MRF-Logo2019-Horizontal-RGB
Stage 4 Survivor
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Stage 4 Survivor

› Forums › General Melanoma Community › Stage 4 Survivor

  • Post
    • July 19, 2012 at 8:25 pm
    Ronskidtexx
    Participant
      I had surgery March 5th to remove melanoma tumors from neck (dissection) and from soft mass near rib cage. I had 5 radiation treatments to neck area. As of mid July, with recent scans, I am NED. No further treatments are scheduled. Is this normal? Just scans every 3 months? My head and neck surgeon said “see you in 6 months.” I am going to MD Anderson here in Houston, so I feel I am in good hands. My oncologist feels Interferon would not benefit me and why put me through the effects. I do feel blessed with the NED status but the fear does not go away.

      I had surgery March 5th to remove melanoma tumors from neck (dissection) and from soft mass near rib cage. I had 5 radiation treatments to neck area. As of mid July, with recent scans, I am NED. No further treatments are scheduled. Is this normal? Just scans every 3 months? My head and neck surgeon said “see you in 6 months.” I am going to MD Anderson here in Houston, so I feel I am in good hands. My oncologist feels Interferon would not benefit me and why put me through the effects. I do feel blessed with the NED status but the fear does not go away. With the neck dissection, 57 lymph nodes were taken out-all clear of melanoma. I have an unknown primary as well. I am walking around like nothing ever happened. The fear factor gets to me, though.

      Just wanted to get a little feedback on lack of follow up treatments not being administered or if this is common.

      My story of my journey can be found at Aim at Melanoma, Survivors stories, Stage IV. I will friend you in Facebook as well.

      God bless,

      Ron Whelchel

    Viewing 14 reply threads
    • Replies
        • July 19, 2012 at 9:47 pm
        KRob
        Participant

          Rob,

          It takes a while for all the scars to heal, but the fear does fade as time passes.

          I am a 7+ yr stage IV survivor and still find myself revisiting the shock and fear that day of diagnosis.

          But those moments of doubt become less frequent and intense as each day passes.

          I focus on each present day, try not to think about the past too much. Family and other loved ones are top priority.

          I also pray in thanks for all of it and for the future to come.

          Hang in there!

          Peace,

          Karen

          • July 19, 2012 at 9:47 pm
          KRob
          Participant

            Rob,

            It takes a while for all the scars to heal, but the fear does fade as time passes.

            I am a 7+ yr stage IV survivor and still find myself revisiting the shock and fear that day of diagnosis.

            But those moments of doubt become less frequent and intense as each day passes.

            I focus on each present day, try not to think about the past too much. Family and other loved ones are top priority.

            I also pray in thanks for all of it and for the future to come.

            Hang in there!

            Peace,

            Karen

              • July 20, 2012 at 12:00 am
              JC
              Participant

                Karen, just curious. . you were stage I less than 1mm in 1989?  Less than 1mm and it recurred later?

                • July 20, 2012 at 12:00 am
                JC
                Participant

                  Karen, just curious. . you were stage I less than 1mm in 1989?  Less than 1mm and it recurred later?

                  • July 20, 2012 at 9:32 pm
                  KRob
                  Participant

                    Yes, I was (.98mm)participated in SWOG study on melanoma and had wide excision with lymph nodes in left armpit removed (all 23 were clear). Recurrence was late fall 2004….I wasn't officially diagnosed stage IV until Feb. of 2005.

                    • July 20, 2012 at 9:32 pm
                    KRob
                    Participant

                      Yes, I was (.98mm)participated in SWOG study on melanoma and had wide excision with lymph nodes in left armpit removed (all 23 were clear). Recurrence was late fall 2004….I wasn't officially diagnosed stage IV until Feb. of 2005.

                      • July 20, 2012 at 9:32 pm
                      KRob
                      Participant

                        Yes, I was (.98mm)participated in SWOG study on melanoma and had wide excision with lymph nodes in left armpit removed (all 23 were clear). Recurrence was late fall 2004….I wasn't officially diagnosed stage IV until Feb. of 2005.

                        • July 20, 2012 at 9:45 pm
                        KRob
                        Participant

                          I don't know how common or uncommon it is because I try not to focus too much on statistics….it's an average….a number that doesn't necessarily represent your individual case. I agree with the other poster…be vigilant, talk about concerns with doc but, otherwise, try to live life.

                          Peace,

                          K

                          • July 20, 2012 at 9:45 pm
                          KRob
                          Participant

                            I don't know how common or uncommon it is because I try not to focus too much on statistics….it's an average….a number that doesn't necessarily represent your individual case. I agree with the other poster…be vigilant, talk about concerns with doc but, otherwise, try to live life.

                            Peace,

                            K

                            • July 20, 2012 at 9:45 pm
                            KRob
                            Participant

                              I don't know how common or uncommon it is because I try not to focus too much on statistics….it's an average….a number that doesn't necessarily represent your individual case. I agree with the other poster…be vigilant, talk about concerns with doc but, otherwise, try to live life.

                              Peace,

                              K

                              • July 20, 2012 at 12:00 am
                              JC
                              Participant

                                Karen, just curious. . you were stage I less than 1mm in 1989?  Less than 1mm and it recurred later?

                              • July 19, 2012 at 9:47 pm
                              KRob
                              Participant

                                Rob,

                                It takes a while for all the scars to heal, but the fear does fade as time passes.

                                I am a 7+ yr stage IV survivor and still find myself revisiting the shock and fear that day of diagnosis.

                                But those moments of doubt become less frequent and intense as each day passes.

                                I focus on each present day, try not to think about the past too much. Family and other loved ones are top priority.

                                I also pray in thanks for all of it and for the future to come.

                                Hang in there!

                                Peace,

                                Karen

                                • July 20, 2012 at 12:09 am
                                awillett1991
                                Participant
                                  I think this is pretty common. Of course there is nothing stopping you from calling before 3 mos if you feel strongly something is out of whack. Just enjoy the NED.
                                  • July 20, 2012 at 12:09 am
                                  awillett1991
                                  Participant
                                    I think this is pretty common. Of course there is nothing stopping you from calling before 3 mos if you feel strongly something is out of whack. Just enjoy the NED.
                                    • July 20, 2012 at 12:09 am
                                    awillett1991
                                    Participant
                                      I think this is pretty common. Of course there is nothing stopping you from calling before 3 mos if you feel strongly something is out of whack. Just enjoy the NED.
                                      • July 20, 2012 at 5:28 pm
                                      Linny
                                      Participant

                                        Hi Ron, I'm glad to hear that you're doing well. I also had an unknown primary (stage III) and I do understand your fear factor. You've been cut loose (so to speak) and definitely feel like you shoud be doing "something" to keep it from coming back.

                                        You're definitely in good hands at MD Anderson!

                                        Have you done any reading about unknown primaries? There have been a number of studies done: some state that we fare the same as those with known primaries while others state that we fare somewhat better due to an "endogenous immune response". The latter definitely gives you something positive to think about. But there are no guarantees, unfortunately.

                                        When I was given my treatment options, "do nothing" also was one of them.

                                        Have you asked your doctor about taking turmeric supplements with piperine? They've done studies on that at MD Anderson so your doctor should be familiar with that combo. It can't hurt to ask and get a recommendation.

                                        • July 20, 2012 at 5:28 pm
                                        Linny
                                        Participant

                                          Hi Ron, I'm glad to hear that you're doing well. I also had an unknown primary (stage III) and I do understand your fear factor. You've been cut loose (so to speak) and definitely feel like you shoud be doing "something" to keep it from coming back.

                                          You're definitely in good hands at MD Anderson!

                                          Have you done any reading about unknown primaries? There have been a number of studies done: some state that we fare the same as those with known primaries while others state that we fare somewhat better due to an "endogenous immune response". The latter definitely gives you something positive to think about. But there are no guarantees, unfortunately.

                                          When I was given my treatment options, "do nothing" also was one of them.

                                          Have you asked your doctor about taking turmeric supplements with piperine? They've done studies on that at MD Anderson so your doctor should be familiar with that combo. It can't hurt to ask and get a recommendation.

                                          • July 20, 2012 at 5:28 pm
                                          Linny
                                          Participant

                                            Hi Ron, I'm glad to hear that you're doing well. I also had an unknown primary (stage III) and I do understand your fear factor. You've been cut loose (so to speak) and definitely feel like you shoud be doing "something" to keep it from coming back.

                                            You're definitely in good hands at MD Anderson!

                                            Have you done any reading about unknown primaries? There have been a number of studies done: some state that we fare the same as those with known primaries while others state that we fare somewhat better due to an "endogenous immune response". The latter definitely gives you something positive to think about. But there are no guarantees, unfortunately.

                                            When I was given my treatment options, "do nothing" also was one of them.

                                            Have you asked your doctor about taking turmeric supplements with piperine? They've done studies on that at MD Anderson so your doctor should be familiar with that combo. It can't hurt to ask and get a recommendation.

                                            • July 21, 2012 at 4:12 am
                                            ScagMom
                                            Participant
                                              Sounds like God is truly walking with you on this! Thank you for the encouraging report, I am StageIV as well. I understand your apprehension to the doctors not seeing you as often, but I agree, you are at the top hospital in the country and they are an excellent melanoma hospital as well. Perhaps the doctors will appease you and give you scans at 4 months instead of 6? I completely understand your fear of the possibility of something growing during the 6 months, if I was in your shoes I probably would ask for less time between scans, at least for the next year.
                                              God Bless ~ ScagMom
                                              • July 21, 2012 at 4:12 am
                                              ScagMom
                                              Participant
                                                Sounds like God is truly walking with you on this! Thank you for the encouraging report, I am StageIV as well. I understand your apprehension to the doctors not seeing you as often, but I agree, you are at the top hospital in the country and they are an excellent melanoma hospital as well. Perhaps the doctors will appease you and give you scans at 4 months instead of 6? I completely understand your fear of the possibility of something growing during the 6 months, if I was in your shoes I probably would ask for less time between scans, at least for the next year.
                                                God Bless ~ ScagMom
                                                • July 21, 2012 at 4:12 am
                                                ScagMom
                                                Participant
                                                  Sounds like God is truly walking with you on this! Thank you for the encouraging report, I am StageIV as well. I understand your apprehension to the doctors not seeing you as often, but I agree, you are at the top hospital in the country and they are an excellent melanoma hospital as well. Perhaps the doctors will appease you and give you scans at 4 months instead of 6? I completely understand your fear of the possibility of something growing during the 6 months, if I was in your shoes I probably would ask for less time between scans, at least for the next year.
                                                  God Bless ~ ScagMom
                                                    • July 22, 2012 at 11:26 pm
                                                    JC
                                                    Participant

                                                      Just wondering what was the temple melanoma pathology that metastasized, ScagMom?

                                                      • July 22, 2012 at 11:26 pm
                                                      JC
                                                      Participant

                                                        Just wondering what was the temple melanoma pathology that metastasized, ScagMom?

                                                        • July 22, 2012 at 11:26 pm
                                                        JC
                                                        Participant

                                                          Just wondering what was the temple melanoma pathology that metastasized, ScagMom?

                                                        • July 24, 2012 at 1:34 am
                                                        Ronskidtexx
                                                        Participant
                                                          Thanks for the replies. Going to outreach program for Melanoma survivors at MD Anderson tomorrow. I need to learn how to live with this. I am going back to work next week. Life must go on.

                                                          “Must defeat the Beast.”

                                                          Ron

                                                          • July 24, 2012 at 1:34 am
                                                          Ronskidtexx
                                                          Participant
                                                            Thanks for the replies. Going to outreach program for Melanoma survivors at MD Anderson tomorrow. I need to learn how to live with this. I am going back to work next week. Life must go on.

                                                            “Must defeat the Beast.”

                                                            Ron

                                                            • July 24, 2012 at 1:34 am
                                                            Ronskidtexx
                                                            Participant
                                                              Thanks for the replies. Going to outreach program for Melanoma survivors at MD Anderson tomorrow. I need to learn how to live with this. I am going back to work next week. Life must go on.

                                                              “Must defeat the Beast.”

                                                              Ron

                                                          Viewing 14 reply threads
                                                          • You must be logged in to reply to this topic.
                                                          About the MRF Patient Forum

                                                          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                          Popular Topics