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.

Sharing NED good news – 4,5 years stage IV mel survival

Forums General Melanoma Community Sharing NED good news – 4,5 years stage IV mel survival

  • Post
    beatricefromPARIS
    Participant

      Hello everyone,

      Although very sad to hear the news about Dian from Spokane, I just want to share some good ones, knowing how the good stories of other people have been important to me at crisis points (bad scans) of this long journey : 

      I am on Zelboraf since March 2012, at half dose since May 2012. This is my 7th line of  treatment. Zel worked well but  I had surgery in May 2013 to remove three resisting mel nodules hidden in tummy fat. NED afterwards.

      PET-scan and brain MRI last week :  totally NED.

      Even though, oncs won't allow to stop the medication. Apparently the risk of recurrence is still there.
      Zel side effects go on, but are bearable ….no choice, I guess!

      Beatrice, stage IV diagnosed Feb 2009.

       

    Viewing 17 reply threads
    • Replies
        JoshF
        Participant
          Being a young man 42 years of age and recently diagnosed Stage 4….this is great news! I’m happy to hear things are going well…I wish you continued NED!! Thanks for sharing!

          PS- I didn’t know Diane from Spokane but I know she was and still is an inspiration! Bless her!

          JoshF
          Participant
            Being a young man 42 years of age and recently diagnosed Stage 4….this is great news! I’m happy to hear things are going well…I wish you continued NED!! Thanks for sharing!

            PS- I didn’t know Diane from Spokane but I know she was and still is an inspiration! Bless her!

            JoshF
            Participant
              Being a young man 42 years of age and recently diagnosed Stage 4….this is great news! I’m happy to hear things are going well…I wish you continued NED!! Thanks for sharing!

              PS- I didn’t know Diane from Spokane but I know she was and still is an inspiration! Bless her!

              BrianP
              Participant

                Thanks for taking the time to post your great news Beatrice.  You are right, with the inevitable sad news we occasionally hear on hear like the passing of Dian, post like your's really go a long way to helping morale.

                Brian

                BrianP
                Participant

                  Thanks for taking the time to post your great news Beatrice.  You are right, with the inevitable sad news we occasionally hear on hear like the passing of Dian, post like your's really go a long way to helping morale.

                  Brian

                  BrianP
                  Participant

                    Thanks for taking the time to post your great news Beatrice.  You are right, with the inevitable sad news we occasionally hear on hear like the passing of Dian, post like your's really go a long way to helping morale.

                    Brian

                    Tina D
                    Participant

                      I am so glad you posted this good news. So exciting to have clean scans…congratulations! I am sure you are still celebrating the good news. ๐Ÿ™‚

                      Tina

                      Tina D
                      Participant

                        I am so glad you posted this good news. So exciting to have clean scans…congratulations! I am sure you are still celebrating the good news. ๐Ÿ™‚

                        Tina

                        Tina D
                        Participant

                          I am so glad you posted this good news. So exciting to have clean scans…congratulations! I am sure you are still celebrating the good news. ๐Ÿ™‚

                          Tina

                          awillett1991
                          Participant
                            Congratulations! Wonderful to hear Beatrice!
                            awillett1991
                            Participant
                              Congratulations! Wonderful to hear Beatrice!
                              awillett1991
                              Participant
                                Congratulations! Wonderful to hear Beatrice!
                                Owl
                                Participant

                                  Dear Beatrice,

                                  thank you for sharing these good news. So happy for you that everything looks so good. My husband is completing his 10th month on Zel this week. Scans two weeks ago went very well, nothing has changed, they are not sure whether existing nodules are still MM.

                                  Wish that things continue to be so good for everyone here on this board!

                                  All the best, Jenny

                                  Owl
                                  Participant

                                    Dear Beatrice,

                                    thank you for sharing these good news. So happy for you that everything looks so good. My husband is completing his 10th month on Zel this week. Scans two weeks ago went very well, nothing has changed, they are not sure whether existing nodules are still MM.

                                    Wish that things continue to be so good for everyone here on this board!

                                    All the best, Jenny

                                    Owl
                                    Participant

                                      Dear Beatrice,

                                      thank you for sharing these good news. So happy for you that everything looks so good. My husband is completing his 10th month on Zel this week. Scans two weeks ago went very well, nothing has changed, they are not sure whether existing nodules are still MM.

                                      Wish that things continue to be so good for everyone here on this board!

                                      All the best, Jenny

                                      DebbieH
                                      Participant

                                        Fabulous news Beatrice – so good to see you here again – keep on keeping on as they say!

                                        DebbieH, stage 3C, NED over 12 years after inf.

                                        DebbieH
                                        Participant

                                          Fabulous news Beatrice – so good to see you here again – keep on keeping on as they say!

                                          DebbieH, stage 3C, NED over 12 years after inf.

                                          DebbieH
                                          Participant

                                            Fabulous news Beatrice – so good to see you here again – keep on keeping on as they say!

                                            DebbieH, stage 3C, NED over 12 years after inf.

                                        Viewing 17 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 byย MRF posting policies.