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NED – Results of Rudy’s recent scan

Forums General Melanoma Community NED – Results of Rudy’s recent scan

  • Post
    GAngel
    Participant

      We had so much to be thankful for this Thanksgiving having just learned the great news days before the holiday that the results of Rudy's most recent scans revealed no evidence of disease! For those that do not know his story, he was diagnosed in late February 2013 with Nodular Malignant Melanoma – Stage IV with 15+ mets in his liver and his left groin lymph node.  After testing positive for BRAF he was started on Zel in late March of 2013 and had a great result as far as tumor shrinkage, however, he suffered many grade 4 side effects.  In July 2013, he started on the Dabrafenib/MEK combo, which he has tolerated much better and he has now reached NED!  We are so thankful for this blessing! I am always mindful of the fact that for most patients this treatment will not provide a durable response and the beast will eventually find a way around it, however, we are so grateful and celebrating God's blessings and focusing on the positive and not what may happen.

      PDL is coming to UCI where Rudy's oncologist will be heading the trials next month; however, his NED status will not permit him to be a participant.  Therefore, I am hopeful that if his status does change that he will then be able to participate but we will cross that bridge when and if we get to it! 

      For all of you still battling the beast and for your loved ones fighting along with you, you have been in my thoughts and prayers every day.  May the Lord be your strength and comfort along this very hard road and may you know that you are not alone and you are loved! God bless you all! 

      Yours truly,

      Gina 

    Viewing 14 reply threads
    • Replies
        BrianP
        Participant

          That is fantastic Gina.  So happy for you and your family.  I hope you don't need any more treatments in the future but sounds like you have a good plan in place if you do.

          Brian

          BrianP
          Participant

            That is fantastic Gina.  So happy for you and your family.  I hope you don't need any more treatments in the future but sounds like you have a good plan in place if you do.

            Brian

              Aussielyn
              Participant

                Gina, I am so thrilled for you, Rudy & children. I know what a relief it is to get the NED result after undergoing months of treatment & associated side-effects. I too am on the GSK combo & have recently had the same NED result. I am ,however, still  adjusting to side- effects with the help of prednisone -when off it  I seem prone to temps & really sore feet/ aching legs & calf muscles.  Does Rudy have any side- effects ?  Again , so pleased your prayers have been answered. Best wishes,

                Lyn

                 

                 

                GAngel
                Participant

                  Hello Lyn,

                  I'm happy to hear that you are also NED! Unfortunately, yes, Rudy does suffer from the same side effects, mainly the really sore feet and aching legs, which strangely comes and goes.  He hasn't been treated for the side effects with prednisone or anything else. One thing of interest that I forgot to mention in my post is that Rudy's oncologist took him off MEK, he said because of the side effects.  He said that Rudy  can always go back to it if he needs it.  I wish I would have questioned him more about this as the more I pondered it when we left his office it seemed odd to me because his side effects have been very manageable and only occasionally.  I'm a bit concerned that dabrafenib alone may not be enough to keep him NED, but I do trust his oncologist so I'm trying not to worry too much!

                  I will pray that you are able to manage your side effects and continue to remain NED! Wishing you all the best as well!  Take care!

                  God Bless you and yours,

                  Gina 

                  GAngel
                  Participant

                    Hello Lyn,

                    I'm happy to hear that you are also NED! Unfortunately, yes, Rudy does suffer from the same side effects, mainly the really sore feet and aching legs, which strangely comes and goes.  He hasn't been treated for the side effects with prednisone or anything else. One thing of interest that I forgot to mention in my post is that Rudy's oncologist took him off MEK, he said because of the side effects.  He said that Rudy  can always go back to it if he needs it.  I wish I would have questioned him more about this as the more I pondered it when we left his office it seemed odd to me because his side effects have been very manageable and only occasionally.  I'm a bit concerned that dabrafenib alone may not be enough to keep him NED, but I do trust his oncologist so I'm trying not to worry too much!

                    I will pray that you are able to manage your side effects and continue to remain NED! Wishing you all the best as well!  Take care!

                    God Bless you and yours,

                    Gina 

                    GAngel
                    Participant

                      Hello Lyn,

                      I'm happy to hear that you are also NED! Unfortunately, yes, Rudy does suffer from the same side effects, mainly the really sore feet and aching legs, which strangely comes and goes.  He hasn't been treated for the side effects with prednisone or anything else. One thing of interest that I forgot to mention in my post is that Rudy's oncologist took him off MEK, he said because of the side effects.  He said that Rudy  can always go back to it if he needs it.  I wish I would have questioned him more about this as the more I pondered it when we left his office it seemed odd to me because his side effects have been very manageable and only occasionally.  I'm a bit concerned that dabrafenib alone may not be enough to keep him NED, but I do trust his oncologist so I'm trying not to worry too much!

                      I will pray that you are able to manage your side effects and continue to remain NED! Wishing you all the best as well!  Take care!

                      God Bless you and yours,

                      Gina 

                      Aussielyn
                      Participant

                        Gina, I am so thrilled for you, Rudy & children. I know what a relief it is to get the NED result after undergoing months of treatment & associated side-effects. I too am on the GSK combo & have recently had the same NED result. I am ,however, still  adjusting to side- effects with the help of prednisone -when off it  I seem prone to temps & really sore feet/ aching legs & calf muscles.  Does Rudy have any side- effects ?  Again , so pleased your prayers have been answered. Best wishes,

                        Lyn

                         

                         

                        Aussielyn
                        Participant

                          Gina, I am so thrilled for you, Rudy & children. I know what a relief it is to get the NED result after undergoing months of treatment & associated side-effects. I too am on the GSK combo & have recently had the same NED result. I am ,however, still  adjusting to side- effects with the help of prednisone -when off it  I seem prone to temps & really sore feet/ aching legs & calf muscles.  Does Rudy have any side- effects ?  Again , so pleased your prayers have been answered. Best wishes,

                          Lyn

                           

                           

                          GAngel
                          Participant

                            Thank you Brian! God bless you!

                            GAngel
                            Participant

                              Thank you Brian! God bless you!

                              GAngel
                              Participant

                                Thank you Brian! God bless you!

                              BrianP
                              Participant

                                That is fantastic Gina.  So happy for you and your family.  I hope you don't need any more treatments in the future but sounds like you have a good plan in place if you do.

                                Brian

                                Mat
                                Participant

                                  Gina, I'm so happy for you, Rudy and your family!  Amazing results!  As you know, I personally find this inspiring as I'm in the process of "working off" 15+ liver mets myself.  Happy holidays!

                                  Mat
                                  Participant

                                    Gina, I'm so happy for you, Rudy and your family!  Amazing results!  As you know, I personally find this inspiring as I'm in the process of "working off" 15+ liver mets myself.  Happy holidays!

                                    Mat
                                    Participant

                                      Gina, I'm so happy for you, Rudy and your family!  Amazing results!  As you know, I personally find this inspiring as I'm in the process of "working off" 15+ liver mets myself.  Happy holidays!

                                      POW
                                      Participant

                                        Oh, Gina! Such wonderful news! I am so pleased that Rudy is doing so well and I will pray that he remains NED forever and ever. Thank you for posting this encouraging message.

                                        POW
                                        Participant

                                          Oh, Gina! Such wonderful news! I am so pleased that Rudy is doing so well and I will pray that he remains NED forever and ever. Thank you for posting this encouraging message.

                                          POW
                                          Participant

                                            Oh, Gina! Such wonderful news! I am so pleased that Rudy is doing so well and I will pray that he remains NED forever and ever. Thank you for posting this encouraging message.

                                            kpcollins31
                                            Participant

                                              All I can say is wow – congratulations on the fantastic news.

                                              Kevin

                                               

                                              kpcollins31
                                              Participant

                                                All I can say is wow – congratulations on the fantastic news.

                                                Kevin

                                                 

                                                kpcollins31
                                                Participant

                                                  All I can say is wow – congratulations on the fantastic news.

                                                  Kevin

                                                   

                                                  Tina D
                                                  Participant

                                                    wha an amazing and blessed report to be carrying into this Holiday Season! Thanking God right along with you. ๐Ÿ˜€  

                                                    Tina

                                                    Tina D
                                                    Participant

                                                      wha an amazing and blessed report to be carrying into this Holiday Season! Thanking God right along with you. ๐Ÿ˜€  

                                                      Tina

                                                      Tina D
                                                      Participant

                                                        wha an amazing and blessed report to be carrying into this Holiday Season! Thanking God right along with you. ๐Ÿ˜€  

                                                        Tina

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