Now what?

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Comments

  • josh r.
    josh r. Member Posts: 264 Member
    #22
    Faith and more
    Bob,
    In July I was given 10% chance of seeing Christmas, this was in 1991! I believe that I am still here because of fine doctors, loving family and friends and Faith. I am praying that you have the same winning combination going for you. You certainly have us on this site.
    Hang in there, Josh r.
  • nick770
    nick770 Member Posts: 195
    #23
    Keep fighting and look for
    Keep fighting and look for clinical trials dont let the doctor decode for you.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #24
    either
    Robert Eckhart, my choice would be either or both..... but most certainly "Never, Never, Never Give Up"

    hugs to you and your family

    john
  • Hondo
    Hondo Member Posts: 6,636 Member
    #25
    Don’t give up!
    Hi Bob

    When my NPC came back a third time I to was told all that could be done was more Chemo and that I only had a less then 5% change that it would even work. I went home to Honduras to see my family one last time and while there did A.C.T. all this was back in 2006. I am still here today, I suffer with a lot of side effects of all the radiation treatments to the head and I can no longer swallow food, it all goes through a Peg Tube now, but I am still alive 6 years later. I still work full time as a Maintenance Manager for an offshore Diving Company. I am not as good as I once was and they know that but I still retain 35 years of doing what I do, and that you can’t learn in a School or in a book. Keep looking, and don’t just look; keep an open mind on different types of treatment and your prayers asking God to help you find what you need to be doing. I don’t believe in Non-Curable.

    I am praying for you my friend
    Tim Hondo
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #26
    Hondo said:

    Don’t give up!
    Hi Bob

    When my NPC came back a third time I to was told all that could be done was more Chemo and that I only had a less then 5% change that it would even work. I went home to Honduras to see my family one last time and while there did A.C.T. all this was back in 2006. I am still here today, I suffer with a lot of side effects of all the radiation treatments to the head and I can no longer swallow food, it all goes through a Peg Tube now, but I am still alive 6 years later. I still work full time as a Maintenance Manager for an offshore Diving Company. I am not as good as I once was and they know that but I still retain 35 years of doing what I do, and that you can’t learn in a School or in a book. Keep looking, and don’t just look; keep an open mind on different types of treatment and your prayers asking God to help you find what you need to be doing. I don’t believe in Non-Curable.

    I am praying for you my friend
    Tim Hondo

    Bob,
    I can't say any better than what the long-term survivors (who have been through sooooo much more than me) have said on this post. I can add to what all the others on here feel, we did not want you to get such news, and if only there was a way to make it all go-away...

    ..with that said, the only fix I know is prayer...so I too will be praying for you ....that you will be around for many, many years and we can all look back on these posts and relish the extra time

    Best,

    Tim
  • bjohn
    bjohn Member Posts: 20
    #27
    Hope
    My husband was diagnosed with an olfactory neuroblastoma on 3/2011. His was stage IV.We were treated at a large center in Chicago and got a second opinion at U of C when he had a reoccurance 1 year later. No study was available but they did more aggresive treatment which he just finished. He had a great response and feels the best since diagnosis. He is a very positive person and all I can believe is that someone has to beat the odds sometimes. Being a nurse, I have also seen some amazing recoveries! Best of luck
  • Greg53
    Greg53 Member Posts: 849
    #28
    bjohn said:

    Hope
    My husband was diagnosed with an olfactory neuroblastoma on 3/2011. His was stage IV.We were treated at a large center in Chicago and got a second opinion at U of C when he had a reoccurance 1 year later. No study was available but they did more aggresive treatment which he just finished. He had a great response and feels the best since diagnosis. He is a very positive person and all I can believe is that someone has to beat the odds sometimes. Being a nurse, I have also seen some amazing recoveries! Best of luck

    Bob
    Bob,

    I see lots of good advice here - second opinions, clinical trials, lots of folks beating the doc's guesses. Best one - keep a positive attitude, we're all pulling for you.

    Best
    Greg
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #29
    NO TWO ARE ALIKE
    Remember, no two people or no two diagnoses are the same. When I was first diagnosed in August of 2010, my docs were pretty much like "get your affairs in order. I was stage 4 and after my second surgery I was rediagnosed stage 4B and I still beat this ****. I start chemo again tomorrow morning to combat a recurrance, and do not care what the statistics say, as my deal is just that, my deal.

    You stay strong, and your deal is just that, your deal.

    Praying for you brother.

    Best

    Mike

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