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Annual Scans clean! Stage IV NED since 2009

Forums General Melanoma Community Annual Scans clean! Stage IV NED since 2009

  • Post
    Rocco
    Participant

      Just had my annual visit to DFCI in Boston.  Annual CT (chest/abdomen/pelvis)  and  MRI  (brain) were clear!   Blessed to still be here.  Still praying daily, working and living life.  Prayers and good vibes to all dealing with melanoma.  

      -Rocco, Stage IV in 2005, NED in 2009, Ipi 10mg/kg responder.   

    Viewing 26 reply threads
    • Replies
        Jennab0525
        Participant

          Absolutely amazing and wonderful news Rocco!!! I was recently diagnosed Stage IIIB and its posts like yours that give me hope and lessen my fears! God bless you!! I am praying you have many, many more years of NED!!

          Jenna

          Jennab0525
          Participant

            Absolutely amazing and wonderful news Rocco!!! I was recently diagnosed Stage IIIB and its posts like yours that give me hope and lessen my fears! God bless you!! I am praying you have many, many more years of NED!!

            Jenna

            Jennab0525
            Participant

              Absolutely amazing and wonderful news Rocco!!! I was recently diagnosed Stage IIIB and its posts like yours that give me hope and lessen my fears! God bless you!! I am praying you have many, many more years of NED!!

              Jenna

              WithinMySkin
              Participant
                Amazing news!! I’m so happy for you, Rocco! I agree, this is very uplifting for all of us still battling. Hoping you have MANY MANY MANY more years of NED!

                WithinMySkin

                WithinMySkin
                Participant
                  Amazing news!! I’m so happy for you, Rocco! I agree, this is very uplifting for all of us still battling. Hoping you have MANY MANY MANY more years of NED!

                  WithinMySkin

                  WithinMySkin
                  Participant
                    Amazing news!! I’m so happy for you, Rocco! I agree, this is very uplifting for all of us still battling. Hoping you have MANY MANY MANY more years of NED!

                    WithinMySkin

                    Bubbles
                    Participant

                      Wonderful! Enjoy and thanks for sharing! Celeste

                      Bubbles
                      Participant

                        Wonderful! Enjoy and thanks for sharing! Celeste

                        Bubbles
                        Participant

                          Wonderful! Enjoy and thanks for sharing! Celeste

                          Scooby123
                          Participant

                            So nice to hear from you Rocco, always nice to hear good news . I have mel in my liver , lungs some in lympth nodes I had ipp only 3 mg thou 4 doses it has reduced my tumours had 2 updated scans with stable . Hoping more shrinkage or stable on next scans in February. Will ask for maintance dose if still stable do not like the idea of not doing anything sitting and waiting. I have pain in my left side at present not sure if it's with treatment we all know treatment can give you side effects well after treatment, but I am concerned about it. 

                            Keep up the good fight my friend enjoy life every day

                            scooby❤️

                            Scooby123
                            Participant

                              So nice to hear from you Rocco, always nice to hear good news . I have mel in my liver , lungs some in lympth nodes I had ipp only 3 mg thou 4 doses it has reduced my tumours had 2 updated scans with stable . Hoping more shrinkage or stable on next scans in February. Will ask for maintance dose if still stable do not like the idea of not doing anything sitting and waiting. I have pain in my left side at present not sure if it's with treatment we all know treatment can give you side effects well after treatment, but I am concerned about it. 

                              Keep up the good fight my friend enjoy life every day

                              scooby❤️

                              Scooby123
                              Participant

                                So nice to hear from you Rocco, always nice to hear good news . I have mel in my liver , lungs some in lympth nodes I had ipp only 3 mg thou 4 doses it has reduced my tumours had 2 updated scans with stable . Hoping more shrinkage or stable on next scans in February. Will ask for maintance dose if still stable do not like the idea of not doing anything sitting and waiting. I have pain in my left side at present not sure if it's with treatment we all know treatment can give you side effects well after treatment, but I am concerned about it. 

                                Keep up the good fight my friend enjoy life every day

                                scooby❤️

                                Kim K
                                Participant

                                  So Rocco,

                                  Looks like we are in the same boat (a good one that is).  I am NED stage IV since June 2010.  Have your docs discussed when to stop scanning?  I have lost count on how many PET/CT's, CT's, and other chest x-rays I have had over the years but I feel like I am glowing.

                                  At what point do we pull back from scanning?  I am only 48 and don't want to get another cancer due to all of my accumulated radiation exposure.  Just wondering what your docs thoughts are.  Mine are too leery to stop, but after IL-2 this far out, last long term follow up showed no recurrance and dare I say "cure"?

                                  My one onc still wants chest x-rays but the likelyhood of a second met back to the lungs is even odds against one popping up elsewhere.  So why even bother with the chest x-ray then?

                                  Congrats fellow tail of the curve setter!

                                  Kim K
                                  Participant

                                    So Rocco,

                                    Looks like we are in the same boat (a good one that is).  I am NED stage IV since June 2010.  Have your docs discussed when to stop scanning?  I have lost count on how many PET/CT's, CT's, and other chest x-rays I have had over the years but I feel like I am glowing.

                                    At what point do we pull back from scanning?  I am only 48 and don't want to get another cancer due to all of my accumulated radiation exposure.  Just wondering what your docs thoughts are.  Mine are too leery to stop, but after IL-2 this far out, last long term follow up showed no recurrance and dare I say "cure"?

                                    My one onc still wants chest x-rays but the likelyhood of a second met back to the lungs is even odds against one popping up elsewhere.  So why even bother with the chest x-ray then?

                                    Congrats fellow tail of the curve setter!

                                    Kim K
                                    Participant

                                      So Rocco,

                                      Looks like we are in the same boat (a good one that is).  I am NED stage IV since June 2010.  Have your docs discussed when to stop scanning?  I have lost count on how many PET/CT's, CT's, and other chest x-rays I have had over the years but I feel like I am glowing.

                                      At what point do we pull back from scanning?  I am only 48 and don't want to get another cancer due to all of my accumulated radiation exposure.  Just wondering what your docs thoughts are.  Mine are too leery to stop, but after IL-2 this far out, last long term follow up showed no recurrance and dare I say "cure"?

                                      My one onc still wants chest x-rays but the likelyhood of a second met back to the lungs is even odds against one popping up elsewhere.  So why even bother with the chest x-ray then?

                                      Congrats fellow tail of the curve setter!

                                      MaryD
                                      Participant

                                        Congratulations!   I'm right there with you and Kim K (been a long time since I've posted.).  I'm Stage IV since 2008 and was originally DX with melanoma in 2001.

                                        I did 1 year INF, vaccine trial, radiation of left arm, Ipi + vaccine clinical trial, and finally, 6 mos of pulsed IL-2 (which at the time was the mainenance treatment following biochemo – I just did it as an adjuvant treatment).

                                        To answer Kim's question about scans, my onc has advised scans for 10 years following the last recurrence. Some advise chest xrays but I'm with Kim on that – given the unpredicatable path mel can take, I am personally uncomfortable with that.

                                        All that said, I probably light up in the dark 🙂     But – we have to pick our battles and I'm now doing the CT of chest, abdomen, and pelvis once a year until I reach the 10 year mark.

                                        I remember both of you from the "old" MPIP days . .it is wonderful that we are here to give others hope.

                                        Mary

                                         

                                        MaryD
                                        Participant

                                          Congratulations!   I'm right there with you and Kim K (been a long time since I've posted.).  I'm Stage IV since 2008 and was originally DX with melanoma in 2001.

                                          I did 1 year INF, vaccine trial, radiation of left arm, Ipi + vaccine clinical trial, and finally, 6 mos of pulsed IL-2 (which at the time was the mainenance treatment following biochemo – I just did it as an adjuvant treatment).

                                          To answer Kim's question about scans, my onc has advised scans for 10 years following the last recurrence. Some advise chest xrays but I'm with Kim on that – given the unpredicatable path mel can take, I am personally uncomfortable with that.

                                          All that said, I probably light up in the dark 🙂     But – we have to pick our battles and I'm now doing the CT of chest, abdomen, and pelvis once a year until I reach the 10 year mark.

                                          I remember both of you from the "old" MPIP days . .it is wonderful that we are here to give others hope.

                                          Mary

                                           

                                          MaryD
                                          Participant

                                            Congratulations!   I'm right there with you and Kim K (been a long time since I've posted.).  I'm Stage IV since 2008 and was originally DX with melanoma in 2001.

                                            I did 1 year INF, vaccine trial, radiation of left arm, Ipi + vaccine clinical trial, and finally, 6 mos of pulsed IL-2 (which at the time was the mainenance treatment following biochemo – I just did it as an adjuvant treatment).

                                            To answer Kim's question about scans, my onc has advised scans for 10 years following the last recurrence. Some advise chest xrays but I'm with Kim on that – given the unpredicatable path mel can take, I am personally uncomfortable with that.

                                            All that said, I probably light up in the dark 🙂     But – we have to pick our battles and I'm now doing the CT of chest, abdomen, and pelvis once a year until I reach the 10 year mark.

                                            I remember both of you from the "old" MPIP days . .it is wonderful that we are here to give others hope.

                                            Mary

                                             

                                            jenny22
                                            Participant

                                              Love reading these types of posts….congratulations on your continued good health!!!!!!

                                              May it last for MANY MANY years to COME!

                                               

                                              Best,

                                              jenny

                                              jenny22
                                              Participant

                                                Love reading these types of posts….congratulations on your continued good health!!!!!!

                                                May it last for MANY MANY years to COME!

                                                 

                                                Best,

                                                jenny

                                                jenny22
                                                Participant

                                                  Love reading these types of posts….congratulations on your continued good health!!!!!!

                                                  May it last for MANY MANY years to COME!

                                                   

                                                  Best,

                                                  jenny

                                                  DebbieH
                                                  Participant

                                                    Wonderful news Rocco!  I don't visit this site much anymore but I decided to check in tonight and I'm so happy to see people I recognize from the old days still doing well!  So very happy to see your post – cheers!

                                                    DebbieH, stage 3C, NED over 14 years.

                                                    DebbieH
                                                    Participant

                                                      Wonderful news Rocco!  I don't visit this site much anymore but I decided to check in tonight and I'm so happy to see people I recognize from the old days still doing well!  So very happy to see your post – cheers!

                                                      DebbieH, stage 3C, NED over 14 years.

                                                      DebbieH
                                                      Participant

                                                        Wonderful news Rocco!  I don't visit this site much anymore but I decided to check in tonight and I'm so happy to see people I recognize from the old days still doing well!  So very happy to see your post – cheers!

                                                        DebbieH, stage 3C, NED over 14 years.

                                                        Rocco
                                                        Participant

                                                          To all those that replied to my original post – thank you for the kind words!  Posts from long-term survivors helped me immensely back in the days when I was struggling – through initial diagnosis, treatments/surgeries and side effects – by keeping hope alive.  It's the very least I can do to try and repay that by posting good news.l

                                                          There are also so very many whose posted helped but who are no longer here….I remember them as well and still think of them often.

                                                          Kim, Mary, Debbie – I remember all of you.  It's been a long road, a hell of a journey, but we are still here!

                                                          -Rocco

                                                           

                                                          Rocco
                                                          Participant

                                                            To all those that replied to my original post – thank you for the kind words!  Posts from long-term survivors helped me immensely back in the days when I was struggling – through initial diagnosis, treatments/surgeries and side effects – by keeping hope alive.  It's the very least I can do to try and repay that by posting good news.l

                                                            There are also so very many whose posted helped but who are no longer here….I remember them as well and still think of them often.

                                                            Kim, Mary, Debbie – I remember all of you.  It's been a long road, a hell of a journey, but we are still here!

                                                            -Rocco

                                                             

                                                            Rocco
                                                            Participant

                                                              To all those that replied to my original post – thank you for the kind words!  Posts from long-term survivors helped me immensely back in the days when I was struggling – through initial diagnosis, treatments/surgeries and side effects – by keeping hope alive.  It's the very least I can do to try and repay that by posting good news.l

                                                              There are also so very many whose posted helped but who are no longer here….I remember them as well and still think of them often.

                                                              Kim, Mary, Debbie – I remember all of you.  It's been a long road, a hell of a journey, but we are still here!

                                                              -Rocco

                                                               

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