A life expectancy is given by MD Anderson

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. 

Comments

  • AnneO1965
    AnneO1965 Member Posts: 182 Member
    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: 783 Member
    Prayers Butt!

    Prayers Butt!

  • NewHere
    NewHere Member Posts: 1,427 Member
    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
    Sorry

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

    Kim

  • po18guy
    po18guy Member Posts: 1,461 Member
    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
    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
    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
    Post removed, sorry.

    Post removed.

    Elainehd

     

     

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

    Post removed, sorry.

    Post removed.

    Elainehd

     

     

    Post removed.

    Smile