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Eric got into Braf & MEK trial at Nashville!

Forums General Melanoma Community Eric got into Braf & MEK trial at Nashville!

  • Post
    EricNJill
    Participant

      I can't tell you have happy I am that Eric got into the GSK BRAF Inhibitor and MEK combination trial!  They said he got the last opening.  He won't begin for a couple of weeks but it's just a huge relief knowing he got in.  He has a brain MRI on Thursday to make sure that his brain is still clear after the craniotomy.  I asked them about the hospice palliative care he is receiving and they said there was no problems.

      I can't tell you have happy I am that Eric got into the GSK BRAF Inhibitor and MEK combination trial!  They said he got the last opening.  He won't begin for a couple of weeks but it's just a huge relief knowing he got in.  He has a brain MRI on Thursday to make sure that his brain is still clear after the craniotomy.  I asked them about the hospice palliative care he is receiving and they said there was no problems.

      He took his last pill of Temodar (2nd round) on Sunday.  His leg looks horrible.  He has new tumors and the existing tumors are bigger so that makes it even more joyous that he got in.  I hate to think about every day that goes by with Melanoma raging on!

      I know there are others here on this trial, can you tell me about your experiences.

      Thanks, JillNEric In OH

    Viewing 27 reply threads
    • Replies
        Sherron
        Participant

          Jill, this is wonderful news for you and Eric.  I am very happy for you…I will continue to think and pray for you daily.

          Wishing and hoping for the best for both of you.

          Take Care,

          Sherron, wife to Jim FOREVER

          Sherron
          Participant

            Jill, this is wonderful news for you and Eric.  I am very happy for you…I will continue to think and pray for you daily.

            Wishing and hoping for the best for both of you.

            Take Care,

            Sherron, wife to Jim FOREVER

            killmel
            Participant

              SOOO HAppy for you both. What a relief!

              I am very interested in the MEK/Braf combo trial too.

              Any info the doc /study nurse gave you about this trial (like what are the side effects, how effective has these comb drugs been working on their patients thus far on this trial, etc).

              Thank you for any info you might have.

              I pray for you both & keep the faith, miracles do happen.

              Douglas

              killmel
              Participant

                SOOO HAppy for you both. What a relief!

                I am very interested in the MEK/Braf combo trial too.

                Any info the doc /study nurse gave you about this trial (like what are the side effects, how effective has these comb drugs been working on their patients thus far on this trial, etc).

                Thank you for any info you might have.

                I pray for you both & keep the faith, miracles do happen.

                Douglas

                killmel
                Participant

                  SOOO HAppy for you both. What a relief!

                  I am very interested in the MEK/Braf combo trial too.

                  Any info the doc /study nurse gave you about this trial (like what are the side effects, how effective has these comb drugs been working on their patients thus far on this trial, etc).

                  Thank you for any info you might have.

                  I pray for you both & keep the faith, miracles do happen.

                  Douglas

                  killmel
                  Participant

                    SOOO HAppy for you both. What a relief!

                    I am very interested in the MEK/Braf combo trial too.

                    Any info the doc /study nurse gave you about this trial (like what are the side effects, how effective has these comb drugs been working on their patients thus far on this trial, etc).

                    Thank you for any info you might have.

                    I pray for you both & keep the faith, miracles do happen.

                    Douglas

                      EricNJill
                      Participant

                        Douglas,

                        They really didn't get into the effectiveness of the two drugs in combination, but I've read good things about it.  She did say that the most common side effects are diarrhea and a bad rash.  They also said that they are seeing squamous cell cancers pop up on patients that are on the MEK drug as well as fluid build up behind the retina that causes blurred vision.  So before he starts the trial he has to be evaluated by a Dermatologist and an Ophthalmologist and checked routinely. 

                        Of course the clinical trial material name many other side-effects but I guess these are the ones they are most concerned about. 

                        In comparison to IL-2 these side effects are nothing! 

                        JillNEric IN OH

                        EricNJill
                        Participant

                          Douglas,

                          They really didn't get into the effectiveness of the two drugs in combination, but I've read good things about it.  She did say that the most common side effects are diarrhea and a bad rash.  They also said that they are seeing squamous cell cancers pop up on patients that are on the MEK drug as well as fluid build up behind the retina that causes blurred vision.  So before he starts the trial he has to be evaluated by a Dermatologist and an Ophthalmologist and checked routinely. 

                          Of course the clinical trial material name many other side-effects but I guess these are the ones they are most concerned about. 

                          In comparison to IL-2 these side effects are nothing! 

                          JillNEric IN OH

                        Vermont_Donna
                        Participant

                          GREAT news!!!! I am so happy for you both! What courage you both have and hope……..never give up! I look at the pictures of Erics leg and it puts my leg tumors in such perspective. Hang in there, the waiting for things to start is hard.

                          Hugs,

                          Vermont_Donna

                          stage 3a

                          Vermont_Donna
                          Participant

                            GREAT news!!!! I am so happy for you both! What courage you both have and hope……..never give up! I look at the pictures of Erics leg and it puts my leg tumors in such perspective. Hang in there, the waiting for things to start is hard.

                            Hugs,

                            Vermont_Donna

                            stage 3a

                            Linda J
                            Participant
                              Hurray – that’s awesome! I start the Braf/Mek combo trial on the 19th. I’ve got a busy week of scans, blood work, heart tests, eye exams etc.
                              It makes me feel good knowing that these two drugs on their own have helped people. I don’t feel as much as a guinea pig that way!
                              My nurse has said that of the different types of cancer patients who are on this trial, the melanoma patients seem to be having the best results – hurray!!!!
                              All the best!
                              Linda J
                                killmel
                                Participant

                                  Hi linda,

                                  What side effects did the study nurse tell you patients have been getting on this MEK/BRAk combo trial?? Did you get any yet and how are you mananging the,M

                                  Thanks

                                  Jan

                                  Linda J
                                  Participant
                                    Hi,
                                    She said the most common thing she is seeing is a rash that seems to present on the face, she said it was similar to acne (great!). She said it seems to come and go in waves.
                                    Another person on the board, emilypen, her husband had been on this trial for several months so she would have more Info about side effects.
                                    Linda J
                                    Linda J
                                    Participant
                                      Hi,
                                      She said the most common thing she is seeing is a rash that seems to present on the face, she said it was similar to acne (great!). She said it seems to come and go in waves.
                                      Another person on the board, emilypen, her husband had been on this trial for several months so she would have more Info about side effects.
                                      Linda J
                                      killmel
                                      Participant

                                        Hi linda,

                                        What side effects did the study nurse tell you patients have been getting on this MEK/BRAk combo trial?? Did you get any yet and how are you mananging the,M

                                        Thanks

                                        Jan

                                      Linda J
                                      Participant
                                        Hurray – that’s awesome! I start the Braf/Mek combo trial on the 19th. I’ve got a busy week of scans, blood work, heart tests, eye exams etc.
                                        It makes me feel good knowing that these two drugs on their own have helped people. I don’t feel as much as a guinea pig that way!
                                        My nurse has said that of the different types of cancer patients who are on this trial, the melanoma patients seem to be having the best results – hurray!!!!
                                        All the best!
                                        Linda J
                                        JuleFL
                                        Participant
                                          I am so happy to hear this, Jill. Best wishes for Eric’s success in this trial. Keep us posted.
                                          Jule
                                          JuleFL
                                          Participant
                                            I am so happy to hear this, Jill. Best wishes for Eric’s success in this trial. Keep us posted.
                                            Jule
                                            jag
                                            Participant

                                              That is great news that Eric got into the trial Jill, I will say a prayer that his MRI will be negative and he gets the medication.

                                              Best
                                              John 

                                              jag
                                              Participant

                                                That is great news that Eric got into the trial Jill, I will say a prayer that his MRI will be negative and he gets the medication.

                                                Best
                                                John 

                                                LynnLuc
                                                Participant

                                                  Awesome news!!! Blessings for the trial!!

                                                  LynnLuc
                                                  Participant

                                                    Awesome news!!! Blessings for the trial!!

                                                    Lori C
                                                    Participant

                                                      That is excellent news – and may this be exactly what Eric needs.  I am especially glad that they are not negative towards the hospice option you had chosen; I think it is wonderful to get that kind of support when someone is unwell but you  shouldn't have to reject future viable treatments because of it. 

                                                      Best to both of you!

                                                      Lori C
                                                      Participant

                                                        That is excellent news – and may this be exactly what Eric needs.  I am especially glad that they are not negative towards the hospice option you had chosen; I think it is wonderful to get that kind of support when someone is unwell but you  shouldn't have to reject future viable treatments because of it. 

                                                        Best to both of you!

                                                        MaryD
                                                        Participant

                                                          That is such great news Jill – I'm so happy for you and Eric.   He is an amazing fighter and he is so lucky to have you for support.   This is the cutting edge trial to be in and I will be praying hard that it beats back this awful disease.

                                                          Sending good thoughts for a clear MRI and wishing Eric good luck!

                                                           

                                                          Mary

                                                          MaryD
                                                          Participant

                                                            That is such great news Jill – I'm so happy for you and Eric.   He is an amazing fighter and he is so lucky to have you for support.   This is the cutting edge trial to be in and I will be praying hard that it beats back this awful disease.

                                                            Sending good thoughts for a clear MRI and wishing Eric good luck!

                                                             

                                                            Mary

                                                            yensidw
                                                            Participant

                                                              Very good news!  I used to work for GSK and am happy that their drug is helping some people.  Ppraying that this will be the answer for Eric.

                                                               

                                                              Janis 

                                                              yensidw
                                                              Participant

                                                                Very good news!  I used to work for GSK and am happy that their drug is helping some people.  Ppraying that this will be the answer for Eric.

                                                                 

                                                                Janis 

                                                                tennisgirl
                                                                Participant

                                                                  Jill:  Since I have been reading your posts, I think about you and Eric often.  I too hope to get on this trial in February.    Please continue with the updates.  Keep on keeping on! 

                                                                  tennisgirl
                                                                  Participant

                                                                    Jill:  Since I have been reading your posts, I think about you and Eric often.  I too hope to get on this trial in February.    Please continue with the updates.  Keep on keeping on! 

                                                                    Wife of Carl
                                                                    Participant

                                                                      Jill,

                                                                      Great news that Eric got a slot on the trial!  My husband is on a MEK trial at SCRI in Nashville, with Dr. Infante.  He gets the same MEK drug that Eric will get.  So far, he is doing great.  He began to see results a few weeks after starting the drug.  He did get the rash about two weeks after starting but it is manageable….better than melanoma!!!  He gets diarrhea and he does get fatigued sometimes, but these things do not stop him from doing almost everything that he wants to.  I hope that this trial will be the same miracle for Eric as it has been for my husband.

                                                                      Pat

                                                                      Wife of Carl
                                                                      Participant

                                                                        Jill,

                                                                        Great news that Eric got a slot on the trial!  My husband is on a MEK trial at SCRI in Nashville, with Dr. Infante.  He gets the same MEK drug that Eric will get.  So far, he is doing great.  He began to see results a few weeks after starting the drug.  He did get the rash about two weeks after starting but it is manageable….better than melanoma!!!  He gets diarrhea and he does get fatigued sometimes, but these things do not stop him from doing almost everything that he wants to.  I hope that this trial will be the same miracle for Eric as it has been for my husband.

                                                                        Pat

                                                                        Rocklove
                                                                        Participant

                                                                          Such Great News for You and Jack. I have no experience wih the combo trial but do know Jack is so lucky. I tested BRAF Negative, so doubtful if the combo is a choice for me. I heard there have been a lot of positive results from the test.

                                                                          Praying for You Two and Family and so are so many others.

                                                                          Rocky (Stage IV Liver Mets)

                                                                          Rocklove
                                                                          Participant

                                                                            Such Great News for You and Jack. I have no experience wih the combo trial but do know Jack is so lucky. I tested BRAF Negative, so doubtful if the combo is a choice for me. I heard there have been a lot of positive results from the test.

                                                                            Praying for You Two and Family and so are so many others.

                                                                            Rocky (Stage IV Liver Mets)

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