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5 years Stage 4
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5 years Stage 4

› Forums › General Melanoma Community › 5 years Stage 4

  • Post
    • March 2, 2016 at 7:17 pm
    Erinmay22
    Participant

      Hi Folks –

      I know I've been MIA lately!  Some folks that have been around here awhile may remember me! (I keep a blog: http://www.melanomaandthecity.blogspot.com).  I just thought as we go thru navigating this awful disease, a little good news never hurts, right?  March 1, 2011 I had a VAT's procedure done at Sloan Kettering to see if Melanoma had spread to my lungs.  That biopsy would confirm I was now stage 4.  As we know (Thanks Dr Google), statistics for stage 4 would give me about a 10% chance of still being here today.  I would have the lung mets go away on their own, only to have another tumor come back in my small intestine (May 2012).

      Since then, I did Zelboraf, 4 doses of Ipi, and 2.5 years (41 doses) of Merck's Anti-PD1 Keytruda as part of a Phase 1 Clinical Trial.  I stopped that trial last May.  I continue to have stable scans (nothing new or growing).  They won't claim NED since I have swollen lymph nodes in my abdomen.  Those aren't easy to biopsy but they are pretty sure are dead disease.

      Anyway, just wanted to share some good news.  Slowly trying to catch up a little on these forums!  (now that I don't travel full time for work).

      Thanks,
      Erin

    Viewing 26 reply threads
    • Replies
        • March 2, 2016 at 7:20 pm
        gregor913
        Participant
          That is fantastic news. I was having a off day emotionally. But this makes me feel like there is hope.
          Cheers greg
          • March 2, 2016 at 7:20 pm
          gregor913
          Participant
            That is fantastic news. I was having a off day emotionally. But this makes me feel like there is hope.
            Cheers greg
              • March 4, 2016 at 5:56 pm
              Erinmay22
              Participant

                Sorry for the emotional day.  Good days and great days, right?  Hang in there!

                • March 4, 2016 at 5:56 pm
                Erinmay22
                Participant

                  Sorry for the emotional day.  Good days and great days, right?  Hang in there!

                  • March 4, 2016 at 5:56 pm
                  Erinmay22
                  Participant

                    Sorry for the emotional day.  Good days and great days, right?  Hang in there!

                  • March 2, 2016 at 7:20 pm
                  gregor913
                  Participant
                    That is fantastic news. I was having a off day emotionally. But this makes me feel like there is hope.
                    Cheers greg
                    • March 3, 2016 at 1:05 am
                    jennunicorn
                    Participant

                      Always glad to hear positive news! Congrats!

                      • March 3, 2016 at 1:05 am
                      jennunicorn
                      Participant

                        Always glad to hear positive news! Congrats!

                        • March 3, 2016 at 1:05 am
                        jennunicorn
                        Participant

                          Always glad to hear positive news! Congrats!

                          • March 3, 2016 at 1:55 am
                          Maria C
                          Participant

                            Thanks so much for sharing, Erin, and the link to your blog. For those of us who are new to all this (Dx + MPIP), it's extremely helpful & hopeful to read success stories. Congratulations on your good news!!!

                            I also found your post "Get Busy Living!" especially relevant right now, as I'm currently dealing with a bout of pneumonitis (grade 2) as well as fatigue, etc. I am trying to get used to my new reality, as it looks like I aged 20 years in the last month (grey eyebrows, grey eyelashes, thinning hair….). Your post talks about your hair growing back, so there's hope on the cosmetic level too 🙂 As soon as this breathing clears up I plan to "get busy living" again – but with a forever-changed face/body…

                            Re; the NED claim … from what I am learning (getting my head around) is that immunotherapy treatment doesn't work like chemo when it comes to the scans, because as you point out dead tissue in melanoma scans may camouflage a true "NED" result? And unlike standard chemo that kills the cancer cells outright and allows survivors to get on with their futures when remission is declared, melanoma is relentlessly unpredictable and NED or NED-like scans are just a rest step in a long & tumultous journey…. 

                            Does that sound right??

                              • March 4, 2016 at 5:58 pm
                              Erinmay22
                              Participant

                                Maria – Glad you enjoyed that post.  Does sound about right.  There is lots of talk of this being treated more like a manageable disease than a cure or NED/Remission status.  Guess we'll take it?  Doesn't help with the fear.  But these immunotherapies are still so new… maybe over time they will be able to prove durable long term responses and claim NED?  But at least we seem to be heading in the right direction?

                                • March 4, 2016 at 5:58 pm
                                Erinmay22
                                Participant

                                  Maria – Glad you enjoyed that post.  Does sound about right.  There is lots of talk of this being treated more like a manageable disease than a cure or NED/Remission status.  Guess we'll take it?  Doesn't help with the fear.  But these immunotherapies are still so new… maybe over time they will be able to prove durable long term responses and claim NED?  But at least we seem to be heading in the right direction?

                                  • March 5, 2016 at 2:09 pm
                                  tschmith
                                  Participant

                                    Hi Erin!

                                     I'm in the same boat as you…not technically NED because of a couple of small spots in my abdomen that have showed no uptake on my last two PETs. I was taken off Keytruda in June of 2015 (after a year) and so far so good!  Melanoma had made it's home in my brain, lungs, spine and more.  I can say that I'm thrilled and am marveling at the miracle of immunotherapy.  Have a lot of hope that in the future we will look back and see many durable responses.  Yes, I think we're heading in the right direction for those of us battling cancer!

                                    Terrie

                                    • March 5, 2016 at 2:09 pm
                                    tschmith
                                    Participant

                                      Hi Erin!

                                       I'm in the same boat as you…not technically NED because of a couple of small spots in my abdomen that have showed no uptake on my last two PETs. I was taken off Keytruda in June of 2015 (after a year) and so far so good!  Melanoma had made it's home in my brain, lungs, spine and more.  I can say that I'm thrilled and am marveling at the miracle of immunotherapy.  Have a lot of hope that in the future we will look back and see many durable responses.  Yes, I think we're heading in the right direction for those of us battling cancer!

                                      Terrie

                                      • March 5, 2016 at 2:09 pm
                                      tschmith
                                      Participant

                                        Hi Erin!

                                         I'm in the same boat as you…not technically NED because of a couple of small spots in my abdomen that have showed no uptake on my last two PETs. I was taken off Keytruda in June of 2015 (after a year) and so far so good!  Melanoma had made it's home in my brain, lungs, spine and more.  I can say that I'm thrilled and am marveling at the miracle of immunotherapy.  Have a lot of hope that in the future we will look back and see many durable responses.  Yes, I think we're heading in the right direction for those of us battling cancer!

                                        Terrie

                                        • March 4, 2016 at 5:58 pm
                                        Erinmay22
                                        Participant

                                          Maria – Glad you enjoyed that post.  Does sound about right.  There is lots of talk of this being treated more like a manageable disease than a cure or NED/Remission status.  Guess we'll take it?  Doesn't help with the fear.  But these immunotherapies are still so new… maybe over time they will be able to prove durable long term responses and claim NED?  But at least we seem to be heading in the right direction?

                                        • March 3, 2016 at 1:55 am
                                        Maria C
                                        Participant

                                          Thanks so much for sharing, Erin, and the link to your blog. For those of us who are new to all this (Dx + MPIP), it's extremely helpful & hopeful to read success stories. Congratulations on your good news!!!

                                          I also found your post "Get Busy Living!" especially relevant right now, as I'm currently dealing with a bout of pneumonitis (grade 2) as well as fatigue, etc. I am trying to get used to my new reality, as it looks like I aged 20 years in the last month (grey eyebrows, grey eyelashes, thinning hair….). Your post talks about your hair growing back, so there's hope on the cosmetic level too 🙂 As soon as this breathing clears up I plan to "get busy living" again – but with a forever-changed face/body…

                                          Re; the NED claim … from what I am learning (getting my head around) is that immunotherapy treatment doesn't work like chemo when it comes to the scans, because as you point out dead tissue in melanoma scans may camouflage a true "NED" result? And unlike standard chemo that kills the cancer cells outright and allows survivors to get on with their futures when remission is declared, melanoma is relentlessly unpredictable and NED or NED-like scans are just a rest step in a long & tumultous journey…. 

                                          Does that sound right??

                                          • March 3, 2016 at 1:55 am
                                          Maria C
                                          Participant

                                            Thanks so much for sharing, Erin, and the link to your blog. For those of us who are new to all this (Dx + MPIP), it's extremely helpful & hopeful to read success stories. Congratulations on your good news!!!

                                            I also found your post "Get Busy Living!" especially relevant right now, as I'm currently dealing with a bout of pneumonitis (grade 2) as well as fatigue, etc. I am trying to get used to my new reality, as it looks like I aged 20 years in the last month (grey eyebrows, grey eyelashes, thinning hair….). Your post talks about your hair growing back, so there's hope on the cosmetic level too 🙂 As soon as this breathing clears up I plan to "get busy living" again – but with a forever-changed face/body…

                                            Re; the NED claim … from what I am learning (getting my head around) is that immunotherapy treatment doesn't work like chemo when it comes to the scans, because as you point out dead tissue in melanoma scans may camouflage a true "NED" result? And unlike standard chemo that kills the cancer cells outright and allows survivors to get on with their futures when remission is declared, melanoma is relentlessly unpredictable and NED or NED-like scans are just a rest step in a long & tumultous journey…. 

                                            Does that sound right??

                                            • March 3, 2016 at 3:21 am
                                            Becky
                                            Participant

                                              That is so great! I remember reading your blog when my son was going through treatment…interestingly enough he has moved to NYC from California since then but continues to be NED!

                                               

                                              • March 3, 2016 at 3:21 am
                                              Becky
                                              Participant

                                                That is so great! I remember reading your blog when my son was going through treatment…interestingly enough he has moved to NYC from California since then but continues to be NED!

                                                 

                                                  • March 4, 2016 at 6:02 pm
                                                  Erinmay22
                                                  Participant

                                                    Becky – sounds like you're son has done well also – that's amazing!  I'm sure it was tough to have him move from CA to NYC! 

                                                    • March 4, 2016 at 6:02 pm
                                                    Erinmay22
                                                    Participant

                                                      Becky – sounds like you're son has done well also – that's amazing!  I'm sure it was tough to have him move from CA to NYC! 

                                                      • March 4, 2016 at 6:02 pm
                                                      Erinmay22
                                                      Participant

                                                        Becky – sounds like you're son has done well also – that's amazing!  I'm sure it was tough to have him move from CA to NYC! 

                                                      • March 3, 2016 at 3:21 am
                                                      Becky
                                                      Participant

                                                        That is so great! I remember reading your blog when my son was going through treatment…interestingly enough he has moved to NYC from California since then but continues to be NED!

                                                         

                                                        • March 3, 2016 at 1:40 pm
                                                        jenny22
                                                        Participant

                                                          Hi Erin-

                                                          GREAT to read your news….and though I am 3B ( not IV) , I still do an awful lot of worryng, so these are terrific to see.

                                                           

                                                          Once again, many congrats!!!!!

                                                          Best,

                                                          Jenny

                                                          • March 3, 2016 at 1:40 pm
                                                          jenny22
                                                          Participant

                                                            Hi Erin-

                                                            GREAT to read your news….and though I am 3B ( not IV) , I still do an awful lot of worryng, so these are terrific to see.

                                                             

                                                            Once again, many congrats!!!!!

                                                            Best,

                                                            Jenny

                                                            • March 3, 2016 at 1:40 pm
                                                            jenny22
                                                            Participant

                                                              Hi Erin-

                                                              GREAT to read your news….and though I am 3B ( not IV) , I still do an awful lot of worryng, so these are terrific to see.

                                                               

                                                              Once again, many congrats!!!!!

                                                              Best,

                                                              Jenny

                                                                • March 4, 2016 at 6:02 pm
                                                                Erinmay22
                                                                Participant

                                                                  Jenny – Thanks!  Honestly, I don't think the worrying ever goes away… it just gets a little easier? 

                                                                  • March 4, 2016 at 6:02 pm
                                                                  Erinmay22
                                                                  Participant

                                                                    Jenny – Thanks!  Honestly, I don't think the worrying ever goes away… it just gets a little easier? 

                                                                    • March 4, 2016 at 6:02 pm
                                                                    Erinmay22
                                                                    Participant

                                                                      Jenny – Thanks!  Honestly, I don't think the worrying ever goes away… it just gets a little easier? 

                                                                    • March 3, 2016 at 2:02 pm
                                                                    melj
                                                                    Participant

                                                                      Hi Erin, this is excellent news. As someone who started the Keytruda ( pembrolizumab ) journey in January it's great to hear success stories. 

                                                                      Mel J

                                                                      • March 3, 2016 at 2:02 pm
                                                                      melj
                                                                      Participant

                                                                        Hi Erin, this is excellent news. As someone who started the Keytruda ( pembrolizumab ) journey in January it's great to hear success stories. 

                                                                        Mel J

                                                                          • March 3, 2016 at 9:51 pm
                                                                          vivian
                                                                          Participant

                                                                            Hi Erin!

                                                                            Great to hear from you – and with such positive news!  You might remember that you and I were diagnosed at about the same time, with pretty similar primaries.  (IIIa for me).  I have been stage 4 for four years.  Became IIIc with an intransit in 2012, followed by first lung met in 2012, second in 2014, third in 2015.  Had two VATS wedge resections and very recently, Cyberknife for the last one.  I don't know yet whether it is gone/dead/ whatever they call if, but I feel wonderful and very fortunate to be here and well in 2016!  So far I haven't had any systemic treatment, but when that happens, I hope to follow in your footsteps!

                                                                            Best regards,

                                                                            Lear

                                                                            • March 3, 2016 at 9:51 pm
                                                                            vivian
                                                                            Participant

                                                                              Hi Erin!

                                                                              Great to hear from you – and with such positive news!  You might remember that you and I were diagnosed at about the same time, with pretty similar primaries.  (IIIa for me).  I have been stage 4 for four years.  Became IIIc with an intransit in 2012, followed by first lung met in 2012, second in 2014, third in 2015.  Had two VATS wedge resections and very recently, Cyberknife for the last one.  I don't know yet whether it is gone/dead/ whatever they call if, but I feel wonderful and very fortunate to be here and well in 2016!  So far I haven't had any systemic treatment, but when that happens, I hope to follow in your footsteps!

                                                                              Best regards,

                                                                              Lear

                                                                              • March 3, 2016 at 9:51 pm
                                                                              vivian
                                                                              Participant

                                                                                Hi Erin!

                                                                                Great to hear from you – and with such positive news!  You might remember that you and I were diagnosed at about the same time, with pretty similar primaries.  (IIIa for me).  I have been stage 4 for four years.  Became IIIc with an intransit in 2012, followed by first lung met in 2012, second in 2014, third in 2015.  Had two VATS wedge resections and very recently, Cyberknife for the last one.  I don't know yet whether it is gone/dead/ whatever they call if, but I feel wonderful and very fortunate to be here and well in 2016!  So far I haven't had any systemic treatment, but when that happens, I hope to follow in your footsteps!

                                                                                Best regards,

                                                                                Lear

                                                                                • March 4, 2016 at 6:04 pm
                                                                                Erinmay22
                                                                                Participant

                                                                                  Lear – yes!  I remember…  I always think if they can cut it out great!  I was forced in to systemic treatment because I had tumors in places they couldn't (at least easily) remove.  But nice to know these options are out there for you!

                                                                                  • March 4, 2016 at 6:04 pm
                                                                                  Erinmay22
                                                                                  Participant

                                                                                    Lear – yes!  I remember…  I always think if they can cut it out great!  I was forced in to systemic treatment because I had tumors in places they couldn't (at least easily) remove.  But nice to know these options are out there for you!

                                                                                    • March 4, 2016 at 6:04 pm
                                                                                    Erinmay22
                                                                                    Participant

                                                                                      Lear – yes!  I remember…  I always think if they can cut it out great!  I was forced in to systemic treatment because I had tumors in places they couldn't (at least easily) remove.  But nice to know these options are out there for you!

                                                                                    • March 3, 2016 at 2:02 pm
                                                                                    melj
                                                                                    Participant

                                                                                      Hi Erin, this is excellent news. As someone who started the Keytruda ( pembrolizumab ) journey in January it's great to hear success stories. 

                                                                                      Mel J

                                                                                      • March 3, 2016 at 9:57 pm
                                                                                      Bubbles
                                                                                      Participant

                                                                                        Congrats! That's wonderful! Celeste

                                                                                        • March 3, 2016 at 9:57 pm
                                                                                        Bubbles
                                                                                        Participant

                                                                                          Congrats! That's wonderful! Celeste

                                                                                          • March 3, 2016 at 9:57 pm
                                                                                          Bubbles
                                                                                          Participant

                                                                                            Congrats! That's wonderful! Celeste

                                                                                            • March 4, 2016 at 3:46 am
                                                                                            stevecathy
                                                                                            Participant
                                                                                              Thanks for sharing! Congratulations, and thank you for giving hope. Best wishes ! Blessings
                                                                                              • March 4, 2016 at 3:46 am
                                                                                              stevecathy
                                                                                              Participant
                                                                                                Thanks for sharing! Congratulations, and thank you for giving hope. Best wishes ! Blessings
                                                                                                • March 4, 2016 at 3:46 am
                                                                                                stevecathy
                                                                                                Participant
                                                                                                  Thanks for sharing! Congratulations, and thank you for giving hope. Best wishes ! Blessings
                                                                                                  • March 4, 2016 at 4:04 pm
                                                                                                  BrianP
                                                                                                  Participant

                                                                                                    Congrats Erin!  Glad to hear you are doing so well.  If you remember, you and I have been on similar paths.  I still have a couple adominal nodes as well but they've been stable for 2 years.  I've been off treatment for nearly 7 months. 

                                                                                                    Brian

                                                                                                    • March 4, 2016 at 4:04 pm
                                                                                                    BrianP
                                                                                                    Participant

                                                                                                      Congrats Erin!  Glad to hear you are doing so well.  If you remember, you and I have been on similar paths.  I still have a couple adominal nodes as well but they've been stable for 2 years.  I've been off treatment for nearly 7 months. 

                                                                                                      Brian

                                                                                                      • March 4, 2016 at 4:04 pm
                                                                                                      BrianP
                                                                                                      Participant

                                                                                                        Congrats Erin!  Glad to hear you are doing so well.  If you remember, you and I have been on similar paths.  I still have a couple adominal nodes as well but they've been stable for 2 years.  I've been off treatment for nearly 7 months. 

                                                                                                        Brian

                                                                                                          • March 4, 2016 at 6:38 pm
                                                                                                          Erinmay22
                                                                                                          Participant

                                                                                                            Brian!  Yes, I remember.  Glad to hear you've been stable also!  and sounds like we continue to have similiar paths 🙂  Have a fabulous weekend!

                                                                                                            • March 5, 2016 at 5:47 pm
                                                                                                            Brendan
                                                                                                            Participant

                                                                                                              Great news, Erin.  Thanks for sharing. I'm 6 months behind you.  Good luck!

                                                                                                              Brendan

                                                                                                              • March 5, 2016 at 5:47 pm
                                                                                                              Brendan
                                                                                                              Participant

                                                                                                                Great news, Erin.  Thanks for sharing. I'm 6 months behind you.  Good luck!

                                                                                                                Brendan

                                                                                                                • March 5, 2016 at 5:47 pm
                                                                                                                Brendan
                                                                                                                Participant

                                                                                                                  Great news, Erin.  Thanks for sharing. I'm 6 months behind you.  Good luck!

                                                                                                                  Brendan

                                                                                                                  • March 4, 2016 at 6:38 pm
                                                                                                                  Erinmay22
                                                                                                                  Participant

                                                                                                                    Brian!  Yes, I remember.  Glad to hear you've been stable also!  and sounds like we continue to have similiar paths 🙂  Have a fabulous weekend!

                                                                                                                    • March 4, 2016 at 6:38 pm
                                                                                                                    Erinmay22
                                                                                                                    Participant

                                                                                                                      Brian!  Yes, I remember.  Glad to hear you've been stable also!  and sounds like we continue to have similiar paths 🙂  Have a fabulous weekend!

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