radiation
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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 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 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 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 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 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 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 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 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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