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Spreading Hope

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  • Post
    • June 19, 2016 at 5:09 am
    LibbyinVA
    Participant

      I know many look to this support site for positive messages. So I'd like to share that this year, 2016, is my 10-year NED anniversary…not bad for someone who was told in 2005 to "get my affairs in order." I remember that time like it was yesterday and it was a terrifying. In early spring of 2005 I was diagnosed with stage IIIb metastatic melanoma. My prognosis was grim…6-9 months, 12-months at best. Well, here I am and it's 2016 and I am doing great.

      If you are where I was in 2005, please remember you are not a number. You are a person and no one is born with an expiration date stamped on them. Use the Melanoma Research Foundation site to educate yourself about melanoma…this site has everything you need so take full advantage of the excellent services offered here.

      Also, seek treatment at a designated melanoma center. If you don't have one where you live, find one and go there. Look into what clinical trials could offer you. Please don't say no to being part of a clinical trial until you have at least taken the time to learn about them. Find a doctor who will take the time to answer all your questions no matter how many questions you have. You want to be an active participant in your care.

      Trust me, it's well worth the travel and extra effort involved in seeking care at a designated melanoma treatment center. I can only speak from my own personal experience but in my case I firmly believe that it made the difference between life and death. I traveled to New York and participated in a clinical trial under Dr Anna Pavlick at the NYU Clinical Cancer Center's Melanoma Program. Deep down inside I know she saved my life. 

      I sincerely hope my story will help other melanoma patients stay strong and hopeful. A melanoma diagnosis does not mean you've been given a death sentence. I personally know countless stage III and IV people who are alive and well 15, 20 and even more years following their initial diagnosis. Miracles do happen…I believe I am one.

      Two of my favorite sayings relative to melanoma are, "I have melanoma but melanoma does not have me" and "I am living with cancer, not dying from it." Feel free to claim one of these slogans for yourself or come up with another one. Whatever you do, just don't give up!

      Feel free to respond, disagree or ask me questions. You are not in this alone!

      LibbyinVA

    Viewing 20 reply threads
    • Replies
        • June 19, 2016 at 3:23 pm
        laulamb
        Participant

          Thank you for your post.  I am just beginning my Stage 3a melanoma journey.  These past two months have been frightening, not knowing if I have 5,10, 20 years.  Hearing stories like yours gives me hope.  

          Thank you for reaching out and sharing.  

          • June 19, 2016 at 3:23 pm
          laulamb
          Participant

            Thank you for your post.  I am just beginning my Stage 3a melanoma journey.  These past two months have been frightening, not knowing if I have 5,10, 20 years.  Hearing stories like yours gives me hope.  

            Thank you for reaching out and sharing.  

            • June 19, 2016 at 3:23 pm
            laulamb
            Participant

              Thank you for your post.  I am just beginning my Stage 3a melanoma journey.  These past two months have been frightening, not knowing if I have 5,10, 20 years.  Hearing stories like yours gives me hope.  

              Thank you for reaching out and sharing.  

              • June 19, 2016 at 6:20 pm
              Bubbles
              Participant

                That's wonderful to read, Libby!!!  If I remember correctly you did dendritic cell vaccines?  Thanks for being a rattie paving the way.  More research is proving valuable with them today.  The middle article I posted here is recent and showing hope going forward:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/dendritic-cell-vaccines-perhaps-this.html

                Thanks for what you've done and continue to do!!  Celeste

                • June 19, 2016 at 6:20 pm
                Bubbles
                Participant

                  That's wonderful to read, Libby!!!  If I remember correctly you did dendritic cell vaccines?  Thanks for being a rattie paving the way.  More research is proving valuable with them today.  The middle article I posted here is recent and showing hope going forward:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/dendritic-cell-vaccines-perhaps-this.html

                  Thanks for what you've done and continue to do!!  Celeste

                  • June 19, 2016 at 6:20 pm
                  Bubbles
                  Participant

                    That's wonderful to read, Libby!!!  If I remember correctly you did dendritic cell vaccines?  Thanks for being a rattie paving the way.  More research is proving valuable with them today.  The middle article I posted here is recent and showing hope going forward:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/dendritic-cell-vaccines-perhaps-this.html

                    Thanks for what you've done and continue to do!!  Celeste

                    • June 19, 2016 at 9:44 pm
                    jenny22
                    Participant

                      Hi Libby- 

                      GREAT to see your post…..i have followed your story, as I too am a patient of Dr. Pavlicks….I particpated in an NY-ESO- 1 vaccine trial in 2014…i did unfortunatley have a 2nd recurrence 6 months after completing the vaccine trial…HOWEVER….Dr. pavlick told me that the results of these trials did show better outcomes, and even with recurrences, there were more local recurrences rather than distant mets.

                      Keeping my fingers crossed!!!

                      Again, congrats on your 10 year milestone !!!!!! 

                      All the best,

                      Jenny

                      • June 19, 2016 at 9:44 pm
                      jenny22
                      Participant

                        Hi Libby- 

                        GREAT to see your post…..i have followed your story, as I too am a patient of Dr. Pavlicks….I particpated in an NY-ESO- 1 vaccine trial in 2014…i did unfortunatley have a 2nd recurrence 6 months after completing the vaccine trial…HOWEVER….Dr. pavlick told me that the results of these trials did show better outcomes, and even with recurrences, there were more local recurrences rather than distant mets.

                        Keeping my fingers crossed!!!

                        Again, congrats on your 10 year milestone !!!!!! 

                        All the best,

                        Jenny

                        • June 19, 2016 at 9:44 pm
                        jenny22
                        Participant

                          Hi Libby- 

                          GREAT to see your post…..i have followed your story, as I too am a patient of Dr. Pavlicks….I particpated in an NY-ESO- 1 vaccine trial in 2014…i did unfortunatley have a 2nd recurrence 6 months after completing the vaccine trial…HOWEVER….Dr. pavlick told me that the results of these trials did show better outcomes, and even with recurrences, there were more local recurrences rather than distant mets.

                          Keeping my fingers crossed!!!

                          Again, congrats on your 10 year milestone !!!!!! 

                          All the best,

                          Jenny

                          • June 20, 2016 at 2:22 am
                          stevecathy
                          Participant
                            Thank you for the encouragement. May God
                            Bless you always .
                            • June 20, 2016 at 2:22 am
                            stevecathy
                            Participant
                              Thank you for the encouragement. May God
                              Bless you always .
                              • June 20, 2016 at 2:22 am
                              stevecathy
                              Participant
                                Thank you for the encouragement. May God
                                Bless you always .
                                • June 20, 2016 at 3:14 pm
                                mdoh
                                Participant

                                  Thank you for your post.  My family keeps telling me to stop reading things on the internet about this beast, but it is posts like yours that give me hope for my future.  How wonderful for you and your family that you've celebrated your 10 year NED anniversary.  I'm one year in and hope to be writing the same post as yours in 9 years! You've given great advice.  I agree that traveling to a designiated melanoma center is key.  I travel over 3 hours to see my doc in Boston.  Well worth it.  Wishing you smooth sailing for another 10 years!

                                  Mary

                                  • June 20, 2016 at 3:14 pm
                                  mdoh
                                  Participant

                                    Thank you for your post.  My family keeps telling me to stop reading things on the internet about this beast, but it is posts like yours that give me hope for my future.  How wonderful for you and your family that you've celebrated your 10 year NED anniversary.  I'm one year in and hope to be writing the same post as yours in 9 years! You've given great advice.  I agree that traveling to a designiated melanoma center is key.  I travel over 3 hours to see my doc in Boston.  Well worth it.  Wishing you smooth sailing for another 10 years!

                                    Mary

                                    • June 20, 2016 at 3:14 pm
                                    mdoh
                                    Participant

                                      Thank you for your post.  My family keeps telling me to stop reading things on the internet about this beast, but it is posts like yours that give me hope for my future.  How wonderful for you and your family that you've celebrated your 10 year NED anniversary.  I'm one year in and hope to be writing the same post as yours in 9 years! You've given great advice.  I agree that traveling to a designiated melanoma center is key.  I travel over 3 hours to see my doc in Boston.  Well worth it.  Wishing you smooth sailing for another 10 years!

                                      Mary

                                      • June 21, 2016 at 11:57 am
                                      Fen
                                      Participant

                                        Thanks for your post, Libby.  It is so good to hear from an 'old' member and to know you're doing well.  I wonder if Jane from Maine ever drops by.   These positive posts help tremendously.

                                        fen

                                        • June 21, 2016 at 11:57 am
                                        Fen
                                        Participant

                                          Thanks for your post, Libby.  It is so good to hear from an 'old' member and to know you're doing well.  I wonder if Jane from Maine ever drops by.   These positive posts help tremendously.

                                          fen

                                          • June 21, 2016 at 11:57 am
                                          Fen
                                          Participant

                                            Thanks for your post, Libby.  It is so good to hear from an 'old' member and to know you're doing well.  I wonder if Jane from Maine ever drops by.   These positive posts help tremendously.

                                            fen

                                            • June 22, 2016 at 12:18 am
                                            sister of patient
                                            Participant

                                              Thank you for sharing this wonderful anniversary news Libby. I wish you a lifetime of NED.  

                                              Barb

                                              • June 22, 2016 at 12:18 am
                                              sister of patient
                                              Participant

                                                Thank you for sharing this wonderful anniversary news Libby. I wish you a lifetime of NED.  

                                                Barb

                                                • June 22, 2016 at 12:18 am
                                                sister of patient
                                                Participant

                                                  Thank you for sharing this wonderful anniversary news Libby. I wish you a lifetime of NED.  

                                                  Barb

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