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How many of you have remained Stage 3?

Forums General Melanoma Community How many of you have remained Stage 3?

  • Post
    Jewel
    Participant

      Thanks to all of you ahead of time for taking the time to reply.

      My husband was diagnosed in Nov 2010 with Stage 3 melanoma. While he has remained NED since I wake up everyday with the fear that today is going to be the day it spreads…..it is so frustrating because you have so few choices at this stage.  Just need some encouragement.

       

      Thanks

       

      Thanks to all of you ahead of time for taking the time to reply.

      My husband was diagnosed in Nov 2010 with Stage 3 melanoma. While he has remained NED since I wake up everyday with the fear that today is going to be the day it spreads…..it is so frustrating because you have so few choices at this stage.  Just need some encouragement.

       

      Thanks

       

    Viewing 19 reply threads
    • Replies
        Carol Taylor
        Participant

          Jewel,

          I've been stage 3b since late 2008. My stage has not changed and I've been ned all this time.

          Can I talk to you a minute? I can tell you love your husband and are genuinely concerned about this returning. And he's stage 3 so you know all those pesky stats. It's been over a year now for him, please get a handle on your fear and frustration. More than likely he's aware of what you're feeling…either you've told him or he has picked up on it.

          All that projected fear and frustration coming from you, every day, isn't helping him or you. He really needs to stay as positive and hopeful as possible. Atttude is so important! Read this, it's a blog I wrote about developing an attitude that is helpful and it might help.

          http://letsgivethanks.blogspot.com/2010/11/benefits-of-attitude-of-gratitude.html

          Remember, he's not a lump of melanoma waiting to rear its ugly head and you're not the wife of a lump of melanoma. Don't let this run or ruin your lives. None of us are guaranteed another five minutes, with or without mel. Why waste your precious time? Live and love to the fullest why you both can!

          Lord, in Your mercy, you know what Jewel needs to ease her mind. Make it happen please. Thank You. Amen.

          Grace and peace Friend,

          Carol

            washoegal
            Participant

              Carol,

              I have never heard it put so well.  I always say I am not a statistic.  But your response was truly inspired!

              For the record Stage 3a for 16 months and planning on staying there. 

              Mary

              washoegal
              Participant

                Carol,

                I have never heard it put so well.  I always say I am not a statistic.  But your response was truly inspired!

                For the record Stage 3a for 16 months and planning on staying there. 

                Mary

              Carol Taylor
              Participant

                Jewel,

                I've been stage 3b since late 2008. My stage has not changed and I've been ned all this time.

                Can I talk to you a minute? I can tell you love your husband and are genuinely concerned about this returning. And he's stage 3 so you know all those pesky stats. It's been over a year now for him, please get a handle on your fear and frustration. More than likely he's aware of what you're feeling…either you've told him or he has picked up on it.

                All that projected fear and frustration coming from you, every day, isn't helping him or you. He really needs to stay as positive and hopeful as possible. Atttude is so important! Read this, it's a blog I wrote about developing an attitude that is helpful and it might help.

                http://letsgivethanks.blogspot.com/2010/11/benefits-of-attitude-of-gratitude.html

                Remember, he's not a lump of melanoma waiting to rear its ugly head and you're not the wife of a lump of melanoma. Don't let this run or ruin your lives. None of us are guaranteed another five minutes, with or without mel. Why waste your precious time? Live and love to the fullest why you both can!

                Lord, in Your mercy, you know what Jewel needs to ease her mind. Make it happen please. Thank You. Amen.

                Grace and peace Friend,

                Carol

                BethA in VA
                Participant

                  I'm sorry your husband dealswith this…and of course it has become such a part of your life.  I too am Stage 3B.  I am now NED since my surgery in 2004.  I did a clinical trial, but no matter, have remained NED now for many years.  I see the dermatologist every 6 mos, and the Melanoma Oncologist every 6 mos.  They will find anything within a very short time. 

                  Part of my worry is that I was diagnosed in 1993 and remained NED 10 1/2 years.  Then I got socked with Stage 3B/SNB/Surgery/Clinical Trial/and lots of appointments.  I am tired of dealing witht it., but know I'm one of the lucky ones.

                  I too worry every day.  If I hurt, I'm sure its back.  I live in fear, but I keep it tucked out of sight.  I don't want my kids/grandkids to worry with me, so I act ok.  That is the only way I can cope.

                  Good luck.  Worry but keep it under control.  It won't ever leave your thoughts, but find a place to fit LIFE in around it.  LIFE is much more fun!!      Beth 3/B

                  BethA in VA
                  Participant

                    I'm sorry your husband dealswith this…and of course it has become such a part of your life.  I too am Stage 3B.  I am now NED since my surgery in 2004.  I did a clinical trial, but no matter, have remained NED now for many years.  I see the dermatologist every 6 mos, and the Melanoma Oncologist every 6 mos.  They will find anything within a very short time. 

                    Part of my worry is that I was diagnosed in 1993 and remained NED 10 1/2 years.  Then I got socked with Stage 3B/SNB/Surgery/Clinical Trial/and lots of appointments.  I am tired of dealing witht it., but know I'm one of the lucky ones.

                    I too worry every day.  If I hurt, I'm sure its back.  I live in fear, but I keep it tucked out of sight.  I don't want my kids/grandkids to worry with me, so I act ok.  That is the only way I can cope.

                    Good luck.  Worry but keep it under control.  It won't ever leave your thoughts, but find a place to fit LIFE in around it.  LIFE is much more fun!!      Beth 3/B

                    CarolA
                    Participant

                      I've been Stage III since February 2005, WLE, SNB (two nodes small detection of mel–at this point I can't remember the verbage:  micro? in the nodes, small is what sticks with me).  Total LND in October 2005, no evidence of mel in 26 nodes removed.   No interferon.   Just 3-month check-ups, graduated to 6-month, detection of recurrences on my left breast, mastectomy choice in May 2008, NED since then.  Still no interferon.   6-month checkups, I may graduate, hopefully, to one-year upon July visit.  

                      I'm always praying, thankful, amazed, praying, hopeful, "positive", happy….and I'm always afraid.   Somehow, I don't know how, you learn to live with it.    Haven't learned to cope with scanxiety yet;   I don't think that goes away.  

                      While I know it is lurking behind me, I can't see it except by adjusting my rear-view mirrors.  It used to be right there, at any sideways glance.    Yes, every ache and pang—I wonder and start to worry.   I'm 62 now, and I guess those pangs are becoming more prevalent (so my peers tell me!!).    Some wise person here on the board (Janner I think) says give it a week—so I do.   I give the one-time dizziness, the weird twinges in my surgical areas, the "omg, do I feel something there?", the left-side pain, the right-side pain——I give them a week, and they go away and I forget about them.   Practice makes perfect.

                      I also think I got pissed off, letting mel rule my life and ruin my days, my GOOD days.   You'll give yourself lectures and you'll give mel less of your time, in time.    Another wise person said a long time ago(BarbaraGA), while I was in the middle of the pity pool—-IF these are your (his) last days, is this the way you would want to spend them, letting mel have the control (when in fact it does not at this moment)?   I'm paraphrasing her words.

                      Good luck, God bless and enjoy this holiday weekend and the many more ahead for you and your husband!   Vent away here.   This is what we do and need to do!

                      CarolA – Stage III
                      Amherst, NY

                      FormerCaregiver
                      Participant

                        Welcome to our forum. You have come to the best place for melanoma info and support. There
                        are many wonderful people here who continue to defy the statistics.

                        If you could complete the profile page for your husband, that would help us to help you
                        better. Do you know the depth of his primary lesion? Is he seeing a melanoma specialist?

                        Melanoma research has advanced a great deal over the last few years, and new treatments
                        are available through clinical trials.

                        Best wishes.

                        Frank from Australia

                        CarolA
                        Participant

                          I've been Stage III since February 2005, WLE, SNB (two nodes small detection of mel–at this point I can't remember the verbage:  micro? in the nodes, small is what sticks with me).  Total LND in October 2005, no evidence of mel in 26 nodes removed.   No interferon.   Just 3-month check-ups, graduated to 6-month, detection of recurrences on my left breast, mastectomy choice in May 2008, NED since then.  Still no interferon.   6-month checkups, I may graduate, hopefully, to one-year upon July visit.  

                          I'm always praying, thankful, amazed, praying, hopeful, "positive", happy….and I'm always afraid.   Somehow, I don't know how, you learn to live with it.    Haven't learned to cope with scanxiety yet;   I don't think that goes away.  

                          While I know it is lurking behind me, I can't see it except by adjusting my rear-view mirrors.  It used to be right there, at any sideways glance.    Yes, every ache and pang—I wonder and start to worry.   I'm 62 now, and I guess those pangs are becoming more prevalent (so my peers tell me!!).    Some wise person here on the board (Janner I think) says give it a week—so I do.   I give the one-time dizziness, the weird twinges in my surgical areas, the "omg, do I feel something there?", the left-side pain, the right-side pain——I give them a week, and they go away and I forget about them.   Practice makes perfect.

                          I also think I got pissed off, letting mel rule my life and ruin my days, my GOOD days.   You'll give yourself lectures and you'll give mel less of your time, in time.    Another wise person said a long time ago(BarbaraGA), while I was in the middle of the pity pool—-IF these are your (his) last days, is this the way you would want to spend them, letting mel have the control (when in fact it does not at this moment)?   I'm paraphrasing her words.

                          Good luck, God bless and enjoy this holiday weekend and the many more ahead for you and your husband!   Vent away here.   This is what we do and need to do!

                          CarolA – Stage III
                          Amherst, NY

                            Vermont_Donna
                            Participant

                              Hi,

                              I was diagnosed 5 years ago this August as stage 3a….but the funny looking mole that was a newly erupted mole was there for 6 months prior to removal…..so 5 years stage 3a. Look to my profile for more info.

                              Thanks, and hang in there, it truly does become in some instances a disease you learn to manage….

                              Vermont_Donna, stage 3a, NED

                              Vermont_Donna
                              Participant

                                Hi,

                                I was diagnosed 5 years ago this August as stage 3a….but the funny looking mole that was a newly erupted mole was there for 6 months prior to removal…..so 5 years stage 3a. Look to my profile for more info.

                                Thanks, and hang in there, it truly does become in some instances a disease you learn to manage….

                                Vermont_Donna, stage 3a, NED

                              FormerCaregiver
                              Participant

                                Welcome to our forum. You have come to the best place for melanoma info and support. There
                                are many wonderful people here who continue to defy the statistics.

                                If you could complete the profile page for your husband, that would help us to help you
                                better. Do you know the depth of his primary lesion? Is he seeing a melanoma specialist?

                                Melanoma research has advanced a great deal over the last few years, and new treatments
                                are available through clinical trials.

                                Best wishes.

                                Frank from Australia

                                nicoli
                                Participant

                                  Stage 3b since December 29, 2009, so about 17 months. One local recurrence (4 tumors popped at the same time in the same place).

                                  Surgeries (3, not counting biopsies), biochemo, radiation.

                                  Nicki

                                  nicoli
                                  Participant

                                    Stage 3b since December 29, 2009, so about 17 months. One local recurrence (4 tumors popped at the same time in the same place).

                                    Surgeries (3, not counting biopsies), biochemo, radiation.

                                    Nicki

                                    [email protected]
                                    Participant

                                      On May 30, it will be 11 years since my original biopsy where I started my stage 3 journey. I had micro amounts of mm in one sentinel node and the remaining 17 they later removed were clean. I did a year of Interferon that ended in 8/01. I just saw my oncologist at the beginning of May and after blood work and a chest Xray was determined to STILL be NED!!! 

                                      Health wise, things have always been ok. Emotionally, it has sometimes been a roller coaster, especially in the beginning. You just have to live life to the fullest.

                                      Good luck!

                                      Cara

                                      [email protected]
                                      Participant

                                        On May 30, it will be 11 years since my original biopsy where I started my stage 3 journey. I had micro amounts of mm in one sentinel node and the remaining 17 they later removed were clean. I did a year of Interferon that ended in 8/01. I just saw my oncologist at the beginning of May and after blood work and a chest Xray was determined to STILL be NED!!! 

                                        Health wise, things have always been ok. Emotionally, it has sometimes been a roller coaster, especially in the beginning. You just have to live life to the fullest.

                                        Good luck!

                                        Cara

                                        RMcLegal
                                        Participant

                                          I was diagnosed Stage IIIc in 2003, and I'm still here and NED after doing a neoadjuvant biochemo trial.  Hang in there.

                                          Rich

                                          http://www.hotelmelanoma.blogspot.com

                                          RMcLegal
                                          Participant

                                            I was diagnosed Stage IIIc in 2003, and I'm still here and NED after doing a neoadjuvant biochemo trial.  Hang in there.

                                            Rich

                                            http://www.hotelmelanoma.blogspot.com

                                            DebbieH
                                            Participant

                                              It's hard to get over worrying over everything but it gets better with more time behind you and that diagnosis.  I'm stage IIIC and have been NED over 9 1/2 years now.  I like to say "so far so good", as you just never know but I have to say I rarely think about it anymore.  I also found it was just pointless to worry about something you have no control over. 

                                              Good luck to you – it's not an easy road we're on.

                                              DebbieH, stage IIIC, NED 9 1/2+ years after interferon and no scans

                                              DebbieH
                                              Participant

                                                It's hard to get over worrying over everything but it gets better with more time behind you and that diagnosis.  I'm stage IIIC and have been NED over 9 1/2 years now.  I like to say "so far so good", as you just never know but I have to say I rarely think about it anymore.  I also found it was just pointless to worry about something you have no control over. 

                                                Good luck to you – it's not an easy road we're on.

                                                DebbieH, stage IIIC, NED 9 1/2+ years after interferon and no scans

                                                Cynthia C
                                                Participant

                                                  10 years, 3 months, right lower leg primary with 2 positive groin nodes, only treatment was 9 doses of interferon, no recurrences. I do not have a significant other so I don't know how they would feel. I am very aware that it could show up again at any time but truly I think my life has just gone on as normal. Too normal, actually. Today I took myself to the ER with what turned out to be cellulitis in my "fat" leg. Even after 10 years you have to give a little extra TLC to the lymphedema extremity! Best wishes to you and your husband.

                                                  Cynthia C

                                                  Cynthia C
                                                  Participant

                                                    10 years, 3 months, right lower leg primary with 2 positive groin nodes, only treatment was 9 doses of interferon, no recurrences. I do not have a significant other so I don't know how they would feel. I am very aware that it could show up again at any time but truly I think my life has just gone on as normal. Too normal, actually. Today I took myself to the ER with what turned out to be cellulitis in my "fat" leg. Even after 10 years you have to give a little extra TLC to the lymphedema extremity! Best wishes to you and your husband.

                                                    Cynthia C

                                                    Jim M.
                                                    Participant

                                                      I've been stage 3C since 11/2007 and have had no recurrences. I've been NED for 3 years, 7 months. I had  an LND to the right axillary, radiation and Ipi with vaccines.

                                                       God Bless,

                                                       Jim M.

                                                        Maddy 95
                                                        Participant

                                                          I am new to this 3 weeks since diagnosed stage 3 . Can someone explain the Lingo. NED and etc. It frustrating. Maddy

                                                          Linny
                                                          Participant

                                                            NED = No Evidence of Disease. Just a less formal way saying "remission".

                                                            It's a great place to be!

                                                            Linny
                                                            Participant

                                                              NED = No Evidence of Disease. Just a less formal way saying "remission".

                                                              It's a great place to be!

                                                              Linny
                                                              Participant

                                                                NED = No Evidence of Disease. Just a less formal way saying "remission".

                                                                It's a great place to be!

                                                                Jmchandl
                                                                Participant
                                                                  I am glad you asked because I didn’t know either.
                                                                  Maddy 95
                                                                  Participant

                                                                    I am new to this 3 weeks since diagnosed stage 3 . Can someone explain the Lingo. NED and etc. It frustrating. Maddy

                                                                    Maddy 95
                                                                    Participant

                                                                      I am new to this 3 weeks since diagnosed stage 3 . Can someone explain the Lingo. NED and etc. It frustrating. Maddy

                                                                    Jim M.
                                                                    Participant

                                                                      I've been stage 3C since 11/2007 and have had no recurrences. I've been NED for 3 years, 7 months. I had  an LND to the right axillary, radiation and Ipi with vaccines.

                                                                       God Bless,

                                                                       Jim M.

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