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Stage IV resected – Need help deciding what to do

Forums General Melanoma Community Stage IV resected – Need help deciding what to do

  • Post
    cldeters
    Participant

      I had a wide excision of a tumor on my right leg, a wide excision of a tumor on my left leg and all the lymph nodes in my right groin removed in December 2011. I met with Dr. Lao at U of M this past week and was told I don't qualify for the typical Stage IV treatment because there are no tumors to measure. He suggested I do surveillance which includes getting scans every 3 months. His second choice was the trial of IPI vs. Interferon.

      I had a wide excision of a tumor on my right leg, a wide excision of a tumor on my left leg and all the lymph nodes in my right groin removed in December 2011. I met with Dr. Lao at U of M this past week and was told I don't qualify for the typical Stage IV treatment because there are no tumors to measure. He suggested I do surveillance which includes getting scans every 3 months. His second choice was the trial of IPI vs. Interferon. With the low response rates of both of those drugs and the severe side effects, I am wondering if the "wait and see" option isn't the best. I would love to get other opinions from people who were in my situation. This is very scary and hard for me to decide.

    Viewing 17 reply threads
    • Replies
        lhaley
        Participant

          Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

          Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

          Linda

          lhaley
          Participant

            Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

            Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

            Linda

            lhaley
            Participant

              Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

              Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

              Linda

              lhaley
              Participant

                Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

                Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

                Linda

                lhaley
                Participant

                  Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

                  Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

                  Linda

                    cldeters
                    Participant

                      Thank you for your input, Linda. So sorry to hear about your brain met. Are you on a treatment now? 

                      cldeters
                      Participant

                        Thank you for your input, Linda. So sorry to hear about your brain met. Are you on a treatment now? 

                        lhaley
                        Participant

                          I had SRS radiation completed. The tumor is shrinking but right now have edema. Going on Wed for a discussion on the next step.  Otherwise the rest (thankfully) the PET was clear 10 days ago.  

                          Linda

                          lhaley
                          Participant

                            I had SRS radiation completed. The tumor is shrinking but right now have edema. Going on Wed for a discussion on the next step.  Otherwise the rest (thankfully) the PET was clear 10 days ago.  

                            Linda

                            Suzan AB
                            Participant
                              Hi Linda
                              I am so sorry to hear about your brain met. I hope that tumor died a terrible death. How are feelimg now…are you managing the edema…love hugs…suzan
                              Suzan AB
                              Participant
                                Hi Linda
                                I am so sorry to hear about your brain met. I hope that tumor died a terrible death. How are feelimg now…are you managing the edema…love hugs…suzan
                                Suzan AB
                                Participant
                                  Hi Linda
                                  I am so sorry to hear about your brain met. I hope that tumor died a terrible death. How are feelimg now…are you managing the edema…love hugs…suzan
                                  lhaley
                                  Participant

                                    I had SRS radiation completed. The tumor is shrinking but right now have edema. Going on Wed for a discussion on the next step.  Otherwise the rest (thankfully) the PET was clear 10 days ago.  

                                    Linda

                                    cldeters
                                    Participant

                                      Thank you for your input, Linda. So sorry to hear about your brain met. Are you on a treatment now? 

                                    lhaley
                                    Participant

                                      Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

                                      Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

                                      Linda

                                      Rescumom1
                                      Participant
                                        I know how you feel and just wanted to reach out to you and pass on what I’ve been told. I had a mole on my chest positive for melanoma and had it removed did nothing else and just did wait and see and get checked often.stayed cancer free for 5 years exactly, then I found a lump in my breast and it came back positive for melanoma. Had it removed and was told by one of the best hospitals for melanoma that there isn’t any data showing treatment would be helpful and to continue watching scans MRI blood work every three months then 6 months but after first 6 month check the cancer has spread to my lungs! So I’m now qualified for a pd1 antibody trial going on many places around the country. That was told to me yesterday! I’m signing up for the trial which is called CT-2012-01! I know how unsettling it can be when they say just watch closely. But I have to trust my doctor and believe in what she’s telling me! I’m grateful that this trial is available to me otherwise I’d have nothing! I would recommend H Lee Moffitt center in Tampa Fl if possible for you! Many have told me they are number one in country for melanoma treatment! Keep positive and educate yourself as much as possible! Trust your guy! I believe this is going to work for me and there’s just no other option for me! The mind is a powerful thing and I’m not giving up! I’m scared to death! But have lots of love and support and prayer! I wish you the best! Feel free to contact me anytime!! Take care!!
                                        Rescumom1
                                        Participant
                                          I know how you feel and just wanted to reach out to you and pass on what I’ve been told. I had a mole on my chest positive for melanoma and had it removed did nothing else and just did wait and see and get checked often.stayed cancer free for 5 years exactly, then I found a lump in my breast and it came back positive for melanoma. Had it removed and was told by one of the best hospitals for melanoma that there isn’t any data showing treatment would be helpful and to continue watching scans MRI blood work every three months then 6 months but after first 6 month check the cancer has spread to my lungs! So I’m now qualified for a pd1 antibody trial going on many places around the country. That was told to me yesterday! I’m signing up for the trial which is called CT-2012-01! I know how unsettling it can be when they say just watch closely. But I have to trust my doctor and believe in what she’s telling me! I’m grateful that this trial is available to me otherwise I’d have nothing! I would recommend H Lee Moffitt center in Tampa Fl if possible for you! Many have told me they are number one in country for melanoma treatment! Keep positive and educate yourself as much as possible! Trust your guy! I believe this is going to work for me and there’s just no other option for me! The mind is a powerful thing and I’m not giving up! I’m scared to death! But have lots of love and support and prayer! I wish you the best! Feel free to contact me anytime!! Take care!!
                                          Rescumom1
                                          Participant
                                            I know how you feel and just wanted to reach out to you and pass on what I’ve been told. I had a mole on my chest positive for melanoma and had it removed did nothing else and just did wait and see and get checked often.stayed cancer free for 5 years exactly, then I found a lump in my breast and it came back positive for melanoma. Had it removed and was told by one of the best hospitals for melanoma that there isn’t any data showing treatment would be helpful and to continue watching scans MRI blood work every three months then 6 months but after first 6 month check the cancer has spread to my lungs! So I’m now qualified for a pd1 antibody trial going on many places around the country. That was told to me yesterday! I’m signing up for the trial which is called CT-2012-01! I know how unsettling it can be when they say just watch closely. But I have to trust my doctor and believe in what she’s telling me! I’m grateful that this trial is available to me otherwise I’d have nothing! I would recommend H Lee Moffitt center in Tampa Fl if possible for you! Many have told me they are number one in country for melanoma treatment! Keep positive and educate yourself as much as possible! Trust your guy! I believe this is going to work for me and there’s just no other option for me! The mind is a powerful thing and I’m not giving up! I’m scared to death! But have lots of love and support and prayer! I wish you the best! Feel free to contact me anytime!! Take care!!
                                            TSchulz
                                            Participant

                                              Hi,

                                              A very hard call – nobody wants to sit and do nothing when such a challenge may pop up at any time.  One approach might be, to sit tight and watch this thing very closely.  In the meantime, work with your doctors to gather some important information that will help you decide what options will be available and best for you should it come back.  Checking for BRAF and getting your HLA typing done come to my mind.  Personally, I would look at other trial options before jumping into the one you listed. 

                                              Things seem to be happening pretty fast (for the melanoma world) and there are so many trials that are trying new things, comparing new and old things, combining things, etc.  In my mind the longer one can safely postpone treatment – the more good data about options you will have.  Unfortunately, our treatment options are not very clear at this time.

                                              I wish the very best and remember to lean on those close to you – they want to help.

                                              Best, Troy

                                              TSchulz
                                              Participant

                                                Hi,

                                                A very hard call – nobody wants to sit and do nothing when such a challenge may pop up at any time.  One approach might be, to sit tight and watch this thing very closely.  In the meantime, work with your doctors to gather some important information that will help you decide what options will be available and best for you should it come back.  Checking for BRAF and getting your HLA typing done come to my mind.  Personally, I would look at other trial options before jumping into the one you listed. 

                                                Things seem to be happening pretty fast (for the melanoma world) and there are so many trials that are trying new things, comparing new and old things, combining things, etc.  In my mind the longer one can safely postpone treatment – the more good data about options you will have.  Unfortunately, our treatment options are not very clear at this time.

                                                I wish the very best and remember to lean on those close to you – they want to help.

                                                Best, Troy

                                                TSchulz
                                                Participant

                                                  Hi,

                                                  A very hard call – nobody wants to sit and do nothing when such a challenge may pop up at any time.  One approach might be, to sit tight and watch this thing very closely.  In the meantime, work with your doctors to gather some important information that will help you decide what options will be available and best for you should it come back.  Checking for BRAF and getting your HLA typing done come to my mind.  Personally, I would look at other trial options before jumping into the one you listed. 

                                                  Things seem to be happening pretty fast (for the melanoma world) and there are so many trials that are trying new things, comparing new and old things, combining things, etc.  In my mind the longer one can safely postpone treatment – the more good data about options you will have.  Unfortunately, our treatment options are not very clear at this time.

                                                  I wish the very best and remember to lean on those close to you – they want to help.

                                                  Best, Troy

                                                  odonoghue80
                                                  Participant
                                                    Linda, just saw your posting and curious as to what you decided? I am in a very similar situation and unsure what to do. Stage 4 resected but have had this twice now and again doc is recommending observation. Unfortunately I had interferon before (recurred in 6 months while on it…in lymph nodes) so I don’t qualify for clin trial. But ipilimumab is approved and I have another doctor recommending to take it. Having trouble weighing all pros and cons. So just wondering how this played out for you?
                                                    Thx, Shane
                                                    odonoghue80
                                                    Participant
                                                      Linda, just saw your posting and curious as to what you decided? I am in a very similar situation and unsure what to do. Stage 4 resected but have had this twice now and again doc is recommending observation. Unfortunately I had interferon before (recurred in 6 months while on it…in lymph nodes) so I don’t qualify for clin trial. But ipilimumab is approved and I have another doctor recommending to take it. Having trouble weighing all pros and cons. So just wondering how this played out for you?
                                                      Thx, Shane
                                                      odonoghue80
                                                      Participant
                                                        Linda, just saw your posting and curious as to what you decided? I am in a very similar situation and unsure what to do. Stage 4 resected but have had this twice now and again doc is recommending observation. Unfortunately I had interferon before (recurred in 6 months while on it…in lymph nodes) so I don’t qualify for clin trial. But ipilimumab is approved and I have another doctor recommending to take it. Having trouble weighing all pros and cons. So just wondering how this played out for you?
                                                        Thx, Shane
                                                        odonoghue80
                                                        Participant
                                                          Sorry that last reply was for cldeters…
                                                          odonoghue80
                                                          Participant
                                                            Sorry that last reply was for cldeters…
                                                            odonoghue80
                                                            Participant
                                                              Sorry that last reply was for cldeters…
                                                          Viewing 17 reply threads
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