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.

One more round to go

Forums General Melanoma Community One more round to go

  • Post
    LynnLuc
    Participant

      One more round to go and that will be March 2 and I  will have completed the two 12 week cycles which means I would have had 72 injections of the peptides- Two with gp100:209-217(210M) Peptide, Two with MART-1:26-35(27L) Peptide, One with gp100:280-288(288V) Peptide, one with NY-ESO-1 Peptide / Montanide ISA 51 VG every other week in alternating thighs and 12 IV doses of MDX 1106.

      I remain humbly NED! March 25 will be my one year anniversary of NED!

      One more round to go and that will be March 2 and I  will have completed the two 12 week cycles which means I would have had 72 injections of the peptides- Two with gp100:209-217(210M) Peptide, Two with MART-1:26-35(27L) Peptide, One with gp100:280-288(288V) Peptide, one with NY-ESO-1 Peptide / Montanide ISA 51 VG every other week in alternating thighs and 12 IV doses of MDX 1106.

      I remain humbly NED! March 25 will be my one year anniversary of NED!

      Today I have made it 2 weeks of going back to work. I am in training to get my FL certification – I love social work and helping others…child welfare is awesome! Training goes on for another 8 weeks or so and it's tough for me right now…body is still exhausted and out of shape but I am pushing myself and I will get my endurance back, The depression and the neg. thoughts I think is what holds me down a lot of the time.

      I will probably  have a serious pary on March 26…everyone welcome to attend!!

      Loading spinner
    Viewing 9 reply threads
    • Replies
        debbieVA
        Participant

          Congrats on finishing up treatment and getting back to life!  Life is good in NEDville!

          Debbie Stage 4 NED

          Loading spinner
          debbieVA
          Participant

            Congrats on finishing up treatment and getting back to life!  Life is good in NEDville!

            Debbie Stage 4 NED

            Loading spinner
            JakeinNY
            Participant

              Congratulations. I hope that you overcome the mental part very soon too.

              Best wishes for a long life, one day at a time.

              Loading spinner
                dawn dion
                Participant

                  Big Congrats on being NED!!!!!!  That is truly wonderful!   you mentioned you live in Florida – I do also, center of the state, Leesburg to be exact.  I was wondering about the treatment course you chose –  and where you get your treatmeants.   I go to Moffett and I'm planning to have a very big discussion this week with my dr. I have been given very little info on my options and I feel like I am being pushed one way or the other.    Any insight you could give me would be much appreciated.    I was recently dx stage 4 with two small girls and believe me this is extreamly frightening and confusing.    

                  Thanks

                  Hugs and Smiles :)

                  Dawn

                   

                  Loading spinner
                  LynnLuc
                  Participant

                    Hi Dawn…I live in Dunnellon I …actually I live between Dunnellon and Ocala! I am doing Dr Weber's trial- Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma   http://www.cancer.gov/clinicaltrials/search/view?cdrid=682183&version=healthprofessional

                    I  go to Moffitt and have Dr Weber. I wouldn't change doctors for anything! He is very informative and personable…easy to talk to. I know that all the docs there are not as helpful as he is…and I don't know if I would trust anyone else for my care. I also know it's impossible to change doctors once you start treatment there…Dr Weber answers his own e-mail and calls his patients…even on the weekends!

                    what's your status…how much melanoma do you have?

                     

                    They have this sister trial of mine for those who still have melanoma…http://www.cancer.gov/clinicaltrials/search/view?cdrid=682171&version=HealthProfessional&protocolsearchid=8828184

                    They also have the compassionate trial of Ipi down there…They have several trials…for me I won't do conventional chemo and opted to stay with immunotherapy …I did do some radiation, several months of Temodar and surgery before I landed here…it's a journey and I am so far blessed!

                    No one wants to die and so we pray and seek out the best possible treatments that our gut says will benefit us the most…I remember when Mayo Clinic said I had 6-9 months to live…I was in a panic for quite awhile…

                    what have you done so far and where is the melanoma located…where did it originate at…

                    Loading spinner
                    LynnLuc
                    Participant

                      Hi Dawn…I live in Dunnellon I …actually I live between Dunnellon and Ocala! I am doing Dr Weber's trial- Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma   http://www.cancer.gov/clinicaltrials/search/view?cdrid=682183&version=healthprofessional

                      I  go to Moffitt and have Dr Weber. I wouldn't change doctors for anything! He is very informative and personable…easy to talk to. I know that all the docs there are not as helpful as he is…and I don't know if I would trust anyone else for my care. I also know it's impossible to change doctors once you start treatment there…Dr Weber answers his own e-mail and calls his patients…even on the weekends!

                      what's your status…how much melanoma do you have?

                       

                      They have this sister trial of mine for those who still have melanoma…http://www.cancer.gov/clinicaltrials/search/view?cdrid=682171&version=HealthProfessional&protocolsearchid=8828184

                      They also have the compassionate trial of Ipi down there…They have several trials…for me I won't do conventional chemo and opted to stay with immunotherapy …I did do some radiation, several months of Temodar and surgery before I landed here…it's a journey and I am so far blessed!

                      No one wants to die and so we pray and seek out the best possible treatments that our gut says will benefit us the most…I remember when Mayo Clinic said I had 6-9 months to live…I was in a panic for quite awhile…

                      what have you done so far and where is the melanoma located…where did it originate at…

                      Loading spinner
                      dawn dion
                      Participant

                        Big Congrats on being NED!!!!!!  That is truly wonderful!   you mentioned you live in Florida – I do also, center of the state, Leesburg to be exact.  I was wondering about the treatment course you chose –  and where you get your treatmeants.   I go to Moffett and I'm planning to have a very big discussion this week with my dr. I have been given very little info on my options and I feel like I am being pushed one way or the other.    Any insight you could give me would be much appreciated.    I was recently dx stage 4 with two small girls and believe me this is extreamly frightening and confusing.    

                        Thanks

                        Hugs and Smiles :)

                        Dawn

                         

                        Loading spinner
                      JakeinNY
                      Participant

                        Congratulations. I hope that you overcome the mental part very soon too.

                        Best wishes for a long life, one day at a time.

                        Loading spinner
                        jag
                        Participant

                          Lynnluc, 

                          Very happy to hear that you are doing so well.

                          May you be NED for many years to come. 

                          Loading spinner
                          jag
                          Participant

                            Lynnluc, 

                            Very happy to hear that you are doing so well.

                            May you be NED for many years to come. 

                            Loading spinner
                            Suzan AB
                            Participant

                              Wonderful News!  I am so excited for you and thank you for giving us all so much hope.  Rock On Sista!

                              My best to you and yours,

                              Suzan AB

                              Stage IV, lung mets…in a holding pattern til Friday…

                              Loading spinner
                                Vermont_Donna
                                Participant

                                  Hi Lynnluc,

                                  Congrats on your treatment and almost NED status. I too am a social worker (LICSW) and have worked in child welfare. Most recently I worked as a mental health clinician in an elementary school, an alternative high school and an adult basice ed/alternative adult ed program. Busy to say the least. I left my job in December due to partaking in the Ipi clinical trial and not knowing how I would respond/react, also I have two poorly healing leg wounds (8 months duration so far) and am on narcotics for pain relief. Good luck to you rejoining the work force and doing the work you do…you are to be commended!!

                                  Vermont_Donna, stage 3a

                                  Loading spinner
                                  Vermont_Donna
                                  Participant

                                    Hi Lynnluc,

                                    Congrats on your treatment and almost NED status. I too am a social worker (LICSW) and have worked in child welfare. Most recently I worked as a mental health clinician in an elementary school, an alternative high school and an adult basice ed/alternative adult ed program. Busy to say the least. I left my job in December due to partaking in the Ipi clinical trial and not knowing how I would respond/react, also I have two poorly healing leg wounds (8 months duration so far) and am on narcotics for pain relief. Good luck to you rejoining the work force and doing the work you do…you are to be commended!!

                                    Vermont_Donna, stage 3a

                                    Loading spinner
                                  Suzan AB
                                  Participant

                                    Wonderful News!  I am so excited for you and thank you for giving us all so much hope.  Rock On Sista!

                                    My best to you and yours,

                                    Suzan AB

                                    Stage IV, lung mets…in a holding pattern til Friday…

                                    Loading spinner
                                    King
                                    Participant

                                      Congratulations!  You are doing great.  It's okay to push but not too hard…that body needs rest as well.  Take it from one who knows. :)

                                       

                                      Keep us posted and celebrate big!

                                       

                                      Stay Strong

                                      King

                                      Stage IV 7/05 Liver mets

                                      Loading spinner
                                      King
                                      Participant

                                        Congratulations!  You are doing great.  It's okay to push but not too hard…that body needs rest as well.  Take it from one who knows. :)

                                         

                                        Keep us posted and celebrate big!

                                         

                                        Stay Strong

                                        King

                                        Stage IV 7/05 Liver mets

                                        Loading spinner
                                    Viewing 9 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.