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radiation

› Forums › General Melanoma Community › radiation

  • Post
    • July 5, 2015 at 5:02 pm
    lmhl
    Participant

      Just curious if any one has had radiation following a radical lymphadenectomy of neck nodes? I noticed that it is not even a treatment option on this website.  I was recently diagnosed with melanoma and have had surgery one month ago to remove approximately 30 nodes in my neck area (primary melanoma on my nose).  They said 13 nodes were positive out of 30 for melanoma.  They said it is too soon to start any systemic therapy and want me to wait until I heal further from the sugery before I start radiation.  Radiation likely to start 6-7 weeks following surgery.  I am BRAF neg.  Otherwise healthy, although this surgery has kicked my butt.

      Thank you for any help you can offer.  Something just doesn't feel right.

      Mike

    Viewing 5 reply threads
    • Replies
        • July 5, 2015 at 5:18 pm
        yazziemac
        Participant

          Hi Mike

          My late husband had 33 radiation treatments to his neck after a radical neck dissection, which removed more than 40 lymph nodes.  He had a recurrence 6 months later, unfortunately, with a brain met.  I have heard that melanoma is a radiation resistant cancer, so the effects are not as good as they could be.  However, if radiation is the only treatment offered (as it was in my husband's case at the time), then at least one feels that one is doing something rather than waiting and watching.  Good luck with your decision!

            • July 5, 2015 at 6:54 pm
            ed williams
            Participant

              It is nice to have you back on the forum Yasmin, wishing you the best!!!  Ed

              • July 5, 2015 at 6:54 pm
              ed williams
              Participant

                It is nice to have you back on the forum Yasmin, wishing you the best!!!  Ed

                • July 6, 2015 at 1:18 pm
                yazziemac
                Participant

                  Thanks, Ed! I'm getting stronger as time goes on, but adjusting to life without Pete is sad.  Hope you are doing well also.

                   

                  Yasmin

                  • July 6, 2015 at 1:18 pm
                  yazziemac
                  Participant

                    Thanks, Ed! I'm getting stronger as time goes on, but adjusting to life without Pete is sad.  Hope you are doing well also.

                     

                    Yasmin

                    • July 6, 2015 at 1:18 pm
                    yazziemac
                    Participant

                      Thanks, Ed! I'm getting stronger as time goes on, but adjusting to life without Pete is sad.  Hope you are doing well also.

                       

                      Yasmin

                      • July 5, 2015 at 6:54 pm
                      ed williams
                      Participant

                        It is nice to have you back on the forum Yasmin, wishing you the best!!!  Ed

                        • July 5, 2015 at 8:46 pm
                        lmhl
                        Participant

                          Thank you for your information.  I am sorry to hear about your husband.  I have read else where that melanoma is resistant to radiation.  Not sure why that's what they are offering to me.  Are they unable to start Vervoy shortly after surgery because of healing.  Should I be asking for something different?  I have another appointment this week to have the mask fitted.  I appreciate your advice.

                           

                          • July 5, 2015 at 8:46 pm
                          lmhl
                          Participant

                            Thank you for your information.  I am sorry to hear about your husband.  I have read else where that melanoma is resistant to radiation.  Not sure why that's what they are offering to me.  Are they unable to start Vervoy shortly after surgery because of healing.  Should I be asking for something different?  I have another appointment this week to have the mask fitted.  I appreciate your advice.

                             

                            • July 5, 2015 at 8:46 pm
                            lmhl
                            Participant

                              Thank you for your information.  I am sorry to hear about your husband.  I have read else where that melanoma is resistant to radiation.  Not sure why that's what they are offering to me.  Are they unable to start Vervoy shortly after surgery because of healing.  Should I be asking for something different?  I have another appointment this week to have the mask fitted.  I appreciate your advice.

                               

                            • July 5, 2015 at 5:18 pm
                            yazziemac
                            Participant

                              Hi Mike

                              My late husband had 33 radiation treatments to his neck after a radical neck dissection, which removed more than 40 lymph nodes.  He had a recurrence 6 months later, unfortunately, with a brain met.  I have heard that melanoma is a radiation resistant cancer, so the effects are not as good as they could be.  However, if radiation is the only treatment offered (as it was in my husband's case at the time), then at least one feels that one is doing something rather than waiting and watching.  Good luck with your decision!

                              • July 5, 2015 at 5:18 pm
                              yazziemac
                              Participant

                                Hi Mike

                                My late husband had 33 radiation treatments to his neck after a radical neck dissection, which removed more than 40 lymph nodes.  He had a recurrence 6 months later, unfortunately, with a brain met.  I have heard that melanoma is a radiation resistant cancer, so the effects are not as good as they could be.  However, if radiation is the only treatment offered (as it was in my husband's case at the time), then at least one feels that one is doing something rather than waiting and watching.  Good luck with your decision!

                                • July 5, 2015 at 5:49 pm
                                Bubbles
                                Participant

                                  Hi Mike,

                                  It sounds like you are probably Stage IIIc if you have no disease other than what you have mentioned.  While we are learning more about the synergistic effects of radiation and immunotherapy, radiation alone does not do as well.  Have your docs mentioned immunotherapy?  Ipi/Yervoy? Anti-PD1 (Either Nivo/Opdivo or Pembro/Keytruda)?  Or you probably qualify for the ipi/nivo trial for NED folks.  You can see what has been discussed re IIIC on a post just below yours:  http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/3c-adjuvant-nivoipineed-some

                                  The trial I am referring to is this one:  A Phase I Trial of a Vaccine Combining Multiple Class I Peptides and Montanide ISA 51VG With Escalating Doses of Anti-PD-1 Antibody Nivolumab or Ipilimumab With Nivolumab For Patients With Resected Stages IIIC/ IV Melanoma

                                  Only peptide and montanide vaccines are no longer required.  Still recruiting.

                                  ClinicalTrials.gov Identifier: NCT01176474
                                   
                                  There is also this one:   Efficacy Study of Nivolumab Compared to Ipilimumab in Prevention of Recurrence of Melanoma After Complete Resection of Stage IIIb/c or Stage IV Melanoma (CheckMate 238)

                                  ClinicalTrials.gov Identifier: NCT02388906
                                   
                                  You can out the trial # in:  https://clinicaltrials.gov/ct2/home
                                  and it will give you details of the trial, exclusions, locations, etc.
                                  Ask more questions here as you need.  I wish you my best.  Celeste

                                   

                                    • July 5, 2015 at 6:11 pm
                                    jamieth29
                                    Participant
                                      Mike,
                                      Unfortunately i did check into the yervoy/nivo trial as adjuvant on Thursday and was informed the trial is closed. They took there last patient 2 months ago. Apparently nobody has updated the trial.gov info. I am currently looking for any other hospitals with this combo. The checkmate 238 trial is open and recruiting in multiple locations.
                                      • July 5, 2015 at 6:11 pm
                                      jamieth29
                                      Participant
                                        Mike,
                                        Unfortunately i did check into the yervoy/nivo trial as adjuvant on Thursday and was informed the trial is closed. They took there last patient 2 months ago. Apparently nobody has updated the trial.gov info. I am currently looking for any other hospitals with this combo. The checkmate 238 trial is open and recruiting in multiple locations.
                                        • July 5, 2015 at 8:12 pm
                                        Bubbles
                                        Participant

                                          Thanks for letting everyone know that the ipi/nivo trial is now closed, Jamie.  I hate that.  Also sorry to have led you astray.  You had been asking about data re ipi vs nivo.  Thought you might be interested in this….not in NED patients but still…http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/combos-looking-goodbut-if-pd-l1.html

                                          Don't know how easily you could attain PD-L1 tumor testing.  Mine was done in the course of my trial but I was denied the results.  Hopefully, this will be available soon if not now. I would certainly ask about it.

                                          Good luck you and Mike.  C

                                          • July 5, 2015 at 8:12 pm
                                          Bubbles
                                          Participant

                                            Thanks for letting everyone know that the ipi/nivo trial is now closed, Jamie.  I hate that.  Also sorry to have led you astray.  You had been asking about data re ipi vs nivo.  Thought you might be interested in this….not in NED patients but still…http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/combos-looking-goodbut-if-pd-l1.html

                                            Don't know how easily you could attain PD-L1 tumor testing.  Mine was done in the course of my trial but I was denied the results.  Hopefully, this will be available soon if not now. I would certainly ask about it.

                                            Good luck you and Mike.  C

                                            • July 5, 2015 at 9:10 pm
                                            jamieth29
                                            Participant
                                              Celeste,
                                              As always thanks for the great info. My fault for not being more clear on the ipi vs nivo (checkmate 238). I am going for a consult on Tuesday for that trial. I am hoping i can find a pd-1 trial before committing to 238 and at least look into it. Mike i think you could join U.S trial but you would have to look into what the trial covers and what it doesn’t if your insurance wouldn’t cover a trial here. Although i am definitely not 100% sure of any facts for not being in U.S and insurance coverage.
                                              • July 5, 2015 at 9:10 pm
                                              jamieth29
                                              Participant
                                                Celeste,
                                                As always thanks for the great info. My fault for not being more clear on the ipi vs nivo (checkmate 238). I am going for a consult on Tuesday for that trial. I am hoping i can find a pd-1 trial before committing to 238 and at least look into it. Mike i think you could join U.S trial but you would have to look into what the trial covers and what it doesn’t if your insurance wouldn’t cover a trial here. Although i am definitely not 100% sure of any facts for not being in U.S and insurance coverage.
                                                • July 5, 2015 at 9:10 pm
                                                jamieth29
                                                Participant
                                                  Celeste,
                                                  As always thanks for the great info. My fault for not being more clear on the ipi vs nivo (checkmate 238). I am going for a consult on Tuesday for that trial. I am hoping i can find a pd-1 trial before committing to 238 and at least look into it. Mike i think you could join U.S trial but you would have to look into what the trial covers and what it doesn’t if your insurance wouldn’t cover a trial here. Although i am definitely not 100% sure of any facts for not being in U.S and insurance coverage.
                                                  • July 5, 2015 at 8:12 pm
                                                  Bubbles
                                                  Participant

                                                    Thanks for letting everyone know that the ipi/nivo trial is now closed, Jamie.  I hate that.  Also sorry to have led you astray.  You had been asking about data re ipi vs nivo.  Thought you might be interested in this….not in NED patients but still…http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/combos-looking-goodbut-if-pd-l1.html

                                                    Don't know how easily you could attain PD-L1 tumor testing.  Mine was done in the course of my trial but I was denied the results.  Hopefully, this will be available soon if not now. I would certainly ask about it.

                                                    Good luck you and Mike.  C

                                                    • July 5, 2015 at 6:11 pm
                                                    jamieth29
                                                    Participant
                                                      Mike,
                                                      Unfortunately i did check into the yervoy/nivo trial as adjuvant on Thursday and was informed the trial is closed. They took there last patient 2 months ago. Apparently nobody has updated the trial.gov info. I am currently looking for any other hospitals with this combo. The checkmate 238 trial is open and recruiting in multiple locations.
                                                      • July 5, 2015 at 8:40 pm
                                                      lmhl
                                                      Participant

                                                        Thank you Celeste 

                                                        I was told that they might start Vervoy after radiation.  I was also told that I didn''t qualifiy for any trials.  I am in Canada.  Does this make a difference?  

                                                        Mike

                                                        • July 5, 2015 at 8:40 pm
                                                        lmhl
                                                        Participant

                                                          Thank you Celeste 

                                                          I was told that they might start Vervoy after radiation.  I was also told that I didn''t qualifiy for any trials.  I am in Canada.  Does this make a difference?  

                                                          Mike

                                                          • July 5, 2015 at 8:40 pm
                                                          lmhl
                                                          Participant

                                                            Thank you Celeste 

                                                            I was told that they might start Vervoy after radiation.  I was also told that I didn''t qualifiy for any trials.  I am in Canada.  Does this make a difference?  

                                                            Mike

                                                            • July 5, 2015 at 9:08 pm
                                                            Bubbles
                                                            Participant

                                                              Hey Mike,

                                                              Trials are very tricky no matter where you are.  Perhaps Ed, our Canadian Mousketeer, can shed more light on trials available for Canadian peeps and how to access them.  However, if your docs are talking ipi/Yervoy combined with radiation (or VERY QUICKLY following) that is great news!  There's no contraindication for doing both at the same time.  Here are couple of posts that address how combining ipi with radiation is better: 

                                                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

                                                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

                                                              And just to make you smile (maybe???) the benefits of reservatrol and radiation???!!!:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/red-red-wineboosts-radiation-effect-for.html

                                                              I wish you my best.  C

                                                              • July 5, 2015 at 9:08 pm
                                                              Bubbles
                                                              Participant

                                                                Hey Mike,

                                                                Trials are very tricky no matter where you are.  Perhaps Ed, our Canadian Mousketeer, can shed more light on trials available for Canadian peeps and how to access them.  However, if your docs are talking ipi/Yervoy combined with radiation (or VERY QUICKLY following) that is great news!  There's no contraindication for doing both at the same time.  Here are couple of posts that address how combining ipi with radiation is better: 

                                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

                                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

                                                                And just to make you smile (maybe???) the benefits of reservatrol and radiation???!!!:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/red-red-wineboosts-radiation-effect-for.html

                                                                I wish you my best.  C

                                                                • July 5, 2015 at 9:08 pm
                                                                Bubbles
                                                                Participant

                                                                  Hey Mike,

                                                                  Trials are very tricky no matter where you are.  Perhaps Ed, our Canadian Mousketeer, can shed more light on trials available for Canadian peeps and how to access them.  However, if your docs are talking ipi/Yervoy combined with radiation (or VERY QUICKLY following) that is great news!  There's no contraindication for doing both at the same time.  Here are couple of posts that address how combining ipi with radiation is better: 

                                                                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

                                                                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

                                                                  And just to make you smile (maybe???) the benefits of reservatrol and radiation???!!!:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/red-red-wineboosts-radiation-effect-for.html

                                                                  I wish you my best.  C

                                                                  • July 5, 2015 at 9:34 pm
                                                                  ed williams
                                                                  Participant

                                                                    Mike with the number of nodes that you had positive I would be pushing hard for a brain Mri and Pet Ct scan. If you are not seeing a Melanoma specialist then try hard to get an appointment with one. I have been getting my treatments at the Ottawa general for the last 3 years and there are two great Melanoma Oncologist on staff. Wishing you the best!!! Ed

                                                                    • July 5, 2015 at 9:34 pm
                                                                    ed williams
                                                                    Participant

                                                                      Mike with the number of nodes that you had positive I would be pushing hard for a brain Mri and Pet Ct scan. If you are not seeing a Melanoma specialist then try hard to get an appointment with one. I have been getting my treatments at the Ottawa general for the last 3 years and there are two great Melanoma Oncologist on staff. Wishing you the best!!! Ed

                                                                      • July 5, 2015 at 9:34 pm
                                                                      ed williams
                                                                      Participant

                                                                        Mike with the number of nodes that you had positive I would be pushing hard for a brain Mri and Pet Ct scan. If you are not seeing a Melanoma specialist then try hard to get an appointment with one. I have been getting my treatments at the Ottawa general for the last 3 years and there are two great Melanoma Oncologist on staff. Wishing you the best!!! Ed

                                                                      • July 5, 2015 at 5:49 pm
                                                                      Bubbles
                                                                      Participant

                                                                        Hi Mike,

                                                                        It sounds like you are probably Stage IIIc if you have no disease other than what you have mentioned.  While we are learning more about the synergistic effects of radiation and immunotherapy, radiation alone does not do as well.  Have your docs mentioned immunotherapy?  Ipi/Yervoy? Anti-PD1 (Either Nivo/Opdivo or Pembro/Keytruda)?  Or you probably qualify for the ipi/nivo trial for NED folks.  You can see what has been discussed re IIIC on a post just below yours:  http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/3c-adjuvant-nivoipineed-some

                                                                        The trial I am referring to is this one:  A Phase I Trial of a Vaccine Combining Multiple Class I Peptides and Montanide ISA 51VG With Escalating Doses of Anti-PD-1 Antibody Nivolumab or Ipilimumab With Nivolumab For Patients With Resected Stages IIIC/ IV Melanoma

                                                                        Only peptide and montanide vaccines are no longer required.  Still recruiting.

                                                                        ClinicalTrials.gov Identifier: NCT01176474
                                                                         
                                                                        There is also this one:   Efficacy Study of Nivolumab Compared to Ipilimumab in Prevention of Recurrence of Melanoma After Complete Resection of Stage IIIb/c or Stage IV Melanoma (CheckMate 238)

                                                                        ClinicalTrials.gov Identifier: NCT02388906
                                                                         
                                                                        You can out the trial # in:  https://clinicaltrials.gov/ct2/home
                                                                        and it will give you details of the trial, exclusions, locations, etc.
                                                                        Ask more questions here as you need.  I wish you my best.  Celeste

                                                                         

                                                                        • July 5, 2015 at 5:49 pm
                                                                        Bubbles
                                                                        Participant

                                                                          Hi Mike,

                                                                          It sounds like you are probably Stage IIIc if you have no disease other than what you have mentioned.  While we are learning more about the synergistic effects of radiation and immunotherapy, radiation alone does not do as well.  Have your docs mentioned immunotherapy?  Ipi/Yervoy? Anti-PD1 (Either Nivo/Opdivo or Pembro/Keytruda)?  Or you probably qualify for the ipi/nivo trial for NED folks.  You can see what has been discussed re IIIC on a post just below yours:  http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/3c-adjuvant-nivoipineed-some

                                                                          The trial I am referring to is this one:  A Phase I Trial of a Vaccine Combining Multiple Class I Peptides and Montanide ISA 51VG With Escalating Doses of Anti-PD-1 Antibody Nivolumab or Ipilimumab With Nivolumab For Patients With Resected Stages IIIC/ IV Melanoma

                                                                          Only peptide and montanide vaccines are no longer required.  Still recruiting.

                                                                          ClinicalTrials.gov Identifier: NCT01176474
                                                                           
                                                                          There is also this one:   Efficacy Study of Nivolumab Compared to Ipilimumab in Prevention of Recurrence of Melanoma After Complete Resection of Stage IIIb/c or Stage IV Melanoma (CheckMate 238)

                                                                          ClinicalTrials.gov Identifier: NCT02388906
                                                                           
                                                                          You can out the trial # in:  https://clinicaltrials.gov/ct2/home
                                                                          and it will give you details of the trial, exclusions, locations, etc.
                                                                          Ask more questions here as you need.  I wish you my best.  Celeste

                                                                           

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