MRF-Logo2019-Horizontal-RGB
Husband Stage IV just starting GSK BRAF/MEK trial
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Husband Stage IV just starting GSK BRAF/MEK trial

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

  • Post
    • March 22, 2011 at 7:25 pm
    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

    Viewing 9 reply threads
    • Replies
        • March 22, 2011 at 7:54 pm
        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.

          • March 22, 2011 at 7:54 pm
          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.

            • March 24, 2011 at 11:14 am
            Fen
            Participant

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

              Fen

              • March 24, 2011 at 11:14 am
              Fen
              Participant

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

                Fen

                • March 24, 2011 at 11:10 pm
                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

                  • March 24, 2011 at 11:10 pm
                  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

                    • March 25, 2011 at 7:29 pm
                    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

                        • March 26, 2011 at 7:25 pm
                        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

                          • March 28, 2011 at 7:01 pm
                          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

                            • March 28, 2011 at 7:18 pm
                            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

                              • March 28, 2011 at 7:18 pm
                              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

                                • March 28, 2011 at 7:01 pm
                                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

                                  • March 26, 2011 at 7:25 pm
                                  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

                                    • March 26, 2011 at 7:25 pm
                                    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

                                      • March 26, 2011 at 7:25 pm
                                      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

                                      • March 25, 2011 at 7:29 pm
                                      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

                                        • March 26, 2011 at 3:21 pm
                                        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

                                          • March 26, 2011 at 3:21 pm
                                          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

                                        Viewing 9 reply threads
                                        • You must be logged in to reply to this topic.
                                        About the MRF Patient Forum

                                        The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                        The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                        Popular Topics