Save Additional Samples of your Tumor Before chemo!

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Meggy
Meggy Member Posts: 530
Save Additional Samples of your Tumor Before chemo!

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  • Meggy
    Meggy Member Posts: 530
    edited March 2008

    None one tells us this but I am convinced that Triple Negatives MUST get extra core needle biopsies done before starting chemo so that we have enough tumor on hold to test us on whether new medical advances apply to us.  I did not do this (no one told me to and I just didn't think about it).  Now I am realizing my mistake.

    There is new research on the efficacy of cisplatin.  They believe it works when the particular tumor over expresses two proteins.  Only 20% or a bit more of us test that we do indeed over express these proteins.  Now I don't have enought tumor left to do a good test.

    Also, eventually they will come up with a drug that keeps the TN cancer from coming back.  My guess is that each discovery will work for about 25% of us and they need to test us.  (Since we all seem to be a little different)  If we have not had a recurrance, what will they test? They will want our old tumor samples.

    Get extra chunchs of tumor taken out before doing chemo!!!!!!!!!!!!!!!!!!!!!!  They can save it is wax (or maybe on ice)  I know there is new stuff coming for us. 

    We need to be ready to be included in future testing for new drugs if appropriate. 

    I've already done 3 a/c s and my tumor is shrinking.  Now I am going to try to get chunchs of the tumor BUT...I was told by a research nurse that the tumor may not be the same now....it seems half dead... 

    Dont wait too long like me!!!!!!!!!!  Insist! 

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Thanks, Meggy, point well taken. This is yet another reason why it's a good idea to participate in a clinical trial if a suitable one is available in one's area -- extra cores of the tumor are removed before treatment starts. Those chunks of tumor then are used in the lab to test the efficiency of different chemo drugs. One signs a release form allowing those tests to be run; hopefully better treatments will be discovered that way.

    I hope everyone is having a wonderful Sunday -- here's there's rain in the forecast.

    Love,

    Annie

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2008

    I've had so many recurrences (7 now!) that each cancer center (3 different ones) have been able to remove tumor and put it in a national database.  That last local research one I asked to store additional tumor just in case...

    At the rate I'm going they should put me in a lab, because I'm like a lab rat and they can keep testing on my new tumors.Frown

    Living in Hope

    Flalady

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