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Recently diagnosed and looking for guidance, not to mention prayers, support, etc.

Forums General Melanoma Community Recently diagnosed and looking for guidance, not to mention prayers, support, etc.

  • Post
    bs010kbb
    Participant

      Recently diagnosed last month when lump in left groin surfaced. Opted for full groin lymph dissection. PET/CT did not show evidence of disease has spread though area in muscle of left thigh showed concern. Area of left muscle was removed during dissection and surgeon is unable to tell me if area was a prior node or disease spread so on the side of caution this moves me from Stage III to Stage IV in their opinion. Treatment has not been determined as yet – local area is not very aggressive with this type of cancer.

      Recently diagnosed last month when lump in left groin surfaced. Opted for full groin lymph dissection. PET/CT did not show evidence of disease has spread though area in muscle of left thigh showed concern. Area of left muscle was removed during dissection and surgeon is unable to tell me if area was a prior node or disease spread so on the side of caution this moves me from Stage III to Stage IV in their opinion. Treatment has not been determined as yet – local area is not very aggressive with this type of cancer. I have appointments at Johns Hopkins and Sloan Kettering in the next few weeks. Looking for any suggesstions and/or similar situations and treatments you may have considered. Need to 'flip the switch' to positive thoughts as I am still consumed with fear, the unknown and not being here from my children who are so very young. Thank you for reading and thank you in advance to those that respond – God Bless.

    Viewing 9 reply threads
    • Replies
        FormerCaregiver
        Participant

          Welcome to our forum. There are many great people here who will assist you with any
          questions that you may have. They will also pray for you if you request this.

          I strongly encourage you to fill in some details on your profile page, as this will help
          us to help you better.

          Best wishes

          Frank from Australia

            bs010kbb
            Participant

              Thank you, Frank, for your reply. I am new to the site and just learning to navigate. I wasn't aware of the profile page – your reply had me exploring further and I have updated my information, thank you!

              lhaley
              Participant

                Too much of a coincidence!! I just read your profile now that it's up. I'm from Smyrna De!!  I taught there for 28 years. We moved from there about 6 years ago. My husband worked at Johnson Control.  We have 2 other people on this site from Delaware. One is Lear who also goes to Christiana (she posts as Vivian) and the other is TraceyLee. 

                You are close to Univ of Penn. Check out Dr Lynn Shutler (might be misspelling her name).

                Linda

                lhaley
                Participant

                  Too much of a coincidence!! I just read your profile now that it's up. I'm from Smyrna De!!  I taught there for 28 years. We moved from there about 6 years ago. My husband worked at Johnson Control.  We have 2 other people on this site from Delaware. One is Lear who also goes to Christiana (she posts as Vivian) and the other is TraceyLee. 

                  You are close to Univ of Penn. Check out Dr Lynn Shutler (might be misspelling her name).

                  Linda

                  Joan C
                  Participant

                    The correct spelling is Dr. Lynn Schuchter from UPenn – and I agree, she is tops in the field!  Good luck with your search for a treatment center

                    Joan C
                    Participant

                      The correct spelling is Dr. Lynn Schuchter from UPenn – and I agree, she is tops in the field!  Good luck with your search for a treatment center

                      Dynasysman
                      Participant

                        Name is spelled Schuchter, and she is my oncologist.  Really. really  smart, and really knows melanoma.  Pushes clinical trials very hard, but not sure that's a bad thing…especially since she has access to all kinds of trials, etc.

                        Dynasysman
                        Participant

                          Name is spelled Schuchter, and she is my oncologist.  Really. really  smart, and really knows melanoma.  Pushes clinical trials very hard, but not sure that's a bad thing…especially since she has access to all kinds of trials, etc.

                          Dynasysman
                          Participant

                            Name is spelled Schuchter, and she is my oncologist.  Really. really  smart, and really knows melanoma.  Pushes clinical trials very hard, but not sure that's a bad thing…especially since she has access to all kinds of trials, etc.

                            Dynasysman
                            Participant

                              Name is spelled Schuchter, and she is my oncologist.  Really. really  smart, and really knows melanoma.  Pushes clinical trials very hard, but not sure that's a bad thing…especially since she has access to all kinds of trials, etc.

                              bs010kbb
                              Participant

                                Thank you, Frank, for your reply. I am new to the site and just learning to navigate. I wasn't aware of the profile page – your reply had me exploring further and I have updated my information, thank you!

                              FormerCaregiver
                              Participant

                                Welcome to our forum. There are many great people here who will assist you with any
                                questions that you may have. They will also pray for you if you request this.

                                I strongly encourage you to fill in some details on your profile page, as this will help
                                us to help you better.

                                Best wishes

                                Frank from Australia

                                lhaley
                                Participant

                                  I'm sorry you've had to join us.  There are many of us stage IV long term survivors, many of them just don't come to the board that often and being summer they might be off vacationing.  I hit my 5 year mark almost 2 weeks ago!  Had dinner the other night with a 3 year survivor.  Last year I met rick from NC who is about a 14 year survivor who has been cancer free the entire time since IL2.

                                  You will find yourself in a unique position if I understand you correctly. Stage IV and NED. I've been in and out of that position. You won't have many options because there is no disease to use as a marker so little options.   I do know of 2 trials for stage IV NED. 1 is if you have the 0201+ protein marker. Ask your Dr to do the HLA blood test. That trial is being offered at Moffitt in Orlando. Maybe other places also but not many.  It's a vacine along with another drug (slipped my mind but is similar to but different than ipi). The other trial is opening up right now around the country so you might be able to find it closer to home either now or in Sept.  It's Interfuron vs Yervoy (ipi).  The interfuron is for the entire year and the Yervoy is a different dosage then what has been FDA approved. It's 10 mg (instead of 3) every 3 weeks for 12 weeks. Then One infusion every 3 months for the rest of the year. 

                                  My oncologist and I discussed the later trial (not eligible for the 1st) but I would have to travel 2 hours and can't do that with the interfuron being every day for the first month. If your closer it might be something for you to consider. I also wasn't thrilled with the thought of doing interfuron for a year after I've avoided it for the past 5 years, but that's a personal decision..

                                  Let us know how the appointments go! 

                                  Linda

                                  Stage IV since 06  NED for 6 weeks, currently doing radiation

                                    bs010kbb
                                    Participant

                                      Linda, thank you so much for your reply and the information you have provided. I was aware of the trial involving Interfuron and Yervoy as this will be opening to my area shortly. My oncologist is encouraging me to explore options around the BRAF gene as I have been confirmed positive. He would like me involved in a clinical trial around this gene but we are also finding that it will be difficult with NED at this time as many of the trials what something to "measure", as you already noted.

                                      I also found that Bethesda, MD noted a clinical trial that is currently open offering the vacine as well. I have reached out for more information around this trial in hopes to discuss during my next appointment.

                                      Thank you for your reply, Linda – it was very much appreciated.

                                      bs010kbb
                                      Participant

                                        Linda, thank you so much for your reply and the information you have provided. I was aware of the trial involving Interfuron and Yervoy as this will be opening to my area shortly. My oncologist is encouraging me to explore options around the BRAF gene as I have been confirmed positive. He would like me involved in a clinical trial around this gene but we are also finding that it will be difficult with NED at this time as many of the trials what something to "measure", as you already noted.

                                        I also found that Bethesda, MD noted a clinical trial that is currently open offering the vacine as well. I have reached out for more information around this trial in hopes to discuss during my next appointment.

                                        Thank you for your reply, Linda – it was very much appreciated.

                                        JerryfromFauq
                                        Participant

                                          Linda, Rick had his iL-2 in 1991.  (Not sure what month.)  So this year makes it 20 ith iL-2 being his only stage IV treatment.  Isn't the longivity of that 5% complete responce rate great?

                                          JerryfromFauq
                                          Participant

                                            Linda, Rick had his iL-2 in 1991.  (Not sure what month.)  So this year makes it 20 ith iL-2 being his only stage IV treatment.  Isn't the longivity of that 5% complete responce rate great?

                                            lhaley
                                            Participant

                                              I thought it was longer than 14 years but was afraid to say. You know, some of us have to be in that small percentage!  My Dr broke it down for me that there are different percentages depending on where the metastices are.  So some areas actually have  a much better response. 

                                              Linda

                                              lhaley
                                              Participant

                                                I thought it was longer than 14 years but was afraid to say. You know, some of us have to be in that small percentage!  My Dr broke it down for me that there are different percentages depending on where the metastices are.  So some areas actually have  a much better response. 

                                                Linda

                                              lhaley
                                              Participant

                                                I'm sorry you've had to join us.  There are many of us stage IV long term survivors, many of them just don't come to the board that often and being summer they might be off vacationing.  I hit my 5 year mark almost 2 weeks ago!  Had dinner the other night with a 3 year survivor.  Last year I met rick from NC who is about a 14 year survivor who has been cancer free the entire time since IL2.

                                                You will find yourself in a unique position if I understand you correctly. Stage IV and NED. I've been in and out of that position. You won't have many options because there is no disease to use as a marker so little options.   I do know of 2 trials for stage IV NED. 1 is if you have the 0201+ protein marker. Ask your Dr to do the HLA blood test. That trial is being offered at Moffitt in Orlando. Maybe other places also but not many.  It's a vacine along with another drug (slipped my mind but is similar to but different than ipi). The other trial is opening up right now around the country so you might be able to find it closer to home either now or in Sept.  It's Interfuron vs Yervoy (ipi).  The interfuron is for the entire year and the Yervoy is a different dosage then what has been FDA approved. It's 10 mg (instead of 3) every 3 weeks for 12 weeks. Then One infusion every 3 months for the rest of the year. 

                                                My oncologist and I discussed the later trial (not eligible for the 1st) but I would have to travel 2 hours and can't do that with the interfuron being every day for the first month. If your closer it might be something for you to consider. I also wasn't thrilled with the thought of doing interfuron for a year after I've avoided it for the past 5 years, but that's a personal decision..

                                                Let us know how the appointments go! 

                                                Linda

                                                Stage IV since 06  NED for 6 weeks, currently doing radiation

                                                Carol Taylor
                                                Participant

                                                  Hi B,

                                                  I'm still stage 3b, so while I can't offer advice on stage 4 except listen to Linda and others, I want you to know I'll be holding you and your family in prayer. God bless.

                                                  Lord, in Your healing mercy, please look on Your daughter and her children with favor and guide her on this journey. Open doors that will help and close all that get in Your way. Thank You God. Amen and Amen.

                                                  Grace and peace,

                                                  Carol

                                                    bs010kbb
                                                    Participant

                                                      Thank you, Carol, for your prayers as it is so very much appreciated and is truly a blessed way to start my day, thank you. Thinking of you as well and holding you in prayer.

                                                      Erinmay22
                                                      Participant

                                                        Sorry to hear about your recent diagnosis… and to have to 'meet' you this way.  I am currently seen at sloan (although haven't done any treatments even though confirmed stage IV in March.  June scans showed NED!).  but you're on the right track with seeing a Melanoma specialist if you don't feel that your local doctor is up to speed enough on new treatments and trials out there.

                                                        Thoughts and prayers with you!

                                                        Erin

                                                        Erinmay22
                                                        Participant

                                                          Sorry to hear about your recent diagnosis… and to have to 'meet' you this way.  I am currently seen at sloan (although haven't done any treatments even though confirmed stage IV in March.  June scans showed NED!).  but you're on the right track with seeing a Melanoma specialist if you don't feel that your local doctor is up to speed enough on new treatments and trials out there.

                                                          Thoughts and prayers with you!

                                                          Erin

                                                          bs010kbb
                                                          Participant

                                                            Thank you, Carol, for your prayers as it is so very much appreciated and is truly a blessed way to start my day, thank you. Thinking of you as well and holding you in prayer.

                                                          Carol Taylor
                                                          Participant

                                                            Hi B,

                                                            I'm still stage 3b, so while I can't offer advice on stage 4 except listen to Linda and others, I want you to know I'll be holding you and your family in prayer. God bless.

                                                            Lord, in Your healing mercy, please look on Your daughter and her children with favor and guide her on this journey. Open doors that will help and close all that get in Your way. Thank You God. Amen and Amen.

                                                            Grace and peace,

                                                            Carol

                                                            CLPrice31
                                                            Participant

                                                              So sorry you had to join us…I am also a nearby melanoma warrior–Chincoteague, VA. I was living in Roanoke, VA when I was diagnosed as stage III in January of this year. Because I was only offered Interferon, I quickly decided I needed to be seen by someone who has more experience with melanoma. I have had a GREAT experience at Sloan Kettering. I cannot rave about them enough. I see Dr. Mark Dickson at Sloan. Erin and I can both tell you numerous stories about how encouraging Dr. Dickson continues to be. He's a doctor who insists on doing your worrying FOR you. As he says, that's why he gets paid. 😉

                                                              Best wishes to you. Not sure if you have a Facebook page or not, but you will find a lot of support there.

                                                              CLPrice31
                                                              Participant

                                                                So sorry you had to join us…I am also a nearby melanoma warrior–Chincoteague, VA. I was living in Roanoke, VA when I was diagnosed as stage III in January of this year. Because I was only offered Interferon, I quickly decided I needed to be seen by someone who has more experience with melanoma. I have had a GREAT experience at Sloan Kettering. I cannot rave about them enough. I see Dr. Mark Dickson at Sloan. Erin and I can both tell you numerous stories about how encouraging Dr. Dickson continues to be. He's a doctor who insists on doing your worrying FOR you. As he says, that's why he gets paid. 😉

                                                                Best wishes to you. Not sure if you have a Facebook page or not, but you will find a lot of support there.

                                                                s M
                                                                Participant

                                                                  Hello — I am a member of a non-profit group in Delaware who raises funds for melanoma research.  We are Miles for Melanoma of Delaware, made up of both survivors and caregivers.  Website : http://www.miles4melanomade.org.  We are here for support, to increase awareness of melanoma and skin cancer, and we give all proceeds to MRF.  Our signature event is a 5K walk/run at the Riverfront in Wilmington on Sept. 18. Teams are forming now. Last year we wrote a $65,000 check to MRF. Our director lives in Middletown. Please reach out if you need us.

                                                                  s M
                                                                  Participant

                                                                    Hello — I am a member of a non-profit group in Delaware who raises funds for melanoma research.  We are Miles for Melanoma of Delaware, made up of both survivors and caregivers.  Website : http://www.miles4melanomade.org.  We are here for support, to increase awareness of melanoma and skin cancer, and we give all proceeds to MRF.  Our signature event is a 5K walk/run at the Riverfront in Wilmington on Sept. 18. Teams are forming now. Last year we wrote a $65,000 check to MRF. Our director lives in Middletown. Please reach out if you need us.

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