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Still NED 5 years after going Stage IV

Forums General Melanoma Community Still NED 5 years after going Stage IV

  • Post
    ed_CT
    Participant

      More good news to share with "the community".   Just had my latest CAT scans and I'm still NED now just over 5 years since going Stage IV, 6 years since initial diagnosis at Stage III.    A brief history-  Diagnosed with Melanoma on left ear  Sept 2004.  One sentinal node microscopic involvement.   Went on a Cancer Vax trial in Jan 2005.   Scans 6 months later showed it had spread to liver and neck.  Had tumor removed from Neck – left Mel in liver so I could do a trial.   Started tri

      More good news to share with "the community".   Just had my latest CAT scans and I'm still NED now just over 5 years since going Stage IV, 6 years since initial diagnosis at Stage III.    A brief history-  Diagnosed with Melanoma on left ear  Sept 2004.  One sentinal node microscopic involvement.   Went on a Cancer Vax trial in Jan 2005.   Scans 6 months later showed it had spread to liver and neck.  Had tumor removed from Neck – left Mel in liver so I could do a trial.   Started trial of Nexavar and Temodar.   Also went on an almost Vegan diet (ate some fish) and started taking Tumeric supplements.   Within 4 months liver Met had shrunk to "scar tissue".  Stayed on drugs at full strength for 1 year.   After 1 year they reduced the Nexavar dose by 1/2 and kept Temodar the same.  Stayed on this regimen for another year and then dropped the Temodar (this ended my involvement in trial).   Stayed on the Nexavar alone (still 1/2 dose with lots of breaks – more as time wore on) until I finally ended it in Dec 2009.   I still take Tumeric but not as regularly as I probably should and I have started eating some meat, eggs – dairy in the last couple years  although I still eat lots of vegitables and drink soy milk and avoid meat most of the time thanks to a very good wife (I guess she still wants to keep me around).  Unfortunately from what I understand out of 146 people in my trial of Nexavar / Temodar,  I was the only one with a "complete response".  I'm sorry it didn't work out for more people. I'm a little disappointed that my Onc at Yale still thinks I should get scanned in six months but I guess caution is a good thing.   Maybe I can convince the people at U of Penn I see to let me go 9 months.  

      Hope this post gives people here some  bit of inspiration.   There a quite a few of us "Stage IV" survivors lurking on this board.  

       

      Best wishes

      Ed from Connecticut ("Ed_CT" – formerly just "Ed" until they forced me to change it.)

    Viewing 27 reply threads
    • Replies
        Jaime.30
        Participant

          This gives me hope for my husband who also had his melanoma start on his ear and had one microscopic positive node. Still at stage III right now but recently had what was thought to be Melanoma in  the brain.  Your story helps me to see that becoming stage IV does not mean it is game over.  I am newer to the board so thank you for sharing your story.  As his wife that worries me everyday…Stage IV.  He pretty much says so what I can fight just as well at stage IV as I am doing at stage III.  I am the worrier of the two of us.  Again Thank you. Jaime

          Jaime.30
          Participant

            This gives me hope for my husband who also had his melanoma start on his ear and had one microscopic positive node. Still at stage III right now but recently had what was thought to be Melanoma in  the brain.  Your story helps me to see that becoming stage IV does not mean it is game over.  I am newer to the board so thank you for sharing your story.  As his wife that worries me everyday…Stage IV.  He pretty much says so what I can fight just as well at stage IV as I am doing at stage III.  I am the worrier of the two of us.  Again Thank you. Jaime

            lhaley
            Participant

              Thank you for sharing your great news!!!  It's so nice to hear long term stage IV survivors!!  We don't often here success stories once the mets have gone to the liver, very happy for you and your wife!

              Linda

              stage IV – surgery on Friday

              lhaley
              Participant

                Thank you for sharing your great news!!!  It's so nice to hear long term stage IV survivors!!  We don't often here success stories once the mets have gone to the liver, very happy for you and your wife!

                Linda

                stage IV – surgery on Friday

                James from Sydney
                Participant

                  Hi Ed , great to hear your news. 

                  best wishes

                  James

                  James from Sydney
                  Participant

                    Hi Ed , great to hear your news. 

                    best wishes

                    James

                    King
                    Participant

                      Ed,

                       

                      This is great news and thanks for sharing it!  I'm sure you've given hope to many.  I, too, have been Stage IV for over 5 years now….NED for the last 2.  I've recently moved to 4 month scans.

                       

                      Celebrate this wonderful news!

                       

                      Stay Strong
                      King

                      Stage IV 7/05 Liver mets

                      King
                      Participant

                        Ed,

                         

                        This is great news and thanks for sharing it!  I'm sure you've given hope to many.  I, too, have been Stage IV for over 5 years now….NED for the last 2.  I've recently moved to 4 month scans.

                         

                        Celebrate this wonderful news!

                         

                        Stay Strong
                        King

                        Stage IV 7/05 Liver mets

                        KellieSue
                        Participant

                          So glad to hear of your latest NED results!

                          Thanks for posting and giving hope.

                          Kellie(from iowa) Stage IV

                          KellieSue
                          Participant

                            So glad to hear of your latest NED results!

                            Thanks for posting and giving hope.

                            Kellie(from iowa) Stage IV

                            lovingwifedeb
                            Participant

                              Thank you Ed for posting this.

                              There seems to be lots of tragedy on this board lately. I know it becomes reality for some but it's hard to read and look into my husband's eyes the one who has this damning disease and plan for our future.  Your news is encouraging to both of us and I just wanted to thank you for letting everyone know that you are also treating your body with nutrition in trying to keep your immunity in the best shape possible. My husband has at last had his appointment with an internist/director of our local hospital's alternative medicine's cancer center. This doctor believes in the Mediterraen diet as the best way to build up an immune system that has been beaten down by cancer, the basics of cooking with Extra Virgin OLIVE OIL, no enriched flour, less red meat, lots of fruits and vegetables, more fish, NO PROCESSED FOODS and NO SUGAR. Did you know that CANCER LIKES SUGAR? I didn't. That pet scan that everyone is taking? Those "techs" inject you with iradiated dye & SUGAR because the cancer cells are attracted to it, that's how they find those cancer cells….  go figure…

                              We are learning everything we can about the body and cancer and how to supercharge my husband's immune system to give it the best fighting chance. We are very surprised to say the least at what we are finding out. I hope my husband can come back here like you and testify and be encouraging to others. But for now we are learning how to cook all over again. And yes… TUMERIC is also included with our meals along with other spices and vitamins.

                              Peace be with you and good will,

                              Deb

                              lovingwife to Bob, stage 3c

                              lovingwifedeb
                              Participant

                                Thank you Ed for posting this.

                                There seems to be lots of tragedy on this board lately. I know it becomes reality for some but it's hard to read and look into my husband's eyes the one who has this damning disease and plan for our future.  Your news is encouraging to both of us and I just wanted to thank you for letting everyone know that you are also treating your body with nutrition in trying to keep your immunity in the best shape possible. My husband has at last had his appointment with an internist/director of our local hospital's alternative medicine's cancer center. This doctor believes in the Mediterraen diet as the best way to build up an immune system that has been beaten down by cancer, the basics of cooking with Extra Virgin OLIVE OIL, no enriched flour, less red meat, lots of fruits and vegetables, more fish, NO PROCESSED FOODS and NO SUGAR. Did you know that CANCER LIKES SUGAR? I didn't. That pet scan that everyone is taking? Those "techs" inject you with iradiated dye & SUGAR because the cancer cells are attracted to it, that's how they find those cancer cells….  go figure…

                                We are learning everything we can about the body and cancer and how to supercharge my husband's immune system to give it the best fighting chance. We are very surprised to say the least at what we are finding out. I hope my husband can come back here like you and testify and be encouraging to others. But for now we are learning how to cook all over again. And yes… TUMERIC is also included with our meals along with other spices and vitamins.

                                Peace be with you and good will,

                                Deb

                                lovingwife to Bob, stage 3c

                                esposir2
                                Participant

                                  Thats great news  Ed from Ct. I too am treated at yale. I am stage IV with mets to the liver. I am on the XL-184 trial at yale. Who do you see there?

                                  esposir2
                                  Participant

                                    Thats great news  Ed from Ct. I too am treated at yale. I am stage IV with mets to the liver. I am on the XL-184 trial at yale. Who do you see there?

                                      ed_CT
                                      Participant

                                        I see Dr. Mario Sznol.   He's great.  Very informative and personable.

                                        How long have you been on the XL-184 trial.  I'm not familar with it.  I guess I'll do a little research.

                                        Ed

                                        ed_CT
                                        Participant

                                          I see Dr. Mario Sznol.   He's great.  Very informative and personable.

                                          How long have you been on the XL-184 trial.  I'm not familar with it.  I guess I'll do a little research.

                                          Ed

                                          esposir2
                                          Participant

                                            Yes I have met Dr. Sznol. I see Harriet Kluger.They are both wonderful. I have been on the XL-184 for about 5 months.

                                            esposir2
                                            Participant

                                              Yes I have met Dr. Sznol. I see Harriet Kluger.They are both wonderful. I have been on the XL-184 for about 5 months.

                                            BethA in VA
                                            Participant

                                              Yea on the good NED report.  And keep the scan at 6 mos if that is what the Dr. says.  Getting scanned means if anything does go wrong it can be taken care of much faster.  Good luck.  I'm happy for you.  Beth 3/B ( was NED for 10 1/2 years – now almost 6 yrs NED)

                                              BethA in VA
                                              Participant

                                                Yea on the good NED report.  And keep the scan at 6 mos if that is what the Dr. says.  Getting scanned means if anything does go wrong it can be taken care of much faster.  Good luck.  I'm happy for you.  Beth 3/B ( was NED for 10 1/2 years – now almost 6 yrs NED)

                                                himynameiskevin
                                                Participant

                                                  Thank you and congratulations. This is great to here.

                                                  himynameiskevin
                                                  Participant

                                                    Thank you and congratulations. This is great to here.

                                                    ssorenson
                                                    Participant

                                                      Thank you Ed from Conn. It was great to hear your story.  I hope you are still doing well.  I too am a survivor and wanted to also share my story of hope.  I hope that we can continue to have contact and share our journey.  Sue from Florida

                                                       

                                                      I was diagnosed with malignant melanoma in November, 2003. I had a small spot by  my left eyebrow which appeared like a blackhead.  Two doctors told me it was nothing; it was only because of the location, my vanity and my husband’s concern that I insisted that it be removed.  .  To touch, it felt like a very small bebe under the skin. It was biopsied, with a postivie result for melanoma.  That phone call from the doctor will forever echo in my memory.  The oncologist believes this was not a primary site due to the depth of the tumor.  The primary site was never found.  I had 2 more surgeries to clear the margins. My lymph nodes in my neck were removed and checked with dye and were clear.   I completed a year of interferon therapy. I was cancer free (NED no evidence of disease) for almost 5 years, until July 08. A routine PET scan identified a spot on my liver.  Part of my liver and all of my gallbladder were removed.  Two opinions said there was no recommended treatment since at this time there is no evidence of disease.  I was very thankful for this as I didn’t want to begin putting poisons back in my body.  I began a quest to build my immune system and to to cleanse my body with a diet free of white flour, sugar, meats and processed foods.  I strive to eat a high alkaline diet rich in live foods.    I exercise daily and keep a positive attitude.  I never forget that God is in control and am thankful daily for his grace.  I am grateful for my husband, children, family and friends for their endless support and encouragment.  Each day is a gift, live in the present and embrace each moment.  We can beat this, believe…Jy liver and all of my gallbladder. I have been cancer free for on 1 year now. Doc says he got it all. Right now it is Stage 4 metastasis melanoma NED (no evidence of disease). I run 1-3 miles per day. Eat very healthy and maintain a positive attitude. I would love to share my healthy eating things that I believe are working. At the time of surgery there was another spot on my liver that they couldn't remove due to location. It is totally gone now. Doctor can't explain it.y liver and all of my gallbladder. I have been cancer free for on 1 year now. Doc says he got it all. Right now it is Stage 4 metastasis melanoma NED (no evidence of disease). I run 1-3 miles per day. Eat very healthy and maintain a positive attitude. I would love to share my healthy eating things that I believe are working. At the time of surgery there was another spot on my liver that they couldn't remove due to location. It is totally gone now. Doctor can't explain

                                                      ssorenson
                                                      Participant

                                                        Thank you Ed from Conn. It was great to hear your story.  I hope you are still doing well.  I too am a survivor and wanted to also share my story of hope.  I hope that we can continue to have contact and share our journey.  Sue from Florida

                                                         

                                                        I was diagnosed with malignant melanoma in November, 2003. I had a small spot by  my left eyebrow which appeared like a blackhead.  Two doctors told me it was nothing; it was only because of the location, my vanity and my husband’s concern that I insisted that it be removed.  .  To touch, it felt like a very small bebe under the skin. It was biopsied, with a postivie result for melanoma.  That phone call from the doctor will forever echo in my memory.  The oncologist believes this was not a primary site due to the depth of the tumor.  The primary site was never found.  I had 2 more surgeries to clear the margins. My lymph nodes in my neck were removed and checked with dye and were clear.   I completed a year of interferon therapy. I was cancer free (NED no evidence of disease) for almost 5 years, until July 08. A routine PET scan identified a spot on my liver.  Part of my liver and all of my gallbladder were removed.  Two opinions said there was no recommended treatment since at this time there is no evidence of disease.  I was very thankful for this as I didn’t want to begin putting poisons back in my body.  I began a quest to build my immune system and to to cleanse my body with a diet free of white flour, sugar, meats and processed foods.  I strive to eat a high alkaline diet rich in live foods.    I exercise daily and keep a positive attitude.  I never forget that God is in control and am thankful daily for his grace.  I am grateful for my husband, children, family and friends for their endless support and encouragment.  Each day is a gift, live in the present and embrace each moment.  We can beat this, believe…Jy liver and all of my gallbladder. I have been cancer free for on 1 year now. Doc says he got it all. Right now it is Stage 4 metastasis melanoma NED (no evidence of disease). I run 1-3 miles per day. Eat very healthy and maintain a positive attitude. I would love to share my healthy eating things that I believe are working. At the time of surgery there was another spot on my liver that they couldn't remove due to location. It is totally gone now. Doctor can't explain it.y liver and all of my gallbladder. I have been cancer free for on 1 year now. Doc says he got it all. Right now it is Stage 4 metastasis melanoma NED (no evidence of disease). I run 1-3 miles per day. Eat very healthy and maintain a positive attitude. I would love to share my healthy eating things that I believe are working. At the time of surgery there was another spot on my liver that they couldn't remove due to location. It is totally gone now. Doctor can't explain

                                                          Sadiya
                                                          Participant
                                                            Hi..pls share ur diet:)
                                                          Rocco
                                                          Participant
                                                            Clinical Trial ParticipantNED

                                                            Thanks for sharing your great news Ed.  I too am Stage IV and I appreciate these types of updates.  Keeps my spirits up and hope alive.  Congrats!

                                                             

                                                            Rocco – Stage IV

                                                            Rocco
                                                            Participant
                                                              Clinical Trial ParticipantNED

                                                              Thanks for sharing your great news Ed.  I too am Stage IV and I appreciate these types of updates.  Keeps my spirits up and hope alive.  Congrats!

                                                               

                                                              Rocco – Stage IV

                                                              joy_
                                                              Participant

                                                                Thanks for sharing your good news here!  It is encouraging.

                                                                joy_
                                                                Participant

                                                                  Thanks for sharing your good news here!  It is encouraging.

                                                                  NancyGM
                                                                  Participant

                                                                    Ed, I , too, had melanoma start on my left ear. I have been stage IV for 4 years (thoracotomy, 10 rounds of Temodar) and NED for 3 years. I have been vegan for 2.5 years and hope that helps as I have been off any adjuvent therapy for 3 years now. Best of luck to you for many NED years to come!

                                                                    NancyGM
                                                                    Participant

                                                                      Ed, I , too, had melanoma start on my left ear. I have been stage IV for 4 years (thoracotomy, 10 rounds of Temodar) and NED for 3 years. I have been vegan for 2.5 years and hope that helps as I have been off any adjuvent therapy for 3 years now. Best of luck to you for many NED years to come!

                                                                      W.
                                                                      Participant

                                                                        The original post is from October 2010…

                                                                        W.
                                                                        Participant

                                                                          The original post is from October 2010…

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