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Finally Found HOPE! BRAF & MEK Trial Response Pics

Forums General Melanoma Community Finally Found HOPE! BRAF & MEK Trial Response Pics

  • Post
    EricNJill
    Participant

      I can't even explain to you in words how I am feeling tonight.  After so many FAILED treatments in the last two years, we've finally found one that looks like it is working.  Nothing even stopped progression before.  When we found out the cancer spread to Eric's brain on November 2nd, I was devastated.  It was one week before we were supposed to start a BRAF treatment in Nashville.  Well God had another plan in store for us…we got the last opening in a BRAF/MEK trial in Nashville and we feel so blessed by these changes in just 2 WEEKS! 

      I can't even explain to you in words how I am feeling tonight.  After so many FAILED treatments in the last two years, we've finally found one that looks like it is working.  Nothing even stopped progression before.  When we found out the cancer spread to Eric's brain on November 2nd, I was devastated.  It was one week before we were supposed to start a BRAF treatment in Nashville.  Well God had another plan in store for us…we got the last opening in a BRAF/MEK trial in Nashville and we feel so blessed by these changes in just 2 WEEKS! 

      I hope that no one is offended by this graphic pictures, but I had to share…

       

       

    Viewing 42 reply threads
    • Replies
        glewis923
        Participant

          Congrats!  i hope it continues to work on and on and on and………….just finally knowing you're doin' something is a relief in itself.   I'll be glad when i get on a trial and feel i'm being a little proactive instead of reactive.

          Best of Luck and Love,  Grady & Families.

          glewis923
          Participant

            Congrats!  i hope it continues to work on and on and on and………….just finally knowing you're doin' something is a relief in itself.   I'll be glad when i get on a trial and feel i'm being a little proactive instead of reactive.

            Best of Luck and Love,  Grady & Families.

            NicOz
            Participant

              Oh I am so very happy to hear (and see!) this! What fantastic news- I'm surprised you've been able to stop dancing long enough to type on the computer 🙂

              And I doubt very much that anyone could look at those pictures and see anything other than a thing of beauty.

              NicOz
              Participant

                Oh I am so very happy to hear (and see!) this! What fantastic news- I'm surprised you've been able to stop dancing long enough to type on the computer 🙂

                And I doubt very much that anyone could look at those pictures and see anything other than a thing of beauty.

                  Vermont_Donna
                  Participant

                    Dear Jill and Eric,

                    SUCH good news! His leg looks so good now, and you can really see the improvement! I am so glad that he is responding!

                    Vermont_Donna, stage 3a, just finished the 4th infusion of Ipi

                    Vermont_Donna
                    Participant

                      Dear Jill and Eric,

                      SUCH good news! His leg looks so good now, and you can really see the improvement! I am so glad that he is responding!

                      Vermont_Donna, stage 3a, just finished the 4th infusion of Ipi

                    JuleFL
                    Participant
                      Wow! Great news, Jill and Eric. Wishing you much success with this trial.
                      Jule
                      JuleFL
                      Participant
                        Wow! Great news, Jill and Eric. Wishing you much success with this trial.
                        Jule
                        jag
                        Participant
                          That is fantastic! I hope Eric is on his way to a complete cure soon!
                          jag
                          Participant
                            That is fantastic! I hope Eric is on his way to a complete cure soon!
                            KatyWI
                            Participant

                              Oh, I'm so thankful and happy for you!

                              I am glad you posted the pisctures.  In just two weeks – that is really impressive!

                              KatyWI

                              KatyWI
                              Participant

                                Oh, I'm so thankful and happy for you!

                                I am glad you posted the pisctures.  In just two weeks – that is really impressive!

                                KatyWI

                                killmel
                                Participant

                                  So Happy for you & Eric.

                                  Does he have any side effects??? If so, how are you dealing with side effects?

                                  God Bless you both

                                   

                                  killmel
                                  Participant

                                    So Happy for you & Eric.

                                    Does he have any side effects??? If so, how are you dealing with side effects?

                                    God Bless you both

                                     

                                      EricNJill
                                      Participant

                                        The only side effect he's suffered from so far is acne!  He will take that any day!!  We were told that it should go away in a couple of weeks.

                                        EricNJill
                                        Participant

                                          The only side effect he's suffered from so far is acne!  He will take that any day!!  We were told that it should go away in a couple of weeks.

                                        jim Breitfeller
                                        Participant

                                          Jill and Eric,

                                          Congrats on getting your tumors to regress. I have read and heard great things about the combination of BRAF and MEK.  Lets hope you see a complete response.

                                           

                                          Thanks for Sharing.

                                          jim Breitfeller
                                          Participant

                                            Jill and Eric,

                                            Congrats on getting your tumors to regress. I have read and heard great things about the combination of BRAF and MEK.  Lets hope you see a complete response.

                                             

                                            Thanks for Sharing.

                                            jim Breitfeller
                                            Participant

                                              Jill and Eric,

                                              Congrats on getting your tumors to regress. I have read and heard great things about the combination of BRAF and MEK.  Lets hope you see a complete response.

                                               

                                              Thanks for Sharing.

                                              jim Breitfeller
                                              Participant

                                                Jill and Eric,

                                                Congrats on getting your tumors to regress. I have read and heard great things about the combination of BRAF and MEK.  Lets hope you see a complete response.

                                                 

                                                Thanks for Sharing.

                                                ValinMtl
                                                Participant

                                                  Jill..As the hymn goes…I'm H-A-P-P-Y,I'm H-A-P-P-Y,  I'm as happy as can be!!!! 

                                                  This wonderful news and as has been said, these pictures are things of beauty to see the shrinkage.   Val xx

                                                  ValinMtl
                                                  Participant

                                                    Jill..As the hymn goes…I'm H-A-P-P-Y,I'm H-A-P-P-Y,  I'm as happy as can be!!!! 

                                                    This wonderful news and as has been said, these pictures are things of beauty to see the shrinkage.   Val xx

                                                    MichaelFL
                                                    Participant

                                                      That is awesome! I have always held out hope that these inhibitor trials are on the right path to one day stopping melanoma cold.

                                                      Hoping for a continued durable response.

                                                      Best wishes,

                                                      Michael

                                                      MichaelFL
                                                      Participant

                                                        That is awesome! I have always held out hope that these inhibitor trials are on the right path to one day stopping melanoma cold.

                                                        Hoping for a continued durable response.

                                                        Best wishes,

                                                        Michael

                                                          KellieSue
                                                          Participant

                                                            That is amazing. In just 2 weeks time! What great news. I'm so happy B-Raf is working for Eric.

                                                             

                                                            Kellie(from Iowa) Stage IV since 2008

                                                            KellieSue
                                                            Participant

                                                              That is amazing. In just 2 weeks time! What great news. I'm so happy B-Raf is working for Eric.

                                                               

                                                              Kellie(from Iowa) Stage IV since 2008

                                                            killmel
                                                            Participant

                                                              Hi Eric & Jill,

                                                               

                                                              So wonderful for you both. How is Eric feeling??

                                                              I am hoping toget into the GSK Braf & Mek trial too.

                                                              You mentioned in a previous post that Eric was getting acne. Is there a cream or something that he get to make the acne go away eventually???

                                                              Also, are there anymore or other side effects that you were told that Eric might get and how are the side effects treated???

                                                              Thank you for answer myquestions…by you sharing info about the trial does not make it as scary as it is. What dosage is Eric get of Braf & Mek??

                                                              Take care..& thinking positive thoughts & prayers for continued response

                                                              Jan

                                                              killmel
                                                              Participant

                                                                Hi Eric & Jill,

                                                                 

                                                                So wonderful for you both. How is Eric feeling??

                                                                I am hoping toget into the GSK Braf & Mek trial too.

                                                                You mentioned in a previous post that Eric was getting acne. Is there a cream or something that he get to make the acne go away eventually???

                                                                Also, are there anymore or other side effects that you were told that Eric might get and how are the side effects treated???

                                                                Thank you for answer myquestions…by you sharing info about the trial does not make it as scary as it is. What dosage is Eric get of Braf & Mek??

                                                                Take care..& thinking positive thoughts & prayers for continued response

                                                                Jan

                                                                  EricNJill
                                                                  Participant

                                                                    Other more common side effects are rash (sometimes severe), diarrhea, and joint pain.  There can be other complications with your heart so you are checked regularly with an EKG and an ECG.  They also monitor your skin because you can get some squirmous cell skin lesions.  It also can cause some problems with your vision so they have your eyes checked as well.  But let me say this, don't let any of these concern you….If you read the side effects of most medications you are currently taking you'd be surprised at all the side effects listed.  Eric said he'd take this treatment over the others he's done in the past any day!  It truly is a mild treatment as far as side effects go. 

                                                                    They did prescribe him antibiotic gel to put on his acne and it seems to be helping.

                                                                    We were told that most side effects will show up during the 2nd week and disappear around the 6th week.  He woke up with the acne on the 14th day! 

                                                                    Thank you all for the well wishes.  After 2 years of non-stop treatments with progression this has truly been a miracle for Eric.  We know that BRAF treatments can be short term so we are praying that the MEK inhibitor will keep the gene from mutating.

                                                                    This was our last hope, really.  Eric was doing so poorly.  He was in so much pain and was starting to have breathing problems.  We were having such a hard time keeping up with the bandaging.  It took two 6inch x 6inch bandages just to cover the large tumor.  The tumors were seeping so bad that we were having a hard time containing it.  If this treatment wouldn't have worked, I'd hate to think where Eric would be right now.

                                                                    If you remember I posted a long time ago about having Hospice care during a clinical trial.  They had no problems with Eric having Hospice Care.  It has been a blessing!  He still is under their care for palliative care.

                                                                    Thanks again for all the well wishes!  JillNEric in OH

                                                                    EricNJill
                                                                    Participant

                                                                      Other more common side effects are rash (sometimes severe), diarrhea, and joint pain.  There can be other complications with your heart so you are checked regularly with an EKG and an ECG.  They also monitor your skin because you can get some squirmous cell skin lesions.  It also can cause some problems with your vision so they have your eyes checked as well.  But let me say this, don't let any of these concern you….If you read the side effects of most medications you are currently taking you'd be surprised at all the side effects listed.  Eric said he'd take this treatment over the others he's done in the past any day!  It truly is a mild treatment as far as side effects go. 

                                                                      They did prescribe him antibiotic gel to put on his acne and it seems to be helping.

                                                                      We were told that most side effects will show up during the 2nd week and disappear around the 6th week.  He woke up with the acne on the 14th day! 

                                                                      Thank you all for the well wishes.  After 2 years of non-stop treatments with progression this has truly been a miracle for Eric.  We know that BRAF treatments can be short term so we are praying that the MEK inhibitor will keep the gene from mutating.

                                                                      This was our last hope, really.  Eric was doing so poorly.  He was in so much pain and was starting to have breathing problems.  We were having such a hard time keeping up with the bandaging.  It took two 6inch x 6inch bandages just to cover the large tumor.  The tumors were seeping so bad that we were having a hard time containing it.  If this treatment wouldn't have worked, I'd hate to think where Eric would be right now.

                                                                      If you remember I posted a long time ago about having Hospice care during a clinical trial.  They had no problems with Eric having Hospice Care.  It has been a blessing!  He still is under their care for palliative care.

                                                                      Thanks again for all the well wishes!  JillNEric in OH

                                                                      EricNJill
                                                                      Participant

                                                                        Oops, forgot dosage.  BRAF Inhibitor is 300 mg/day & MEK Inhibitor is 2 mg/day

                                                                        EricNJill
                                                                        Participant

                                                                          Oops, forgot dosage.  BRAF Inhibitor is 300 mg/day & MEK Inhibitor is 2 mg/day

                                                                        tennisgirl
                                                                        Participant

                                                                          This is so encouraging!  I start GSK BRAF/MEK next week.  After I saw your post, I wanted to sing all day.  I've got some nasty looking tumors coming out of my leg, also, not as bad as Eric's.  I've been following your story on here but don't post much.   Please keep us updated, Jill.  Our best days are in front of us!

                                                                           

                                                                          Marian

                                                                          tennisgirl
                                                                          Participant

                                                                            This is so encouraging!  I start GSK BRAF/MEK next week.  After I saw your post, I wanted to sing all day.  I've got some nasty looking tumors coming out of my leg, also, not as bad as Eric's.  I've been following your story on here but don't post much.   Please keep us updated, Jill.  Our best days are in front of us!

                                                                             

                                                                            Marian

                                                                            James from Sydney
                                                                            Participant

                                                                              Wow, Eric must be so relieved to finally see something working, great idea posting the pics, i look forward to seeing the next one!, Lots of positive energy and love from Oz to you guys

                                                                              best wishes

                                                                              James

                                                                              James from Sydney
                                                                              Participant

                                                                                Wow, Eric must be so relieved to finally see something working, great idea posting the pics, i look forward to seeing the next one!, Lots of positive energy and love from Oz to you guys

                                                                                best wishes

                                                                                James

                                                                                jenniperry
                                                                                Participant

                                                                                  So exciting Jill and Eric!!! Glad you followed your gut and did the brain first.  Trust your instinct.  Love you guys!  Still praying.

                                                                                  jenniperry
                                                                                  Participant

                                                                                    So exciting Jill and Eric!!! Glad you followed your gut and did the brain first.  Trust your instinct.  Love you guys!  Still praying.

                                                                                      Laurie from maine
                                                                                      Participant

                                                                                        How Wonderful for such a response in such a short time.  You must be so excited!  thank you for posting, keep us posted on your continued good news!!

                                                                                        laurie

                                                                                        Laurie from maine
                                                                                        Participant

                                                                                          How Wonderful for such a response in such a short time.  You must be so excited!  thank you for posting, keep us posted on your continued good news!!

                                                                                          laurie

                                                                                        JerryfromFauq
                                                                                        Participant
                                                                                          Soo HAPPY for both of you! Do have an idea how you are feeling. Thinking of you boh.
                                                                                          JerryfromFauq
                                                                                          Participant
                                                                                            Soo HAPPY for both of you! Do have an idea how you are feeling. Thinking of you boh.
                                                                                            Jaime.30
                                                                                            Participant

                                                                                              This is wonderful!!  Happy for you and your husband!

                                                                                              Jaime.30
                                                                                              Participant

                                                                                                This is wonderful!!  Happy for you and your husband!

                                                                                                JakeinNY
                                                                                                Participant

                                                                                                  Congratulations Jill and Eric. Wishing you both all the best.

                                                                                                  JakeinNY
                                                                                                  Participant

                                                                                                    Congratulations Jill and Eric. Wishing you both all the best.

                                                                                                    Sherron
                                                                                                    Participant

                                                                                                      Jill, I am truly amazed how much smaller Eric's tumors look.  I think you may have got your miracle.  I pray that is so.  I am very happy for the both of you..

                                                                                                      Take Care,

                                                                                                      Sherron, wife to Jim FOREVER (angel)

                                                                                                      Sherron
                                                                                                      Participant

                                                                                                        Jill, I am truly amazed how much smaller Eric's tumors look.  I think you may have got your miracle.  I pray that is so.  I am very happy for the both of you..

                                                                                                        Take Care,

                                                                                                        Sherron, wife to Jim FOREVER (angel)

                                                                                                        Suzan AB
                                                                                                        Participant

                                                                                                          For Jill and Eric…

                                                                                                          Wonderful, Wonderful…how do you spell Wonderful…WONDERFUL!!!  I am so excited for you both!  What a wonderful Valentine Day surprise!!!  It is my 18th Wedding Anniversary and with this great news we will be Doing the "Happy Dance".

                                                                                                          "We will Dance A "Happy Dance" with rings on our fingers and bells on our toes for You Both on this WONDERFUL Day!"

                                                                                                          Then we will Dance A "Happy Dance" for us Too!

                                                                                                          Today looks like a Red and Purple Day!!!  With a splash of Mellow-Yellow. 

                                                                                                          Hopefully, I will be on the Braf/MEK test too…very soon for some bothersome lung mets….

                                                                                                          Great News…Thank you for sharing Jill!

                                                                                                          My best to you and yours!

                                                                                                          Suzan AB

                                                                                                          Frickin' Stage IV…A Warriorist Battling the Beast, in Red 6" High Heels!!!

                                                                                                          Suzan AB
                                                                                                          Participant

                                                                                                            For Jill and Eric…

                                                                                                            Wonderful, Wonderful…how do you spell Wonderful…WONDERFUL!!!  I am so excited for you both!  What a wonderful Valentine Day surprise!!!  It is my 18th Wedding Anniversary and with this great news we will be Doing the "Happy Dance".

                                                                                                            "We will Dance A "Happy Dance" with rings on our fingers and bells on our toes for You Both on this WONDERFUL Day!"

                                                                                                            Then we will Dance A "Happy Dance" for us Too!

                                                                                                            Today looks like a Red and Purple Day!!!  With a splash of Mellow-Yellow. 

                                                                                                            Hopefully, I will be on the Braf/MEK test too…very soon for some bothersome lung mets….

                                                                                                            Great News…Thank you for sharing Jill!

                                                                                                            My best to you and yours!

                                                                                                            Suzan AB

                                                                                                            Frickin' Stage IV…A Warriorist Battling the Beast, in Red 6" High Heels!!!

                                                                                                              cherimichele
                                                                                                              Participant

                                                                                                                OMG Jill,

                                                                                                                i have been thinking of you guys… and wondering how Eric was faring..

                                                                                                                this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??

                                                                                                                you must be just over the moon in happiness…

                                                                                                                keep going… things are looking good!!!  i bet Eric is feeling so much better…

                                                                                                                those tumors look very painful… poor darling..

                                                                                                                 

                                                                                                                xxx

                                                                                                                cherimichele
                                                                                                                Participant

                                                                                                                  OMG Jill,

                                                                                                                  i have been thinking of you guys… and wondering how Eric was faring..

                                                                                                                  this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??

                                                                                                                  you must be just over the moon in happiness…

                                                                                                                  keep going… things are looking good!!!  i bet Eric is feeling so much better…

                                                                                                                  those tumors look very painful… poor darling..

                                                                                                                   

                                                                                                                  xxx

                                                                                                                  cherimichele
                                                                                                                  Participant

                                                                                                                    OMG Jill,

                                                                                                                    i have been thinking of you guys… and wondering how Eric was faring..

                                                                                                                    this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??

                                                                                                                    you must be just over the moon in happiness…

                                                                                                                    keep going… things are looking good!!!  i bet Eric is feeling so much better…

                                                                                                                    those tumors look very painful… poor darling..

                                                                                                                     

                                                                                                                    xxx

                                                                                                                    cherimichele
                                                                                                                    Participant

                                                                                                                      OMG Jill,

                                                                                                                      i have been thinking of you guys… and wondering how Eric was faring..

                                                                                                                      this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??

                                                                                                                      you must be just over the moon in happiness…

                                                                                                                      keep going… things are looking good!!!  i bet Eric is feeling so much better…

                                                                                                                      those tumors look very painful… poor darling..

                                                                                                                       

                                                                                                                      xxx

                                                                                                                      cherimichele
                                                                                                                      Participant

                                                                                                                        OMG Jill,

                                                                                                                        i have been thinking of you guys… and wondering how Eric was faring..

                                                                                                                        this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??

                                                                                                                        you must be just over the moon in happiness…

                                                                                                                        keep going… things are looking good!!!  i bet Eric is feeling so much better…

                                                                                                                        those tumors look very painful… poor darling..

                                                                                                                         

                                                                                                                        xxx

                                                                                                                        cherimichele
                                                                                                                        Participant

                                                                                                                          OMG Jill,

                                                                                                                          i have been thinking of you guys… and wondering how Eric was faring..

                                                                                                                          this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??

                                                                                                                          you must be just over the moon in happiness…

                                                                                                                          keep going… things are looking good!!!  i bet Eric is feeling so much better…

                                                                                                                          those tumors look very painful… poor darling..

                                                                                                                           

                                                                                                                          xxx

                                                                                                                        Bonnie Lea
                                                                                                                        Participant

                                                                                                                          I am truly thrilled to see the results.  A picture to me is worth a zillion words.  To actually see the massive changes that occured, to know thrat something is working and how it is actually shrinking away.

                                                                                                                           

                                                                                                                          thankyou both for doing this.  I am humbled

                                                                                                                          Love Bonnie Leaheart

                                                                                                                            Terra
                                                                                                                            Participant

                                                                                                                              I hope we continue to hear positive news for Eric and you are doing a wonderful job supporting him.

                                                                                                                              Terra
                                                                                                                              Participant

                                                                                                                                I hope we continue to hear positive news for Eric and you are doing a wonderful job supporting him.

                                                                                                                              Bonnie Lea
                                                                                                                              Participant

                                                                                                                                I am truly thrilled to see the results.  A picture to me is worth a zillion words.  To actually see the massive changes that occured, to know thrat something is working and how it is actually shrinking away.

                                                                                                                                 

                                                                                                                                thankyou both for doing this.  I am humbled

                                                                                                                                Love Bonnie Leaheart

                                                                                                                                applewhitegroup
                                                                                                                                Participant

                                                                                                                                  Hi,

                                                                                                                                  I hate to pry. I hope Eric is still doing well. I have not seen a response since 2011…I am afraid of the worse. My father just died a few months ago.

                                                                                                                                  http://www.melanoma.org/community/douglas-applewhite

                                                                                                                                  We heard about BRAF but my dad never made it in time…

                                                                                                                                  I am not dwelling on the past but cant help but wonder what if. Did it work? For how long?

                                                                                                                                  applewhitegroup
                                                                                                                                  Participant

                                                                                                                                    Hi,

                                                                                                                                    I hate to pry. I hope Eric is still doing well. I have not seen a response since 2011…I am afraid of the worse. My father just died a few months ago.

                                                                                                                                    http://www.melanoma.org/community/douglas-applewhite

                                                                                                                                    We heard about BRAF but my dad never made it in time…

                                                                                                                                    I am not dwelling on the past but cant help but wonder what if. Did it work? For how long?

                                                                                                                                    applewhitegroup
                                                                                                                                    Participant

                                                                                                                                      Hi,

                                                                                                                                      I hate to pry. I hope Eric is still doing well. I have not seen a response since 2011…I am afraid of the worse. My father just died a few months ago.

                                                                                                                                      http://www.melanoma.org/community/douglas-applewhite

                                                                                                                                      We heard about BRAF but my dad never made it in time…

                                                                                                                                      I am not dwelling on the past but cant help but wonder what if. Did it work? For how long?

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