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Good news

› Forums › General Melanoma Community › Good news

  • Post
    • February 13, 2014 at 3:16 pm
    NYKaren
    Participant

      Hi all,

      Yesterday I had MRI, saw onc and neurosurgeon. 

      Dr. Pavlick saw regression on some of those pesky scalp mets, and my LDH went down a few more points. It had been quite high, went down a lot last month after starting MEK, and continued. So I'm stable.  I just love her. I never thought I'd like someone as much as Dr. Wolchuck, but they're both terrific. 

      Then on to Dr. Kondziolka, my Neurosurgeon. All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month.   When he told me that 10, even 5 years ago, it would not have been possible to Gamma Knife so many mets, I asked if it was because advances have been made with the GN.  he said no, it's because of the advances in the ways they've learned to use it.  Not so long ago, it would have been WBR.   He was delighted at my affect; said I was sharp as a tack. Lol. 

      Also, Dr. P was going to be speaking to Merck about expanded access; will let you know. 

      Karen

    Viewing 20 reply threads
    • Replies
        • February 13, 2014 at 3:17 pm
        NYKaren
        Participant

          I meant to say expanded access to PD1. 

            • February 13, 2014 at 9:08 pm
            Tina D
            Participant

              Awesome news all the way around! Congratulations : )

              Tina

              • February 13, 2014 at 9:08 pm
              Tina D
              Participant

                Awesome news all the way around! Congratulations : )

                Tina

                • February 13, 2014 at 9:08 pm
                Tina D
                Participant

                  Awesome news all the way around! Congratulations : )

                  Tina

                • February 13, 2014 at 3:17 pm
                NYKaren
                Participant

                  I meant to say expanded access to PD1. 

                  • February 13, 2014 at 3:17 pm
                  NYKaren
                  Participant

                    I meant to say expanded access to PD1. 

                    • February 13, 2014 at 3:26 pm
                    kpcollins31
                    Participant

                      Congratulations – Great news.

                      Kevin

                       

                        • February 13, 2014 at 3:28 pm
                        Mat
                        Participant

                          Great news Karen!

                          • February 13, 2014 at 3:28 pm
                          Mat
                          Participant

                            Great news Karen!

                            • February 13, 2014 at 4:20 pm
                            Brendan
                            Participant

                              "All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month."

                              Great news!!  Congrats.

                              Brendan

                              • February 13, 2014 at 4:20 pm
                              Brendan
                              Participant

                                "All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month."

                                Great news!!  Congrats.

                                Brendan

                                • February 13, 2014 at 4:20 pm
                                Brendan
                                Participant

                                  "All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month."

                                  Great news!!  Congrats.

                                  Brendan

                                  • February 13, 2014 at 3:28 pm
                                  Mat
                                  Participant

                                    Great news Karen!

                                  • February 13, 2014 at 3:26 pm
                                  kpcollins31
                                  Participant

                                    Congratulations – Great news.

                                    Kevin

                                     

                                    • February 13, 2014 at 3:26 pm
                                    kpcollins31
                                    Participant

                                      Congratulations – Great news.

                                      Kevin

                                       

                                      • February 13, 2014 at 4:35 pm
                                      Bubbles
                                      Participant

                                        Oh, Karen! That's WONDERFUL!!!!  You are an inspiration to all of us and especially to those with brain mets with the need for SRS as well as the BRAF/MEK combo!  You go girl!!!  celeste

                                        • February 13, 2014 at 4:35 pm
                                        Bubbles
                                        Participant

                                          Oh, Karen! That's WONDERFUL!!!!  You are an inspiration to all of us and especially to those with brain mets with the need for SRS as well as the BRAF/MEK combo!  You go girl!!!  celeste

                                          • February 13, 2014 at 4:35 pm
                                          Bubbles
                                          Participant

                                            Oh, Karen! That's WONDERFUL!!!!  You are an inspiration to all of us and especially to those with brain mets with the need for SRS as well as the BRAF/MEK combo!  You go girl!!!  celeste

                                            • February 13, 2014 at 8:34 pm
                                            POW
                                            Participant

                                              That's wonderful news, Karen! Good for you! You are a courageous warrior and a true inspiration. Keep doing what you're doing!

                                              • February 13, 2014 at 8:34 pm
                                              POW
                                              Participant

                                                That's wonderful news, Karen! Good for you! You are a courageous warrior and a true inspiration. Keep doing what you're doing!

                                                • February 13, 2014 at 8:34 pm
                                                POW
                                                Participant

                                                  That's wonderful news, Karen! Good for you! You are a courageous warrior and a true inspiration. Keep doing what you're doing!

                                                  • February 13, 2014 at 10:24 pm
                                                  shonnat
                                                  Participant

                                                    Hi Karen,

                                                     

                                                    My husband was diagnosed with 3 brain mets and now 8 months later with 10 spots. He had WBR and srs on the one that caused his problems 8 months ago. Now they refuse to give him any more srs treatment without a proper explanation except that he has had too much radiation already. But that doesn't make sense as they were looking to give him more. They only treat up to 3 at a time yet I see on this board so many that have had more treated. I am looking for a second opinion. We are in Canada and maybe their protocol is different. I want at least a more definitve explanation before I give up.

                                                    Do you mind telling me how many of yours were treated at the same time and what size were they.

                                                    Thanks

                                                    Anna

                                                    • February 13, 2014 at 10:24 pm
                                                    shonnat
                                                    Participant

                                                      Hi Karen,

                                                       

                                                      My husband was diagnosed with 3 brain mets and now 8 months later with 10 spots. He had WBR and srs on the one that caused his problems 8 months ago. Now they refuse to give him any more srs treatment without a proper explanation except that he has had too much radiation already. But that doesn't make sense as they were looking to give him more. They only treat up to 3 at a time yet I see on this board so many that have had more treated. I am looking for a second opinion. We are in Canada and maybe their protocol is different. I want at least a more definitve explanation before I give up.

                                                      Do you mind telling me how many of yours were treated at the same time and what size were they.

                                                      Thanks

                                                      Anna

                                                      • February 13, 2014 at 10:24 pm
                                                      shonnat
                                                      Participant

                                                        Hi Karen,

                                                         

                                                        My husband was diagnosed with 3 brain mets and now 8 months later with 10 spots. He had WBR and srs on the one that caused his problems 8 months ago. Now they refuse to give him any more srs treatment without a proper explanation except that he has had too much radiation already. But that doesn't make sense as they were looking to give him more. They only treat up to 3 at a time yet I see on this board so many that have had more treated. I am looking for a second opinion. We are in Canada and maybe their protocol is different. I want at least a more definitve explanation before I give up.

                                                        Do you mind telling me how many of yours were treated at the same time and what size were they.

                                                        Thanks

                                                        Anna

                                                          • February 14, 2014 at 1:49 am
                                                          NYKaren
                                                          Participant

                                                            Hi Anna,

                                                            i had about 15 each of 2 times. The largest was 22 mm, so luckily they were small.   Each time the neuro knew I had them, he did them all. It took him a long time to plot them out and even the procedures themselves were comparatively long… 2 hours for the second one.  

                                                            Last year, when Zel stopped working for me, I developed the first set. Then I started Tafinlar but very stupidly I myself messed up the dosing and was in too much of a hurry to get off steroids ( hoping for that elusive PD1 clinical trial). This time was 2 months ago, stayed on steroids 1 month, remain on Kepra and of course BRAF/MEK combo. 

                                                            I find it hard to believe that a doc would talk about too much radiation.  I would definitely get a second opinion.   

                                                            Hope this helps,

                                                             karen

                                                            • February 15, 2014 at 11:32 pm
                                                            shonnat
                                                            Participant

                                                              Thanks for the info. Unfortunately my husband died yesterday from a rapid growth of his brain mets,

                                                              He was inpirational in his approach to living with cancer.  How I hate this disease.  

                                                              Good luck to you!

                                                               

                                                              Anna

                                                              • February 16, 2014 at 1:22 am
                                                              POW
                                                              Participant

                                                                Oh, Anna! I'm so sorry to learn this. It sounds like your husband's melanoma was particularly aggressive and resistant to treatment. I know that you tried everything that you possibly could to help him.  You fought by his side every step of the way.

                                                                Your husband was a vailant warrior and I hope that he is now at peace.  I hope that you are surrounded by loving family and friends who can help and comfort you during this difficult time. Thank you so much for sharing your journey with us.

                                                                • February 16, 2014 at 1:35 pm
                                                                shonnat
                                                                Participant

                                                                   That's very kind of you.

                                                                  I am fortunate to have lots of love in my life.

                                                                  Anna

                                                                  • February 16, 2014 at 1:35 pm
                                                                  shonnat
                                                                  Participant

                                                                     That's very kind of you.

                                                                    I am fortunate to have lots of love in my life.

                                                                    Anna

                                                                    • February 16, 2014 at 1:35 pm
                                                                    shonnat
                                                                    Participant

                                                                       That's very kind of you.

                                                                      I am fortunate to have lots of love in my life.

                                                                      Anna

                                                                      • February 16, 2014 at 1:22 am
                                                                      POW
                                                                      Participant

                                                                        Oh, Anna! I'm so sorry to learn this. It sounds like your husband's melanoma was particularly aggressive and resistant to treatment. I know that you tried everything that you possibly could to help him.  You fought by his side every step of the way.

                                                                        Your husband was a vailant warrior and I hope that he is now at peace.  I hope that you are surrounded by loving family and friends who can help and comfort you during this difficult time. Thank you so much for sharing your journey with us.

                                                                        • February 16, 2014 at 1:22 am
                                                                        POW
                                                                        Participant

                                                                          Oh, Anna! I'm so sorry to learn this. It sounds like your husband's melanoma was particularly aggressive and resistant to treatment. I know that you tried everything that you possibly could to help him.  You fought by his side every step of the way.

                                                                          Your husband was a vailant warrior and I hope that he is now at peace.  I hope that you are surrounded by loving family and friends who can help and comfort you during this difficult time. Thank you so much for sharing your journey with us.

                                                                          • February 15, 2014 at 11:32 pm
                                                                          shonnat
                                                                          Participant

                                                                            Thanks for the info. Unfortunately my husband died yesterday from a rapid growth of his brain mets,

                                                                            He was inpirational in his approach to living with cancer.  How I hate this disease.  

                                                                            Good luck to you!

                                                                             

                                                                            Anna

                                                                            • February 15, 2014 at 11:32 pm
                                                                            shonnat
                                                                            Participant

                                                                              Thanks for the info. Unfortunately my husband died yesterday from a rapid growth of his brain mets,

                                                                              He was inpirational in his approach to living with cancer.  How I hate this disease.  

                                                                              Good luck to you!

                                                                               

                                                                              Anna

                                                                              • February 14, 2014 at 1:49 am
                                                                              NYKaren
                                                                              Participant

                                                                                Hi Anna,

                                                                                i had about 15 each of 2 times. The largest was 22 mm, so luckily they were small.   Each time the neuro knew I had them, he did them all. It took him a long time to plot them out and even the procedures themselves were comparatively long… 2 hours for the second one.  

                                                                                Last year, when Zel stopped working for me, I developed the first set. Then I started Tafinlar but very stupidly I myself messed up the dosing and was in too much of a hurry to get off steroids ( hoping for that elusive PD1 clinical trial). This time was 2 months ago, stayed on steroids 1 month, remain on Kepra and of course BRAF/MEK combo. 

                                                                                I find it hard to believe that a doc would talk about too much radiation.  I would definitely get a second opinion.   

                                                                                Hope this helps,

                                                                                 karen

                                                                                • February 14, 2014 at 1:49 am
                                                                                NYKaren
                                                                                Participant

                                                                                  Hi Anna,

                                                                                  i had about 15 each of 2 times. The largest was 22 mm, so luckily they were small.   Each time the neuro knew I had them, he did them all. It took him a long time to plot them out and even the procedures themselves were comparatively long… 2 hours for the second one.  

                                                                                  Last year, when Zel stopped working for me, I developed the first set. Then I started Tafinlar but very stupidly I myself messed up the dosing and was in too much of a hurry to get off steroids ( hoping for that elusive PD1 clinical trial). This time was 2 months ago, stayed on steroids 1 month, remain on Kepra and of course BRAF/MEK combo. 

                                                                                  I find it hard to believe that a doc would talk about too much radiation.  I would definitely get a second opinion.   

                                                                                  Hope this helps,

                                                                                   karen

                                                                                • February 14, 2014 at 12:24 am
                                                                                jag
                                                                                Participant

                                                                                  Way to go Karen! very happy to see you are doing so well.  I am so far removed from current therapies, that I can't believe that they GN'd so many tumors either.  I remember Dr. Wolchok talked to me about WBR once because I had 2!

                                                                                  Unfortunately (and maybe fortunately) there was a ton of radiation necrosis which eventually led to me having seizures.  Keep you patnet updated so old timers can check in every so often.

                                                                                  John

                                                                                  • February 14, 2014 at 12:24 am
                                                                                  jag
                                                                                  Participant

                                                                                    Way to go Karen! very happy to see you are doing so well.  I am so far removed from current therapies, that I can't believe that they GN'd so many tumors either.  I remember Dr. Wolchok talked to me about WBR once because I had 2!

                                                                                    Unfortunately (and maybe fortunately) there was a ton of radiation necrosis which eventually led to me having seizures.  Keep you patnet updated so old timers can check in every so often.

                                                                                    John

                                                                                      • February 14, 2014 at 1:43 am
                                                                                      ljhncj12345
                                                                                      Participant

                                                                                        Congratulations on your good news!

                                                                                        • February 14, 2014 at 1:43 am
                                                                                        ljhncj12345
                                                                                        Participant

                                                                                          Congratulations on your good news!

                                                                                          • February 14, 2014 at 1:43 am
                                                                                          ljhncj12345
                                                                                          Participant

                                                                                            Congratulations on your good news!

                                                                                          • February 14, 2014 at 12:24 am
                                                                                          jag
                                                                                          Participant

                                                                                            Way to go Karen! very happy to see you are doing so well.  I am so far removed from current therapies, that I can't believe that they GN'd so many tumors either.  I remember Dr. Wolchok talked to me about WBR once because I had 2!

                                                                                            Unfortunately (and maybe fortunately) there was a ton of radiation necrosis which eventually led to me having seizures.  Keep you patnet updated so old timers can check in every so often.

                                                                                            John

                                                                                            • February 14, 2014 at 2:22 pm
                                                                                            hbecker
                                                                                            Participant

                                                                                              Yay Karen!! So happy for you!

                                                                                              Hazel

                                                                                              • February 14, 2014 at 2:22 pm
                                                                                              hbecker
                                                                                              Participant

                                                                                                Yay Karen!! So happy for you!

                                                                                                Hazel

                                                                                                • February 14, 2014 at 2:22 pm
                                                                                                hbecker
                                                                                                Participant

                                                                                                  Yay Karen!! So happy for you!

                                                                                                  Hazel

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