MRF-Logo2019-Horizontal-RGB
It’s Me!! Just Checking in
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

It’s Me!! Just Checking in

› Forums › General Melanoma Community › It’s Me!! Just Checking in

  • Post
    • September 23, 2013 at 6:18 pm
    DeniseK
    Participant

      I am so touched that my family here is worried about me and is wondering how I am.  It makes me feel really good knowing you all care 🙂  (((HUGS TO YOU ALL)))))

      So here's my update:

      I went to see my local oncologist not feeling very well, I had been losing weight rapidly, a lot of sleeping, I could barely talk, eat, or swallow due to a met growing near my larnyx, I was prepared for the worst.

       I told him I'm not giving up so we are NOT here to discuss hospice we're here to discuss what's next,  He has another patient that he's been working with with Dr. Minor my specialist so he recommends MEK inhibitor.  I was scheduled for radiation on my throat and my arm.  Today I called to cancel those appointments because the MEK has reduced my tumors!!!!  The one on my arm is almost gone.  I have my voice back and can eat and swallow just fine.  Yesterday I ate so much my stomache hurt!!  🙂  I have only been on MEK for a little over a week and it;s amazing!  I am still taking 1/2 dose Z but changing that to Dabrafenib soon, Maybe.  We're scheduling an MRI to see what;s going on upstairs so maybe I can get into a trial still.  

      I know I've been given this short window of 6 months to a year with MEK but by then Anti PD 1 may be approved.  I am assuming it is the MEK that is shrinking the tumors and not Ipi but that could also be kicking in.  Who knows? All I know is I'm feeling good and feel like I've been given a miracle.  My daughters wedding is in March 2014 and I feel like I will be there crying my eyes out!  🙂  

      I didn't even think of MEK being an option. 

      Thank you all so much for caring.  

      All my best to you all.

      Denise

    Viewing 29 reply threads
    • Replies
        • September 23, 2013 at 6:24 pm
        casagrayson
        Participant

          So happy to things are going better!  Keep hanging in there and pushing those doctors!

           

          heart

            • September 23, 2013 at 6:41 pm
            vivian
            Participant

              Oh, Denise, thank you so much for replying with the great news!  You are one who touches many, and you deserve this big break!    So very happy for you!

              Lear

              • September 23, 2013 at 6:41 pm
              vivian
              Participant

                Oh, Denise, thank you so much for replying with the great news!  You are one who touches many, and you deserve this big break!    So very happy for you!

                Lear

                • September 23, 2013 at 6:41 pm
                vivian
                Participant

                  Oh, Denise, thank you so much for replying with the great news!  You are one who touches many, and you deserve this big break!    So very happy for you!

                  Lear

                  • September 24, 2013 at 6:46 pm
                  mbaelaporte
                  Participant

                    Denise!

                    you are the trial; you are the efficacy

                    was thinking your daughter should advance the date

                    heck no, you go girl! ,  john

                    • September 24, 2013 at 6:46 pm
                    mbaelaporte
                    Participant

                      Denise!

                      you are the trial; you are the efficacy

                      was thinking your daughter should advance the date

                      heck no, you go girl! ,  john

                      • September 24, 2013 at 6:46 pm
                      mbaelaporte
                      Participant

                        Denise!

                        you are the trial; you are the efficacy

                        was thinking your daughter should advance the date

                        heck no, you go girl! ,  john

                      • September 23, 2013 at 6:24 pm
                      casagrayson
                      Participant

                        So happy to things are going better!  Keep hanging in there and pushing those doctors!

                         

                        heart

                        • September 23, 2013 at 6:24 pm
                        casagrayson
                        Participant

                          So happy to things are going better!  Keep hanging in there and pushing those doctors!

                           

                          heart

                          • September 23, 2013 at 6:52 pm
                          aldakota22
                          Participant

                            Good to see your post Denise.Yes you are given a miracle.Keep that PMA  for you will be at your daughters wedding in march 2014.Keep  us updated on your condition so we do not have to worry.Beat the Beast.  Al

                            • September 23, 2013 at 6:52 pm
                            aldakota22
                            Participant

                              Good to see your post Denise.Yes you are given a miracle.Keep that PMA  for you will be at your daughters wedding in march 2014.Keep  us updated on your condition so we do not have to worry.Beat the Beast.  Al

                              • September 23, 2013 at 6:52 pm
                              aldakota22
                              Participant

                                Good to see your post Denise.Yes you are given a miracle.Keep that PMA  for you will be at your daughters wedding in march 2014.Keep  us updated on your condition so we do not have to worry.Beat the Beast.  Al

                                • September 24, 2013 at 12:06 am
                                BrianP
                                Participant
                                  So happy for you Denise! You are so deserving of a break. You are a true inspiration.
                                  Brian
                                  • September 24, 2013 at 12:06 am
                                  BrianP
                                  Participant
                                    So happy for you Denise! You are so deserving of a break. You are a true inspiration.
                                    Brian
                                    • September 24, 2013 at 12:06 am
                                    BrianP
                                    Participant
                                      So happy for you Denise! You are so deserving of a break. You are a true inspiration.
                                      Brian
                                      • September 24, 2013 at 12:50 am
                                      JoshF
                                      Participant

                                        Denise-

                                        This is great to hear!!!! As you can tell many of us have been thinking about you. This is so encouraging and I can't tell you how happy this makes me. Keep at it!!!!!

                                         

                                        Josh

                                        • September 24, 2013 at 12:50 am
                                        JoshF
                                        Participant

                                          Denise-

                                          This is great to hear!!!! As you can tell many of us have been thinking about you. This is so encouraging and I can't tell you how happy this makes me. Keep at it!!!!!

                                           

                                          Josh

                                          • September 24, 2013 at 12:50 am
                                          JoshF
                                          Participant

                                            Denise-

                                            This is great to hear!!!! As you can tell many of us have been thinking about you. This is so encouraging and I can't tell you how happy this makes me. Keep at it!!!!!

                                             

                                            Josh

                                            • September 24, 2013 at 4:16 am
                                            doro
                                            Participant

                                              Wonderful news, Denise! Been thinking about you lately and am so happy to hear this update. Please keep us posted!

                                               

                                              Best,

                                              Doro

                                              • September 24, 2013 at 4:16 am
                                              doro
                                              Participant

                                                Wonderful news, Denise! Been thinking about you lately and am so happy to hear this update. Please keep us posted!

                                                 

                                                Best,

                                                Doro

                                                • September 24, 2013 at 4:16 am
                                                doro
                                                Participant

                                                  Wonderful news, Denise! Been thinking about you lately and am so happy to hear this update. Please keep us posted!

                                                   

                                                  Best,

                                                  Doro

                                                  • September 24, 2013 at 6:53 am
                                                  GAngel
                                                  Participant

                                                    Dear Denise,

                                                    I am so happy to hear that you are doing well! Thank you, Jesus!  I have been praying for you daily as your last post had me concerned and then when a couple of weeks passed and there was no word from you, I could not get you out of my mind. So much so that I was about to post on the forum asking if anyone had heard from your or knows how to reach you when I noticed that “casagrayson” posted inquiring about the same. Regardless, I am so relieved! Thank you for posting and letting everyone know that you are okay. 

                                                    Although we have never met, I felt an instant connection to you when I joined the forum after reading your profile and your many heart felt posts. I noticed that you are the same age as my husband and I and you live in California, as we do.  I am here if you ever need anything, a shoulder to cry on, an ear to listen, or just a friend in Christ!  I will continue to pray for you as you defeat the beast! You can do all things through Christ!

                                                    God Bless you!

                                                    Gina R. (Wife and soul mate to Rudy, Stage IV)

                                                    P.S. You may recall from my previous posts that my husband switched from Zelboraf (positive results but severe side effects) to the Taflinar/MEK combo about two months ago in hopes of fewer side effects and a better response. He had a PetScan this morning and we will see his oncologist this Friday afternoon to find out the results! He feels great, hardly any side effects at all! Now we pray that this morning’s scan reveals that the combo is as effective, if not better than Zelboraf as far as his tumor burden is concerned! At his last appointment, I inquired about PD1 and his oncologist advised that they would be conducting several clinical trials in the near future. I am going to ask him on Friday if he knows how soon the trials will begin.  My husband is being treated at The Chao Cancer Center at UCI in Anaheim, California. His oncologist is a melanoma specialist, John Fruehauf.  He is presently heading a few melanoma related trials. Great doctor, brilliant actually!  

                                                     

                                                    • September 24, 2013 at 6:53 am
                                                    GAngel
                                                    Participant

                                                      Dear Denise,

                                                      I am so happy to hear that you are doing well! Thank you, Jesus!  I have been praying for you daily as your last post had me concerned and then when a couple of weeks passed and there was no word from you, I could not get you out of my mind. So much so that I was about to post on the forum asking if anyone had heard from your or knows how to reach you when I noticed that “casagrayson” posted inquiring about the same. Regardless, I am so relieved! Thank you for posting and letting everyone know that you are okay. 

                                                      Although we have never met, I felt an instant connection to you when I joined the forum after reading your profile and your many heart felt posts. I noticed that you are the same age as my husband and I and you live in California, as we do.  I am here if you ever need anything, a shoulder to cry on, an ear to listen, or just a friend in Christ!  I will continue to pray for you as you defeat the beast! You can do all things through Christ!

                                                      God Bless you!

                                                      Gina R. (Wife and soul mate to Rudy, Stage IV)

                                                      P.S. You may recall from my previous posts that my husband switched from Zelboraf (positive results but severe side effects) to the Taflinar/MEK combo about two months ago in hopes of fewer side effects and a better response. He had a PetScan this morning and we will see his oncologist this Friday afternoon to find out the results! He feels great, hardly any side effects at all! Now we pray that this morning’s scan reveals that the combo is as effective, if not better than Zelboraf as far as his tumor burden is concerned! At his last appointment, I inquired about PD1 and his oncologist advised that they would be conducting several clinical trials in the near future. I am going to ask him on Friday if he knows how soon the trials will begin.  My husband is being treated at The Chao Cancer Center at UCI in Anaheim, California. His oncologist is a melanoma specialist, John Fruehauf.  He is presently heading a few melanoma related trials. Great doctor, brilliant actually!  

                                                       

                                                      • September 24, 2013 at 6:53 am
                                                      GAngel
                                                      Participant

                                                        Dear Denise,

                                                        I am so happy to hear that you are doing well! Thank you, Jesus!  I have been praying for you daily as your last post had me concerned and then when a couple of weeks passed and there was no word from you, I could not get you out of my mind. So much so that I was about to post on the forum asking if anyone had heard from your or knows how to reach you when I noticed that “casagrayson” posted inquiring about the same. Regardless, I am so relieved! Thank you for posting and letting everyone know that you are okay. 

                                                        Although we have never met, I felt an instant connection to you when I joined the forum after reading your profile and your many heart felt posts. I noticed that you are the same age as my husband and I and you live in California, as we do.  I am here if you ever need anything, a shoulder to cry on, an ear to listen, or just a friend in Christ!  I will continue to pray for you as you defeat the beast! You can do all things through Christ!

                                                        God Bless you!

                                                        Gina R. (Wife and soul mate to Rudy, Stage IV)

                                                        P.S. You may recall from my previous posts that my husband switched from Zelboraf (positive results but severe side effects) to the Taflinar/MEK combo about two months ago in hopes of fewer side effects and a better response. He had a PetScan this morning and we will see his oncologist this Friday afternoon to find out the results! He feels great, hardly any side effects at all! Now we pray that this morning’s scan reveals that the combo is as effective, if not better than Zelboraf as far as his tumor burden is concerned! At his last appointment, I inquired about PD1 and his oncologist advised that they would be conducting several clinical trials in the near future. I am going to ask him on Friday if he knows how soon the trials will begin.  My husband is being treated at The Chao Cancer Center at UCI in Anaheim, California. His oncologist is a melanoma specialist, John Fruehauf.  He is presently heading a few melanoma related trials. Great doctor, brilliant actually!  

                                                         

                                                        • September 24, 2013 at 11:38 am
                                                        Owl
                                                        Participant

                                                          WOW, Denise, you rock this! Thank you for sharing these good news. I wish that MEK will work for you for a very long time. You're gonna be the most wonderful bride's mother I can imagine!

                                                          All the best, Jenny

                                                          • September 24, 2013 at 11:38 am
                                                          Owl
                                                          Participant

                                                            WOW, Denise, you rock this! Thank you for sharing these good news. I wish that MEK will work for you for a very long time. You're gonna be the most wonderful bride's mother I can imagine!

                                                            All the best, Jenny

                                                            • September 24, 2013 at 11:38 am
                                                            Owl
                                                            Participant

                                                              WOW, Denise, you rock this! Thank you for sharing these good news. I wish that MEK will work for you for a very long time. You're gonna be the most wonderful bride's mother I can imagine!

                                                              All the best, Jenny

                                                              • September 24, 2013 at 5:33 pm
                                                              JerryfromFauq
                                                              Participant

                                                                Great to hear this report.  Probably the MEK giving the immediate reduction and this should improve the odds that the Ipi will then havea the immune system enhanced so that your system may then keep  the melanoma at bay.  WHOOPEE!

                                                                • September 24, 2013 at 5:33 pm
                                                                JerryfromFauq
                                                                Participant

                                                                  Great to hear this report.  Probably the MEK giving the immediate reduction and this should improve the odds that the Ipi will then havea the immune system enhanced so that your system may then keep  the melanoma at bay.  WHOOPEE!

                                                                    • September 24, 2013 at 7:56 pm
                                                                    DeniseK
                                                                    Participant

                                                                      Thank you each and everyone of you.  I just got a call this morning asking me how much Mek I am taking,  The prescription said 2 pills once a day.  My doctor calls and asks what MG I have, I have 2mg.  Ok so your only supposed to take 1 a day.  I've been taking 2 a day for over a week and a half.  I have blurry vision but no other side effects.  Maybe that's why it was working so fast on me.  I'm glad they caught that.  So I'm switching back to Dabrafenib 1/2 dose with Mek.  Less side effects will be nice especially since my cousin wants to take me to Hawaii soon.  Staying out of the sun wouldn't be much fun.

                                                                      Thanks again for all your support, I REALLY appreciate it.  

                                                                      All my best to you all

                                                                      Denise

                                                                      • September 24, 2013 at 7:56 pm
                                                                      DeniseK
                                                                      Participant

                                                                        Thank you each and everyone of you.  I just got a call this morning asking me how much Mek I am taking,  The prescription said 2 pills once a day.  My doctor calls and asks what MG I have, I have 2mg.  Ok so your only supposed to take 1 a day.  I've been taking 2 a day for over a week and a half.  I have blurry vision but no other side effects.  Maybe that's why it was working so fast on me.  I'm glad they caught that.  So I'm switching back to Dabrafenib 1/2 dose with Mek.  Less side effects will be nice especially since my cousin wants to take me to Hawaii soon.  Staying out of the sun wouldn't be much fun.

                                                                        Thanks again for all your support, I REALLY appreciate it.  

                                                                        All my best to you all

                                                                        Denise

                                                                        • September 24, 2013 at 7:56 pm
                                                                        DeniseK
                                                                        Participant

                                                                          Thank you each and everyone of you.  I just got a call this morning asking me how much Mek I am taking,  The prescription said 2 pills once a day.  My doctor calls and asks what MG I have, I have 2mg.  Ok so your only supposed to take 1 a day.  I've been taking 2 a day for over a week and a half.  I have blurry vision but no other side effects.  Maybe that's why it was working so fast on me.  I'm glad they caught that.  So I'm switching back to Dabrafenib 1/2 dose with Mek.  Less side effects will be nice especially since my cousin wants to take me to Hawaii soon.  Staying out of the sun wouldn't be much fun.

                                                                          Thanks again for all your support, I REALLY appreciate it.  

                                                                          All my best to you all

                                                                          Denise

                                                                        • September 24, 2013 at 5:33 pm
                                                                        JerryfromFauq
                                                                        Participant

                                                                          Great to hear this report.  Probably the MEK giving the immediate reduction and this should improve the odds that the Ipi will then havea the immune system enhanced so that your system may then keep  the melanoma at bay.  WHOOPEE!

                                                                          • September 25, 2013 at 5:08 pm
                                                                          Tina D
                                                                          Participant

                                                                            This is such awesome news to read!!! YAY! SO glad you are doing better 🙂

                                                                              • September 25, 2013 at 10:04 pm
                                                                              Brendan
                                                                              Participant
                                                                                Great to hear from you Denise. Good luck with the new dosage.
                                                                                Brendan
                                                                                • September 25, 2013 at 10:04 pm
                                                                                Brendan
                                                                                Participant
                                                                                  Great to hear from you Denise. Good luck with the new dosage.
                                                                                  Brendan
                                                                                  • September 25, 2013 at 10:04 pm
                                                                                  Brendan
                                                                                  Participant
                                                                                    Great to hear from you Denise. Good luck with the new dosage.
                                                                                    Brendan
                                                                                  • September 25, 2013 at 5:08 pm
                                                                                  Tina D
                                                                                  Participant

                                                                                    This is such awesome news to read!!! YAY! SO glad you are doing better 🙂

                                                                                    • September 25, 2013 at 5:08 pm
                                                                                    Tina D
                                                                                    Participant

                                                                                      This is such awesome news to read!!! YAY! SO glad you are doing better 🙂

                                                                                      • September 26, 2013 at 4:13 pm
                                                                                      KRob
                                                                                      Participant

                                                                                        Denise, 

                                                                                        I've been following your posts for a while and haven't made too many comments, but I wanted you to know that you are, indeed, a inspiring lady!

                                                                                        Your zeal for life is contagious smiley

                                                                                        Stay strong~ God Bless!

                                                                                         

                                                                                        Karen

                                                                                          • September 29, 2013 at 3:28 am
                                                                                          NYKaren
                                                                                          Participant
                                                                                            Denise–hurray. I’m so glad you’re feeling better. You will be there crying your eyes out at your daughter’s wedding! The way I look at it, even if we fail this therapy, there’s time for them to find a new one!
                                                                                            Best regards
                                                                                            Karen
                                                                                            • September 29, 2013 at 3:28 am
                                                                                            NYKaren
                                                                                            Participant
                                                                                              Denise–hurray. I’m so glad you’re feeling better. You will be there crying your eyes out at your daughter’s wedding! The way I look at it, even if we fail this therapy, there’s time for them to find a new one!
                                                                                              Best regards
                                                                                              Karen
                                                                                              • September 29, 2013 at 3:28 am
                                                                                              NYKaren
                                                                                              Participant
                                                                                                Denise–hurray. I’m so glad you’re feeling better. You will be there crying your eyes out at your daughter’s wedding! The way I look at it, even if we fail this therapy, there’s time for them to find a new one!
                                                                                                Best regards
                                                                                                Karen
                                                                                              • September 26, 2013 at 4:13 pm
                                                                                              KRob
                                                                                              Participant

                                                                                                Denise, 

                                                                                                I've been following your posts for a while and haven't made too many comments, but I wanted you to know that you are, indeed, a inspiring lady!

                                                                                                Your zeal for life is contagious smiley

                                                                                                Stay strong~ God Bless!

                                                                                                 

                                                                                                Karen

                                                                                                • September 26, 2013 at 4:13 pm
                                                                                                KRob
                                                                                                Participant

                                                                                                  Denise, 

                                                                                                  I've been following your posts for a while and haven't made too many comments, but I wanted you to know that you are, indeed, a inspiring lady!

                                                                                                  Your zeal for life is contagious smiley

                                                                                                  Stay strong~ God Bless!

                                                                                                   

                                                                                                  Karen

                                                                                              Viewing 29 reply threads
                                                                                              • You must be logged in to reply to this topic.
                                                                                              About the MRF Patient Forum

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

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

                                                                                              Popular Topics