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B-RAF

  • Post
    dawn dion
    Participant

      Good Morning All,

      Good Morning All,

      Okay I am very new to this whole thing, as I have said before, and I am CONFUSED!!!!!  Can some please explain the whole B-RAF positive thing to me.   I tested B-RAF positive, and frankly I am unsure of which route I want to take.   When my Dr. and I where discussing options and believe me it was breif she never once mention chemo to me, yet in the posts you all are talking about a chemo arm.   Did I miss something?   Please help me understand this.  My understanding is that Melenoma doesn't respond to chemo.  Again I am so CONFUSED!!!!

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        EricNJill
        Participant

          I'm no expert but I do have some experience with this since my husband has been battling Melanoma for more than 2 years now.  He is BRAF positive, but we chose to do other therapies first before trying a BRAF targeted therapy.  Here are the treatments he did:

          * High Dose Interferon – 5 days a week for 4 weeks (ERIC WAS STAGE 3)
          * Low Dose Interferon – 3 days a week for 8 months (8 MONTHS IN TO THIS TMT ERIC PROGRESSED TO STAGE 4)
          * Clinical Trial – Carboplatin, Avastin, and Abraxane (CANCER PROGRESSED DURING TMT)
          * Interluekin 2 – 44 doses over 4 wks of treatment (CANCER PROGRESSED)
          * Dendric Cell Vaccine (CANCER PROGRESSED)
          * Intralymphatic Vaccine (CANCER PROGRESSED)
          * Gamma Knife Radiation in the Brain (TO REMOVED MICROSCOPIC CELLS AFTER BRAIN SURGERY)
          * Temodar (CANCER PROGRESSED)
          * GSK BRAF & GSK MEK Inhibitor (CANCER IS NOW SHRINKING!!!)

          So as you can see Eric has done many types of therapies and nothing worked until he started a BRAF therapy.  Eric's Melanoma has been very aggressive.  He has over 100 tumors in his right leg, tumors around his heart, tumors in the right armpit lymph nodes, and some spots in his lungs.  He had a 3 CM brain tumor in November that was removed and he had Gamma Knife Radiation.  He no longer has that tumor.

          So many people ask us why didn't Eric start a BRAF treatment right away.  There are a couple of different reasons.  1. When we first found out Eric was BRAF positive there weren't any trails open.  2.  When trials were open for BRAF, the oncologists wanted him to try the Vaccine therapies because they thought he was a good candidate for them since at that time the disease was limited to his leg.  3. We were scared for him to do BRAF because we were seeing that the disease regression was only temporary and that the cancer came back after several months and it came back very aggressively.  We felt since Eric's cancer wasn't in a major organ we thought it wasn't a life threatening issue, but we were wrong.  When Eric failed the Vaccine treatments his leg was overcome with cancer it was so bad.  The Oncologist was alarmed and said we needed to get into a BRAF treatment immediately.  We set up an appointment to go to Tennessee to get on BRAF and a week before starting the treatment the cancer spread to Eric's brain and we were disqualified for the treatment.

          So here is my opinion and only my opinion…just because your cancer isn't in a major organ (I don't know if yours is or not I'm just stating in general) it doesn't mean that it can't travel to one in days.  I'm not sure that the other treatments work well on BRAF positive patients.  I know that they didn't even slow Eric's cancer down.  Going through all that suffering was awful for Eric but we had to go through it to know if it would work.  With the BRAF/MEK trial Eric is on right now we are seeing a HUGE difference in just weeks.  Some of Eric's tumors have disappeared.

          If you have specific questions you'd like to ask me, please feel free to contact me on Facebook (Jill Robbins Sizemore) or you can email me at [email protected].  You can also see the changes on Eric's leg at http://www.melanomasucks.blogspot.com

          It's never an easy decision to make, but you are doing the right thing by asking questions and getting informed.

          Good Luck to you!  JillNEric In OH

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          EricNJill
          Participant

            I'm no expert but I do have some experience with this since my husband has been battling Melanoma for more than 2 years now.  He is BRAF positive, but we chose to do other therapies first before trying a BRAF targeted therapy.  Here are the treatments he did:

            * High Dose Interferon – 5 days a week for 4 weeks (ERIC WAS STAGE 3)
            * Low Dose Interferon – 3 days a week for 8 months (8 MONTHS IN TO THIS TMT ERIC PROGRESSED TO STAGE 4)
            * Clinical Trial – Carboplatin, Avastin, and Abraxane (CANCER PROGRESSED DURING TMT)
            * Interluekin 2 – 44 doses over 4 wks of treatment (CANCER PROGRESSED)
            * Dendric Cell Vaccine (CANCER PROGRESSED)
            * Intralymphatic Vaccine (CANCER PROGRESSED)
            * Gamma Knife Radiation in the Brain (TO REMOVED MICROSCOPIC CELLS AFTER BRAIN SURGERY)
            * Temodar (CANCER PROGRESSED)
            * GSK BRAF & GSK MEK Inhibitor (CANCER IS NOW SHRINKING!!!)

            So as you can see Eric has done many types of therapies and nothing worked until he started a BRAF therapy.  Eric's Melanoma has been very aggressive.  He has over 100 tumors in his right leg, tumors around his heart, tumors in the right armpit lymph nodes, and some spots in his lungs.  He had a 3 CM brain tumor in November that was removed and he had Gamma Knife Radiation.  He no longer has that tumor.

            So many people ask us why didn't Eric start a BRAF treatment right away.  There are a couple of different reasons.  1. When we first found out Eric was BRAF positive there weren't any trails open.  2.  When trials were open for BRAF, the oncologists wanted him to try the Vaccine therapies because they thought he was a good candidate for them since at that time the disease was limited to his leg.  3. We were scared for him to do BRAF because we were seeing that the disease regression was only temporary and that the cancer came back after several months and it came back very aggressively.  We felt since Eric's cancer wasn't in a major organ we thought it wasn't a life threatening issue, but we were wrong.  When Eric failed the Vaccine treatments his leg was overcome with cancer it was so bad.  The Oncologist was alarmed and said we needed to get into a BRAF treatment immediately.  We set up an appointment to go to Tennessee to get on BRAF and a week before starting the treatment the cancer spread to Eric's brain and we were disqualified for the treatment.

            So here is my opinion and only my opinion…just because your cancer isn't in a major organ (I don't know if yours is or not I'm just stating in general) it doesn't mean that it can't travel to one in days.  I'm not sure that the other treatments work well on BRAF positive patients.  I know that they didn't even slow Eric's cancer down.  Going through all that suffering was awful for Eric but we had to go through it to know if it would work.  With the BRAF/MEK trial Eric is on right now we are seeing a HUGE difference in just weeks.  Some of Eric's tumors have disappeared.

            If you have specific questions you'd like to ask me, please feel free to contact me on Facebook (Jill Robbins Sizemore) or you can email me at [email protected].  You can also see the changes on Eric's leg at http://www.melanomasucks.blogspot.com

            It's never an easy decision to make, but you are doing the right thing by asking questions and getting informed.

            Good Luck to you!  JillNEric In OH

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            MichaelFL
            Participant

              On some clinical trials, a new drug may be tested against another that already been approved for treatment and has results to compare against the new drug. On other trials, what is called a placebo may also sometimes be used, and on others just the drug named in the trial is used to determine such things as complete (CR) or partial response rates (PR) or to measure such things as disease progression, or unacceptable adverse event of the drug.

              As an example, melanoma patients may be randomized in what is called a arm, with PLX4032 being in one arm and perhaps a drug called dacarbazine (DTIC), a comparator drug approved for the treatment of metastatic melanoma in another arm. These two will be compared to one another in the trial.

              Here is a good page you may wish to check out called understanding clinical trials: http://clinicaltrials.gov/ct2/info/understand

              Here is also a list of BRAF trials at http://clinicaltrials.gov/ct2/results?term=braf+melanoma you may wish to check out. Some of the trials have different arms and this may help you to understand better too.

              Hope this helps some.

              Best wishes,

              Michael

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              MichaelFL
              Participant

                On some clinical trials, a new drug may be tested against another that already been approved for treatment and has results to compare against the new drug. On other trials, what is called a placebo may also sometimes be used, and on others just the drug named in the trial is used to determine such things as complete (CR) or partial response rates (PR) or to measure such things as disease progression, or unacceptable adverse event of the drug.

                As an example, melanoma patients may be randomized in what is called a arm, with PLX4032 being in one arm and perhaps a drug called dacarbazine (DTIC), a comparator drug approved for the treatment of metastatic melanoma in another arm. These two will be compared to one another in the trial.

                Here is a good page you may wish to check out called understanding clinical trials: http://clinicaltrials.gov/ct2/info/understand

                Here is also a list of BRAF trials at http://clinicaltrials.gov/ct2/results?term=braf+melanoma you may wish to check out. Some of the trials have different arms and this may help you to understand better too.

                Hope this helps some.

                Best wishes,

                Michael

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                LynnLuc
                Participant

                  At Moffitt that usually refer to Immunotherapy as using biologicals…as opposed to calling it chemotherapy…while it is drugs/chemicals it is different from the conventional chemotherapy used previously and in a lot of other cancers…did she use the word immunotherapy of B-raf inhibitors?

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                    dawn dion
                    Participant

                      Well that is interesting to know –  She really hasn't told me alot about it .  I am trying to get her to call me next week before I go back down there.  Maybe my clinical trail nurse could answer the question.   I have heard Immunotherapy quite a bit but not biologicals.   Thanks for the info.   I will be sure to use the terminology.   Are you at Moffitt?

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                      dawn dion
                      Participant

                        Well that is interesting to know –  She really hasn't told me alot about it .  I am trying to get her to call me next week before I go back down there.  Maybe my clinical trail nurse could answer the question.   I have heard Immunotherapy quite a bit but not biologicals.   Thanks for the info.   I will be sure to use the terminology.   Are you at Moffitt?

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                      LynnLuc
                      Participant

                        At Moffitt that usually refer to Immunotherapy as using biologicals…as opposed to calling it chemotherapy…while it is drugs/chemicals it is different from the conventional chemotherapy used previously and in a lot of other cancers…did she use the word immunotherapy of B-raf inhibitors?

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