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CNLD Neck Recovery and Next Steps
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CNLD Neck Recovery and Next Steps

› Forums › General Melanoma Community › CNLD Neck Recovery and Next Steps

  • Post
    • July 31, 2016 at 4:41 pm
    slouttit
    Participant

      I am stage IIIa.  I was diagnosed in January 2016 with a 1.5mm melamona on my left ear, no ulceration, 4/sq mm mitotic rate.  I had surgery March 22, 2016 to excise the melamona and complete a SLNB.  2 of the 7 nodes were positive for micrometastatsis melanoma.   I then had a paratidectomy and CNLD on the left side of my neck.  All 54 lymph nodes were negative.  Recent CT scans and Pet Scans were negative.  

      Since the CNLD in May,  I still cannot raise my left arm above 90 degrees to the side.  I'm doing daily stretching and exercises but haven't seen a lot of progress.   In addition, my smiile is lobsided as my left lower lip is impaired.  However, this seems to be getting better.

      Does anyone have advice for these symptoms? 

      My surgeon said the nerves were spared during surgery but were stretched and this weakness in normal.  However he didn't give me a recovery time.

      As for next steps, I'm waiting to hear whether I'm eligible for a clinical trial comparing Keytruda to High Dose Interferon.  If I don't do the trial my options are high dose intereferon or watch and wait.  Ipi is not approved in Canada for stage III.

      Any thoughts on next steps?

       

      Thanks,
      ​Stacie

       

       

       

    Viewing 2 reply threads
    • Replies
        • August 1, 2016 at 1:05 am
        Mamapegela
        Participant

          Hi Stacie-

          I too had a left neck CLND in May and my sypmtoms are very similar to yours.  My ability to raise my left arm is slowly improving but it has a long way to go.  I have the lopsided lower lip too.  My surgeon told me that up to 50% of people who have a neck dissection will end up with shoulder dysfunction.  She said to give it a full year to improve and at that point it probably is the best that it will be.

          Are you going to PT?  I do my exercises every day too but PT has been really important.  I was going three times a week but now am back at work so am only going 2 times a week now.

          I am stage 3C and have just enrolled in the S1404 study which compares either high dose interferon or ipi to pembro (Ketruda).  I still need to have scans to prove continued NED.  I will do the ipi if that is the arm I get in to because from what I have read and understand the interferon has not proven to be very beneficial and it is very hard to tolerate for a year.

          All the best to you as you make decisions for your next step, and I hope your symptoms improve.  Take heart- there are many out there who are going through the same thing and wish you well.

           

            • October 20, 2016 at 5:09 am
            slouttit
            Participant

              HI Landover,

              Thank you for your reply.  My lopsided lower lip and shoulder dysfunction after my CNLD are improving so that is a relief.  I hope yours is improving also. 

              I too enrolled in the S1404 study but because ipi is not approved for stage 3 in Canada, the trial here compares only interferon to pembro.  Unfortunately I drew the interferon arm.  I went forward with interferon but only last one week as I couldn't handle the adverse side effects.  Which arm did you get and how is it going?

              Stacie

              • October 20, 2016 at 5:25 am
              slouttit
              Participant

                Hi Peggy, 

                After asking about your trial, I read your bio and now have my answer.  I'm sorry the trial didn't work out for you and that you are in limbo.  That's how I feel too.  I've seen a few different docs and some say "watch and wait" is best for me, while others recommend I be more proactive.  So I may look into other trials and take if from there.  

                Stacie

                • November 1, 2016 at 10:16 pm
                Mamapegela
                Participant

                  Hi Stacie-

                  I hope things are going well for you.  Please keep us informed.  We are in very similar circumstances. I'll be thinking of you.

                  Peggy

                  • November 1, 2016 at 10:16 pm
                  Mamapegela
                  Participant

                    Hi Stacie-

                    I hope things are going well for you.  Please keep us informed.  We are in very similar circumstances. I'll be thinking of you.

                    Peggy

                    • November 1, 2016 at 10:16 pm
                    Mamapegela
                    Participant

                      Hi Stacie-

                      I hope things are going well for you.  Please keep us informed.  We are in very similar circumstances. I'll be thinking of you.

                      Peggy

                      • October 20, 2016 at 5:25 am
                      slouttit
                      Participant

                        Hi Peggy, 

                        After asking about your trial, I read your bio and now have my answer.  I'm sorry the trial didn't work out for you and that you are in limbo.  That's how I feel too.  I've seen a few different docs and some say "watch and wait" is best for me, while others recommend I be more proactive.  So I may look into other trials and take if from there.  

                        Stacie

                        • October 20, 2016 at 5:25 am
                        slouttit
                        Participant

                          Hi Peggy, 

                          After asking about your trial, I read your bio and now have my answer.  I'm sorry the trial didn't work out for you and that you are in limbo.  That's how I feel too.  I've seen a few different docs and some say "watch and wait" is best for me, while others recommend I be more proactive.  So I may look into other trials and take if from there.  

                          Stacie

                          • October 20, 2016 at 5:09 am
                          slouttit
                          Participant

                            HI Landover,

                            Thank you for your reply.  My lopsided lower lip and shoulder dysfunction after my CNLD are improving so that is a relief.  I hope yours is improving also. 

                            I too enrolled in the S1404 study but because ipi is not approved for stage 3 in Canada, the trial here compares only interferon to pembro.  Unfortunately I drew the interferon arm.  I went forward with interferon but only last one week as I couldn't handle the adverse side effects.  Which arm did you get and how is it going?

                            Stacie

                            • October 20, 2016 at 5:09 am
                            slouttit
                            Participant

                              HI Landover,

                              Thank you for your reply.  My lopsided lower lip and shoulder dysfunction after my CNLD are improving so that is a relief.  I hope yours is improving also. 

                              I too enrolled in the S1404 study but because ipi is not approved for stage 3 in Canada, the trial here compares only interferon to pembro.  Unfortunately I drew the interferon arm.  I went forward with interferon but only last one week as I couldn't handle the adverse side effects.  Which arm did you get and how is it going?

                              Stacie

                            • August 1, 2016 at 1:05 am
                            Mamapegela
                            Participant

                              Hi Stacie-

                              I too had a left neck CLND in May and my sypmtoms are very similar to yours.  My ability to raise my left arm is slowly improving but it has a long way to go.  I have the lopsided lower lip too.  My surgeon told me that up to 50% of people who have a neck dissection will end up with shoulder dysfunction.  She said to give it a full year to improve and at that point it probably is the best that it will be.

                              Are you going to PT?  I do my exercises every day too but PT has been really important.  I was going three times a week but now am back at work so am only going 2 times a week now.

                              I am stage 3C and have just enrolled in the S1404 study which compares either high dose interferon or ipi to pembro (Ketruda).  I still need to have scans to prove continued NED.  I will do the ipi if that is the arm I get in to because from what I have read and understand the interferon has not proven to be very beneficial and it is very hard to tolerate for a year.

                              All the best to you as you make decisions for your next step, and I hope your symptoms improve.  Take heart- there are many out there who are going through the same thing and wish you well.

                               

                              • August 1, 2016 at 1:05 am
                              Mamapegela
                              Participant

                                Hi Stacie-

                                I too had a left neck CLND in May and my sypmtoms are very similar to yours.  My ability to raise my left arm is slowly improving but it has a long way to go.  I have the lopsided lower lip too.  My surgeon told me that up to 50% of people who have a neck dissection will end up with shoulder dysfunction.  She said to give it a full year to improve and at that point it probably is the best that it will be.

                                Are you going to PT?  I do my exercises every day too but PT has been really important.  I was going three times a week but now am back at work so am only going 2 times a week now.

                                I am stage 3C and have just enrolled in the S1404 study which compares either high dose interferon or ipi to pembro (Ketruda).  I still need to have scans to prove continued NED.  I will do the ipi if that is the arm I get in to because from what I have read and understand the interferon has not proven to be very beneficial and it is very hard to tolerate for a year.

                                All the best to you as you make decisions for your next step, and I hope your symptoms improve.  Take heart- there are many out there who are going through the same thing and wish you well.

                                 

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