Thoughts About the term "Exceptional Survivor"

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  • susan3
    susan3 Member Posts: 3,728
    edited May 2016

    best bird...interesting. Something I have thought about. Was dx 15 years ago. This September will be 5 years at stage IV. I have 1 bad week a month at treatment time. Other than that, yeah I am slower, I used to be the energizer bunny all the time. Not so much anymore. But if you saw me...you would have no idea what my dx is. I feel very blessed. Still walk a marathon every year. Just one a year...but that's great. I am very blessed with my life. I know of people that went on like me...then poof it was over. No suffering, just fell off the cliff one day and went quickly. I kinda feel that will be me, cause I tolerate chemo pretty well. When we run out of them that might be the end of the line. Who knows. Interesting study. I have asked my onc about this, he is very big in patient advocacy ...he just shrugs his shoulders. We are all so different. Once we are " outside" the box, they can just guess.

  • Bestbird
    Bestbird Member Posts: 2,818
    edited May 2016

    Thank you so much for offering your thoughts, observations, and suggestions about this topic! The question was raised on three online mbc forums, and the results, which will be shared with the MBCA, are provided below.

    1. Results of responses received from three mbc online forums re: the "Exceptional Survivors" poll:

    A total of 29 measurable responses were received (there were considerably more posts on the topic due to the level of interest).

    17 (59%) respondents liked the term "Exceptional Survivor"

    7 (24%) did not favor the term

    5 (17%) were neutral

    There was a bit of brainstorming on the topic, during which the following terms were raised:

    Atypical Survivors
    Extended Survivors
    Extraordinary Survivors
    Long-term Outliers
    Long-term Patients
    Noteworthy Survivors
    Post-Prognosis Survivors
    Statistics Beaters
    Super (or Supra) Survivors

    There may be more to come... thank you again!

  • lulubee
    lulubee Member Posts: 1,493
    edited May 2016

    Bestbird, I am late to the party, but wanted to say that my oncologist, in her notes, classifies me as an "Extreme Responder to Therapy."

    Yesterday she said "exceptional responder" so I think she goes back and forth.

    I see the problems with "responder" in terms of those who are not on treatment, but it could also mean responder to the disease process.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2016

    Beyond-prognosis survivors (rather than post-prognosis), I think.

  • stagefree
    stagefree Member Posts: 2,780
    edited May 2016

    I am happy with whatever they name me as long as I am able to keep posting here.. :)))

    Joke aside, great thread Anne! I prefer the Extended Responder..

    Even people without cancer don't survive forever, I always think of the term absurd.. Well that's me

    I receive lots of articles on the surrounding conditions & psychological status & economical factors.. İn alliance with therapy that may have positive / negative effect on the treatment.. I should admit, I spend more time selling stuff and watching Star Wars episodes 1233456743334556778th time with DS than anything else.. Just last week met a friend who said he was sorry for my recent stay at the hospital, to which I responded why? İt was a great holiday.. That proves economic status gets a definite check as the surrounding was more of a 5-star hotel than a typical hospital ...

    Hugs

    Ebru

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited June 2016

    From the current issue of Cure Magazine - link follows


    Learning From the Best: On Patients Who Respond Well to Cancer Treatment

    Scientists are studying exceptional responders, who benefit from cancer therapies when others don't, to learn how to duplicate those results in broader groups of patients.

    ERIK NESS

    PUBLISHED: MAY 13, 2016

    excerpt:

    Understanding what makes patients exceptional responders is ridiculously complicated: A single tumor cell can contain thousands of mutations, most of which have little meaning. But somewhere in this mad scramble hides a clue — or a series of clues — which explains how the cancer runs amok. In the case of exceptional responders, there are additional clues that should explain why a particular drug works. Beyond looking at gene mutations and the problems they cause, scientists can consider changes in tumor proteins that are not associated with genetic alterations, or not easily mapped to a long list of mutations.

    "Can we find a reason why these patients should be responding better than others?" asks Conley. "That's the whole crux of what we're doing." The study of exceptional responders is new, but there are a handful of studies recruiting. Adera Labs is looking to better understand the response of patients with pancreatic cancer to standard chemotherapy by comparing the genomes of exceptional responders to those of patients who respond less robustly. And the Breast International Group is considering the mechanisms of either response or resistance to systemic therapy for metastatic breast cancer, with a search for biomarkers in exceptional responders part of the effort.

    The NCI began its foray into exceptional responders by delving into its own archives. While there are many stories of people unexpectedly outliving their diagnoses, the scientists were looking for more than just a happy ending: They wanted to see a response to some kind of drug. "It has to be a complete response where we would expect to see a complete response less than 10 percent of the time," Conley explains. "Or it has to be a partial response, where either a partial response lasting at least six months is seen less than 10 percent of the time, or where the response lasted three times as long as has been reported in the literature."

    That's not eight out of 154, but eight so far. There is a lot of work yet to be done, followed by further study in the lab and in trials. How long before these discoveries begin to influence standard treatments? "It could be a while," warns Conley.

    Sure, something really big could happen, such as the discovery of driver mutations that override less consequential genetic changes. But the breakthroughs are more likely to be incremental. "Many of us think that the more that we do this, the more we can find," she says. And it's a very young science. "We're not going to get good at it immediately."
    - See more at: http://www.curetoday.com/publications/cure/2016/sp...

    See more at: http://www.curetoday.com/publications/cure/2016/sp...

  • cive
    cive Member Posts: 709
    edited June 2016

    doesn't change the fact that both positive and negative responders are outliers......

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