonasis but biggest decision maker is up there in the sky. I have heard many stories of docs giving few months and god giving much longer.

    Did you look into bitter almond kernels. If you look it up on amazon, some folks have put some really good reviews. I personally do not have experience with it.

    Hope something works out for you. You may also want to post on oral cancer foundation site, there are bunch of good folks that help a lot too.

    Sam
  • Hard12Find
    Hard12Find Member Posts: 218 Member
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    Bob
    Not to make light of your situation, I know we all have pondered, treatment versus quality of end of life. I can't imagine a tougher situation to be faced with, but every time I hear someone says the dr. Gave me xx months, it reminds me of a little joke with hidden meaning. So here goes,

    The man was at his doctors office and the doctor told him he had six months to live. The man replied " SIX MONTHS ! " I won't even be able to pay your bill in six months, to which the doctor replied well in that case you have nine months...........

    The moral of the story is that no man can tell you when your are going to die, our doctors are smart compassionate human beings, but still human none the less. I would take it as a challenge, find and try clinical trials, naturopathy, as well as preparing yourself mentally and physically, and spiritually to accept whatever comes your way. You can give up and no one here would blame you, but I for one intend to go out fighting, with my head held high.
    If cancer takes me, I know I will have gotten in some good licks. Only you can decide whether to put the gloves back on and stay in the fight, or spend time making things right with friends and family.
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
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    ooo said:

    Bob, I'm so very sorry to
    Bob, I'm so very sorry to hear what you're going through. There are people who survive the most frightening diagnoses. Even when the odds are not good, someone survives. And that someone could be you. I live in Boston and there are a lot of clinical trials going on around here. If you happen to find anything in the area and you need some logistic support, feel free to contact me.

    Best of luck to you my friend.

    Dre.

    CNN
    I commented on a post of yours yesterday Robert and as I said
    my heart goes out to you. Just wanted you to know that on CNN
    this morning was Dr Sanje Gupta talking about a cancer "cure"
    being researched at MD Anderson for Breast, Melanoma, prostate,
    Luikemia and lung cancer. They have been given $3 billion to resaerch
    takeing the persons "immune system" and programing it to remember and
    respond to when a threat (cancer) returns to the body. This is what
    I have talked about in many of my posts. Please contact me personally
    and I or my wife will give you some very valuble information that you
    can research yourself.
    When faced with a situation like you are in explore all possibilities
    and you will find something that works.

    God bless
    Tonsil dad,

    Dan.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Always Hope Bob...
    Definitely look at other facilities and get more opinions....

    Thoughts, Prayers, Hopes and Dreams...
    John
  • hawk711
    hawk711 Member Posts: 566
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    Hate to hear this Bob
    Bob, I would refer you to Hondo for guidance. He was given bad news too, several years ago. I don't want to speak for him, but I remember his story was also dire.
    All I can say is that I follow the philosophy of Lance Armstrong and Jim Valvano. Jim's is "never ever give up" and Lance wrote that "pain is temporary, but giving up is forever"
    I am praying for you to find the strength to fight on and keep looking for some type of treatment as you go forth. You may be the one that the new treatment helps. Keep looking!
    again, keep up the fight and never give up.
    Steve
  • ditto1
    ditto1 Member Posts: 660
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    hawk711 said:

    Hate to hear this Bob
    Bob, I would refer you to Hondo for guidance. He was given bad news too, several years ago. I don't want to speak for him, but I remember his story was also dire.
    All I can say is that I follow the philosophy of Lance Armstrong and Jim Valvano. Jim's is "never ever give up" and Lance wrote that "pain is temporary, but giving up is forever"
    I am praying for you to find the strength to fight on and keep looking for some type of treatment as you go forth. You may be the one that the new treatment helps. Keep looking!
    again, keep up the fight and never give up.
    Steve

    Words are not
    going to change how you feel but thats all we have to offer. I know and most would agree if we are told a time frame to live it would turn our worlds upside down and not sure how we would react. That said you will need to take it one day at a time for now, and research all your options and as others said there is no wrong answer, fight if you have options and or enjoy what ever God has planned for you. All I can say is you and everyone on these blogs have known of someone who was given a death time frame only to be around for many years,, maybe the exception not the rule, but who says you cannot be the exception and share your story years from now. My exwife was dx with a brain tumor when she was 13 with a 1-2 year life span based on her dx, well she is 55 now. I share this because this is a story I know personally. God Bless you Bob
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Bob
    obviously youve been dealt a tough hand. Dont put much stock in the survival numbers youve been given, though. Those numbers are not writ in stone, and only make general sense when looking at averages, not individuals. We have seen people here who are alive with disease ten years after being given your prognosis. And for the rest of us, there is no idea what tomorrow has in store. So get on with your life. Do whatever you decide on your disease, but dont let the disease claim one unnecessary second of your time.

    Pat
  • Pumakitty
    Pumakitty Member Posts: 652
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    Never give up hope
    When dad had his reoccurance last september they told him a year at the most. Well it has been a year and he has no problems that we know of. He will get his results on Tuesday. But the point is we did not give up. We fought the ENT and demanded he try a new chemo and it has worked for a year. So please do not give up hope.


    Kathy
  • blackswampboy
    blackswampboy Member Posts: 341
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    please keep fighting
    yes, your doctor could be wrong. you're doing right to get as many medical opinions and possible courses of treatment as possible.
    please let us know what anderson says--their new "moonshot" initiative is certainly impressive.
  • hwt
    hwt Member Posts: 2,328 Member
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    please keep fighting
    yes, your doctor could be wrong. you're doing right to get as many medical opinions and possible courses of treatment as possible.
    please let us know what anderson says--their new "moonshot" initiative is certainly impressive.

    Bob
    Maybe not by coincidence, my cousin who was told to get his affairs in order and now is 8 years cancer free, is also named Bob. He had mets melanoma and participated in a clinical trial. I will keep you in my prayers.
  • ToBeGolden
    ToBeGolden Member Posts: 695
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    National Institutes of Health.
    You probably already know this: the National Institutes of Health maintains a website of clinical trials at http://clinicaltrials.gov

    I also like Hondo, who has embraced alternative methods after the docs gave up on him. There is a time to give up, but it doesn't seem to be the time for you to give up. If it were your time, you would not be asking these questions. Hope I didn't speak out of line. Rick.
  • KareGiver
    KareGiver Member Posts: 301 Member
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    National Institutes of Health.
    You probably already know this: the National Institutes of Health maintains a website of clinical trials at http://clinicaltrials.gov

    I also like Hondo, who has embraced alternative methods after the docs gave up on him. There is a time to give up, but it doesn't seem to be the time for you to give up. If it were your time, you would not be asking these questions. Hope I didn't speak out of line. Rick.

    Bob...
    My husband is currently in a trial at Loyola (Chicago) for mets found this past April. He just got a second opinion at University of Chicago this past week. He was offered a trial there if he wants it. There are definitely options out there. In April, they told my husband - 7 months to live without treatment, a year with treatment - some people do better. We're looking towards the "some people do better" thing. At the very least, he is getting things in order and planning on living life to the fullest however long it may be. I believe you are younger - which I think would be in your favor. DON'T GIVE UP! Please PM me if you feel I can help you in any way. Take care.
  • denistd
    denistd Member Posts: 597
    Options

    CNN
    I commented on a post of yours yesterday Robert and as I said
    my heart goes out to you. Just wanted you to know that on CNN
    this morning was Dr Sanje Gupta talking about a cancer "cure"
    being researched at MD Anderson for Breast, Melanoma, prostate,
    Luikemia and lung cancer. They have been given $3 billion to resaerch
    takeing the persons "immune system" and programing it to remember and
    respond to when a threat (cancer) returns to the body. This is what
    I have talked about in many of my posts. Please contact me personally
    and I or my wife will give you some very valuble information that you
    can research yourself.
    When faced with a situation like you are in explore all possibilities
    and you will find something that works.

    God bless
    Tonsil dad,

    Dan.

    Hi Dan
    I thinks it would be great if you could get that info to both Bob and I. Denis
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    there is always hope
    Dearest Bob,

    There is always the chance the doctors are wrong and you have many more years ahead of you.

    Best,

    Matt
  • Billie67
    Billie67 Member Posts: 898
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    CivilMatt said:

    there is always hope
    Dearest Bob,

    There is always the chance the doctors are wrong and you have many more years ahead of you.

    Best,

    Matt

    Of course
    There is a chance the doctors are wrong, I agree fully that you should look into trials and studies.
    I am praying for you and for the perfect treatment.
    Billie
  • Pam M
    Pam M Member Posts: 2,196
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    Somebody
    Somebody has to be the exception. Hope it's you in this case. The reason we have so many wonderful drugs today is at least partially because we had people in trials making great strides.
  • katenorwood
    katenorwood Member Posts: 1,912
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    You are a fighter !
    Bob,
    It sounds like you're doing everything in the right way ! Our best fighting gloves on, and continue to beat this demon back ! I'm praying every nite for you and your family. Katie