anyone with B-RAF mutation CRC? Seeking alternative cures..

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mnadeau
mnadeau Member Posts: 2
in Colorectal Cancer #1

Hi, over the past 18 months my sister has undergone 3 different chemo treatments for her Stage IV CRC. While some treatments have shown initial effectiveness, evenually that effectiveness declines.

She is ready to try new things - like Oreganol oil, Mushroom medicine, etc..Anyone have any input about this?

She has a rare form of CRC with a B-RAF mutated gene called V600....

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  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
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    Hello

    I a sorry to hear about your sister's diagnosis and continued tries with chemo regimes. 

    I personally can't help you with any advice concerning the oils and mushrooms. I hope soon, someone will pop by who can help you. 

    Although my stage is IV, I'm blessed to only have had one met, and so far, it has stayed as such. 

    During my treatment, I uesed guided imagery, meitation, music to heal. I should have used foods and essential oils, but I didn't. 

    There are so many avenues, not all medical. 

    I wish your sister well. 

    Here's hoping someone posts which can help. You are a loving sibling to visit here looking for ways to help your sister survive. 

    Tru

  • mnadeau
    mnadeau Member Posts: 2
    #3
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    Trubrit said:

    Hello

    I a sorry to hear about your sister's diagnosis and continued tries with chemo regimes. 

    I personally can't help you with any advice concerning the oils and mushrooms. I hope soon, someone will pop by who can help you. 

    Although my stage is IV, I'm blessed to only have had one met, and so far, it has stayed as such. 

    During my treatment, I uesed guided imagery, meitation, music to heal. I should have used foods and essential oils, but I didn't. 

    There are so many avenues, not all medical. 

    I wish your sister well. 

    Here's hoping someone posts which can help. You are a loving sibling to visit here looking for ways to help your sister survive. 

    Tru

    Thank you Tru
    - PT

    Thank you Tru

    - PT

  • coloCan
    coloCan Member Posts: 1,944 Member
    #4
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    Has she tried a new treatment

    called Vemurafenib?

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #5
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    Or Dabrafenib plus Trametinib?
    Sorry for being late. FOLFOX failed and almost killed my wife (54), diagnosed with an aggressive metastatic disease spread to liver, lungs, lymph nodes, and kidney, with unknown primary. Her liver biopsy showed BRAF V600E (hope that’s what you meant), and she has excellent response to BRAF plus MEK inhibitor (combo is known to reduce drug resistance) for 6 months and counting. Side effects are almost non-existent.
  • linnythepoo
    linnythepoo Member Posts: 2
    #6
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    MyJourneywithCancer said:

    Or Dabrafenib plus Trametinib?
    Sorry for being late. FOLFOX failed and almost killed my wife (54), diagnosed with an aggressive metastatic disease spread to liver, lungs, lymph nodes, and kidney, with unknown primary. Her liver biopsy showed BRAF V600E (hope that’s what you meant), and she has excellent response to BRAF plus MEK inhibitor (combo is known to reduce drug resistance) for 6 months and counting. Side effects are almost non-existent.

    Or Dabrafenib plus Trametinib?

    I have a BRAF V600E mutation from liver biopsy (primary on pancreas) and have been taking Dabrafenib and Trmetinib for 10 months. Had excellent shrinkage at first but it has slowed down. And now there is a new unknown growth that I had biopsied--still waiting for results. How is your wife doing now?

  • NHMike
    NHMike Member Posts: 213 Member
    #7
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    For those wondering about

    For those wondering about BRAF (I read this thread and it was scary), BRAF testing looks like it's covered by ImmunoHistoChemistry testing as well as MicroSatelliteInstability testing and anyone with Colon Cancer should have at least had the first test done. Their oncologist should have ordered the IHC test; the MSI test is a genetic test and it isn't necessarily done as I believe that it's more expensive and that the IHC test almost entirely covers four variant genes. I believe that the MSI test covers five genes (my son told me this yesterday). I believe that both tests cover 92% of the overall bad genes but not the same 92%.

  • linnythepoo
    linnythepoo Member Posts: 2
    edited August 2017 #8
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    NHMike said:

    For those wondering about

    For those wondering about BRAF (I read this thread and it was scary), BRAF testing looks like it's covered by ImmunoHistoChemistry testing as well as MicroSatelliteInstability testing and anyone with Colon Cancer should have at least had the first test done. Their oncologist should have ordered the IHC test; the MSI test is a genetic test and it isn't necessarily done as I believe that it's more expensive and that the IHC test almost entirely covers four variant genes. I believe that the MSI test covers five genes (my son told me this yesterday). I believe that both tests cover 92% of the overall bad genes but not the same 92%.

    For those wondering about

    Why is it scary? What's more scary than cancer?

  • NHMike
    NHMike Member Posts: 213 Member
    #9
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    linnythepoo said:

    For those wondering about

    Why is it scary? What's more scary than cancer?

    Taking chemo and radiation

    Taking chemo and radiation for a couple of weeks and then finding that it doesn't work on your cancer and then looking at alternatives sounds scary to me. Yes, what we already have is scary but finding out that there are cancers that don't respond to treatment is scarier. I had a chat with my son and he told me that he's done some work on the BRAF V600E stuff in the past so it's something well-known in the cancer research world.

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #10
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    linnythepoo said:

    Or Dabrafenib plus Trametinib?

    I have a BRAF V600E mutation from liver biopsy (primary on pancreas) and have been taking Dabrafenib and Trmetinib for 10 months. Had excellent shrinkage at first but it has slowed down. And now there is a new unknown growth that I had biopsied--still waiting for results. How is your wife doing now?

    Hello Linnythepoo
    Good to hear that your disease responded for 10 months, and your onco team is proactive in doing new biopsy on progression. Hopefully this will lead to new clue(s) as to how the drug resistance occurred, and identification of at least one new drugable target. Make sure they are doing another genomic profiling from the new biopsy sample to follow the tumor evolution. Secondly, microsatellite status should be included in the diagnostics, so be PD-L1 quantitation, in anticipation of possible immunotherapy. Thirdly, recent publications from Dr. Neyns' and other groups showed BRAFi+MEKi re-challenge is also an viable option with intervening drug 'holiday'.
    As for my wife, her liver enzymes started to show some upward trending, but her latest scan about a month ago showed a stable condition, and she is feeling excellent.
    Please keep in touch.
    Wish you all the best.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #11
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    I wouldn't over rely on

    I wouldn't over rely on alternative medical treatments as a standalone, but rather look for additive complementary components that improve treatment several ways - more chemo activity, better CBC, fewer side effects.   My wife's 5FU chemo simply doesn't work without enough  alternative "extras" - PSK, WGP, celecoxib, cimetidine, big vitamin D and IV C, flavonoids, etc.  She's had a great quality of life, by far the longest living of her doctors' patients for her mCRC condition.

    Some trackable blood markers we use beyond CEA are CA19-9, MCV, LDH for mutant cell lines.  Many Kras mutations involve HIF-1a, your sister's V600E involve HIF-2a that typically release more etitopes reactive with CA19-9 and LDH for more intense tissue stains and high blood values.  Also for practical reasons ESR, hsCRP and PT/INR may be helpful during treaments if not currently monitored.

     

  • coloCan
    coloCan Member Posts: 1,944 Member
    edited August 2017 #12
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    Something called Encorafenib is in early trial phase:

    www.cancerdiscovery.aacrjournals.org/content/7/6/610

    or

    www.medicalxpress.com/print415898642.html      on vemurafenib.

    There's also something called PLX8394

     

     

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