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Husband Stage IV just starting GSK BRAF/MEK trial

Forums General Melanoma Community Husband Stage IV just starting GSK BRAF/MEK trial

  • Post
    mommydog
    Participant

      My husband was diagnosed with stage VI metastatic melanoma in early February.  He has mets on his lungs, spine and liver.  After much screening he started a clinical trial yesterday at UCSF with BRAF and MEK.  For the MEK dosage he was "randomized" to receive the highest dosage allowed in the study. The doctor told us that he believes my husband is getting the best possible treatment for a horrible diagnosis.  Would anyone else like to share info/experiences with this trial? Thanks.

      Deborah

      My husband was diagnosed with stage VI metastatic melanoma in early February.  He has mets on his lungs, spine and liver.  After much screening he started a clinical trial yesterday at UCSF with BRAF and MEK.  For the MEK dosage he was "randomized" to receive the highest dosage allowed in the study. The doctor told us that he believes my husband is getting the best possible treatment for a horrible diagnosis.  Would anyone else like to share info/experiences with this trial? Thanks.

      Deborah

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    • Replies
        jim Breitfeller
        Participant

          Deborah,

          I am in contact with some patients that are on this trial.

          If you are a responder, you will see it in the first Scan taken. The BRAF and MEK inhibitor blocks the growth and survival of the cancer cells. It usually takes place in the first 2 -4 weeks of the therapy depending on the tumor burden.

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          jim Breitfeller
          Participant

            Deborah,

            I am in contact with some patients that are on this trial.

            If you are a responder, you will see it in the first Scan taken. The BRAF and MEK inhibitor blocks the growth and survival of the cancer cells. It usually takes place in the first 2 -4 weeks of the therapy depending on the tumor burden.

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            Fen
            Participant

              Don't know about the trial, Deborah, but hoping for a strong response.  Please post when you get results.

              Fen

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              Fen
              Participant

                Don't know about the trial, Deborah, but hoping for a strong response.  Please post when you get results.

                Fen

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                EricNJill
                Participant

                  Hi Deborah,

                  My husband showed response very early.  He has quite a few tumors that are external on the skin so we were able to see changes very quickly.  I've posted some pictures on our blog at http://melanomasucks.blogspot.com/2011/02/thank-god-for-unanswered-prayers.html

                  I'll warn you, they are graphic.  His leg is remarkably better than our latest picture.   Eric has had fever and a facial rash with this trial.  Nothing worth complaining about.  We can't believe the difference in his leg.  It's as if he's getting his life back!  Good Luck to you and your husband.  Feel free to contact me on Facebook or email at [email protected].  You can find me on facebook using my email.

                  Jill

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                  EricNJill
                  Participant

                    Hi Deborah,

                    My husband showed response very early.  He has quite a few tumors that are external on the skin so we were able to see changes very quickly.  I've posted some pictures on our blog at http://melanomasucks.blogspot.com/2011/02/thank-god-for-unanswered-prayers.html

                    I'll warn you, they are graphic.  His leg is remarkably better than our latest picture.   Eric has had fever and a facial rash with this trial.  Nothing worth complaining about.  We can't believe the difference in his leg.  It's as if he's getting his life back!  Good Luck to you and your husband.  Feel free to contact me on Facebook or email at [email protected].  You can find me on facebook using my email.

                    Jill

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                    WendyR3
                    Participant

                      Hi Deborah,

                      I emailed you on Cancer Survivors Network, but this board seems to be more active.  My husband also has Stage IV melanoma.  We went to UCSF in November 2010 for the BRAF trial, but he was BRAF negative.  We tried 3 months of Temodar, but it didn't work.  So now we're back at UCSF for the other trial, Axitinib with Carbo/Paxol.  Just started this week, so we'll keep our fingers crossed.  We live in San Jose, so it's a lot of schlepping back and forth, but it's worth it.  Good luck to you!

                      Wendy

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                      WendyR3
                      Participant

                        Hi Deborah,

                        I emailed you on Cancer Survivors Network, but this board seems to be more active.  My husband also has Stage IV melanoma.  We went to UCSF in November 2010 for the BRAF trial, but he was BRAF negative.  We tried 3 months of Temodar, but it didn't work.  So now we're back at UCSF for the other trial, Axitinib with Carbo/Paxol.  Just started this week, so we'll keep our fingers crossed.  We live in San Jose, so it's a lot of schlepping back and forth, but it's worth it.  Good luck to you!

                        Wendy

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                          mommydog
                          Participant

                            Wendy,

                            We live in Sacramento, and I understand the shlepping. The Axitinub/Carbo/Paxol would have been the trial my husband would have started had he not been BRAF positive.

                            Have you looked into any melanoma support groups or anything like that?  I think I could use it.

                            Good luck to you and your husband.

                            Deborah

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                            WendyR3
                            Participant

                              Thanks for the response.  Sacramento?!  Now I don't feel so badly, coming from San Jose!  I haven't found any local Melanoma Support Groups, although there's a general cancer support agency in Mountain View and Walnut Creek, that has been very helpful.  It's Cancer Support Community.  Maybe there's one near you.  Still searching the web for on-line support like this! 

                              Take care,

                              Wendy

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                              Carol Taylor
                              Participant

                                Wendy and anyone else who may be interested,

                                I started the Melanoma Prayer Center fb page recently:

                                http://www.facebook.com/pages/Melanoma-Prayer-Center/136617429740982

                                You don't have to "like" the page to use it. It may not be quite the "online support" you're thinking about, but I envision growing this as a place for more spiritual support for fellow melanoma patients, survivors, family, friends, care givers, and medical teams.  All ideas are welcomed.

                                This isn't intended to be a shameless plug, but to let people know this developing resource exists.  All the best to you.

                                Carol

                                stage 3b

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                                Carol Taylor
                                Participant

                                  Wendy and anyone else who may be interested,

                                  I started the Melanoma Prayer Center fb page recently:

                                  http://www.facebook.com/pages/Melanoma-Prayer-Center/136617429740982

                                  You don't have to "like" the page to use it. It may not be quite the "online support" you're thinking about, but I envision growing this as a place for more spiritual support for fellow melanoma patients, survivors, family, friends, care givers, and medical teams.  All ideas are welcomed.

                                  This isn't intended to be a shameless plug, but to let people know this developing resource exists.  All the best to you.

                                  Carol

                                  stage 3b

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                                  WendyR3
                                  Participant

                                    Thanks for the response.  Sacramento?!  Now I don't feel so badly, coming from San Jose!  I haven't found any local Melanoma Support Groups, although there's a general cancer support agency in Mountain View and Walnut Creek, that has been very helpful.  It's Cancer Support Community.  Maybe there's one near you.  Still searching the web for on-line support like this! 

                                    Take care,

                                    Wendy

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                                    mommydog
                                    Participant

                                      Wendy,

                                      We live in Sacramento, and I understand the shlepping. The Axitinub/Carbo/Paxol would have been the trial my husband would have started had he not been BRAF positive.

                                      Have you looked into any melanoma support groups or anything like that?  I think I could use it.

                                      Good luck to you and your husband.

                                      Deborah

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                                      mommydog
                                      Participant

                                        Wendy,

                                        We live in Sacramento, and I understand the shlepping. The Axitinub/Carbo/Paxol would have been the trial my husband would have started had he not been BRAF positive.

                                        Have you looked into any melanoma support groups or anything like that?  I think I could use it.

                                        Good luck to you and your husband.

                                        Deborah

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                                        mommydog
                                        Participant

                                          Wendy,

                                          We live in Sacramento, and I understand the shlepping. The Axitinub/Carbo/Paxol would have been the trial my husband would have started had he not been BRAF positive.

                                          Have you looked into any melanoma support groups or anything like that?  I think I could use it.

                                          Good luck to you and your husband.

                                          Deborah

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                                        fanfan
                                        Participant

                                          Hi Deborah,

                                          My father has a similar stage melanoma and has just finished chemo. However he is very weak.

                                          If he gets stronger, perhaps the braf and mek treatment could work. Do you know if it is available just at the UCSF hospital. Do you have contacts there?

                                          Thanks for your help

                                          Best

                                          Francois

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                                          fanfan
                                          Participant

                                            Hi Deborah,

                                            My father has a similar stage melanoma and has just finished chemo. However he is very weak.

                                            If he gets stronger, perhaps the braf and mek treatment could work. Do you know if it is available just at the UCSF hospital. Do you have contacts there?

                                            Thanks for your help

                                            Best

                                            Francois

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