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MaryD

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      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

             

            MaryD
            Participant

              Hi Eileen . .wow – that is great news!   Now you can finally be done with that annoying thing  🙂

              Wishing you good luck on 12/3 and it was good seeing you at the symposium awhile back in SF.

              Enjoy the holidays and keep on traveling!

              Mary

               

              MaryD
              Participant

                Hi Eileen . .wow – that is great news!   Now you can finally be done with that annoying thing  🙂

                Wishing you good luck on 12/3 and it was good seeing you at the symposium awhile back in SF.

                Enjoy the holidays and keep on traveling!

                Mary

                 

                MaryD
                Participant

                  Hi Eileen . .wow – that is great news!   Now you can finally be done with that annoying thing  🙂

                  Wishing you good luck on 12/3 and it was good seeing you at the symposium awhile back in SF.

                  Enjoy the holidays and keep on traveling!

                  Mary

                   

                  MaryD
                  Participant

                    Thanks for the feedback Celeste – yes, to be sure , it is way better than the alternative!   I suspect it is a combination of all the factors coming together.   Taking NSAIDs with minimal success and will be having mid foot fusion in the near future.   

                    The very bright side of my journey is that I can give hope to others fighting this disease – there are more and more long term survivors out there 🙂

                    Mary

                    MaryD
                    Participant

                      Thanks for the feedback Celeste – yes, to be sure , it is way better than the alternative!   I suspect it is a combination of all the factors coming together.   Taking NSAIDs with minimal success and will be having mid foot fusion in the near future.   

                      The very bright side of my journey is that I can give hope to others fighting this disease – there are more and more long term survivors out there 🙂

                      Mary

                      MaryD
                      Participant

                        Thanks for the feedback Celeste – yes, to be sure , it is way better than the alternative!   I suspect it is a combination of all the factors coming together.   Taking NSAIDs with minimal success and will be having mid foot fusion in the near future.   

                        The very bright side of my journey is that I can give hope to others fighting this disease – there are more and more long term survivors out there 🙂

                        Mary

                        MaryD
                        Participant

                          No ,  I had no joint pain or obvious arthritis before treatments but my Mom did have Heberdon's nodes on her fingers so I could certainly have inherited those. 

                          It was interesting – during the pulsed IL-2, I noticed the skin on my hands suddenly looked shriveled – like they aged 20 years!   It eventuallly improved after treatment but asked one of my physicians, Dr. Jeffrey Weber about it.    I thought it might be dehydration but he said it was due to inflammation – and that it can last a long time. 

                          No doubt the arthritis is due to a confluence of factors – inheritance, treatments, normal aging etc.

                          But, as we know too well, way better than the alternative!

                          Mary

                           

                          MaryD
                          Participant

                            No ,  I had no joint pain or obvious arthritis before treatments but my Mom did have Heberdon's nodes on her fingers so I could certainly have inherited those. 

                            It was interesting – during the pulsed IL-2, I noticed the skin on my hands suddenly looked shriveled – like they aged 20 years!   It eventuallly improved after treatment but asked one of my physicians, Dr. Jeffrey Weber about it.    I thought it might be dehydration but he said it was due to inflammation – and that it can last a long time. 

                            No doubt the arthritis is due to a confluence of factors – inheritance, treatments, normal aging etc.

                            But, as we know too well, way better than the alternative!

                            Mary

                             

                            MaryD
                            Participant

                              No ,  I had no joint pain or obvious arthritis before treatments but my Mom did have Heberdon's nodes on her fingers so I could certainly have inherited those. 

                              It was interesting – during the pulsed IL-2, I noticed the skin on my hands suddenly looked shriveled – like they aged 20 years!   It eventuallly improved after treatment but asked one of my physicians, Dr. Jeffrey Weber about it.    I thought it might be dehydration but he said it was due to inflammation – and that it can last a long time. 

                              No doubt the arthritis is due to a confluence of factors – inheritance, treatments, normal aging etc.

                              But, as we know too well, way better than the alternative!

                              Mary

                               

                              MaryD
                              Participant

                                Thank you Kyle – that worked!

                                Mary

                                MaryD
                                Participant

                                  Thank you Kyle – that worked!

                                  Mary

                                  MaryD
                                  Participant

                                    Thank you Kyle – that worked!

                                    Mary

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