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New Stage III maybe IV

Forums General Melanoma Community New Stage III maybe IV

  • Post
    273c
    Participant

      So the short story is, hubby found a lump in his armpit which turned out to be melanoma.  So far he has had a PET/CT scan, seen dermatology and talked to a few different surgeons.  

      The only tumors are the lymph node (lump) and a small (less than a cm) one by (not in) his liver.  I should also add he itches terribly and recently started getting patches of vitiligo.  So it seems his body is mounting an immune response on its own. 

      Next week he is scheduled for opthomology (still looking for the primary site) and an MRI.  We will also likely end up at medical oncology.   The docs, mostly surgeons so far have all talked about removing the tumors and then maybe some "immunotherapy" or radiation after the surgery. 

      I am trying to get up to speed on the various treatment options.  I've done the various internet searches and one doc did mention Yervoy.  It looks like Keytruda is better and has fewer side effects, any thought?

      Are there treatments I should ask about?  Some that I should be wary of? 

       

      Thanks

    Viewing 14 reply threads
    • Replies
        Bubbles
        Participant

          You need to make sure that you are seeing a melanoma specialist.  Not all oncologists are up to date on melanoma care.  You also need to make sure that your husband's melanoma is tested to determine its BRAF status (a mutation that about half of melanoma patients have).  That is important in knowing whether or not BRAF inhibitors would be effective should he need them.  They do not work when patients are not BRAF positive.  Anti-PD1 is one of the best drugs going.  There are two…Nivolumab (Opdivo) and Pembrolizumab (Keytruda).  They have about the same response rate and side effect profile.  Sadly, in order for insurance to cover them based on how they were given FDA approval not so long ago…you must be Stage IV or Stage III with special inoperable circumstances and have already failed BRAF inhibitors if you are BRAF positive as well as IPI (Yervoy).  However, an even better response is attained when ipi is combined with nivo.  However, this is available only in trials.  They are ongoing…and there are slots for patients who are NED (no evidence of disease) as well as for patients with measurable disease.  That is a whirlwind response that may or may not be pertinent to your husband's current status.  Hang in there.  Take one day at a time.  This site will be an amazing resource.  Get a melanoma SPECIALIST!!!!!  I cannot stress how important that could turn out to be!!!  My best, Celeste

            273c
            Participant

              Thanks!

               

              I am still trying to figure out the whole BRAF thing.  Is that determined by blood test or do they do genetic testing on the tumor once it is removed? 

               

              If they remove both his tumors presumably he would be NED, but once NED what is the value of opdivo or Keytruda?   

               

              It  looks like there is some big oncology meeting at the end of the month, will things change (Keytruda get moved above IPI) or do those treatment recommendations need to get processed through the FDA?

               

              i am assuming things like chemo, IL-2 and interferon our pretty much pointless now that these newer drugs are available.  Is that correct? 

               

              Thanks for for all your posts as I have gone back and read a few already.  When we first got the diagnosis (two weeks ago) it was very helpful to come see posts from people who have been living with melanoma for years.

              273c
              Participant

                Thanks!

                 

                I am still trying to figure out the whole BRAF thing.  Is that determined by blood test or do they do genetic testing on the tumor once it is removed? 

                 

                If they remove both his tumors presumably he would be NED, but once NED what is the value of opdivo or Keytruda?   

                 

                It  looks like there is some big oncology meeting at the end of the month, will things change (Keytruda get moved above IPI) or do those treatment recommendations need to get processed through the FDA?

                 

                i am assuming things like chemo, IL-2 and interferon our pretty much pointless now that these newer drugs are available.  Is that correct? 

                 

                Thanks for for all your posts as I have gone back and read a few already.  When we first got the diagnosis (two weeks ago) it was very helpful to come see posts from people who have been living with melanoma for years.

                Bubbles
                Participant

                  Here is information on BRAF…what it means, why it is important.  It is determined by testing the tumor.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

                  Yes, if you have no identifiable tumor burden then you are NED which is good.  If you are NED, you may be the sort to want to "watch and wait".  That is fine for some folks.  But more and more researchers are thinking that if you go ahead and treat NED people then you can deal with any micromets so they can never come back to bite you.  Additionally, it is becoming more recognized that immunotherapy works best when the patient has the least disease burden.  Many drugs are now beginning to be offered this way with NED trials in process.  Here is a post about NED (also called adjuvant treatment) trials and treatment.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html

                  Here is a post about the NED trial arms of ipi vs nivo:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

                  ASCO is held in Chicago each June.  Is a report by researchers on what they have done during the past year.  It has no direct effect on FDA approval.  Therefore, even if all data shows clearly that response rates to anti-PD1 are better than those to ipi (which it already does) there will be no immediate change in how the meds are FDA approved.

                  Dacarbazine and traditional chemo are sometimes used with melanoma after patients have failed to respond to more effective options.  They are not first line and certainly not recommended for patients with little disease burden or are NED.

                  Interferon has demonstrated no change in survival rates and is poorly tolerated.  IL2 can create durable responses albeit in small numbers of patients.  So it can still be a viable treatment.  Currently it is most often used as part of TIL therapy rather than a stand alone therapy, although that is still done as well.  It can be very toxic and requires hospitalization.

                  Hope this helps.  C

                   

                  Bubbles
                  Participant

                    Here is information on BRAF…what it means, why it is important.  It is determined by testing the tumor.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

                    Yes, if you have no identifiable tumor burden then you are NED which is good.  If you are NED, you may be the sort to want to "watch and wait".  That is fine for some folks.  But more and more researchers are thinking that if you go ahead and treat NED people then you can deal with any micromets so they can never come back to bite you.  Additionally, it is becoming more recognized that immunotherapy works best when the patient has the least disease burden.  Many drugs are now beginning to be offered this way with NED trials in process.  Here is a post about NED (also called adjuvant treatment) trials and treatment.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html

                    Here is a post about the NED trial arms of ipi vs nivo:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

                    ASCO is held in Chicago each June.  Is a report by researchers on what they have done during the past year.  It has no direct effect on FDA approval.  Therefore, even if all data shows clearly that response rates to anti-PD1 are better than those to ipi (which it already does) there will be no immediate change in how the meds are FDA approved.

                    Dacarbazine and traditional chemo are sometimes used with melanoma after patients have failed to respond to more effective options.  They are not first line and certainly not recommended for patients with little disease burden or are NED.

                    Interferon has demonstrated no change in survival rates and is poorly tolerated.  IL2 can create durable responses albeit in small numbers of patients.  So it can still be a viable treatment.  Currently it is most often used as part of TIL therapy rather than a stand alone therapy, although that is still done as well.  It can be very toxic and requires hospitalization.

                    Hope this helps.  C

                     

                    273c
                    Participant

                      Thank you!

                       

                      This is very helpful.  I am still working on digesting all the options. 

                      273c
                      Participant

                        Thank you!

                         

                        This is very helpful.  I am still working on digesting all the options. 

                        273c
                        Participant

                          Thank you!

                           

                          This is very helpful.  I am still working on digesting all the options. 

                          Bubbles
                          Participant

                            Here is information on BRAF…what it means, why it is important.  It is determined by testing the tumor.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

                            Yes, if you have no identifiable tumor burden then you are NED which is good.  If you are NED, you may be the sort to want to "watch and wait".  That is fine for some folks.  But more and more researchers are thinking that if you go ahead and treat NED people then you can deal with any micromets so they can never come back to bite you.  Additionally, it is becoming more recognized that immunotherapy works best when the patient has the least disease burden.  Many drugs are now beginning to be offered this way with NED trials in process.  Here is a post about NED (also called adjuvant treatment) trials and treatment.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html

                            Here is a post about the NED trial arms of ipi vs nivo:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

                            ASCO is held in Chicago each June.  Is a report by researchers on what they have done during the past year.  It has no direct effect on FDA approval.  Therefore, even if all data shows clearly that response rates to anti-PD1 are better than those to ipi (which it already does) there will be no immediate change in how the meds are FDA approved.

                            Dacarbazine and traditional chemo are sometimes used with melanoma after patients have failed to respond to more effective options.  They are not first line and certainly not recommended for patients with little disease burden or are NED.

                            Interferon has demonstrated no change in survival rates and is poorly tolerated.  IL2 can create durable responses albeit in small numbers of patients.  So it can still be a viable treatment.  Currently it is most often used as part of TIL therapy rather than a stand alone therapy, although that is still done as well.  It can be very toxic and requires hospitalization.

                            Hope this helps.  C

                             

                            273c
                            Participant

                              Thanks!

                               

                              I am still trying to figure out the whole BRAF thing.  Is that determined by blood test or do they do genetic testing on the tumor once it is removed? 

                               

                              If they remove both his tumors presumably he would be NED, but once NED what is the value of opdivo or Keytruda?   

                               

                              It  looks like there is some big oncology meeting at the end of the month, will things change (Keytruda get moved above IPI) or do those treatment recommendations need to get processed through the FDA?

                               

                              i am assuming things like chemo, IL-2 and interferon our pretty much pointless now that these newer drugs are available.  Is that correct? 

                               

                              Thanks for for all your posts as I have gone back and read a few already.  When we first got the diagnosis (two weeks ago) it was very helpful to come see posts from people who have been living with melanoma for years.

                            Bubbles
                            Participant

                              You need to make sure that you are seeing a melanoma specialist.  Not all oncologists are up to date on melanoma care.  You also need to make sure that your husband's melanoma is tested to determine its BRAF status (a mutation that about half of melanoma patients have).  That is important in knowing whether or not BRAF inhibitors would be effective should he need them.  They do not work when patients are not BRAF positive.  Anti-PD1 is one of the best drugs going.  There are two…Nivolumab (Opdivo) and Pembrolizumab (Keytruda).  They have about the same response rate and side effect profile.  Sadly, in order for insurance to cover them based on how they were given FDA approval not so long ago…you must be Stage IV or Stage III with special inoperable circumstances and have already failed BRAF inhibitors if you are BRAF positive as well as IPI (Yervoy).  However, an even better response is attained when ipi is combined with nivo.  However, this is available only in trials.  They are ongoing…and there are slots for patients who are NED (no evidence of disease) as well as for patients with measurable disease.  That is a whirlwind response that may or may not be pertinent to your husband's current status.  Hang in there.  Take one day at a time.  This site will be an amazing resource.  Get a melanoma SPECIALIST!!!!!  I cannot stress how important that could turn out to be!!!  My best, Celeste

                              Bubbles
                              Participant

                                You need to make sure that you are seeing a melanoma specialist.  Not all oncologists are up to date on melanoma care.  You also need to make sure that your husband's melanoma is tested to determine its BRAF status (a mutation that about half of melanoma patients have).  That is important in knowing whether or not BRAF inhibitors would be effective should he need them.  They do not work when patients are not BRAF positive.  Anti-PD1 is one of the best drugs going.  There are two…Nivolumab (Opdivo) and Pembrolizumab (Keytruda).  They have about the same response rate and side effect profile.  Sadly, in order for insurance to cover them based on how they were given FDA approval not so long ago…you must be Stage IV or Stage III with special inoperable circumstances and have already failed BRAF inhibitors if you are BRAF positive as well as IPI (Yervoy).  However, an even better response is attained when ipi is combined with nivo.  However, this is available only in trials.  They are ongoing…and there are slots for patients who are NED (no evidence of disease) as well as for patients with measurable disease.  That is a whirlwind response that may or may not be pertinent to your husband's current status.  Hang in there.  Take one day at a time.  This site will be an amazing resource.  Get a melanoma SPECIALIST!!!!!  I cannot stress how important that could turn out to be!!!  My best, Celeste

                                Patina
                                Participant

                                  Make sure that he gets a MRI of his brain.  Melanoma is notorious for traveling there and you want to ensure that its caught as soon as possible if that is the case.

                                  You don't mention if you are seeing a melanoma specialist or where you are. (In Los Angeles I would recommend: Dr. Michael Wong at USC or Dr. Peter Bosaberg at the Angeles Clinic.) If you are not seeing a melanoma specialist I would highly recommend finding one and setting up one or more appointments to go over his options.  There are many treatments and each, depending on your husbands health, should be discussed.

                                  If you do schedule other appointments be sure to have copies of all your repots and CD's with you and bring a tape recorder or someone else with you to take notes and ask questions.  The appointments can be stressful and a second person can help you navigate this, while a recorder will get everything verbatim.

                                  In my Mothers case she saw 4 melanoma specialists and unfortunately the original radiologist did NOT identify the brain mets (brain cancer) until 3 weeks after her ordinal scans. Lucky for us the 3rd melanoma specialist had his radiologist look at the CD's (not just the reports) and found the brain mets.  So, I encourage everyone to seek a second and even third opinions not just because you have another set of eyes, but because you will be able to discuss options that you may not have explored yet. Melanoma specialists may also have access to clinical trials that you also may want to consider too.

                                  My Mom had gamma knife radiation for 8 of 9 brain tumors (1 was MISSED!) 4 days before starting Yervoy (its an immunotherapy).  – She never had whole brain radiation and it was never discussed with us.  (I do understand that WBR  may not be the better of the two and that gamma knife radiation only treats a small area, which may decrease cognitive issues.) While she did only have 3 of the 4 infusions  and did end up with 17 more brain tumors about 4 months later, they were all successfully treated at USC in Los Angles last year by Dr. Eric Chang. (She was treated for the brain mets at a different hospital originally and when we heard that she had "just 1 more tumor" and that we should check in on this in another 2 months we went for an emergency consult at USC. We were very lucky to have gotten that consult. She was treated for 17 the next week!)  

                                  Yervoy proved to be a silver bullet almost for her and she has amazed everyone with how well she has done. The vast majority of cancer is gone, everything else is still shrinking or stable and she has no cognitive issues and has been cleared to drive some time ago.  Her oncologists have been very very positive and do not expect her to need any further treatment. 

                                  I hope everything goes as well for you and can only say that asking questions from people here before you appointments is a great place to start. Many people here have gone through one or more treatments and can give you great perspective and advice. 

                                  Good Luck!

                                   

                                   

                                   

                                    273c
                                    Participant

                                      The brain MRI was today's adventure.  Hopefully we will get results on Wednesday.  Good to know terms like gamma knife and whole brain radiation.  I am crossing my fingers and hoping there are no brain mets. 

                                      273c
                                      Participant

                                        The brain MRI was today's adventure.  Hopefully we will get results on Wednesday.  Good to know terms like gamma knife and whole brain radiation.  I am crossing my fingers and hoping there are no brain mets. 

                                        273c
                                        Participant

                                          The brain MRI was today's adventure.  Hopefully we will get results on Wednesday.  Good to know terms like gamma knife and whole brain radiation.  I am crossing my fingers and hoping there are no brain mets. 

                                        Patina
                                        Participant

                                          Make sure that he gets a MRI of his brain.  Melanoma is notorious for traveling there and you want to ensure that its caught as soon as possible if that is the case.

                                          You don't mention if you are seeing a melanoma specialist or where you are. (In Los Angeles I would recommend: Dr. Michael Wong at USC or Dr. Peter Bosaberg at the Angeles Clinic.) If you are not seeing a melanoma specialist I would highly recommend finding one and setting up one or more appointments to go over his options.  There are many treatments and each, depending on your husbands health, should be discussed.

                                          If you do schedule other appointments be sure to have copies of all your repots and CD's with you and bring a tape recorder or someone else with you to take notes and ask questions.  The appointments can be stressful and a second person can help you navigate this, while a recorder will get everything verbatim.

                                          In my Mothers case she saw 4 melanoma specialists and unfortunately the original radiologist did NOT identify the brain mets (brain cancer) until 3 weeks after her ordinal scans. Lucky for us the 3rd melanoma specialist had his radiologist look at the CD's (not just the reports) and found the brain mets.  So, I encourage everyone to seek a second and even third opinions not just because you have another set of eyes, but because you will be able to discuss options that you may not have explored yet. Melanoma specialists may also have access to clinical trials that you also may want to consider too.

                                          My Mom had gamma knife radiation for 8 of 9 brain tumors (1 was MISSED!) 4 days before starting Yervoy (its an immunotherapy).  – She never had whole brain radiation and it was never discussed with us.  (I do understand that WBR  may not be the better of the two and that gamma knife radiation only treats a small area, which may decrease cognitive issues.) While she did only have 3 of the 4 infusions  and did end up with 17 more brain tumors about 4 months later, they were all successfully treated at USC in Los Angles last year by Dr. Eric Chang. (She was treated for the brain mets at a different hospital originally and when we heard that she had "just 1 more tumor" and that we should check in on this in another 2 months we went for an emergency consult at USC. We were very lucky to have gotten that consult. She was treated for 17 the next week!)  

                                          Yervoy proved to be a silver bullet almost for her and she has amazed everyone with how well she has done. The vast majority of cancer is gone, everything else is still shrinking or stable and she has no cognitive issues and has been cleared to drive some time ago.  Her oncologists have been very very positive and do not expect her to need any further treatment. 

                                          I hope everything goes as well for you and can only say that asking questions from people here before you appointments is a great place to start. Many people here have gone through one or more treatments and can give you great perspective and advice. 

                                          Good Luck!

                                           

                                           

                                           

                                          Patina
                                          Participant

                                            Make sure that he gets a MRI of his brain.  Melanoma is notorious for traveling there and you want to ensure that its caught as soon as possible if that is the case.

                                            You don't mention if you are seeing a melanoma specialist or where you are. (In Los Angeles I would recommend: Dr. Michael Wong at USC or Dr. Peter Bosaberg at the Angeles Clinic.) If you are not seeing a melanoma specialist I would highly recommend finding one and setting up one or more appointments to go over his options.  There are many treatments and each, depending on your husbands health, should be discussed.

                                            If you do schedule other appointments be sure to have copies of all your repots and CD's with you and bring a tape recorder or someone else with you to take notes and ask questions.  The appointments can be stressful and a second person can help you navigate this, while a recorder will get everything verbatim.

                                            In my Mothers case she saw 4 melanoma specialists and unfortunately the original radiologist did NOT identify the brain mets (brain cancer) until 3 weeks after her ordinal scans. Lucky for us the 3rd melanoma specialist had his radiologist look at the CD's (not just the reports) and found the brain mets.  So, I encourage everyone to seek a second and even third opinions not just because you have another set of eyes, but because you will be able to discuss options that you may not have explored yet. Melanoma specialists may also have access to clinical trials that you also may want to consider too.

                                            My Mom had gamma knife radiation for 8 of 9 brain tumors (1 was MISSED!) 4 days before starting Yervoy (its an immunotherapy).  – She never had whole brain radiation and it was never discussed with us.  (I do understand that WBR  may not be the better of the two and that gamma knife radiation only treats a small area, which may decrease cognitive issues.) While she did only have 3 of the 4 infusions  and did end up with 17 more brain tumors about 4 months later, they were all successfully treated at USC in Los Angles last year by Dr. Eric Chang. (She was treated for the brain mets at a different hospital originally and when we heard that she had "just 1 more tumor" and that we should check in on this in another 2 months we went for an emergency consult at USC. We were very lucky to have gotten that consult. She was treated for 17 the next week!)  

                                            Yervoy proved to be a silver bullet almost for her and she has amazed everyone with how well she has done. The vast majority of cancer is gone, everything else is still shrinking or stable and she has no cognitive issues and has been cleared to drive some time ago.  Her oncologists have been very very positive and do not expect her to need any further treatment. 

                                            I hope everything goes as well for you and can only say that asking questions from people here before you appointments is a great place to start. Many people here have gone through one or more treatments and can give you great perspective and advice. 

                                            Good Luck!

                                             

                                             

                                             

                                            ecc26
                                            Participant

                                              Not to repeat too much of what has already been stated, but at least one melanoma specialist is definitely the way to go. I have seen at least 2, and while I primarily see one, I know I have the other to consult with if I feel it's necessary. The second also is the one that had access to the trial I wanted to be in. 

                                              One thing that has not been said, but I feel is important, is that no one treatment is necessarily better than another. Everyone's disease is different and responds differently to the therapies. Going along with that, everyone's body responds differently to each of the therapies and the number and severity of side effects has nothing to do with whether or not the therapy is working or not. I have had horrible side effects on some therapies that didn't work at all and currently (having made my way through everything else available) am having excellent results with the PD-1 and no side effects at all. Others had few to no side effects and great luck with Ipi, others had terrible side effects but good luck with Ipi, etc. 

                                              So to avoid being to lengthy, I will just end with every person and every case is different. The most important thing to do is to find a good medical team, be well informed on your options, choose the best option for YOU (not what was best for someone else, even someone on this forum) and do not be afraid to argue your point. BE YOUR OWN ADVOCATE. It has been my experience that oncologists and speicialists do not mind, and mine actually prefer, you asking questions and challenging them from time to time. If they don't take the time to answer your questions and address your concerns, or tell you it's not something you have to concern yourself with- FIND A NEW DOCTOR! They should not be dismmissive or act superior in any way!

                                               

                                              Best of luck!

                                              -Eva

                                              ecc26
                                              Participant

                                                Not to repeat too much of what has already been stated, but at least one melanoma specialist is definitely the way to go. I have seen at least 2, and while I primarily see one, I know I have the other to consult with if I feel it's necessary. The second also is the one that had access to the trial I wanted to be in. 

                                                One thing that has not been said, but I feel is important, is that no one treatment is necessarily better than another. Everyone's disease is different and responds differently to the therapies. Going along with that, everyone's body responds differently to each of the therapies and the number and severity of side effects has nothing to do with whether or not the therapy is working or not. I have had horrible side effects on some therapies that didn't work at all and currently (having made my way through everything else available) am having excellent results with the PD-1 and no side effects at all. Others had few to no side effects and great luck with Ipi, others had terrible side effects but good luck with Ipi, etc. 

                                                So to avoid being to lengthy, I will just end with every person and every case is different. The most important thing to do is to find a good medical team, be well informed on your options, choose the best option for YOU (not what was best for someone else, even someone on this forum) and do not be afraid to argue your point. BE YOUR OWN ADVOCATE. It has been my experience that oncologists and speicialists do not mind, and mine actually prefer, you asking questions and challenging them from time to time. If they don't take the time to answer your questions and address your concerns, or tell you it's not something you have to concern yourself with- FIND A NEW DOCTOR! They should not be dismmissive or act superior in any way!

                                                 

                                                Best of luck!

                                                -Eva

                                                  273c
                                                  Participant

                                                    Your last sentence is extremely helpful.  Knowing that a good oncologist expect questions is good to know.  I have done a fair amount of Internet research which can be off putting to some docs. 

                                                    273c
                                                    Participant

                                                      Your last sentence is extremely helpful.  Knowing that a good oncologist expect questions is good to know.  I have done a fair amount of Internet research which can be off putting to some docs. 

                                                      273c
                                                      Participant

                                                        Your last sentence is extremely helpful.  Knowing that a good oncologist expect questions is good to know.  I have done a fair amount of Internet research which can be off putting to some docs. 

                                                      ecc26
                                                      Participant

                                                        Not to repeat too much of what has already been stated, but at least one melanoma specialist is definitely the way to go. I have seen at least 2, and while I primarily see one, I know I have the other to consult with if I feel it's necessary. The second also is the one that had access to the trial I wanted to be in. 

                                                        One thing that has not been said, but I feel is important, is that no one treatment is necessarily better than another. Everyone's disease is different and responds differently to the therapies. Going along with that, everyone's body responds differently to each of the therapies and the number and severity of side effects has nothing to do with whether or not the therapy is working or not. I have had horrible side effects on some therapies that didn't work at all and currently (having made my way through everything else available) am having excellent results with the PD-1 and no side effects at all. Others had few to no side effects and great luck with Ipi, others had terrible side effects but good luck with Ipi, etc. 

                                                        So to avoid being to lengthy, I will just end with every person and every case is different. The most important thing to do is to find a good medical team, be well informed on your options, choose the best option for YOU (not what was best for someone else, even someone on this forum) and do not be afraid to argue your point. BE YOUR OWN ADVOCATE. It has been my experience that oncologists and speicialists do not mind, and mine actually prefer, you asking questions and challenging them from time to time. If they don't take the time to answer your questions and address your concerns, or tell you it's not something you have to concern yourself with- FIND A NEW DOCTOR! They should not be dismmissive or act superior in any way!

                                                         

                                                        Best of luck!

                                                        -Eva

                                                        Linny
                                                        Participant

                                                          Sounds like your hubby has what's known as melanoma with an unknown primary. He should have undergone a thorough skin exam, with particularly close scruitiny of his shoulder area. Melanoma cells drain into the nearest group of lymph nodes, which in his case happened to be by his armpit.

                                                          I totally agree with everyone here who has told you to make sure he's seeing a melanoma specialist, especially given the fact that his primary site is not known. Melanoma with an unknown primary is an unusual entity and not as common as a melanoma found on the skin. The number of those diagnosed with melanoma with an unknown primary ranges from as low as 2% to as high as 20%, depending on which study you read. The theory is that the melanoma probably started out on the skin and the body's immune system zapped it but a few cells managed to escape and set up housekeeping in a lymph node.

                                                          Linny
                                                          Participant

                                                            Sounds like your hubby has what's known as melanoma with an unknown primary. He should have undergone a thorough skin exam, with particularly close scruitiny of his shoulder area. Melanoma cells drain into the nearest group of lymph nodes, which in his case happened to be by his armpit.

                                                            I totally agree with everyone here who has told you to make sure he's seeing a melanoma specialist, especially given the fact that his primary site is not known. Melanoma with an unknown primary is an unusual entity and not as common as a melanoma found on the skin. The number of those diagnosed with melanoma with an unknown primary ranges from as low as 2% to as high as 20%, depending on which study you read. The theory is that the melanoma probably started out on the skin and the body's immune system zapped it but a few cells managed to escape and set up housekeeping in a lymph node.

                                                              273c
                                                              Participant

                                                                Your signature sounds like my husband!  Dermatology did a full body skin exam.  There is one spot on his arm that might be the primary site.  Several years ago he had it checked a couple times and docs said, no not  a problem.  It eventually healed and basically went away.  They have biopsied the area and we are waiting on the pathology for that. 

                                                                 

                                                                He he is having a lot of itching and in the past couple weeks he is getting more and more patchy (vitiligo) it sure looks like his body is mounting an immune response to the cancer.   I can imagine his body zapped the primary site. 

                                                                Thanks!!!

                                                                273c
                                                                Participant

                                                                  Your signature sounds like my husband!  Dermatology did a full body skin exam.  There is one spot on his arm that might be the primary site.  Several years ago he had it checked a couple times and docs said, no not  a problem.  It eventually healed and basically went away.  They have biopsied the area and we are waiting on the pathology for that. 

                                                                   

                                                                  He he is having a lot of itching and in the past couple weeks he is getting more and more patchy (vitiligo) it sure looks like his body is mounting an immune response to the cancer.   I can imagine his body zapped the primary site. 

                                                                  Thanks!!!

                                                                  273c
                                                                  Participant

                                                                    Your signature sounds like my husband!  Dermatology did a full body skin exam.  There is one spot on his arm that might be the primary site.  Several years ago he had it checked a couple times and docs said, no not  a problem.  It eventually healed and basically went away.  They have biopsied the area and we are waiting on the pathology for that. 

                                                                     

                                                                    He he is having a lot of itching and in the past couple weeks he is getting more and more patchy (vitiligo) it sure looks like his body is mounting an immune response to the cancer.   I can imagine his body zapped the primary site. 

                                                                    Thanks!!!

                                                                  Linny
                                                                  Participant

                                                                    Sounds like your hubby has what's known as melanoma with an unknown primary. He should have undergone a thorough skin exam, with particularly close scruitiny of his shoulder area. Melanoma cells drain into the nearest group of lymph nodes, which in his case happened to be by his armpit.

                                                                    I totally agree with everyone here who has told you to make sure he's seeing a melanoma specialist, especially given the fact that his primary site is not known. Melanoma with an unknown primary is an unusual entity and not as common as a melanoma found on the skin. The number of those diagnosed with melanoma with an unknown primary ranges from as low as 2% to as high as 20%, depending on which study you read. The theory is that the melanoma probably started out on the skin and the body's immune system zapped it but a few cells managed to escape and set up housekeeping in a lymph node.

                                                                    raeds
                                                                    Participant

                                                                      Have you heard about herpes virus immunotherapy? Trials in Utah listed below. 25% cured, and over 60% massive response.

                                                                       

                                                                       

                                                                      http://healthcare.utah.edu/huntsmancancerinstitute/clinical-trials/find-clinical-trials-at-hci/melanoma.php

                                                                       

                                                                      http://www.foxnews.com/health/2015/04/08/possible-cure-for-melanoma/

                                                                      raeds
                                                                      Participant

                                                                        Have you heard about herpes virus immunotherapy? Trials in Utah listed below. 25% cured, and over 60% massive response.

                                                                         

                                                                         

                                                                        http://healthcare.utah.edu/huntsmancancerinstitute/clinical-trials/find-clinical-trials-at-hci/melanoma.php

                                                                         

                                                                        http://www.foxnews.com/health/2015/04/08/possible-cure-for-melanoma/

                                                                        raeds
                                                                        Participant

                                                                          Have you heard about herpes virus immunotherapy? Trials in Utah listed below. 25% cured, and over 60% massive response.

                                                                           

                                                                           

                                                                          http://healthcare.utah.edu/huntsmancancerinstitute/clinical-trials/find-clinical-trials-at-hci/melanoma.php

                                                                           

                                                                          http://www.foxnews.com/health/2015/04/08/possible-cure-for-melanoma/

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