MRF-Logo2019-Horizontal-RGB
Ex-Lurker Coming Out
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.

Ex-Lurker Coming Out

› Forums › General Melanoma Community › Ex-Lurker Coming Out

  • Post
    • March 28, 2014 at 4:22 pm
    dvd
    Participant

      I've been lurking on this Board now and then for the past year, but it's about time I added something to it.

      A quick recap of my situation: 66 year old caucasion male with extensive history of sun exposure. Superficial melanoma-in-situ removed from scalp 2006, clean margins, no further workup. Feb 2013 parotid tumor biopsy showed melanoma, otherwise negative PET. March 2013 parotidectomy, neck dissection, 1 of 32 nodes positive. April-May radiation to neck. November – tumor recurrence on neck incision scar, PET shows tumors in neck, leg, lungs, scalp. January 2014 start clinical trial of ipilumimab plus either nivolumab or placebo. Within weeks, all signs and symptoms from tumors resolve. Repeat CT yesterday, results pending.

      Late 2013, when things were at their worst, I started writing down some of my thoughts – primarily for my own benefit, to be able to see and re-read what I had been thinking. I shared the blog site with family and a few friends, but don't really have an interest in promoting it. As the site has gained exposure, I have received feedback from some people that the blog helped them in their difficult times with their own challenges (not necessarily melanoma), so I thought I would post the site here, just in case it may be helpful for someone.

                                        daveschronicle.blogspot.com

       

       

    Viewing 8 reply threads
    • Replies
        • March 28, 2014 at 4:46 pm
        JC
        Participant

          sorry to hear your in situ metastasized, always thought it couldn't do that

          • March 28, 2014 at 4:46 pm
          JC
          Participant

            sorry to hear your in situ metastasized, always thought it couldn't do that

            • March 28, 2014 at 4:46 pm
            JC
            Participant

              sorry to hear your in situ metastasized, always thought it couldn't do that

              • March 28, 2014 at 5:19 pm
              SBeattie
              Participant

                Thank you 'dvd'…hoping you continue to do well…appreciate your sharing your experience…and your blog

                 

                  • March 28, 2014 at 7:26 pm
                  Ashley
                  Participant

                    Thanks for your post.  Similar thing happened to my dad, margins clear and 4 years later stage 4.  I'm glad IPI worked for you, hoping the same thing will happen for my dad.  Good luck with the scans, I pray you get good results!

                    • March 28, 2014 at 7:30 pm
                    Ashley
                    Participant

                      One more thing….once you're done with the trial, do you ever find out if you had placebo or active drug?

                      • March 28, 2014 at 8:17 pm
                      dvd
                      Participant

                        The study becomes "unblinded" if there is no clinical effect or my disease progresses. I would then be offered nivolumab if I had been on placebo. In theory, I could receive only ipi X 4 then get 9 months of placebo. All clinical indications, however, strongly suggest I am getting both drugs now.

                        • March 28, 2014 at 8:17 pm
                        dvd
                        Participant

                          The study becomes "unblinded" if there is no clinical effect or my disease progresses. I would then be offered nivolumab if I had been on placebo. In theory, I could receive only ipi X 4 then get 9 months of placebo. All clinical indications, however, strongly suggest I am getting both drugs now.

                          • March 28, 2014 at 8:17 pm
                          dvd
                          Participant

                            The study becomes "unblinded" if there is no clinical effect or my disease progresses. I would then be offered nivolumab if I had been on placebo. In theory, I could receive only ipi X 4 then get 9 months of placebo. All clinical indications, however, strongly suggest I am getting both drugs now.

                            • March 28, 2014 at 7:30 pm
                            Ashley
                            Participant

                              One more thing….once you're done with the trial, do you ever find out if you had placebo or active drug?

                              • March 28, 2014 at 7:30 pm
                              Ashley
                              Participant

                                One more thing….once you're done with the trial, do you ever find out if you had placebo or active drug?

                                • March 28, 2014 at 11:38 pm
                                dvd
                                Participant

                                  Thanks — just got the scan results. This is the first scan since starting the BMS ipi/nivo clinical trial on January 7th. All measurable lesions identified on the previous scan have resolved. Other, minor abnormalities may need to be looked into, but, in general, very good news.

                                  • March 28, 2014 at 11:38 pm
                                  dvd
                                  Participant

                                    Thanks — just got the scan results. This is the first scan since starting the BMS ipi/nivo clinical trial on January 7th. All measurable lesions identified on the previous scan have resolved. Other, minor abnormalities may need to be looked into, but, in general, very good news.

                                    • March 29, 2014 at 12:04 am
                                    hbecker
                                    Participant

                                      excellent! Celebrate!

                                      • March 29, 2014 at 12:04 am
                                      hbecker
                                      Participant

                                        excellent! Celebrate!

                                        • March 29, 2014 at 12:04 am
                                        hbecker
                                        Participant

                                          excellent! Celebrate!

                                          • March 28, 2014 at 11:38 pm
                                          dvd
                                          Participant

                                            Thanks — just got the scan results. This is the first scan since starting the BMS ipi/nivo clinical trial on January 7th. All measurable lesions identified on the previous scan have resolved. Other, minor abnormalities may need to be looked into, but, in general, very good news.

                                            • March 28, 2014 at 7:26 pm
                                            Ashley
                                            Participant

                                              Thanks for your post.  Similar thing happened to my dad, margins clear and 4 years later stage 4.  I'm glad IPI worked for you, hoping the same thing will happen for my dad.  Good luck with the scans, I pray you get good results!

                                              • March 28, 2014 at 7:26 pm
                                              Ashley
                                              Participant

                                                Thanks for your post.  Similar thing happened to my dad, margins clear and 4 years later stage 4.  I'm glad IPI worked for you, hoping the same thing will happen for my dad.  Good luck with the scans, I pray you get good results!

                                              • March 28, 2014 at 5:19 pm
                                              SBeattie
                                              Participant

                                                Thank you 'dvd'…hoping you continue to do well…appreciate your sharing your experience…and your blog

                                                 

                                                • March 28, 2014 at 5:19 pm
                                                SBeattie
                                                Participant

                                                  Thank you 'dvd'…hoping you continue to do well…appreciate your sharing your experience…and your blog

                                                   

                                                  • March 28, 2014 at 8:26 pm
                                                  hbecker
                                                  Participant

                                                    Dave,

                                                      Thanks for leading us to your blog – I just read the whole thing. I know everyone is different, but you gave me some insight to a few things that may have been going through my husband's mind.

                                                      I particularly appreciated your post on statistics. That's a piece of advice lots of us here have received – and given to other melanoma patients and caregivers: don't go with the statistics.

                                                      I'm also glad to hear of your experience in the Phase III trial of ipi and nivo. It sounds like at least you are an ipi responder, and perhaps also to nivo. How wonderful!

                                                    Will be thinking of you and reading your blog.

                                                    ~Hazel

                                                    • March 28, 2014 at 8:26 pm
                                                    hbecker
                                                    Participant

                                                      Dave,

                                                        Thanks for leading us to your blog – I just read the whole thing. I know everyone is different, but you gave me some insight to a few things that may have been going through my husband's mind.

                                                        I particularly appreciated your post on statistics. That's a piece of advice lots of us here have received – and given to other melanoma patients and caregivers: don't go with the statistics.

                                                        I'm also glad to hear of your experience in the Phase III trial of ipi and nivo. It sounds like at least you are an ipi responder, and perhaps also to nivo. How wonderful!

                                                      Will be thinking of you and reading your blog.

                                                      ~Hazel

                                                        • March 29, 2014 at 10:34 am
                                                        JC
                                                        Participant

                                                          if we say ignore statistics, then doesn't that include the good/positive statistics that give us hope?

                                                          • March 29, 2014 at 10:34 am
                                                          JC
                                                          Participant

                                                            if we say ignore statistics, then doesn't that include the good/positive statistics that give us hope?

                                                            • March 29, 2014 at 10:34 am
                                                            JC
                                                            Participant

                                                              if we say ignore statistics, then doesn't that include the good/positive statistics that give us hope?

                                                            • March 28, 2014 at 8:26 pm
                                                            hbecker
                                                            Participant

                                                              Dave,

                                                                Thanks for leading us to your blog – I just read the whole thing. I know everyone is different, but you gave me some insight to a few things that may have been going through my husband's mind.

                                                                I particularly appreciated your post on statistics. That's a piece of advice lots of us here have received – and given to other melanoma patients and caregivers: don't go with the statistics.

                                                                I'm also glad to hear of your experience in the Phase III trial of ipi and nivo. It sounds like at least you are an ipi responder, and perhaps also to nivo. How wonderful!

                                                              Will be thinking of you and reading your blog.

                                                              ~Hazel

                                                          Viewing 8 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