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update after test results

Forums General Melanoma Community update after test results

  • Post
    amybusby
    Participant

      A mixed bag, as usual.  The leptomeningial mets (around the brain) are stable, maybe even somewhat better.  I had no problems with WBR or with the temodar.  No idea yet if my spinal fluid is still clear or not, we'll check that next week when I go in for another intrathecial IL2 dose in my head port.

      A mixed bag, as usual.  The leptomeningial mets (around the brain) are stable, maybe even somewhat better.  I had no problems with WBR or with the temodar.  No idea yet if my spinal fluid is still clear or not, we'll check that next week when I go in for another intrathecial IL2 dose in my head port.

      It's been a long time since I last had the GSK BRAF inhibitor (end of May), so we've been expecting at some point  that the effects would wear off.  I've had some growth in the subq system, and the lymph nodes, but the main problem is the growth of bone mets.  I think all were there previously but now are growing & compromising the bones more.  I have a pretty substantial right femer met that's come on strong recently in terms of pain, so I knew something was wrong there.  It's going to need immediate attention.  So the plan is to try for the next few days to get my hands on some BRAF inhib. drug somehow.  I am open to all suggestions, companies, trials, compassionate use plans, inside information, etc.

      Assuming we can't do that (a fairly likely assumption) Dr. Papa recommends radiation for the femer & a couple of spinal mets.  The spinal ones aren't hurting yet but as long as we're there….  (radiation would go along again with another round of radiation).

      I'm going on Thursday for an infusion of Zometa – anyone done that?  Anything I should watch out for?  (to try to build bone density)

      So it's discouraging of course.  It torments Dennis to know there is something out there is practically assured of controlling my systemic disease now that we have the CNS disease stable.  My quick and almost complete response should make me a terrific candidate for other cohorts of the BRAF trials that allow CNS disease, or for compassionate use – you'd think.  But then again we all know rational, reasonable thought processes have zero to do with FDA procedures and / or drug manufacturer business decisions.

      So right now I am focusing on staying off my leg and making sure there are no bone breaks im future.  We all know how great I am about letting others do stuff for me (and letting them do it their own way!) so this should be fun.  But I have agreed to do my best. 

      Love,

      Amy

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    • Replies
        lhaley
        Participant

          Amy,

          How frustrating!!  I totally agree with Dennis that there should be someway to get you back on the GSK drug.  Maybe your Drs. could make a plea to the drug company of what type of information they could gleam from following you. They know you respond!! 

          You did get a mixed report. As usual you find the good in all that is given to you. Your Dr seems to be a great advocate for you and hopefully they will be able to find a way for you to get back on the drugs that have been helping. 

          Sending hugs,

          Linda

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          lhaley
          Participant

            Amy,

            How frustrating!!  I totally agree with Dennis that there should be someway to get you back on the GSK drug.  Maybe your Drs. could make a plea to the drug company of what type of information they could gleam from following you. They know you respond!! 

            You did get a mixed report. As usual you find the good in all that is given to you. Your Dr seems to be a great advocate for you and hopefully they will be able to find a way for you to get back on the drugs that have been helping. 

            Sending hugs,

            Linda

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            washoegal
            Participant

              Amy, wish I had some bight idea..you are amazing.  Still a wonderful sense of humor.  I'm not sure I would still have that.  But I supose it makes it a alot easier than complaining about everything.  Anyway, keep searching the net, somewhere, somehow, you may come up with a compassionate use on the BRAF.  Keep pressure on the company, hell I'd even work with your local politicians to see if they would start putting pressure on the manufacturer too.  Use the squeeky wheel theory, it works a lot of the time.

              Keep up the attitide girl.  It'll keep you going.

               

              Mary

              Stage 3

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              washoegal
              Participant

                Amy, wish I had some bight idea..you are amazing.  Still a wonderful sense of humor.  I'm not sure I would still have that.  But I supose it makes it a alot easier than complaining about everything.  Anyway, keep searching the net, somewhere, somehow, you may come up with a compassionate use on the BRAF.  Keep pressure on the company, hell I'd even work with your local politicians to see if they would start putting pressure on the manufacturer too.  Use the squeeky wheel theory, it works a lot of the time.

                Keep up the attitide girl.  It'll keep you going.

                 

                Mary

                Stage 3

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                King
                Participant

                  Amy,

                   

                  No answers but I am sending you a huge hug and prayers.  You are so courageous…truly a remarkable woman.  And, yes, it's an order that you sit back and let others do things their way….I know your way is better but that will have to wait.

                   

                  Stay Strong
                  King

                  Stage IV  7/05 Liver mets

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                  King
                  Participant

                    Amy,

                     

                    No answers but I am sending you a huge hug and prayers.  You are so courageous…truly a remarkable woman.  And, yes, it's an order that you sit back and let others do things their way….I know your way is better but that will have to wait.

                     

                    Stay Strong
                    King

                    Stage IV  7/05 Liver mets

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                    jag
                    Participant

                      Amy, I am happy to hear that you are holding steady.  I will say a prayer that you get access to the BRAF drugs and that your CNS troubles will resolve completelyl.  Good luck with the Zometa, definitely let everybody take care of you and enjoy the pain medssmiley

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                      jag
                      Participant

                        Amy, I am happy to hear that you are holding steady.  I will say a prayer that you get access to the BRAF drugs and that your CNS troubles will resolve completelyl.  Good luck with the Zometa, definitely let everybody take care of you and enjoy the pain medssmiley

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                        Wife of Carl
                        Participant

                          Amy,

                          I know that this mixed response is always discouraging.  Carl is currently participating in a MEK trial in Nashville.  This trial allows patients previously treated with a B-RAF inhibitor.  It is a GSK trial.  The NCT number is NCT01037127.  It allows previous brain mets.  You may want to look at this trial.  I don't know if this is helpful to you but I thought that I would mention it and let you take a look for yourself.   I do not know the current status of this trial, but they had previously offered it at  MDA.  I do know that they are planning to open Phase 3 soon, but do not know much more than that.  Carl has had a wonderful response to this trial.  He started seeing results within a few weeks, as many B-RAF patients do.  He had his second set of scans, (sinnce starting the trial) on September 2.  The chest subq continues to shrink and we were told that the lung mets are now small enough that they cannot be measured on the scans…we feel blessed.

                          I am sorry that you are going through this and I think of you often.  You are truly a courageous warrior and an inspiration to many on this board.  I hope that this information will help you.

                          Pat

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                          Wife of Carl
                          Participant

                            Amy,

                            I know that this mixed response is always discouraging.  Carl is currently participating in a MEK trial in Nashville.  This trial allows patients previously treated with a B-RAF inhibitor.  It is a GSK trial.  The NCT number is NCT01037127.  It allows previous brain mets.  You may want to look at this trial.  I don't know if this is helpful to you but I thought that I would mention it and let you take a look for yourself.   I do not know the current status of this trial, but they had previously offered it at  MDA.  I do know that they are planning to open Phase 3 soon, but do not know much more than that.  Carl has had a wonderful response to this trial.  He started seeing results within a few weeks, as many B-RAF patients do.  He had his second set of scans, (sinnce starting the trial) on September 2.  The chest subq continues to shrink and we were told that the lung mets are now small enough that they cannot be measured on the scans…we feel blessed.

                            I am sorry that you are going through this and I think of you often.  You are truly a courageous warrior and an inspiration to many on this board.  I hope that this information will help you.

                            Pat

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                            MaryD
                            Participant

                              Hi Amy,

                              Well,  i don't doubt for one minute that you and Dennis will move a few mountains to track down a trial and of course your MPIP family will be on the case too!

                              It's so hard not to be discouraged while riding the ups and downs of this big roller coaster but your tenacity and faith will help you navigate this difficult path.  And yes, now's the time to delegate…and enjoy some pampering  :) :).

                              Sending lots of love and prayers always ..

                              Mary

                               

                               

                               

                               

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                              MaryD
                              Participant

                                Hi Amy,

                                Well,  i don't doubt for one minute that you and Dennis will move a few mountains to track down a trial and of course your MPIP family will be on the case too!

                                It's so hard not to be discouraged while riding the ups and downs of this big roller coaster but your tenacity and faith will help you navigate this difficult path.  And yes, now's the time to delegate…and enjoy some pampering  :) :).

                                Sending lots of love and prayers always ..

                                Mary

                                 

                                 

                                 

                                 

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                                Kevin from Atlanta
                                Participant

                                  " We all know how great I am about letting others do stuff for me (and letting them do it their own way!) so this should be fun"

                                  Me being a male everything I did was incorrect anyway. So if my wife does everything it is done correctly.

                                   

                                  I sure wish you could catch a break from the beast.

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                                  Kevin from Atlanta
                                  Participant

                                    " We all know how great I am about letting others do stuff for me (and letting them do it their own way!) so this should be fun"

                                    Me being a male everything I did was incorrect anyway. So if my wife does everything it is done correctly.

                                     

                                    I sure wish you could catch a break from the beast.

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                                    Amy I don't have any information for you but wanted to let you know that you are in my thougths and prayers.  You are an inspriation for me.   Your spirit feeds me.  

                                    Please take care of yourself and let others do for YOU.

                                    With love and prayers,

                                    Shelly in SW

                                    stage IV

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                                      Vermont_Donna
                                      Participant

                                        Hi Amy,

                                         So good to hear from you, I have been wondering about how you were doing. Best of luck with the next steps, and please REST, a broken bone would not be good!

                                        Hugs,

                                        Vermont_Donna

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                                        Vermont_Donna
                                        Participant

                                          Hi Amy,

                                           So good to hear from you, I have been wondering about how you were doing. Best of luck with the next steps, and please REST, a broken bone would not be good!

                                          Hugs,

                                          Vermont_Donna

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                                        Amy I don't have any information for you but wanted to let you know that you are in my thougths and prayers.  You are an inspriation for me.   Your spirit feeds me.  

                                        Please take care of yourself and let others do for YOU.

                                        With love and prayers,

                                        Shelly in SW

                                        stage IV

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                                        Bonnie Lea
                                        Participant

                                          Dear Amy

                                           

                                          well, my brother (prostate cancer) dealt with the tumors on his femur (had a few breaks then surgery to pin it with a titanian pin and his other leg done to prevent a breakage.  He was put on Zometa and no more breaks occured.  Zometa was one of the bone density builders they want me on, due to finding out I have lumbar osteoporosis which stopped  the doctors from using some drug for the BC problem after my bilateral.  Still have not gone that route. 

                                          You are a strong woman, and I can see you in your TEEEEENY TINY SELF running the ship from your bed, or reclining chair, and everyone doing what they can do for you with LOVE.

                                          Hope things proceed in your own requested orderly fashion, and know we all love you to bits.

                                           

                                          Bonnie Lea

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                                          Bonnie Lea
                                          Participant

                                            Dear Amy

                                             

                                            well, my brother (prostate cancer) dealt with the tumors on his femur (had a few breaks then surgery to pin it with a titanian pin and his other leg done to prevent a breakage.  He was put on Zometa and no more breaks occured.  Zometa was one of the bone density builders they want me on, due to finding out I have lumbar osteoporosis which stopped  the doctors from using some drug for the BC problem after my bilateral.  Still have not gone that route. 

                                            You are a strong woman, and I can see you in your TEEEEENY TINY SELF running the ship from your bed, or reclining chair, and everyone doing what they can do for you with LOVE.

                                            Hope things proceed in your own requested orderly fashion, and know we all love you to bits.

                                             

                                            Bonnie Lea

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                                            Lori C
                                            Participant

                                              Amy, first healing prayers for you continue.

                                              This is just a suggestion and I'd probably check with your doctor first.  But when I first started my fight with BMS over ipi for Will, I contacted my state's attorney general and they were very interested in helping.  Unfortunately, Will's doctor was not supportive – he was most worried about getting into trouble with BMS and losing access to future trials.

                                              If you feel that you cannot get access to the drugs you need through the established channels, I'd present your case to your local congressperson and your state's attorney general.  They may be more helpful than you'd anticipate. 

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                                              Lori C
                                              Participant

                                                Amy, first healing prayers for you continue.

                                                This is just a suggestion and I'd probably check with your doctor first.  But when I first started my fight with BMS over ipi for Will, I contacted my state's attorney general and they were very interested in helping.  Unfortunately, Will's doctor was not supportive – he was most worried about getting into trouble with BMS and losing access to future trials.

                                                If you feel that you cannot get access to the drugs you need through the established channels, I'd present your case to your local congressperson and your state's attorney general.  They may be more helpful than you'd anticipate. 

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                                                Lori C
                                                Participant

                                                  Also, Will is on Zometa.  (he got the first IV dose 2 weeks ago).  He has bone mets also.  No breaks yet.  He's had a few bouts of nausea and I don't know if that's from the cancer, the zometa, or the chemo – how can you tell?  But that's the only new side effect I've seen since he started Zometa. 

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                                                  Lori C
                                                  Participant

                                                    Also, Will is on Zometa.  (he got the first IV dose 2 weeks ago).  He has bone mets also.  No breaks yet.  He's had a few bouts of nausea and I don't know if that's from the cancer, the zometa, or the chemo – how can you tell?  But that's the only new side effect I've seen since he started Zometa. 

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                                                    Sharyn
                                                    Participant

                                                      Hi Amy,

                                                      As usual, you are the eternal fighter and optimist. You are such an inspiration to us all! I do hope the radiation works on your bone mets, and that you do find a BRAF treatment to get you back on track. Sorry, I'm a bit out of the BRAF scene, as I don't have that mutation, so I have no advice to offer you. All I have is my continual support, prayers, positive vibes, pixie dust — whatever it takes to get this beast reined in again. Good luck, and thanks for the update.

                                                      Hugs

                                                      Sharyn

                                                      Stage IV (Starting Ipi next week)

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                                                      Sharyn
                                                      Participant

                                                        Hi Amy,

                                                        As usual, you are the eternal fighter and optimist. You are such an inspiration to us all! I do hope the radiation works on your bone mets, and that you do find a BRAF treatment to get you back on track. Sorry, I'm a bit out of the BRAF scene, as I don't have that mutation, so I have no advice to offer you. All I have is my continual support, prayers, positive vibes, pixie dust — whatever it takes to get this beast reined in again. Good luck, and thanks for the update.

                                                        Hugs

                                                        Sharyn

                                                        Stage IV (Starting Ipi next week)

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                                                        molly
                                                        Participant

                                                          Amy, 

                                                          I will be praying for you to get your hands on the BRAF drug immediately. It is just insane that you are having trouble getting it…..

                                                          molly

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                                                          molly
                                                          Participant

                                                            Amy, 

                                                            I will be praying for you to get your hands on the BRAF drug immediately. It is just insane that you are having trouble getting it…..

                                                            molly

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                                                            JenM
                                                            Participant
                                                              Hi Amy,
                                                              How about the drug Nexavar/Sorafenib? It is one of the early BRAF inhibitors that was developed years back. My doc calls it the “poor man’s” inhibitor. I believe it also has some anti angiogenesis tumor blood vessel properties.

                                                              I tested BRAF positive as well but was not eligible for the BRAF trial that I was considering because I developed brain mets. My med onc has someone on Nexavar for over a year now with stable disease. So we are currently giving that a try. Major complaint-nausea & vomiting.

                                                              From what I have learned from others on this board Nexavar trials for melanoma were stopped during phase 3 b/c they failed to be working for a lot of people but it did work for some. It is currently approved for kidney and liver cancer. You would have to get it off label. My insurance first said no but my doc appealed the decision and I was approved for 6 months.

                                                              Of course, getting the actual BRAF inhibitor that worked for you would be the ideal situation. Have you heard of CTEP? Cancer Therapy Evaluation Program. I have heard they can be instrumental in getting access to research drugs on a case by case basis. It must be physician driven and he/she makes the application on your behalf and then it is sent to CTEP who will appeal to the drug company for approval/permission for your doctor to treat just you. I really don’t know all the rules and regulations. It could be that it’s just for research drugs that are really close to approval (like ipi) and not for something like your BRAF inhibitor which is still very much in phase III trials.

                                                              Sorry if I have gone on and on. I’m sure your doctor or research nurse will know right off the bat whether CTEP is an appropriate option.

                                                              Good luck Amy and I will be praying for you.

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                                                              JenM
                                                              Participant
                                                                Hi Amy,
                                                                How about the drug Nexavar/Sorafenib? It is one of the early BRAF inhibitors that was developed years back. My doc calls it the “poor man’s” inhibitor. I believe it also has some anti angiogenesis tumor blood vessel properties.

                                                                I tested BRAF positive as well but was not eligible for the BRAF trial that I was considering because I developed brain mets. My med onc has someone on Nexavar for over a year now with stable disease. So we are currently giving that a try. Major complaint-nausea & vomiting.

                                                                From what I have learned from others on this board Nexavar trials for melanoma were stopped during phase 3 b/c they failed to be working for a lot of people but it did work for some. It is currently approved for kidney and liver cancer. You would have to get it off label. My insurance first said no but my doc appealed the decision and I was approved for 6 months.

                                                                Of course, getting the actual BRAF inhibitor that worked for you would be the ideal situation. Have you heard of CTEP? Cancer Therapy Evaluation Program. I have heard they can be instrumental in getting access to research drugs on a case by case basis. It must be physician driven and he/she makes the application on your behalf and then it is sent to CTEP who will appeal to the drug company for approval/permission for your doctor to treat just you. I really don’t know all the rules and regulations. It could be that it’s just for research drugs that are really close to approval (like ipi) and not for something like your BRAF inhibitor which is still very much in phase III trials.

                                                                Sorry if I have gone on and on. I’m sure your doctor or research nurse will know right off the bat whether CTEP is an appropriate option.

                                                                Good luck Amy and I will be praying for you.

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                                                                Dear Amy,

                                                                I wish you the very best in finding more of the BRAF inhibitor.  You must, must be able to get it!  I agree with everyone else. There must be a way.  You have been so brave and successful.  I hope your doctors will help you fight for this!

                                                                Best wishes,

                                                                ellen – dads daughter

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                                                                Dear Amy,

                                                                I wish you the very best in finding more of the BRAF inhibitor.  You must, must be able to get it!  I agree with everyone else. There must be a way.  You have been so brave and successful.  I hope your doctors will help you fight for this!

                                                                Best wishes,

                                                                ellen – dads daughter

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                                                                Dear Amy,

                                                                I wish you the very best in finding more of the BRAF inhibitor.  You must, must be able to get it!  I agree with everyone else. There must be a way.  You have been so brave and successful.  I hope your doctors will help you fight for this!

                                                                Best wishes,

                                                                ellen – dads daughter

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                                                                Dear Amy,

                                                                I wish you the very best in finding more of the BRAF inhibitor.  You must, must be able to get it!  I agree with everyone else. There must be a way.  You have been so brave and successful.  I hope your doctors will help you fight for this!

                                                                Best wishes,

                                                                ellen – dads daughter

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                                                                NancyD
                                                                Participant

                                                                  Amy,

                                                                  As always, you are in my prayers.  I wish there was a way that the FDA would let you do whatever you want, not what they want.  How can it be?  No answer there but please know that I think of you often and pray for you and your family.

                                                                  Nancy D

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                                                                  NancyD
                                                                  Participant

                                                                    Amy,

                                                                    As always, you are in my prayers.  I wish there was a way that the FDA would let you do whatever you want, not what they want.  How can it be?  No answer there but please know that I think of you often and pray for you and your family.

                                                                    Nancy D

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                                                                    Jocelyn
                                                                    Participant

                                                                      There must  surely be some response to the  need for compassionate use. You are not alone in this; there must be others in a similar situation who responded well to the drug but had to discontinue it due to another situation needing attention. MDX was available for compassionate use years before it became ipi, years before it was anywhere near FDA approval. Braf trials are moving along at a rapid rate, and it should qualify as one of those treatments that has a very positive future, just like Ipi long before it reached its current status. . My hope for you is that there is a growing demand for compassionate use and it becomes available to you thru that channel. If not, there must be some way for you to get into another trial. I am not certain, but many of them do not require that the patient be free of any CNS involvement, so long as their situation is stable, and it sounds like yours is. Best of luck to you. You are a great warrior, and I keep you in my thoughts and prayers.  

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                                                                      Jocelyn
                                                                      Participant

                                                                        There must  surely be some response to the  need for compassionate use. You are not alone in this; there must be others in a similar situation who responded well to the drug but had to discontinue it due to another situation needing attention. MDX was available for compassionate use years before it became ipi, years before it was anywhere near FDA approval. Braf trials are moving along at a rapid rate, and it should qualify as one of those treatments that has a very positive future, just like Ipi long before it reached its current status. . My hope for you is that there is a growing demand for compassionate use and it becomes available to you thru that channel. If not, there must be some way for you to get into another trial. I am not certain, but many of them do not require that the patient be free of any CNS involvement, so long as their situation is stable, and it sounds like yours is. Best of luck to you. You are a great warrior, and I keep you in my thoughts and prayers.  

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                                                                        killmel
                                                                        Participant

                                                                          Hi Amy,

                                                                           

                                                                          I am new to the board so I do not understand why you cannot go back on GSK Braf….or maybe GSK MEk.

                                                                           

                                                                          I hope that you find the drug you neeedit seems you have come alone way to give up the fight now.

                                                                           

                                                                          God Bless you & your family for what you are going thrrouhg.

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                                                                          killmel
                                                                          Participant

                                                                            Hi Amy,

                                                                             

                                                                            I am new to the board so I do not understand why you cannot go back on GSK Braf….or maybe GSK MEk.

                                                                             

                                                                            I hope that you find the drug you neeedit seems you have come alone way to give up the fight now.

                                                                             

                                                                            God Bless you & your family for what you are going thrrouhg.

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