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BRAF, Yervoy or Surgery – requesting opinion/feedback

Forums General Melanoma Community BRAF, Yervoy or Surgery – requesting opinion/feedback

  • Post
    bs010kbb
    Participant
      Quick update, I started Interferon in September after having a full groin dissection on my left leg and a small mass in the upper left thigh muscle. I made it through December….had all side effects known and scans were updated in December showing disease back in thigh muscle deep in the muscle again but local to the prior area. Prepared myself for another resection with the surgeon recommending radiation. Surgery was to be tomorrow but has been postponed for now. While waiting for surgery, I received another opinion on radiation; however that developed into so much more.

      Quick update, I started Interferon in September after having a full groin dissection on my left leg and a small mass in the upper left thigh muscle. I made it through December….had all side effects known and scans were updated in December showing disease back in thigh muscle deep in the muscle again but local to the prior area. Prepared myself for another resection with the surgeon recommending radiation. Surgery was to be tomorrow but has been postponed for now. While waiting for surgery, I received another opinion on radiation; however that developed into so much more. Without disclosing where I went, both hospitals are top eight with one being ranked within the top two….regardless, I now have three opinions. The two new hospitals say don’t repeat surgery…surgeon will never get it all as I am too high of a risk. One hospital wishes to place me on Yervoy and the other wishes to place me on BRAF…..again, both opposed to surgery. My oncologist wants me to proceed with surgery and reserve the drugs. I also spoke with the Director of my hospital and he feels that there is such a small window for surgery options that if I am still in that criteria I should consider that first. He feels the drugs are so new and while there are some responders, he felt most testing on these drugs was with disease that spread beyond options for surgery. He said what we do know is that surgery has always been the thought of melanoma treatment and while we can resect, resect. The top hospitals feel the drugs potentially could keep me NED for longer……thoughts, PLEASE…Keep in mind prior surgery was just in June and I was only NED for 6 months,

    Viewing 17 reply threads
    • Replies
        gabsound
        Participant
          Hi, my story is a little different. My original lesion was medial to the right knee. Surgery 2/2011 WLE and complete lymph node dissection. Micromets 1 node. Had a tumor come up in 06/2011at bottom of lymph node scar. Had completed 1 month high dose interferon mid June. Surgery 07/11 removed tumor melanoma. Hematoma came up in surgery site not long after. Did 4 rounds of biochemo July, aug,sep, oct. Tumor developed in same site. Would shrink a bit w 1st couple of treatments. Between 3rd and 4th biochemo round tumor started growing. After 4th treatment really started growing.

          Oncologist gave option of surgery 1st or IPI to shrink tumor then surgery. I couldn’t handle thought of leaving tumor in. My surgeon took a rather large chunk of my leg. Aggressive surgery. Deep margin was questionably clear. He did have to take out some muscle. I healed well and no problem w use of leg. I asked about further surgery if we need it. He said he could go back again and depending on how much muscle it would affect function, but could be done. Surgery was end of November. Started Yervoy 3rd week of December and started radiation treatment to the area last week. My oncologist said let’s hit it hard as we may not have many more chances before this could spread beyond the leg.

          I say if your surgeon thinks it can be done, I’d do that 1st then add on systemic med and possibly radiation.

          Let us know how it goes.

          Julie in Las Vegas

          gabsound
          Participant
            Hi, my story is a little different. My original lesion was medial to the right knee. Surgery 2/2011 WLE and complete lymph node dissection. Micromets 1 node. Had a tumor come up in 06/2011at bottom of lymph node scar. Had completed 1 month high dose interferon mid June. Surgery 07/11 removed tumor melanoma. Hematoma came up in surgery site not long after. Did 4 rounds of biochemo July, aug,sep, oct. Tumor developed in same site. Would shrink a bit w 1st couple of treatments. Between 3rd and 4th biochemo round tumor started growing. After 4th treatment really started growing.

            Oncologist gave option of surgery 1st or IPI to shrink tumor then surgery. I couldn’t handle thought of leaving tumor in. My surgeon took a rather large chunk of my leg. Aggressive surgery. Deep margin was questionably clear. He did have to take out some muscle. I healed well and no problem w use of leg. I asked about further surgery if we need it. He said he could go back again and depending on how much muscle it would affect function, but could be done. Surgery was end of November. Started Yervoy 3rd week of December and started radiation treatment to the area last week. My oncologist said let’s hit it hard as we may not have many more chances before this could spread beyond the leg.

            I say if your surgeon thinks it can be done, I’d do that 1st then add on systemic med and possibly radiation.

            Let us know how it goes.

            Julie in Las Vegas

              bs010kbb
              Participant
                Julie, thank you so much for your reply. I appreciate your time. One question, how did you get approved for surgery and Yervoy? Did you enter a trial? I was told surgery would view me as NED again and I would not be eligible for bio chemical drugs. Were you approved because margins were questionable?
                bs010kbb
                Participant
                  Julie, thank you so much for your reply. I appreciate your time. One question, how did you get approved for surgery and Yervoy? Did you enter a trial? I was told surgery would view me as NED again and I would not be eligible for bio chemical drugs. Were you approved because margins were questionable?
                  gabsound
                  Participant
                    Kim,

                    I sent you a new Email,

                    Julie

                    gabsound
                    Participant
                      Kim,

                      I sent you a new Email,

                      Julie

                      gabsound
                      Participant
                        Kim,

                        I sent you a new Email,

                        Julie

                        bs010kbb
                        Participant
                          Julie, thank you so much for your reply. I appreciate your time. One question, how did you get approved for surgery and Yervoy? Did you enter a trial? I was told surgery would view me as NED again and I would not be eligible for bio chemical drugs. Were you approved because margins were questionable?
                        gabsound
                        Participant
                          Hi, my story is a little different. My original lesion was medial to the right knee. Surgery 2/2011 WLE and complete lymph node dissection. Micromets 1 node. Had a tumor come up in 06/2011at bottom of lymph node scar. Had completed 1 month high dose interferon mid June. Surgery 07/11 removed tumor melanoma. Hematoma came up in surgery site not long after. Did 4 rounds of biochemo July, aug,sep, oct. Tumor developed in same site. Would shrink a bit w 1st couple of treatments. Between 3rd and 4th biochemo round tumor started growing. After 4th treatment really started growing.

                          Oncologist gave option of surgery 1st or IPI to shrink tumor then surgery. I couldn’t handle thought of leaving tumor in. My surgeon took a rather large chunk of my leg. Aggressive surgery. Deep margin was questionably clear. He did have to take out some muscle. I healed well and no problem w use of leg. I asked about further surgery if we need it. He said he could go back again and depending on how much muscle it would affect function, but could be done. Surgery was end of November. Started Yervoy 3rd week of December and started radiation treatment to the area last week. My oncologist said let’s hit it hard as we may not have many more chances before this could spread beyond the leg.

                          I say if your surgeon thinks it can be done, I’d do that 1st then add on systemic med and possibly radiation.

                          Let us know how it goes.

                          Julie in Las Vegas

                          lhaley
                          Participant

                            I'm sorry that your dealing with the recurrance.  Decisions are ultimately yours but I'm just throwing in my experience.

                            First of all some melanoma is more aggressive then others, that makes a difference in the final decision.   Seeing where you live I'm assuming the 2 institutions you have talked to (I'm originally from Smyrna).   I had 7 recurrances that I dealt with surgically.  The only systemic drugs I've used was part of a trial with GMCSF.  I'm now dealing with a brain met (5 years later), radiation is finished and have responded but now edema has caused more issues and am having a crainectomy next week. 

                            About 6 months ago we thought that I was having another recurrance (ended up being a fatty tissue spot) my melanoma specialist at that point was saying that the recurrances were just getting too quick together.  When not needed his thoughts were buying me 6 months was ok (my situation) but 3 months (that time would have been the time frame) needed to go more aggressively.   The first time my surgery got me 2.5 years!    We have had many on the board that has just used surgery. 

                            My local oncologist has been pushing BRAF towards me when possible.  My mel specialist is putting that drug off it doesn't last. Of course if you need to lower the tumor load it can work. 

                            Wishing you the best,

                            Linda

                            lhaley
                            Participant

                              I'm sorry that your dealing with the recurrance.  Decisions are ultimately yours but I'm just throwing in my experience.

                              First of all some melanoma is more aggressive then others, that makes a difference in the final decision.   Seeing where you live I'm assuming the 2 institutions you have talked to (I'm originally from Smyrna).   I had 7 recurrances that I dealt with surgically.  The only systemic drugs I've used was part of a trial with GMCSF.  I'm now dealing with a brain met (5 years later), radiation is finished and have responded but now edema has caused more issues and am having a crainectomy next week. 

                              About 6 months ago we thought that I was having another recurrance (ended up being a fatty tissue spot) my melanoma specialist at that point was saying that the recurrances were just getting too quick together.  When not needed his thoughts were buying me 6 months was ok (my situation) but 3 months (that time would have been the time frame) needed to go more aggressively.   The first time my surgery got me 2.5 years!    We have had many on the board that has just used surgery. 

                              My local oncologist has been pushing BRAF towards me when possible.  My mel specialist is putting that drug off it doesn't last. Of course if you need to lower the tumor load it can work. 

                              Wishing you the best,

                              Linda

                                bs010kbb
                                Participant
                                  Linda, thank you for your reply. I am sorry to hear you are dealing with this again as well. I truly appreciate you taking the time to reply and I value your feedback. Best of luck to you.
                                  bs010kbb
                                  Participant
                                    Linda, thank you for your reply. I am sorry to hear you are dealing with this again as well. I truly appreciate you taking the time to reply and I value your feedback. Best of luck to you.
                                    bs010kbb
                                    Participant
                                      Linda, thank you for your reply. I am sorry to hear you are dealing with this again as well. I truly appreciate you taking the time to reply and I value your feedback. Best of luck to you.
                                    lhaley
                                    Participant

                                      I'm sorry that your dealing with the recurrance.  Decisions are ultimately yours but I'm just throwing in my experience.

                                      First of all some melanoma is more aggressive then others, that makes a difference in the final decision.   Seeing where you live I'm assuming the 2 institutions you have talked to (I'm originally from Smyrna).   I had 7 recurrances that I dealt with surgically.  The only systemic drugs I've used was part of a trial with GMCSF.  I'm now dealing with a brain met (5 years later), radiation is finished and have responded but now edema has caused more issues and am having a crainectomy next week. 

                                      About 6 months ago we thought that I was having another recurrance (ended up being a fatty tissue spot) my melanoma specialist at that point was saying that the recurrances were just getting too quick together.  When not needed his thoughts were buying me 6 months was ok (my situation) but 3 months (that time would have been the time frame) needed to go more aggressively.   The first time my surgery got me 2.5 years!    We have had many on the board that has just used surgery. 

                                      My local oncologist has been pushing BRAF towards me when possible.  My mel specialist is putting that drug off it doesn't last. Of course if you need to lower the tumor load it can work. 

                                      Wishing you the best,

                                      Linda

                                      aldakota22
                                      Participant

                                         Like you I had a stage !  melanoma from a small mole removed on 9/10/01 stupid me  never worried about it and then last jan.  had itcome back at the same site. Now a stage 4 In Feb. had lymph node removed..Was on dracarbozine after surgery, but that hardly ever works.By  July tumors started growing.Was lucky to be Braf + so have been on zelboraf since Sept. 12.Saw tumors shrink immediately.Will get new scans late Feb.  If I was you i would try the surgery while it can be effective and then try the new drugs.Doctors do not really realize the one thing we do not have is tyhe luxry to wait. & see.All the best God Bless

                                        aldakota22
                                        Participant

                                           Like you I had a stage !  melanoma from a small mole removed on 9/10/01 stupid me  never worried about it and then last jan.  had itcome back at the same site. Now a stage 4 In Feb. had lymph node removed..Was on dracarbozine after surgery, but that hardly ever works.By  July tumors started growing.Was lucky to be Braf + so have been on zelboraf since Sept. 12.Saw tumors shrink immediately.Will get new scans late Feb.  If I was you i would try the surgery while it can be effective and then try the new drugs.Doctors do not really realize the one thing we do not have is tyhe luxry to wait. & see.All the best God Bless

                                            bs010kbb
                                            Participant
                                              Thank you so much for your reply. I truly appreciate your feedback and wish you the best of luck with your upcoming scans.
                                              bs010kbb
                                              Participant
                                                Thank you so much for your reply. I truly appreciate your feedback and wish you the best of luck with your upcoming scans.
                                                bs010kbb
                                                Participant
                                                  Thank you so much for your reply. I truly appreciate your feedback and wish you the best of luck with your upcoming scans.
                                                aldakota22
                                                Participant

                                                   Like you I had a stage !  melanoma from a small mole removed on 9/10/01 stupid me  never worried about it and then last jan.  had itcome back at the same site. Now a stage 4 In Feb. had lymph node removed..Was on dracarbozine after surgery, but that hardly ever works.By  July tumors started growing.Was lucky to be Braf + so have been on zelboraf since Sept. 12.Saw tumors shrink immediately.Will get new scans late Feb.  If I was you i would try the surgery while it can be effective and then try the new drugs.Doctors do not really realize the one thing we do not have is tyhe luxry to wait. & see.All the best God Bless

                                                  washoegal
                                                  Participant

                                                    I am reading between the lines here and I feel you are leaning away from surgery.  My  question is why are you a "high risk" and why would the surgeon not be able to get all the tumor?  I'm a little disappointed no one offered you the option of surgery then Yervoy or BRAF, I am guessing that is because the tumor is in the same basin as the primary so you are considered still stage 3?

                                                    I would agree the surgery is the first battle ground.  After that, each of the other drugs have their pros and cons and I am sure you have followed many conversations here to understand that.  Yervoy's biggest con is that it is slow to work, BRAF is that it stops working at some point.  Unfortunately since you have been on interferon recently you are not qualified for most trials right now. 

                                                    Be true to yourself.  Follow what your heart tells you and don't looks back. 

                                                     

                                                    Good Luck,

                                                    Mary

                                                    Stage 3

                                                    washoegal
                                                    Participant

                                                      I am reading between the lines here and I feel you are leaning away from surgery.  My  question is why are you a "high risk" and why would the surgeon not be able to get all the tumor?  I'm a little disappointed no one offered you the option of surgery then Yervoy or BRAF, I am guessing that is because the tumor is in the same basin as the primary so you are considered still stage 3?

                                                      I would agree the surgery is the first battle ground.  After that, each of the other drugs have their pros and cons and I am sure you have followed many conversations here to understand that.  Yervoy's biggest con is that it is slow to work, BRAF is that it stops working at some point.  Unfortunately since you have been on interferon recently you are not qualified for most trials right now. 

                                                      Be true to yourself.  Follow what your heart tells you and don't looks back. 

                                                       

                                                      Good Luck,

                                                      Mary

                                                      Stage 3

                                                      washoegal
                                                      Participant

                                                        I am reading between the lines here and I feel you are leaning away from surgery.  My  question is why are you a "high risk" and why would the surgeon not be able to get all the tumor?  I'm a little disappointed no one offered you the option of surgery then Yervoy or BRAF, I am guessing that is because the tumor is in the same basin as the primary so you are considered still stage 3?

                                                        I would agree the surgery is the first battle ground.  After that, each of the other drugs have their pros and cons and I am sure you have followed many conversations here to understand that.  Yervoy's biggest con is that it is slow to work, BRAF is that it stops working at some point.  Unfortunately since you have been on interferon recently you are not qualified for most trials right now. 

                                                        Be true to yourself.  Follow what your heart tells you and don't looks back. 

                                                         

                                                        Good Luck,

                                                        Mary

                                                        Stage 3

                                                        Harry in Fair Oaks
                                                        Participant

                                                          For me, surgery (lung resection) brought almost 10 years NED.  So if you can be rendered NED with surgery, I would recommend it.  My MM came back last year – unfortunately it was in the bones so it had to be treated systemically.  I am doing very well so far in a BRAF/MEK combo trial.

                                                          Best wishes,

                                                          Harry

                                                          Harry in Fair Oaks
                                                          Participant

                                                            For me, surgery (lung resection) brought almost 10 years NED.  So if you can be rendered NED with surgery, I would recommend it.  My MM came back last year – unfortunately it was in the bones so it had to be treated systemically.  I am doing very well so far in a BRAF/MEK combo trial.

                                                            Best wishes,

                                                            Harry

                                                              bs010kbb
                                                              Participant
                                                                Harry, thank you so much for your reply. Remaining 10 years NED is wonderful though I truly wish you didn’t have a relapse to deal with at this time. I am glad to hear that you are responding well to the dual therapy and I certainly hope you continue to do so. I will be keeping you in prayer.
                                                                bs010kbb
                                                                Participant
                                                                  Harry, thank you so much for your reply. Remaining 10 years NED is wonderful though I truly wish you didn’t have a relapse to deal with at this time. I am glad to hear that you are responding well to the dual therapy and I certainly hope you continue to do so. I will be keeping you in prayer.
                                                                  bs010kbb
                                                                  Participant
                                                                    Harry, thank you so much for your reply. Remaining 10 years NED is wonderful though I truly wish you didn’t have a relapse to deal with at this time. I am glad to hear that you are responding well to the dual therapy and I certainly hope you continue to do so. I will be keeping you in prayer.
                                                                  Harry in Fair Oaks
                                                                  Participant

                                                                    For me, surgery (lung resection) brought almost 10 years NED.  So if you can be rendered NED with surgery, I would recommend it.  My MM came back last year – unfortunately it was in the bones so it had to be treated systemically.  I am doing very well so far in a BRAF/MEK combo trial.

                                                                    Best wishes,

                                                                    Harry

                                                                    Ali
                                                                    Participant

                                                                      I had a couple of metastasis show up 4 years after original mole, and three positive nodes, and interferon.  We chose just surgery (I would have taken anything systemically if they would have given it to me, but because I was still a stage III they wanted to watch and wait).  I remained NED for almost 10 months, and suddenly it is back in the bones, liver, breasts, etc.  From what I read, a local recurrence that takes you to a IIIc has an 89% chance of coming back.  So you could be one of the lucky ones to respond to surgery.  But chances are, it is in the system, and not going to be cured locally.  I hope you find something you feel good about.  I don't know if there is a right or wrong answer here, as everyone's disease behaves so differently.  Good Luck!

                                                                      Ali

                                                                        wolfpac
                                                                        Participant

                                                                          I wish you well whatever your decision is. I have come to believe that the decisions we make are made with good input from the "experts" tempered by our own judgment. I was diagnosed with melanoma on the left shoulder in July of 2007. I was Stage IIb at that time. I had clean margins and a clean SNB. I was NED until April 2011 when a small tumor developed along the existing scar line; surgery followed  and once again I had clean margins. All scans were negative for the little "buggers." At my eight month check up, I had a PET and Brain MRI with nothing evident; however, the doctor felt a very small nodule, once again along the scar line, and it tested positive for melanoma. The third surgery followed with no clean margins this time; microscopic melanoma cells evident in the tissue. I have moved to Stage III Our decision is to I have the fourth surgery on February 3rd with the hopes of getting clean margins; I will follow this with seven weeks of radiation. I also am investigating beginning Interferon, but the jury is still out.

                                                                          I am working very closely with my doctors, but I am researching all options and placing questions before them. I believe that we must take charge of the treatment of this disease with input from the "experts." But most importantly, this is my cancer not theirs and I am the one that needs to make the final decision. My prayers and thoughts will be with you and all of the folks posting on this site.

                                                                          Keep Focused, Pray Daily,

                                                                          Stay Safe,

                                                                                       Al in Sunny Florida

                                                                          wolfpac
                                                                          Participant

                                                                            I wish you well whatever your decision is. I have come to believe that the decisions we make are made with good input from the "experts" tempered by our own judgment. I was diagnosed with melanoma on the left shoulder in July of 2007. I was Stage IIb at that time. I had clean margins and a clean SNB. I was NED until April 2011 when a small tumor developed along the existing scar line; surgery followed  and once again I had clean margins. All scans were negative for the little "buggers." At my eight month check up, I had a PET and Brain MRI with nothing evident; however, the doctor felt a very small nodule, once again along the scar line, and it tested positive for melanoma. The third surgery followed with no clean margins this time; microscopic melanoma cells evident in the tissue. I have moved to Stage III Our decision is to I have the fourth surgery on February 3rd with the hopes of getting clean margins; I will follow this with seven weeks of radiation. I also am investigating beginning Interferon, but the jury is still out.

                                                                            I am working very closely with my doctors, but I am researching all options and placing questions before them. I believe that we must take charge of the treatment of this disease with input from the "experts." But most importantly, this is my cancer not theirs and I am the one that needs to make the final decision. My prayers and thoughts will be with you and all of the folks posting on this site.

                                                                            Keep Focused, Pray Daily,

                                                                            Stay Safe,

                                                                                         Al in Sunny Florida

                                                                            wolfpac
                                                                            Participant

                                                                              I wish you well whatever your decision is. I have come to believe that the decisions we make are made with good input from the "experts" tempered by our own judgment. I was diagnosed with melanoma on the left shoulder in July of 2007. I was Stage IIb at that time. I had clean margins and a clean SNB. I was NED until April 2011 when a small tumor developed along the existing scar line; surgery followed  and once again I had clean margins. All scans were negative for the little "buggers." At my eight month check up, I had a PET and Brain MRI with nothing evident; however, the doctor felt a very small nodule, once again along the scar line, and it tested positive for melanoma. The third surgery followed with no clean margins this time; microscopic melanoma cells evident in the tissue. I have moved to Stage III Our decision is to I have the fourth surgery on February 3rd with the hopes of getting clean margins; I will follow this with seven weeks of radiation. I also am investigating beginning Interferon, but the jury is still out.

                                                                              I am working very closely with my doctors, but I am researching all options and placing questions before them. I believe that we must take charge of the treatment of this disease with input from the "experts." But most importantly, this is my cancer not theirs and I am the one that needs to make the final decision. My prayers and thoughts will be with you and all of the folks posting on this site.

                                                                              Keep Focused, Pray Daily,

                                                                              Stay Safe,

                                                                                           Al in Sunny Florida

                                                                            Ali
                                                                            Participant

                                                                              I had a couple of metastasis show up 4 years after original mole, and three positive nodes, and interferon.  We chose just surgery (I would have taken anything systemically if they would have given it to me, but because I was still a stage III they wanted to watch and wait).  I remained NED for almost 10 months, and suddenly it is back in the bones, liver, breasts, etc.  From what I read, a local recurrence that takes you to a IIIc has an 89% chance of coming back.  So you could be one of the lucky ones to respond to surgery.  But chances are, it is in the system, and not going to be cured locally.  I hope you find something you feel good about.  I don't know if there is a right or wrong answer here, as everyone's disease behaves so differently.  Good Luck!

                                                                              Ali

                                                                              Ali
                                                                              Participant

                                                                                I had a couple of metastasis show up 4 years after original mole, and three positive nodes, and interferon.  We chose just surgery (I would have taken anything systemically if they would have given it to me, but because I was still a stage III they wanted to watch and wait).  I remained NED for almost 10 months, and suddenly it is back in the bones, liver, breasts, etc.  From what I read, a local recurrence that takes you to a IIIc has an 89% chance of coming back.  So you could be one of the lucky ones to respond to surgery.  But chances are, it is in the system, and not going to be cured locally.  I hope you find something you feel good about.  I don't know if there is a right or wrong answer here, as everyone's disease behaves so differently.  Good Luck!

                                                                                Ali

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