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Neck Disections and interferon for a year.

Forums General Melanoma Community Neck Disections and interferon for a year.

  • Post
    tony9511
    Participant

      My Onc just called me in this morning.  I was wondering about the results of the node pathologies from last weeks wide excision.  Was concerned the first time I dxed with mel the tracer showed it only draining to my neck.  When the mel recurrence came back and I had my surgery last Tuesday, the pet scan was neg but the tracer showed it draining to both my neck node and armpit node.  Well the neck was pos for cancer so I have the surgery set for neck disection April 12, than I will be on interferon (sp) for a year.  Thanks to all who viewed my ramblings and replied.&

      My Onc just called me in this morning.  I was wondering about the results of the node pathologies from last weeks wide excision.  Was concerned the first time I dxed with mel the tracer showed it only draining to my neck.  When the mel recurrence came back and I had my surgery last Tuesday, the pet scan was neg but the tracer showed it draining to both my neck node and armpit node.  Well the neck was pos for cancer so I have the surgery set for neck disection April 12, than I will be on interferon (sp) for a year.  Thanks to all who viewed my ramblings and replied.  I am positive I can beat this crap and live a good life.  Being 39 my goal is to make it as long as possible.  To all the brave souls affected by this terrible disease and their loved ones god bless and I pray for you all.  I am still learning so much about it.

      Tony

      [email protected]

    Viewing 11 reply threads
    • Replies
        washoegal
        Participant

          Tony,

          Sorry to hear to have joined us at Stage 3 but it's not at all the end of the world.  You do need to be asking some more questions though.  Interferon is a controversial treatment.  Unfortunately we at Stage 3 STILL only have that or "wait and watch" as approved treatments.  There are clinical trials but since you are going through the VA i don't suppose those are an option for you. 

          Anyway here are some of the questions you should be asking.

          How any nodes were involved?

          Were the nodes micro or macro involved with Melanoma?

          What is the success rate of Interferon in Melanoma Patients?

          What are the side effects of Interferon?

           

          you can read the answers to the last 2 questions hear by doing a search but you should also have the conversation with your doctor.  I had 2 out of 4 nodes microscopically involved and chose not to do interferon.  I did have a complete node dissection, which NOW is even becoming controversial for that small of an involvement.  However, 3 years later I'm still here!  Ask questions and make a decision that seems right for you than never look back.

          Good Luck,

          Mary

          washoegal
          Participant

            Tony,

            Sorry to hear to have joined us at Stage 3 but it's not at all the end of the world.  You do need to be asking some more questions though.  Interferon is a controversial treatment.  Unfortunately we at Stage 3 STILL only have that or "wait and watch" as approved treatments.  There are clinical trials but since you are going through the VA i don't suppose those are an option for you. 

            Anyway here are some of the questions you should be asking.

            How any nodes were involved?

            Were the nodes micro or macro involved with Melanoma?

            What is the success rate of Interferon in Melanoma Patients?

            What are the side effects of Interferon?

             

            you can read the answers to the last 2 questions hear by doing a search but you should also have the conversation with your doctor.  I had 2 out of 4 nodes microscopically involved and chose not to do interferon.  I did have a complete node dissection, which NOW is even becoming controversial for that small of an involvement.  However, 3 years later I'm still here!  Ask questions and make a decision that seems right for you than never look back.

            Good Luck,

            Mary

              tony9511
              Participant

                Thank you so much for the info!  I will ask the questions next week when I get my staples and stiches removed.  Just a lot to think about so quick.  Thank you Thank you and Thank you again for the info.  I am still accepting and learning so much so fast.

                Tony

                tony9511
                Participant

                  Thank you so much for the info!  I will ask the questions next week when I get my staples and stiches removed.  Just a lot to think about so quick.  Thank you Thank you and Thank you again for the info.  I am still accepting and learning so much so fast.

                  Tony

                  tony9511
                  Participant

                    Thank you so much for the info!  I will ask the questions next week when I get my staples and stiches removed.  Just a lot to think about so quick.  Thank you Thank you and Thank you again for the info.  I am still accepting and learning so much so fast.

                    Tony

                    sjl
                    Participant

                      Mary, I am confused, as usual!  My husband is at stage 3c, mucosal.  His problems are with tumors in his neck.  You and others here have mentioned that for Stage 3 it is just "wait and see" or interferon.  For my husband, neither of those was an option.  His tumors popped up and were growing so fast that something had to be done quickly and further surgery was not an option.  He did several rounds of carbo/taxol, which I know is not popular here, but it worked for him for about 5 months, shrinking the tumors as fast as they grew.  When that quit working, they put him on Yervoy, which he can now handle since the tumors haven't grown as fast as they did before.  We still don't know if it's going to work as he has had only 3 rounds.  If things take off like wild again they wil try the chemo again to shrink things down and give the yervoy more time.  His options seem to limited due to other issues.  I'm just wondering why others at stage 3 are not offered something like this or am I misunderstanding something?  And if anyone reading this knows of more options my husband could try I'd like to here of them.  He's cKit and BRAF negative, NRAS positive, with a history of a secondary primary lung cancer, which has knocked him out of trials. 

                      sjl
                      Participant

                        Mary, I am confused, as usual!  My husband is at stage 3c, mucosal.  His problems are with tumors in his neck.  You and others here have mentioned that for Stage 3 it is just "wait and see" or interferon.  For my husband, neither of those was an option.  His tumors popped up and were growing so fast that something had to be done quickly and further surgery was not an option.  He did several rounds of carbo/taxol, which I know is not popular here, but it worked for him for about 5 months, shrinking the tumors as fast as they grew.  When that quit working, they put him on Yervoy, which he can now handle since the tumors haven't grown as fast as they did before.  We still don't know if it's going to work as he has had only 3 rounds.  If things take off like wild again they wil try the chemo again to shrink things down and give the yervoy more time.  His options seem to limited due to other issues.  I'm just wondering why others at stage 3 are not offered something like this or am I misunderstanding something?  And if anyone reading this knows of more options my husband could try I'd like to here of them.  He's cKit and BRAF negative, NRAS positive, with a history of a secondary primary lung cancer, which has knocked him out of trials. 

                        sjl
                        Participant

                          Mary, I am confused, as usual!  My husband is at stage 3c, mucosal.  His problems are with tumors in his neck.  You and others here have mentioned that for Stage 3 it is just "wait and see" or interferon.  For my husband, neither of those was an option.  His tumors popped up and were growing so fast that something had to be done quickly and further surgery was not an option.  He did several rounds of carbo/taxol, which I know is not popular here, but it worked for him for about 5 months, shrinking the tumors as fast as they grew.  When that quit working, they put him on Yervoy, which he can now handle since the tumors haven't grown as fast as they did before.  We still don't know if it's going to work as he has had only 3 rounds.  If things take off like wild again they wil try the chemo again to shrink things down and give the yervoy more time.  His options seem to limited due to other issues.  I'm just wondering why others at stage 3 are not offered something like this or am I misunderstanding something?  And if anyone reading this knows of more options my husband could try I'd like to here of them.  He's cKit and BRAF negative, NRAS positive, with a history of a secondary primary lung cancer, which has knocked him out of trials. 

                          huffman6djgirl
                          Participant

                            I was 38 when I was originally diagnosed with microscopic melanoma in 2/4 lymphnodes removed via snb, also had a dissection of right axillary lymphnodes, this started april 2009. At the time I chose not to persue interferon, used the watch and wait. In Jan 30 2013 my pet scan showed melanoma in my right clavicle. I had surgery in feb 2013. I am going to participate in a study with the zelboraf. However, each person has to make their own personal choices. I felt then, and still feel that the interferon is not the right option for me. I am currently considered disease free, and pray everyday to remain so. Good luck to you. ( I did test positive for BRAF)

                            huffman6djgirl
                            Participant

                              I was 38 when I was originally diagnosed with microscopic melanoma in 2/4 lymphnodes removed via snb, also had a dissection of right axillary lymphnodes, this started april 2009. At the time I chose not to persue interferon, used the watch and wait. In Jan 30 2013 my pet scan showed melanoma in my right clavicle. I had surgery in feb 2013. I am going to participate in a study with the zelboraf. However, each person has to make their own personal choices. I felt then, and still feel that the interferon is not the right option for me. I am currently considered disease free, and pray everyday to remain so. Good luck to you. ( I did test positive for BRAF)

                              huffman6djgirl
                              Participant

                                I was 38 when I was originally diagnosed with microscopic melanoma in 2/4 lymphnodes removed via snb, also had a dissection of right axillary lymphnodes, this started april 2009. At the time I chose not to persue interferon, used the watch and wait. In Jan 30 2013 my pet scan showed melanoma in my right clavicle. I had surgery in feb 2013. I am going to participate in a study with the zelboraf. However, each person has to make their own personal choices. I felt then, and still feel that the interferon is not the right option for me. I am currently considered disease free, and pray everyday to remain so. Good luck to you. ( I did test positive for BRAF)

                                Janner
                                Participant

                                  The difference in your situation is "unresectable" disease.  When surgery isn't an option for stage III, you are included in treatments designed for stage IV.  Most stage III people have surgery and are then NED – no evidence of disease.   So treatments are considered adjuvant.  Interferon is an immunotherapy drug or immune system booster designed to ramp up your own immune system to kill melanoma.  But Interferon is not for active treatment of disease.  So if you are stage III with melanoma actively growing and cannot be removed surgically, you can look to most therapies for stage IV as options.

                                  Best wishes,

                                  Janner

                                  Janner
                                  Participant

                                    The difference in your situation is "unresectable" disease.  When surgery isn't an option for stage III, you are included in treatments designed for stage IV.  Most stage III people have surgery and are then NED – no evidence of disease.   So treatments are considered adjuvant.  Interferon is an immunotherapy drug or immune system booster designed to ramp up your own immune system to kill melanoma.  But Interferon is not for active treatment of disease.  So if you are stage III with melanoma actively growing and cannot be removed surgically, you can look to most therapies for stage IV as options.

                                    Best wishes,

                                    Janner

                                    Janner
                                    Participant

                                      The difference in your situation is "unresectable" disease.  When surgery isn't an option for stage III, you are included in treatments designed for stage IV.  Most stage III people have surgery and are then NED – no evidence of disease.   So treatments are considered adjuvant.  Interferon is an immunotherapy drug or immune system booster designed to ramp up your own immune system to kill melanoma.  But Interferon is not for active treatment of disease.  So if you are stage III with melanoma actively growing and cannot be removed surgically, you can look to most therapies for stage IV as options.

                                      Best wishes,

                                      Janner

                                    washoegal
                                    Participant

                                      Tony,

                                      Sorry to hear to have joined us at Stage 3 but it's not at all the end of the world.  You do need to be asking some more questions though.  Interferon is a controversial treatment.  Unfortunately we at Stage 3 STILL only have that or "wait and watch" as approved treatments.  There are clinical trials but since you are going through the VA i don't suppose those are an option for you. 

                                      Anyway here are some of the questions you should be asking.

                                      How any nodes were involved?

                                      Were the nodes micro or macro involved with Melanoma?

                                      What is the success rate of Interferon in Melanoma Patients?

                                      What are the side effects of Interferon?

                                       

                                      you can read the answers to the last 2 questions hear by doing a search but you should also have the conversation with your doctor.  I had 2 out of 4 nodes microscopically involved and chose not to do interferon.  I did have a complete node dissection, which NOW is even becoming controversial for that small of an involvement.  However, 3 years later I'm still here!  Ask questions and make a decision that seems right for you than never look back.

                                      Good Luck,

                                      Mary

                                      doro
                                      Participant

                                        Hi Tony,

                                        Best of luck with the upcoming surgery! The positive attitude seems key to this whole thing and I'm glad to read you are feeling positive about it. My father had a bilateral neck dissection a few months ago. Throughout this process, we have repeatedly heard the opinion that melanoma medicine has really advanced over the last decade and his current oncologist is relatively confident that some new things will be approved in the next couple years. While we may not see the magical "cure all" we all hope for, it's good to know that researchers are making progress against this disease.

                                        I also wanted to share a recent thread in which another member of this board asked about the recovery process for a neck dissection in case it is helpful for your planning. Of course, everyone is different, and you are younger than my father so your recovery may be speedier but if you are interested you can read it here: http://www.melanoma.org/community/mpip-melanoma-patients-information-page/recovery-time.

                                        Thanks,

                                        Doro

                                        doro
                                        Participant

                                          Hi Tony,

                                          Best of luck with the upcoming surgery! The positive attitude seems key to this whole thing and I'm glad to read you are feeling positive about it. My father had a bilateral neck dissection a few months ago. Throughout this process, we have repeatedly heard the opinion that melanoma medicine has really advanced over the last decade and his current oncologist is relatively confident that some new things will be approved in the next couple years. While we may not see the magical "cure all" we all hope for, it's good to know that researchers are making progress against this disease.

                                          I also wanted to share a recent thread in which another member of this board asked about the recovery process for a neck dissection in case it is helpful for your planning. Of course, everyone is different, and you are younger than my father so your recovery may be speedier but if you are interested you can read it here: http://www.melanoma.org/community/mpip-melanoma-patients-information-page/recovery-time.

                                          Thanks,

                                          Doro

                                          doro
                                          Participant

                                            Hi Tony,

                                            Best of luck with the upcoming surgery! The positive attitude seems key to this whole thing and I'm glad to read you are feeling positive about it. My father had a bilateral neck dissection a few months ago. Throughout this process, we have repeatedly heard the opinion that melanoma medicine has really advanced over the last decade and his current oncologist is relatively confident that some new things will be approved in the next couple years. While we may not see the magical "cure all" we all hope for, it's good to know that researchers are making progress against this disease.

                                            I also wanted to share a recent thread in which another member of this board asked about the recovery process for a neck dissection in case it is helpful for your planning. Of course, everyone is different, and you are younger than my father so your recovery may be speedier but if you are interested you can read it here: http://www.melanoma.org/community/mpip-melanoma-patients-information-page/recovery-time.

                                            Thanks,

                                            Doro

                                            Harry in Fair Oaks
                                            Participant

                                              Before you sign on to the interferon, I urge you to consider the GlaxoSmithKline clinical trial of BRAF/MEK inhibitors for Stage III patients..  I posted the info a month or two ago – I think you can navigate to it by going to my profile.  Please discuss this with your oncologist.

                                              Best wishes,

                                              Harry

                                              Harry in Fair Oaks
                                              Participant

                                                Before you sign on to the interferon, I urge you to consider the GlaxoSmithKline clinical trial of BRAF/MEK inhibitors for Stage III patients..  I posted the info a month or two ago – I think you can navigate to it by going to my profile.  Please discuss this with your oncologist.

                                                Best wishes,

                                                Harry

                                                  Thandster
                                                  Participant
                                                    There are no sites in the US listed and when I corresponded with someone from gsk a few weeks ago all they would tell me is to please choose a different trial because there are no US locations participating. Makes no sense, but that’s what I was told.
                                                    Thandster
                                                    Participant
                                                      There are no sites in the US listed and when I corresponded with someone from gsk a few weeks ago all they would tell me is to please choose a different trial because there are no US locations participating. Makes no sense, but that’s what I was told.
                                                      Thandster
                                                      Participant
                                                        There are no sites in the US listed and when I corresponded with someone from gsk a few weeks ago all they would tell me is to please choose a different trial because there are no US locations participating. Makes no sense, but that’s what I was told.
                                                      Harry in Fair Oaks
                                                      Participant

                                                        Before you sign on to the interferon, I urge you to consider the GlaxoSmithKline clinical trial of BRAF/MEK inhibitors for Stage III patients..  I posted the info a month or two ago – I think you can navigate to it by going to my profile.  Please discuss this with your oncologist.

                                                        Best wishes,

                                                        Harry

                                                        kathycmc
                                                        Participant

                                                          My daughter is 24 and is stage IIIb – primary site was a mole on her neck and one lymph node involved.  She had neck dissection surgery and was offered either wait and see, interferon for one year or biochemotherapy which is 5 drugs including interleukin 2 and interferon.  Even though she is NED she chose the adjuvant biochemotherapy which involves 3 cycles of 5 days in the hospital with 2 1/2 weeks between cycles.  She is being treated at Kaiser Permanente in Riverside California.  They say this treatment has shown significantly better results than interferon for stage III.

                                                          kathycmc
                                                          Participant

                                                            My daughter is 24 and is stage IIIb – primary site was a mole on her neck and one lymph node involved.  She had neck dissection surgery and was offered either wait and see, interferon for one year or biochemotherapy which is 5 drugs including interleukin 2 and interferon.  Even though she is NED she chose the adjuvant biochemotherapy which involves 3 cycles of 5 days in the hospital with 2 1/2 weeks between cycles.  She is being treated at Kaiser Permanente in Riverside California.  They say this treatment has shown significantly better results than interferon for stage III.

                                                              tony9511
                                                              Participant

                                                                Thank you kindly for your information.  All of this is new to me.  The worst of it being the burden in my own mind that I put on my close friends.  I will find out and inquire about all the available treatmens before my neck dessection surgery April 12th.  I might/might not be limited do to the fact that the Veterans Administration Hospital is conducting the op etc.  But I do know one thing, people like yourself, janner and way to many others to list have provided me with a wealth of information that I never believed I could find on the internet, plus information to ask my oncologist and surgeon as well.  Thoughts and prayers to all who are affected my this junk.  

                                                                Tony (39 Tucson Az)

                                                                tony9511
                                                                Participant

                                                                  Thank you kindly for your information.  All of this is new to me.  The worst of it being the burden in my own mind that I put on my close friends.  I will find out and inquire about all the available treatmens before my neck dessection surgery April 12th.  I might/might not be limited do to the fact that the Veterans Administration Hospital is conducting the op etc.  But I do know one thing, people like yourself, janner and way to many others to list have provided me with a wealth of information that I never believed I could find on the internet, plus information to ask my oncologist and surgeon as well.  Thoughts and prayers to all who are affected my this junk.  

                                                                  Tony (39 Tucson Az)

                                                                  tony9511
                                                                  Participant

                                                                    Thank you kindly for your information.  All of this is new to me.  The worst of it being the burden in my own mind that I put on my close friends.  I will find out and inquire about all the available treatmens before my neck dessection surgery April 12th.  I might/might not be limited do to the fact that the Veterans Administration Hospital is conducting the op etc.  But I do know one thing, people like yourself, janner and way to many others to list have provided me with a wealth of information that I never believed I could find on the internet, plus information to ask my oncologist and surgeon as well.  Thoughts and prayers to all who are affected my this junk.  

                                                                    Tony (39 Tucson Az)

                                                                  kathycmc
                                                                  Participant

                                                                    My daughter is 24 and is stage IIIb – primary site was a mole on her neck and one lymph node involved.  She had neck dissection surgery and was offered either wait and see, interferon for one year or biochemotherapy which is 5 drugs including interleukin 2 and interferon.  Even though she is NED she chose the adjuvant biochemotherapy which involves 3 cycles of 5 days in the hospital with 2 1/2 weeks between cycles.  She is being treated at Kaiser Permanente in Riverside California.  They say this treatment has shown significantly better results than interferon for stage III.

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