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Tested negative for BRAF and KIT….now what?

Forums General Melanoma Community Tested negative for BRAF and KIT….now what?

  • Post
    deirgey
    Participant

      My father has tested negative for the most common gene mutations, BRAF and KIT.  We were hoping for one of these b/c we were under the assumption that there are more treatment options available with either of the 2.  He has Melanoma in his spine, liver and lungs.  It took about 4 weeks for the tests to come back and we finally got them today.  His doctor recommended he start treatment next week with Abraxine (chemo drug) and Avastin b/c we don't know the gene mutation but he needs treatment ASAP.   Just looking for advice, comments, sugg

      My father has tested negative for the most common gene mutations, BRAF and KIT.  We were hoping for one of these b/c we were under the assumption that there are more treatment options available with either of the 2.  He has Melanoma in his spine, liver and lungs.  It took about 4 weeks for the tests to come back and we finally got them today.  His doctor recommended he start treatment next week with Abraxine (chemo drug) and Avastin b/c we don't know the gene mutation but he needs treatment ASAP.   Just looking for advice, comments, suggestions?  Anybody else in a similar situation? 

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    • Replies
        lhaley
        Participant

          You were sending your dads path slides to MDAnderson for a second opinon. When is his appointment?  If you tell what treatments your dad has already had it might help someone to give you suggestions. 

          I am really not in a position to advise treatments but I believe that there are MEK trials where you don't have to have the  B-raf mutation.

          Wishing you the best,

          Linda

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          lhaley
          Participant

            You were sending your dads path slides to MDAnderson for a second opinon. When is his appointment?  If you tell what treatments your dad has already had it might help someone to give you suggestions. 

            I am really not in a position to advise treatments but I believe that there are MEK trials where you don't have to have the  B-raf mutation.

            Wishing you the best,

            Linda

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              deirgey
              Participant

                Hi Linda, thank you for the reply.  My dad has had radiation on T1 and T6 of his spine.  His is also taking a bone treatment drug called Denosumab b/c he does have spots in his bones as well.  That bone treatment is not supposed to elminate him from any trials or anything.  He does have an initial appointment at MDA next week on Wednesday but he is supposed to make a decision by Monday…. so we do have phone consulations into some other places for tomorrow which is good.  I will look into the MEK trial option.  Thanks for the suggestion.  I appreciate any advice at this point :)

                 

                Deidre

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                deirgey
                Participant

                  Hi Linda, thank you for the reply.  My dad has had radiation on T1 and T6 of his spine.  His is also taking a bone treatment drug called Denosumab b/c he does have spots in his bones as well.  That bone treatment is not supposed to elminate him from any trials or anything.  He does have an initial appointment at MDA next week on Wednesday but he is supposed to make a decision by Monday…. so we do have phone consulations into some other places for tomorrow which is good.  I will look into the MEK trial option.  Thanks for the suggestion.  I appreciate any advice at this point :)

                   

                  Deidre

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                LynnLuc
                Participant

                  My opinion is that the HLA type is more defining for a lot of trials…is he HLA 2? I haven't even been tested yet for B raf or C-Kit  but what they wanted to know was what HLA I had and what phenotype the melanoma cells had…

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                  LynnLuc
                  Participant

                    My opinion is that the HLA type is more defining for a lot of trials…is he HLA 2? I haven't even been tested yet for B raf or C-Kit  but what they wanted to know was what HLA I had and what phenotype the melanoma cells had…

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                      deirgey
                      Participant

                        I don't think he's been tested for HLA.  That is good to hear that there could be other options out there just maybe not at his center?  He is in Tucson AZ.  We'll look into this.  Thanks Lynn

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                        deirgey
                        Participant

                          I don't think he's been tested for HLA.  That is good to hear that there could be other options out there just maybe not at his center?  He is in Tucson AZ.  We'll look into this.  Thanks Lynn

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                        Jim in Denver
                        Participant

                          Hi Deidre,

                          Is the Doc who is pushing for a decision Monday actuallya melanoma specialist?  He sounds like a regular Oncologist from what you describe.  Try to research for youself about Abraxane and Avastin as individual treatments for mel – neither look to be highly effective, so it is not likely that they will show synergy when combined.  Avastin has been back in the news again this week, but not in a positive way.  I am also surprised the the genetic testing took 4 weeks – most melanoma centers have in house labs that can turn them around in days.  The Doc should be willing to give you another week or so that your Father can decide what HE wants to do and not be rushed into this very important decision – don't you think?.  Your Father definitely benefit from a second opinion at MDA – who will you be seeing there?  Ask about the MDX-1106 and MDX-1105 Trials, they would be very good choices if they are available and he is eligible.  The 1105 may reopen soon and some patients, like Lynn, have had very good results with the 1106 combo.  

                          Having had experience with MDA, I can tell you there may be no place better you can go for melanoma.  You and your Father should ask lots of questions including about availablet clinical trials.  Generally, most Docs will discuss trials that are not being conducted at their hospitals, and/or ones that they themselves are not conducting, so you usually won't get the entire picture at any one hospital.   Stay calm, learn what you can and keep learning along the way, and choose what you think is the best course of action.  It is a difficult time right now, but it will get better when you have a plan that makes sense to you.  Hope this response helps a little.  Best wishes to you both.

                          Best,

                          Jim

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                          Jim in Denver
                          Participant

                            Hi Deidre,

                            Is the Doc who is pushing for a decision Monday actuallya melanoma specialist?  He sounds like a regular Oncologist from what you describe.  Try to research for youself about Abraxane and Avastin as individual treatments for mel – neither look to be highly effective, so it is not likely that they will show synergy when combined.  Avastin has been back in the news again this week, but not in a positive way.  I am also surprised the the genetic testing took 4 weeks – most melanoma centers have in house labs that can turn them around in days.  The Doc should be willing to give you another week or so that your Father can decide what HE wants to do and not be rushed into this very important decision – don't you think?.  Your Father definitely benefit from a second opinion at MDA – who will you be seeing there?  Ask about the MDX-1106 and MDX-1105 Trials, they would be very good choices if they are available and he is eligible.  The 1105 may reopen soon and some patients, like Lynn, have had very good results with the 1106 combo.  

                            Having had experience with MDA, I can tell you there may be no place better you can go for melanoma.  You and your Father should ask lots of questions including about availablet clinical trials.  Generally, most Docs will discuss trials that are not being conducted at their hospitals, and/or ones that they themselves are not conducting, so you usually won't get the entire picture at any one hospital.   Stay calm, learn what you can and keep learning along the way, and choose what you think is the best course of action.  It is a difficult time right now, but it will get better when you have a plan that makes sense to you.  Hope this response helps a little.  Best wishes to you both.

                            Best,

                            Jim

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                              deirgey
                              Participant

                                I was looking at Avastin today and they were going to pull it b/c it wasn't doing anything for breast cancer patients.  I did see it had poor results.  I know I couldn't believe the 4 weeks but I didn't know if that was normal or not.  I think b/c the test results took so long to come back and b/c my dad had to wait 28 days after radiation to start any trial treatment, that he probably does need to start something very soon…but I agree with you that he has to be comfortable with it.  He is not at the moment.  He is getting an MRI (for his back surgery) and a scan tomorrow.  We don't know the rate of growth yet either.  We are looking forward to the MD Anderson visit especially now.  Thank you for the advice on the MDX trials…will look into them.  I just read all of these posts to him and I think they will help him sleep a little bit better than he would have :)  Appreciate it. 

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                                deirgey
                                Participant

                                  I was looking at Avastin today and they were going to pull it b/c it wasn't doing anything for breast cancer patients.  I did see it had poor results.  I know I couldn't believe the 4 weeks but I didn't know if that was normal or not.  I think b/c the test results took so long to come back and b/c my dad had to wait 28 days after radiation to start any trial treatment, that he probably does need to start something very soon…but I agree with you that he has to be comfortable with it.  He is not at the moment.  He is getting an MRI (for his back surgery) and a scan tomorrow.  We don't know the rate of growth yet either.  We are looking forward to the MD Anderson visit especially now.  Thank you for the advice on the MDX trials…will look into them.  I just read all of these posts to him and I think they will help him sleep a little bit better than he would have :)  Appreciate it. 

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                                sharmon
                                Participant
                                  When you are at MDA and there is a specific trial you want, you must be your own advocate. If your told (closed or not avaliable), ask to talk to the clinical trial cordinator to see if you could find another location or get on a waiting list. The doctor will only offer what he has available at that moment. He needs to fill slots.? It is your life. As for us wanted a MEK trial and it took us a week but we got, on.

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                                  sharmon
                                  Participant
                                    When you are at MDA and there is a specific trial you want, you must be your own advocate. If your told (closed or not avaliable), ask to talk to the clinical trial cordinator to see if you could find another location or get on a waiting list. The doctor will only offer what he has available at that moment. He needs to fill slots.? It is your life. As for us wanted a MEK trial and it took us a week but we got, on.

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                                    sharmon
                                    Participant
                                      When you are at MDA and there is a specific trial you want, you must be your own advocate. If your told (closed or not avaliable), ask to talk to the clinical trial cordinator to see if you could find another location or get on a waiting list. The doctor will only offer what he has available at that moment. He needs to fill slots.? It is your life. As for us wanted a MEK trial and it took us a week but we got, on.

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                                      sharmon
                                      Participant
                                        When you are at MDA and there is a specific trial you want, you must be your own advocate. If your told (closed or not avaliable), ask to talk to the clinical trial cordinator to see if you could find another location or get on a waiting list. The doctor will only offer what he has available at that moment. He needs to fill slots.? It is your life. As for us wanted a MEK trial and it took us a week but we got, on.

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