A life expectancy is given by MD Anderson

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Butt
Butt Member Posts: 352 Member

The MD Anderson fave me a life expectancy because I asked for that. It doesn't  look nice. A story of a relatively young healthy adult who had 3 colonoscopies with 2 different docs and a scan that missed the first liver met over a year prior to diagnoses. Sure, they are not God and when mire information arrives tgey can start to go more or less accurately in a certain direction. The local oncologist is good, MD Anderson was visited as well as Sloan Kettering. 2 docs in Germany and Russia were contacted as well. They did it based on more arriving test results and a speed of a decease progression. Of course it is not in any way the exact correct statement but it doesn't  look good either way and there if course may be  sone deviation. Butt. 

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  • AnneO1965
    AnneO1965 Member Posts: 182 Member
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    Oh Butt, I'm so sorry..  I

    Oh Butt, I'm so sorry..  I can't even begin to say I know how you are feeling or what you are going through, however I do of course, understand. My thoughts are with you, as well as my prayers.

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
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    Prayers Butt!

    Prayers Butt!

  • NewHere
    NewHere Member Posts: 1,427 Member
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    Sorry

    Sorry for this Butt.  My docs do not give me timelines.  But when I talk to them, I tell them what I am pretty sure of at this point, barring some break somewhere.  They do not say I am wrong or being negative because I lay it out pretty well and after 5 years, I sort of get the writing on the wall.  Right now I am going full Hail Mary on things, other than the real bat s--t crazy things.  Low risk high reward.  I have a scan in about 4 weeks.  Will see if it works.  

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Sorry

    Sorry it is not better news.  My Prayers are said constantly for people on this board. 

    Kim

  • po18guy
    po18guy Member Posts: 1,475 Member
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    We form our own survival curves!

    I offer the following for perspective. Started with a rare and aggressive non-Hodgkin's T-Cell Lymphoma (PTCL-NOS) at stage IV with "innumerable" tumors - the patholigist stopped counting at 50. Poor prognosis. Relapse with 6 months of treatment, assuming you survive through treatment, drops the prognosis to "extremely poor." I relapsed immediately, which gave me a 3 month median survival. Went into clinical trial and back in full response. Relapsed again, when no prognosis could be given. This time, the lymphoma had mutated into two sub-types (including AITL), only one of which would respond to treatment. I had 4 PET/CT scans in a row which allstated "Disease Progression." At the same time, from age and treatment, I developed the precursor to Acute Myeloid Leukemia: Myelodysplastic Syndrome (MDS), which took over 26% of my marrow. The lymphoma had defeated 12 drugs and I now had three simultaneous cancers, essentially Stage IV times 3.

    Providentially, I had a brilliant hematologist at a research facility. He devised a new combination of three older drugs, which eradicated all three cancers in only two cycles. I went on to a stem cell transplant and now have no evidence of cancer. It was 11 years ago now that I had a 3 month average survival. This July, doctor and I will toast 12 years together. Sure beats three months.

    To paraphrase Yogi Berra, "It ain't over until it's over."  

  • Tueffel
    Tueffel Member Posts: 327 Member
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    Friends father

    A very dear friend of mine has a father with Kaposi sarcoma. Doctors gave them 6 months to live. That was 8 years ago. There is still hope. Doctors dont know everything. They are human people and prone to mistakes. Just keep fighting and live each day to the fullest 

  • myAZmountain
    myAZmountain Member Posts: 417 Member
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    po18guy said:

    We form our own survival curves!

    I offer the following for perspective. Started with a rare and aggressive non-Hodgkin's T-Cell Lymphoma (PTCL-NOS) at stage IV with "innumerable" tumors - the patholigist stopped counting at 50. Poor prognosis. Relapse with 6 months of treatment, assuming you survive through treatment, drops the prognosis to "extremely poor." I relapsed immediately, which gave me a 3 month median survival. Went into clinical trial and back in full response. Relapsed again, when no prognosis could be given. This time, the lymphoma had mutated into two sub-types (including AITL), only one of which would respond to treatment. I had 4 PET/CT scans in a row which allstated "Disease Progression." At the same time, from age and treatment, I developed the precursor to Acute Myeloid Leukemia: Myelodysplastic Syndrome (MDS), which took over 26% of my marrow. The lymphoma had defeated 12 drugs and I now had three simultaneous cancers, essentially Stage IV times 3.

    Providentially, I had a brilliant hematologist at a research facility. He devised a new combination of three older drugs, which eradicated all three cancers in only two cycles. I went on to a stem cell transplant and now have no evidence of cancer. It was 11 years ago now that I had a 3 month average survival. This July, doctor and I will toast 12 years together. Sure beats three months.

    To paraphrase Yogi Berra, "It ain't over until it's over."  

    What were the 3 drugs?

    There is a book out called How to Starve cancer where she beat her cancer using Metformin, Persantine and Statin--were any of these used in your case?

  • elainehd
    elainehd Member Posts: 9
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    Post removed, sorry.

    Post removed.

    Elainehd

     

     

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
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    elainehd said:

    Post removed, sorry.

    Post removed.

    Elainehd

     

     

    Post removed.

    Smile