Foundation one testing... anyone heard of or tried it? Running out of options

lostsolost
lostsolost Member Posts: 21
in Colorectal Cancer #1

The last treatment i was on stopped working. My CEA went up to 100 and my scan shows slight increase in tumors. One in my lungs & one in a lymph node by my aorta. Idk but upset so i didn't ask many questions. Decided to go back to oxi with 5fu and adding in avastin. She had stopped oxi 3/17 because of the neuropathy. Hoping it does something good this time around. She also sent out to have the foundation one test done. She said its not usually covered because they have rarely found it useful. She said she doesn't want to get my hopes up. I just would love to be in remission. I won't even be selfish and ask for decades. I mean I'll take them lol. Hey at least closer to the age my mom was when she passed.. 57.

Has anyone had that testing done? Or gone back to a previous treatment? Or anything else out there that might help? Thank you 

Comments

  • sflgirl
    sflgirl Member Posts: 220 Member
    #2
    Foundation One

    The solid tumor test will reveal what mutations your cancer has.  It will explain how the mutations effect your cells/DNA.   The report will also suggest/ decline particular chemo based on the mutations I.e. KRAS.  Finally it will list out clinical trials having to do with your mutation.  Certainly read it carefully and go over the results with your Onc to discuss why you are or aren’t having a particular chemo and why what you are currently taking may or may not be effective.  It is realistic and sobering.

    My Blue Cross did cover it (less my deductible).

    Best Wishes.

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #3
    Hello lostsolost,
    I can share my highly positive experience, which may sound like miracle.
    In September 2016, my wife started being treated with FOLFOX and, as an option to fall back, I had to insist on the the Foundation One mutation study (covered here through my plan). By mid December it was clear that FOLFOX was not working, and, as her condition was deteriorating fast, we were told that there was no more treatment and to expect a few weeks. Even "they rarely found it useful", as the Foundation One result came out with a BRAF V600E mutation, she has been on a combination of BRAF and MEK inhibitors. Now, a little more than a year later, she is alive, clinically in very good condition, and leading relatively normal life.
    Apart from the mutation(s) found, when the Foundation One results are back, please look for and discussion with your oncologist the MSI/MSS status and tumor mutation burden as well, because they are good indicative of efficacy of immunotherapy.
    Best of luck.
  • Mikenh
    Mikenh Member Posts: 777 Member
    #4
    This seems like a standard

    This seems like a standard NextGen sequencing service and it's not part of the standard of care. At least it wasn't for me. I think that it may be helpful to know what your gene mutation is as there may be additional options for certain gene mutations. Most people don't know their mutations which I read as insurance doesn't cover it. I asked my oncologist about it and he kind of ignored the request.

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #5
    FDA Approval and Patient Assistance
    Foundation One CDx test received FDA approval recently. That might motivate more insurance companies to cover the cost. They have patient assistance program as well “to determine upfront what your maximum out-of-pocket expense might be”.
  • Mikenh
    Mikenh Member Posts: 777 Member
    #6
    Getting back to the original

    Getting back to the original question: I had Genomic Tumor Testing at Mass General Hospital this past summer and it identified my gene mutation (KRAS G12D). KRAS is the most common gene affected in CRC and KRAS G12D is the most common gene mutation for CRC. There is an Immunotherapy Trial at the National Cancer Institute for KRAS G12D (and G12V as well). In general my gene mutation isn't one of the aggressive ones. G12V and BRAF V600E are more aggressive and I think that Genomic Tumor testing should be done in case the patient has an aggressive gene mutation. What I've seen happen is someone with Stage 3 cancer go through treatment and then get Mets to other places. Genomic tumor testing is done and the doctor discovers that the patient has an aggressive mutation. If they knew that earlier, the treatment might have been different. NCI is working hard on trying to get Immunotherapy for a number of solid tumor gene mutations but it's going to take quite some time trying to find the right chemicals for each gene mutation.

    So your oncologist is right to a degree. I've seen cases where knowing the Gene Mutation has made the difference between life and death. I think that it doesn't matter for most CRC cases as the treatment will be the same. But it might matter for some. In the future, it will matter a lot more. You're getting the test done so you'll know and maybe it will be helpful or maybe not. It might also result in some potential trials for you.

Discussion Boards