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Am I Crazy? Stage 4 Treatment Options

Forums General Melanoma Community Am I Crazy? Stage 4 Treatment Options

  • Post
    kpcollins31
    Participant

      So I had my surgical follow-up earlier in the week… healing really well, feel great. We discussed the biopsy results, which were confirmed as melanoma (metastasis to the small bowel). Margins were tested and clear. In addition, my surgeon removed 20 lymph nodes in the region… one of which tested positive for melanoma. Bottom line is I am now stage 4 NED.

      We discussed treatment options… when you are NED, they are fairly limited. Interferon, clinical trials, or watch and wait. I chose watch and wait with the 3 month scan frequency and I feel very comfortable with it. Am I crazy? I fully expect to have a recurrence at some point… not sure if it will be 3 months or 3 years (or 30 years for that matter), but I hate to start firing my treatment bullets too soon. I do not believe interferon is effective. Some current clinical trials seem to be showing a lot of promise, but I do not want to take something now that might rule out a better treatment down the road. My thought process now is to get my body strong again following the surgery to prepare for the next battle. Any thoughts on this approach?

      Kevin

       

    Viewing 20 reply threads
    • Replies
        Jahendry12
        Participant

          Hi Kevin – personally, that is what we are doing right now. My husband is stage 4 NED and are doing 3 month scans through 2015. MRI's every 6 months. I guess my thought process is I don't want to treat something if I don't know what I'm treating. Like you said, I'd rather save it until we absolutely need it. My husband is healthy & strong. I hope he stays that way. 

          Praying you stay NED so you will never ever need any treatments. 

          Jahendry12
          Participant

            Hi Kevin – personally, that is what we are doing right now. My husband is stage 4 NED and are doing 3 month scans through 2015. MRI's every 6 months. I guess my thought process is I don't want to treat something if I don't know what I'm treating. Like you said, I'd rather save it until we absolutely need it. My husband is healthy & strong. I hope he stays that way. 

            Praying you stay NED so you will never ever need any treatments. 

            Jahendry12
            Participant

              Hi Kevin – personally, that is what we are doing right now. My husband is stage 4 NED and are doing 3 month scans through 2015. MRI's every 6 months. I guess my thought process is I don't want to treat something if I don't know what I'm treating. Like you said, I'd rather save it until we absolutely need it. My husband is healthy & strong. I hope he stays that way. 

              Praying you stay NED so you will never ever need any treatments. 

              JerryfromFauq
              Participant

                Kevin, I'm not NED, but am stable.  There is one person who has really pushed me to stop what i'm doing to try the treatment they are pushing.  At the rate the treatments are advancing, I'll just continue where I'm at while somewhat "waiting" to.see what is next.  Aat least whaat I'm on is an easier wait the interferon!  You siund reasonable to me.

                JerryfromFauq
                Participant

                  Kevin, I'm not NED, but am stable.  There is one person who has really pushed me to stop what i'm doing to try the treatment they are pushing.  At the rate the treatments are advancing, I'll just continue where I'm at while somewhat "waiting" to.see what is next.  Aat least whaat I'm on is an easier wait the interferon!  You siund reasonable to me.

                  JerryfromFauq
                  Participant

                    Kevin, I'm not NED, but am stable.  There is one person who has really pushed me to stop what i'm doing to try the treatment they are pushing.  At the rate the treatments are advancing, I'll just continue where I'm at while somewhat "waiting" to.see what is next.  Aat least whaat I'm on is an easier wait the interferon!  You siund reasonable to me.

                    Swanee
                    Participant

                      Hi Kevin,

                      No, you're not crazy, it's a choice we all have to make and it's not an easy one!

                      From the get go, I was diagnosed Stage IV, with no primary! 

                      Recently, after spending the past 2 years discussing other options, clinical trials and mostly considering the TIL treatment with my oncologist, at one point considering going to NCI but feeling I had time and knowing the TIL treatment would be coming fairly soon to SCCA,  I decided to wait.  When the treatment was finally available here, I changed my mind when my scans reflected very limited growth in my tumors.  Instead, I decided to do a CLND of the right axilla, which now makes me NED!! This was a very difficult but strong decision that was completely made by me and went against the medical direction of my oncologist.

                      Early on in my diagnosis a friend suggested the Budwig Diet, which follows a diet rich in flax oil.  That is what I follow and I attribute to my slow progression of this disease.  I feel this diet has made my body strong and although I don't know if it can keep me cancer free, I do feel it has slowed the progression and has stepped up my immune system, which seems to be doing a good job now of keeping the melanoma in check.  I feel I've created an inhospitable enviornment for melanoma cancer cells to grow in : ))    

                      It's still a precarious place to be but my thought is, if I can hold out a while longer until the next reoccurence then there will be that much more knowledge out there and better treatments for me that hopefully will target my specific melanoma signature and will be less toxic to my body and hopefully a cure!  

                      Just to be sure, I am not a vegetarian or anti-McDonalds kind of person!  For the most part,  I just follow a good well balanced diet and supplement with the Budwig flax protoccol.

                      Wishing you great success Kevin in your melanoma journey!

                      Swanee

                        Swanee
                        Participant

                          P.S.   I would like to rephrase and say "I TRY to follow a good well balanced diet"  I still like my occasional potato chips and McDonald fries!  It's been a small change but I think it's doing great things!

                          Swanee
                          Participant

                            P.S.   I would like to rephrase and say "I TRY to follow a good well balanced diet"  I still like my occasional potato chips and McDonald fries!  It's been a small change but I think it's doing great things!

                            Swanee
                            Participant

                              P.S.   I would like to rephrase and say "I TRY to follow a good well balanced diet"  I still like my occasional potato chips and McDonald fries!  It's been a small change but I think it's doing great things!

                            Swanee
                            Participant

                              Hi Kevin,

                              No, you're not crazy, it's a choice we all have to make and it's not an easy one!

                              From the get go, I was diagnosed Stage IV, with no primary! 

                              Recently, after spending the past 2 years discussing other options, clinical trials and mostly considering the TIL treatment with my oncologist, at one point considering going to NCI but feeling I had time and knowing the TIL treatment would be coming fairly soon to SCCA,  I decided to wait.  When the treatment was finally available here, I changed my mind when my scans reflected very limited growth in my tumors.  Instead, I decided to do a CLND of the right axilla, which now makes me NED!! This was a very difficult but strong decision that was completely made by me and went against the medical direction of my oncologist.

                              Early on in my diagnosis a friend suggested the Budwig Diet, which follows a diet rich in flax oil.  That is what I follow and I attribute to my slow progression of this disease.  I feel this diet has made my body strong and although I don't know if it can keep me cancer free, I do feel it has slowed the progression and has stepped up my immune system, which seems to be doing a good job now of keeping the melanoma in check.  I feel I've created an inhospitable enviornment for melanoma cancer cells to grow in : ))    

                              It's still a precarious place to be but my thought is, if I can hold out a while longer until the next reoccurence then there will be that much more knowledge out there and better treatments for me that hopefully will target my specific melanoma signature and will be less toxic to my body and hopefully a cure!  

                              Just to be sure, I am not a vegetarian or anti-McDonalds kind of person!  For the most part,  I just follow a good well balanced diet and supplement with the Budwig flax protoccol.

                              Wishing you great success Kevin in your melanoma journey!

                              Swanee

                              Swanee
                              Participant

                                Hi Kevin,

                                No, you're not crazy, it's a choice we all have to make and it's not an easy one!

                                From the get go, I was diagnosed Stage IV, with no primary! 

                                Recently, after spending the past 2 years discussing other options, clinical trials and mostly considering the TIL treatment with my oncologist, at one point considering going to NCI but feeling I had time and knowing the TIL treatment would be coming fairly soon to SCCA,  I decided to wait.  When the treatment was finally available here, I changed my mind when my scans reflected very limited growth in my tumors.  Instead, I decided to do a CLND of the right axilla, which now makes me NED!! This was a very difficult but strong decision that was completely made by me and went against the medical direction of my oncologist.

                                Early on in my diagnosis a friend suggested the Budwig Diet, which follows a diet rich in flax oil.  That is what I follow and I attribute to my slow progression of this disease.  I feel this diet has made my body strong and although I don't know if it can keep me cancer free, I do feel it has slowed the progression and has stepped up my immune system, which seems to be doing a good job now of keeping the melanoma in check.  I feel I've created an inhospitable enviornment for melanoma cancer cells to grow in : ))    

                                It's still a precarious place to be but my thought is, if I can hold out a while longer until the next reoccurence then there will be that much more knowledge out there and better treatments for me that hopefully will target my specific melanoma signature and will be less toxic to my body and hopefully a cure!  

                                Just to be sure, I am not a vegetarian or anti-McDonalds kind of person!  For the most part,  I just follow a good well balanced diet and supplement with the Budwig flax protoccol.

                                Wishing you great success Kevin in your melanoma journey!

                                Swanee

                                paul Lyons
                                Participant

                                  Hi Kevin,

                                  Sounds sane to me!

                                  I've been in this place (Stage 4 NED), and made the choice to watch and wait, try to stay healthy, while being proactive about checking things out. I don't see compelling evidence for a prophylactic use of systemic therapies or vaccines.

                                  Paul

                                  paul Lyons
                                  Participant

                                    Hi Kevin,

                                    Sounds sane to me!

                                    I've been in this place (Stage 4 NED), and made the choice to watch and wait, try to stay healthy, while being proactive about checking things out. I don't see compelling evidence for a prophylactic use of systemic therapies or vaccines.

                                    Paul

                                    paul Lyons
                                    Participant

                                      Hi Kevin,

                                      Sounds sane to me!

                                      I've been in this place (Stage 4 NED), and made the choice to watch and wait, try to stay healthy, while being proactive about checking things out. I don't see compelling evidence for a prophylactic use of systemic therapies or vaccines.

                                      Paul

                                      jim Breitfeller
                                      Participant

                                        Kevin, interferon may postpone the onset of melanoma. Check with your oncologist to see if there are any prerequisite to get into the trials that you may want. Sometimes you have to fail an FDA approved therapy before you can get into the clinical trial.

                                         

                                        think two to three steps ahead.

                                         

                                        jimmy b

                                         

                                        jim Breitfeller
                                        Participant

                                          Kevin, interferon may postpone the onset of melanoma. Check with your oncologist to see if there are any prerequisite to get into the trials that you may want. Sometimes you have to fail an FDA approved therapy before you can get into the clinical trial.

                                           

                                          think two to three steps ahead.

                                           

                                          jimmy b

                                           

                                          jim Breitfeller
                                          Participant

                                            Kevin, interferon may postpone the onset of melanoma. Check with your oncologist to see if there are any prerequisite to get into the trials that you may want. Sometimes you have to fail an FDA approved therapy before you can get into the clinical trial.

                                             

                                            think two to three steps ahead.

                                             

                                            jimmy b

                                             

                                            Charlie S
                                            Participant

                                              This is what I have learned…………..take it as you will.

                                              I wad DX'D in 1987 Stage III unknown primary.  Following surgeries and some playing around with lax cells, and diet it was nine years before melanoma came back in my body and made me Stage IV.

                                              Back and forth I have went since then with disease and NED ( for me Not Expecting Death) for now 27years. and seven recurrences.

                                              I learned my body, my poop, my pee, my sputum, my mind, my speech, my gait, my breathing, my ejaculate,my vision, my cordination, my heartbeat, my digestion and most of all……how to tell if something was amiss with my body.

                                              Each time there was a recurrence I knew it before any scan or blood test.

                                              Through all of this, I have  learned that for some, Melanoma can truly become a disease of management.

                                              Yes, many will die, but not all.

                                              Cure has never been an operative word or term for me, but management always seem to ring in my mind, and fortunately for me, that has rang true.

                                              You MUST realize that there can indeed be life beyond melanoma at its' worst; all the while realizing there may not be………………….but find a balance.

                                              Keep in mind what the alternative to death is which is living.

                                              Do not let melanoma take that away from you……..ever.

                                               

                                              Charlie S

                                               

                                               

                                              Charlie S
                                              Participant

                                                This is what I have learned…………..take it as you will.

                                                I wad DX'D in 1987 Stage III unknown primary.  Following surgeries and some playing around with lax cells, and diet it was nine years before melanoma came back in my body and made me Stage IV.

                                                Back and forth I have went since then with disease and NED ( for me Not Expecting Death) for now 27years. and seven recurrences.

                                                I learned my body, my poop, my pee, my sputum, my mind, my speech, my gait, my breathing, my ejaculate,my vision, my cordination, my heartbeat, my digestion and most of all……how to tell if something was amiss with my body.

                                                Each time there was a recurrence I knew it before any scan or blood test.

                                                Through all of this, I have  learned that for some, Melanoma can truly become a disease of management.

                                                Yes, many will die, but not all.

                                                Cure has never been an operative word or term for me, but management always seem to ring in my mind, and fortunately for me, that has rang true.

                                                You MUST realize that there can indeed be life beyond melanoma at its' worst; all the while realizing there may not be………………….but find a balance.

                                                Keep in mind what the alternative to death is which is living.

                                                Do not let melanoma take that away from you……..ever.

                                                 

                                                Charlie S

                                                 

                                                 

                                                Charlie S
                                                Participant

                                                  This is what I have learned…………..take it as you will.

                                                  I wad DX'D in 1987 Stage III unknown primary.  Following surgeries and some playing around with lax cells, and diet it was nine years before melanoma came back in my body and made me Stage IV.

                                                  Back and forth I have went since then with disease and NED ( for me Not Expecting Death) for now 27years. and seven recurrences.

                                                  I learned my body, my poop, my pee, my sputum, my mind, my speech, my gait, my breathing, my ejaculate,my vision, my cordination, my heartbeat, my digestion and most of all……how to tell if something was amiss with my body.

                                                  Each time there was a recurrence I knew it before any scan or blood test.

                                                  Through all of this, I have  learned that for some, Melanoma can truly become a disease of management.

                                                  Yes, many will die, but not all.

                                                  Cure has never been an operative word or term for me, but management always seem to ring in my mind, and fortunately for me, that has rang true.

                                                  You MUST realize that there can indeed be life beyond melanoma at its' worst; all the while realizing there may not be………………….but find a balance.

                                                  Keep in mind what the alternative to death is which is living.

                                                  Do not let melanoma take that away from you……..ever.

                                                   

                                                  Charlie S

                                                   

                                                   

                                                  kpcollins31
                                                  Participant

                                                    Appreciate all the feedback on this. I know that Jim noted that interferon might be an option, but I am simply not convinced that the benefit outweighs the personal cost in terms of side effects. For now, I plan to stay the course on watch and wait. As Charlie noted, I know my body and I expect to know when something seems wrong.

                                                    Kevin

                                                     

                                                    kpcollins31
                                                    Participant

                                                      Appreciate all the feedback on this. I know that Jim noted that interferon might be an option, but I am simply not convinced that the benefit outweighs the personal cost in terms of side effects. For now, I plan to stay the course on watch and wait. As Charlie noted, I know my body and I expect to know when something seems wrong.

                                                      Kevin

                                                       

                                                      kpcollins31
                                                      Participant

                                                        Appreciate all the feedback on this. I know that Jim noted that interferon might be an option, but I am simply not convinced that the benefit outweighs the personal cost in terms of side effects. For now, I plan to stay the course on watch and wait. As Charlie noted, I know my body and I expect to know when something seems wrong.

                                                        Kevin

                                                         

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