Help, advice needed

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  • Post
    • February 17, 2013 at 4:51 pm
    BernieB
    Participant

       

       

      I am looking for input.
      This is my situation.  I was diagnosed with a T2 melanoma with a negative Sentinel lymph node in 2006.
      No issues till just before Christmas 2012 when I found inguinal lymph node.
      Pet scan was positive for a hyper metabolic inguinal load otherwise negative. MRI was negative. I had a inguinal lymph node section, the original note that I felt was positive in but all the other nodes, 14, when negative
      I am otherwise in good health, do not feel sick, and 69 years old, working full-time, so what do I do?
      The adverse events with interventions sound really bad. Is waiting for the next recurrence and then intervening reasonable?
      Getting a genetic marker for my melanoma is certainly a painless step.
      BernieB
    Viewing 14 reply threads
    • Replies
        • February 18, 2013 at 5:05 pm
        vivian
        Participant

          Dear Bernie,

          Although our circumstances are different in many ways, I am currently stage 4 NED after surgical removal of a solitary lung met.  I have done no treatment for melanoma except surgery.  The docs tell me that in my case, there is nothing to treat systemically right now.  So…I am just waiting and watching again and hoping for no return of melanoma, ever.  (One can always hope!)  I don't know if that is reasonable for everyone, but for me, it is!

          Best wishes to you,

          Lear

          • February 18, 2013 at 5:05 pm
          vivian
          Participant

            Dear Bernie,

            Although our circumstances are different in many ways, I am currently stage 4 NED after surgical removal of a solitary lung met.  I have done no treatment for melanoma except surgery.  The docs tell me that in my case, there is nothing to treat systemically right now.  So…I am just waiting and watching again and hoping for no return of melanoma, ever.  (One can always hope!)  I don't know if that is reasonable for everyone, but for me, it is!

            Best wishes to you,

            Lear

            • February 18, 2013 at 5:05 pm
            vivian
            Participant

              Dear Bernie,

              Although our circumstances are different in many ways, I am currently stage 4 NED after surgical removal of a solitary lung met.  I have done no treatment for melanoma except surgery.  The docs tell me that in my case, there is nothing to treat systemically right now.  So…I am just waiting and watching again and hoping for no return of melanoma, ever.  (One can always hope!)  I don't know if that is reasonable for everyone, but for me, it is!

              Best wishes to you,

              Lear

                • February 20, 2013 at 2:27 am
                BernieB
                Participant

                  Dear Lear,

                   

                  Thanks for your input. My inclination is the same as yours, do surgery if necessary and wait for better chemical interventions, with less adverse side effects, if I have that option.
                  I don't know if I am off-base with his thinking. I'm still recovering from my inguinal dissection, I have one drain out, one drain to go, and and feeling less tired. I'm anxious to get back to work, I will be meeting with the melanoma oncologist on the 27th. He is offering a trial of interferon  and two strengths of the unpronounceable ip…. I would be assigned to one of the three options randomly. At this point I think I will wait
                  But again if anybody has any opinions I would really appreciate the feedback.
                  Emotionally this is something that is really hard for my wife and I to get our heads around.
                  BernieB
                  • February 20, 2013 at 2:27 am
                  BernieB
                  Participant

                    Dear Lear,

                     

                    Thanks for your input. My inclination is the same as yours, do surgery if necessary and wait for better chemical interventions, with less adverse side effects, if I have that option.
                    I don't know if I am off-base with his thinking. I'm still recovering from my inguinal dissection, I have one drain out, one drain to go, and and feeling less tired. I'm anxious to get back to work, I will be meeting with the melanoma oncologist on the 27th. He is offering a trial of interferon  and two strengths of the unpronounceable ip…. I would be assigned to one of the three options randomly. At this point I think I will wait
                    But again if anybody has any opinions I would really appreciate the feedback.
                    Emotionally this is something that is really hard for my wife and I to get our heads around.
                    BernieB
                    • February 20, 2013 at 2:27 am
                    BernieB
                    Participant

                      Dear Lear,

                       

                      Thanks for your input. My inclination is the same as yours, do surgery if necessary and wait for better chemical interventions, with less adverse side effects, if I have that option.
                      I don't know if I am off-base with his thinking. I'm still recovering from my inguinal dissection, I have one drain out, one drain to go, and and feeling less tired. I'm anxious to get back to work, I will be meeting with the melanoma oncologist on the 27th. He is offering a trial of interferon  and two strengths of the unpronounceable ip…. I would be assigned to one of the three options randomly. At this point I think I will wait
                      But again if anybody has any opinions I would really appreciate the feedback.
                      Emotionally this is something that is really hard for my wife and I to get our heads around.
                      BernieB
                    • February 19, 2013 at 6:15 pm
                    Julie in SoCal
                    Participant

                      Hi Bernie,

                      I'm sorry to be meeting you under these circumstances.  This is one club no one want to belong to.  But it is filled with good supportive folk, who are very knowledgeable about Mel.

                      I myself don't have any specific treatment advice other than to say, make sure you are being seen by a melanoma specialist, not just a general oncologist.  Treatments are changing rapidly.  Just in the last 5 years I've been hanging around, I've seen many new treatments come (and many go) and new systematic treatments are avialable. 

                      If you don't have a Melanoma specialist, write another post saying where you live and ask if folks here know of a good Mel Dr in your area  This is a wonderful and rich information resouce  for stuff like that.

                      Or If you're in the US check out:http://www.melanoma.org/learn-more/melanoma-treatment-center-finder

                      and

                      http://www.melanoma.org/learn-more/melanoma-101/your-melanoma-treatment-team

                      Blessings,

                      Julie

                      3A, hand, WLE (3 times), SNB (twice) 1 month  HD-INF, 11 months GM-CSF

                      • February 19, 2013 at 6:15 pm
                      Julie in SoCal
                      Participant

                        Hi Bernie,

                        I'm sorry to be meeting you under these circumstances.  This is one club no one want to belong to.  But it is filled with good supportive folk, who are very knowledgeable about Mel.

                        I myself don't have any specific treatment advice other than to say, make sure you are being seen by a melanoma specialist, not just a general oncologist.  Treatments are changing rapidly.  Just in the last 5 years I've been hanging around, I've seen many new treatments come (and many go) and new systematic treatments are avialable. 

                        If you don't have a Melanoma specialist, write another post saying where you live and ask if folks here know of a good Mel Dr in your area  This is a wonderful and rich information resouce  for stuff like that.

                        Or If you're in the US check out:http://www.melanoma.org/learn-more/melanoma-treatment-center-finder

                        and

                        http://www.melanoma.org/learn-more/melanoma-101/your-melanoma-treatment-team

                        Blessings,

                        Julie

                        3A, hand, WLE (3 times), SNB (twice) 1 month  HD-INF, 11 months GM-CSF

                        • February 19, 2013 at 6:15 pm
                        Julie in SoCal
                        Participant

                          Hi Bernie,

                          I'm sorry to be meeting you under these circumstances.  This is one club no one want to belong to.  But it is filled with good supportive folk, who are very knowledgeable about Mel.

                          I myself don't have any specific treatment advice other than to say, make sure you are being seen by a melanoma specialist, not just a general oncologist.  Treatments are changing rapidly.  Just in the last 5 years I've been hanging around, I've seen many new treatments come (and many go) and new systematic treatments are avialable. 

                          If you don't have a Melanoma specialist, write another post saying where you live and ask if folks here know of a good Mel Dr in your area  This is a wonderful and rich information resouce  for stuff like that.

                          Or If you're in the US check out:http://www.melanoma.org/learn-more/melanoma-treatment-center-finder

                          and

                          http://www.melanoma.org/learn-more/melanoma-101/your-melanoma-treatment-team

                          Blessings,

                          Julie

                          3A, hand, WLE (3 times), SNB (twice) 1 month  HD-INF, 11 months GM-CSF

                            • February 20, 2013 at 2:35 am
                            BernieB
                            Participant

                               

                              Dear Julie, thanks for the feedback. I am in upstate New York, and am connected with Dr.Deepak at the U of R. Although I will probably follow the advice of numerous posts and get a second opinion.
                              Thanks again, BernieB
                              • February 20, 2013 at 2:35 am
                              BernieB
                              Participant

                                 

                                Dear Julie, thanks for the feedback. I am in upstate New York, and am connected with Dr.Deepak at the U of R. Although I will probably follow the advice of numerous posts and get a second opinion.
                                Thanks again, BernieB
                                • February 20, 2013 at 2:35 am
                                BernieB
                                Participant

                                   

                                  Dear Julie, thanks for the feedback. I am in upstate New York, and am connected with Dr.Deepak at the U of R. Although I will probably follow the advice of numerous posts and get a second opinion.
                                  Thanks again, BernieB
                                • February 20, 2013 at 2:48 am
                                BernieB
                                Participant

                                   

                                  Hello again, second thoughts
                                  Despite my inclination to wait and see what happens, I have this worrying thought that if my melanoma at this time is still in a microscopic stage wouldn't that be exactly the right time to jump in with some heavy-duty chemical intervention?
                                  Let me also shared that getting these thoughts out in the open, sharing with others is a great relief.
                                  BernieB
                                  • February 20, 2013 at 2:48 am
                                  BernieB
                                  Participant

                                     

                                    Hello again, second thoughts
                                    Despite my inclination to wait and see what happens, I have this worrying thought that if my melanoma at this time is still in a microscopic stage wouldn't that be exactly the right time to jump in with some heavy-duty chemical intervention?
                                    Let me also shared that getting these thoughts out in the open, sharing with others is a great relief.
                                    BernieB
                                    • February 20, 2013 at 2:48 am
                                    BernieB
                                    Participant

                                       

                                      Hello again, second thoughts
                                      Despite my inclination to wait and see what happens, I have this worrying thought that if my melanoma at this time is still in a microscopic stage wouldn't that be exactly the right time to jump in with some heavy-duty chemical intervention?
                                      Let me also shared that getting these thoughts out in the open, sharing with others is a great relief.
                                      BernieB
                                        • February 20, 2013 at 8:36 pm
                                        buffcody
                                        Participant

                                          My situation was comparable to Lear's.  My age and general condition, though I was working part-time, comparable to yours.  My lung node was removed by surgery.  My local oncologist recommended my signing up for the trial that you are looking at.  My "melanoma center" onclogist, whom I have gone with, recommended watch and wait.  I choose watch and wait.  My October MRI showed up two mets to the brain.  The latter onc recommended Yervoy which since I had the metastasis I could now qualify for under insurance and FDA.  The brain mets were hit half way through my treatment with SRS.  A friend of a friend oncologist, who had worked her residency with melanoma patients, had informally advised during the time after my surgery to stay away from further treatment until needed.  No point, she felt, in feeling sick when one doesn't have to.  I don't regret following that advice even though the brain mets showed up.  One can always second guess but there is no guarantee at all they would not have shown up anyway, and my melanoma to all accounts is not rapid growth.  I have only one tumor now (probably a tumor) which showed up in my left buttock last month. 

                                          However, if you are uncertain or would like to get into a Yervoy possibility, 2/3 of those in the trial you are talking about get it, remember you can sign up and drop out.  It will be very clear to you very early on whether you have been sampled into Yervoy or interferon.

                                          • February 20, 2013 at 8:36 pm
                                          buffcody
                                          Participant

                                            My situation was comparable to Lear's.  My age and general condition, though I was working part-time, comparable to yours.  My lung node was removed by surgery.  My local oncologist recommended my signing up for the trial that you are looking at.  My "melanoma center" onclogist, whom I have gone with, recommended watch and wait.  I choose watch and wait.  My October MRI showed up two mets to the brain.  The latter onc recommended Yervoy which since I had the metastasis I could now qualify for under insurance and FDA.  The brain mets were hit half way through my treatment with SRS.  A friend of a friend oncologist, who had worked her residency with melanoma patients, had informally advised during the time after my surgery to stay away from further treatment until needed.  No point, she felt, in feeling sick when one doesn't have to.  I don't regret following that advice even though the brain mets showed up.  One can always second guess but there is no guarantee at all they would not have shown up anyway, and my melanoma to all accounts is not rapid growth.  I have only one tumor now (probably a tumor) which showed up in my left buttock last month. 

                                            However, if you are uncertain or would like to get into a Yervoy possibility, 2/3 of those in the trial you are talking about get it, remember you can sign up and drop out.  It will be very clear to you very early on whether you have been sampled into Yervoy or interferon.

                                            • February 20, 2013 at 8:36 pm
                                            buffcody
                                            Participant

                                              My situation was comparable to Lear's.  My age and general condition, though I was working part-time, comparable to yours.  My lung node was removed by surgery.  My local oncologist recommended my signing up for the trial that you are looking at.  My "melanoma center" onclogist, whom I have gone with, recommended watch and wait.  I choose watch and wait.  My October MRI showed up two mets to the brain.  The latter onc recommended Yervoy which since I had the metastasis I could now qualify for under insurance and FDA.  The brain mets were hit half way through my treatment with SRS.  A friend of a friend oncologist, who had worked her residency with melanoma patients, had informally advised during the time after my surgery to stay away from further treatment until needed.  No point, she felt, in feeling sick when one doesn't have to.  I don't regret following that advice even though the brain mets showed up.  One can always second guess but there is no guarantee at all they would not have shown up anyway, and my melanoma to all accounts is not rapid growth.  I have only one tumor now (probably a tumor) which showed up in my left buttock last month. 

                                              However, if you are uncertain or would like to get into a Yervoy possibility, 2/3 of those in the trial you are talking about get it, remember you can sign up and drop out.  It will be very clear to you very early on whether you have been sampled into Yervoy or interferon.

                                            • February 22, 2013 at 7:37 am
                                            Cynthia C
                                            Participant

                                              Hi Bernie, A tough decision and an individual one. I had a 3.1mm melanoma removed and 2 positive nodes on the sentinel node biopsy. All the other nodes (groin) were negative. I was treated with high dose interferon but only lasted through 8 doses. No other treatment. I have been NED for 11 years. I'm sending positive thoughts your way. 

                                              Cynthia

                                              • February 22, 2013 at 7:37 am
                                              Cynthia C
                                              Participant

                                                Hi Bernie, A tough decision and an individual one. I had a 3.1mm melanoma removed and 2 positive nodes on the sentinel node biopsy. All the other nodes (groin) were negative. I was treated with high dose interferon but only lasted through 8 doses. No other treatment. I have been NED for 11 years. I'm sending positive thoughts your way. 

                                                Cynthia

                                                • February 22, 2013 at 7:37 am
                                                Cynthia C
                                                Participant

                                                  Hi Bernie, A tough decision and an individual one. I had a 3.1mm melanoma removed and 2 positive nodes on the sentinel node biopsy. All the other nodes (groin) were negative. I was treated with high dose interferon but only lasted through 8 doses. No other treatment. I have been NED for 11 years. I'm sending positive thoughts your way. 

                                                  Cynthia

                                                  • February 22, 2013 at 7:20 pm
                                                  JerryfromFauq
                                                  Participant

                                                    Bernie,

                                                      Personally I would like to see trials of lower dose Ipi and IL-2 involving Stage III patients rather than the wait and see proceedure normally used.  I have nothing against the wait and see, but would like to know if the lower dose systemic course would reduce re-occurances, while having lower side effects.  I am less enthused about Interferon, but for a low percentage of people it seems to have been beneficial.  I could not see the one year regime that was the only Interferon course offered when I was known to be stage III.

                                                    • February 22, 2013 at 7:20 pm
                                                    JerryfromFauq
                                                    Participant

                                                      Bernie,

                                                        Personally I would like to see trials of lower dose Ipi and IL-2 involving Stage III patients rather than the wait and see proceedure normally used.  I have nothing against the wait and see, but would like to know if the lower dose systemic course would reduce re-occurances, while having lower side effects.  I am less enthused about Interferon, but for a low percentage of people it seems to have been beneficial.  I could not see the one year regime that was the only Interferon course offered when I was known to be stage III.

                                                      • February 22, 2013 at 7:20 pm
                                                      JerryfromFauq
                                                      Participant

                                                        Bernie,

                                                          Personally I would like to see trials of lower dose Ipi and IL-2 involving Stage III patients rather than the wait and see proceedure normally used.  I have nothing against the wait and see, but would like to know if the lower dose systemic course would reduce re-occurances, while having lower side effects.  I am less enthused about Interferon, but for a low percentage of people it seems to have been beneficial.  I could not see the one year regime that was the only Interferon course offered when I was known to be stage III.

                                                          • February 26, 2013 at 3:20 am
                                                          BernieB
                                                          Participant

                                                            Hello again, my question is "how fast can melanoma grow". I had an inquinal lymphectomy, one positive node. Now just about a month later there is this substantial "lump" under the skin, close to the original surgery. What gives? I am getting it checked out tomorrow but pretty scary. Any thoughts? BernieB

                                                            • February 26, 2013 at 3:20 am
                                                            BernieB
                                                            Participant

                                                              Hello again, my question is "how fast can melanoma grow". I had an inquinal lymphectomy, one positive node. Now just about a month later there is this substantial "lump" under the skin, close to the original surgery. What gives? I am getting it checked out tomorrow but pretty scary. Any thoughts? BernieB

                                                              • February 26, 2013 at 3:20 am
                                                              BernieB
                                                              Participant

                                                                Hello again, my question is "how fast can melanoma grow". I had an inquinal lymphectomy, one positive node. Now just about a month later there is this substantial "lump" under the skin, close to the original surgery. What gives? I am getting it checked out tomorrow but pretty scary. Any thoughts? BernieB

                                                                • February 26, 2013 at 4:21 am
                                                                JerryfromFauq
                                                                Participant

                                                                  I would get to the Oncologist.  Mine went from "Got it all" to golfball sized in three months.  They well want to try a needle bioplsy.  Mine was not clear and the lump kept getting larger.  I sad take it out  and they did.  It was big and black.  They can grow fast.  It is always possible that this is a pocket of fluid or blood, but I would waant the Oncologist to determmine which as soon as possible.

                                                                  • February 26, 2013 at 4:21 am
                                                                  JerryfromFauq
                                                                  Participant

                                                                    I would get to the Oncologist.  Mine went from "Got it all" to golfball sized in three months.  They well want to try a needle bioplsy.  Mine was not clear and the lump kept getting larger.  I sad take it out  and they did.  It was big and black.  They can grow fast.  It is always possible that this is a pocket of fluid or blood, but I would waant the Oncologist to determmine which as soon as possible.

                                                                    • February 26, 2013 at 4:21 am
                                                                    JerryfromFauq
                                                                    Participant

                                                                      I would get to the Oncologist.  Mine went from "Got it all" to golfball sized in three months.  They well want to try a needle bioplsy.  Mine was not clear and the lump kept getting larger.  I sad take it out  and they did.  It was big and black.  They can grow fast.  It is always possible that this is a pocket of fluid or blood, but I would waant the Oncologist to determmine which as soon as possible.

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