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Stage 3C – Another CT Scan odered
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Stage 3C – Another CT Scan odered

› Forums › General Melanoma Community › Stage 3C – Another CT Scan odered

  • Post
    • June 22, 2011 at 3:55 pm
    newmanmark
    Participant

      Hello,

      It has been a long time since I have posted here.  I am a 31 year old Stage 3C with 8 nodes infected.  I had a complete lymph node dissection under both arms, 5 weeks of radiation and 7 months of Interferon.  The Interferon sent me into a manic state and I had to withdraw.  I have been off of Interferon since October 2010 and so far all scans have come back clear.  While going through radiation my wife and I had our first child.  This had to be the most difficult time of my life.

      Hello,

      It has been a long time since I have posted here.  I am a 31 year old Stage 3C with 8 nodes infected.  I had a complete lymph node dissection under both arms, 5 weeks of radiation and 7 months of Interferon.  The Interferon sent me into a manic state and I had to withdraw.  I have been off of Interferon since October 2010 and so far all scans have come back clear.  While going through radiation my wife and I had our first child.  This had to be the most difficult time of my life.

      The reason I write is because for the past 2 weeks I have had some discomfort in my abdomen area especially in the upper right portion (under my ribs).  I am concerned that the melanoma may have come back in my liver.  My oncologist has ordered a CT scan to rule it out.  However the scan isn't until July 11th.  The wait is awful and my mind continually races.

      It would be good to hear from other Stage 3 patients (especially 3C) who are doing well long after their diagnosis.  I am constantly reading horror stories and it drags me down mentally.  Is there anyone out there with a good story of reamining NED with several nodes infected?

      Thanks
      Mark

    Viewing 11 reply threads
    • Replies
        • June 22, 2011 at 4:27 pm
        Lisa13
        Participant

          Hi Mark,

          I'm so sorry you're going through all this anxiety.  I would suggest getting your CT scan pushed up sooner so that you don't have to wait this out.   The discomfort could be from a number of things, including side effects from Interferon, but it's good that you're on top of it.

          That being said, I can think of 1 person on this board who had 14 lymph nodes with melanoma and he is alive and NED for I think 8 years.  He may chime in at some point 🙂  Having had or have melanoma is very scary, but what keeps me going is that medicine is evolving and they are finding newer more effective treatments for this horrible disease. Try not to read up on the horror stories because it doesn't mean it's going to be YOUR story.

          I'm sending prayers and good thoughts your way and hope that your scan reveals nothing.

          Lisa

          • June 22, 2011 at 4:27 pm
          Lisa13
          Participant

            Hi Mark,

            I'm so sorry you're going through all this anxiety.  I would suggest getting your CT scan pushed up sooner so that you don't have to wait this out.   The discomfort could be from a number of things, including side effects from Interferon, but it's good that you're on top of it.

            That being said, I can think of 1 person on this board who had 14 lymph nodes with melanoma and he is alive and NED for I think 8 years.  He may chime in at some point 🙂  Having had or have melanoma is very scary, but what keeps me going is that medicine is evolving and they are finding newer more effective treatments for this horrible disease. Try not to read up on the horror stories because it doesn't mean it's going to be YOUR story.

            I'm sending prayers and good thoughts your way and hope that your scan reveals nothing.

            Lisa

            • June 22, 2011 at 5:16 pm
            lhaley
            Participant

              Mark,

              I've thought of you often and wondered how you were doing.  I have had stomach issues up high on the right side also.  Scans showed nothing but I persisted.  Ended up being my gallbladder! Not mel but it just isn't functioning correctly – only at 3%. It was a hida scan that discovered this. The pain was there more consistently then when there is a stone.  While I don't know if this is your issue it just might be. Also might be caused by the interfuron.

              It's ashame you have to wait till July 11th for the scans. Meanwhile take some deep breaths and imagine that this isn't mel but just an ordinary illness.

              My gallbladder is still in me because I am dealing with another recurrance. However, once all is clear it is coming out!

              Let us know how the baby is doing! 

              Linda

              • June 22, 2011 at 5:16 pm
              lhaley
              Participant

                Mark,

                I've thought of you often and wondered how you were doing.  I have had stomach issues up high on the right side also.  Scans showed nothing but I persisted.  Ended up being my gallbladder! Not mel but it just isn't functioning correctly – only at 3%. It was a hida scan that discovered this. The pain was there more consistently then when there is a stone.  While I don't know if this is your issue it just might be. Also might be caused by the interfuron.

                It's ashame you have to wait till July 11th for the scans. Meanwhile take some deep breaths and imagine that this isn't mel but just an ordinary illness.

                My gallbladder is still in me because I am dealing with another recurrance. However, once all is clear it is coming out!

                Let us know how the baby is doing! 

                Linda

                • June 22, 2011 at 5:17 pm
                RMcLegal
                Participant

                  Hi Mark, I was diagnosed Stage IIIc (14 malignant nodes) in the summer of 2003 and underwent biochemotherapy treatments that included interferon.  Despite a few scares, I've remained healthy and NED for almost 8 years.  There are a lot of others like me out there.  I do understand how excrutiating it is to wait for a scan– seems like your oncologist could get it scheduled a lot sooner if he's concerned about a recurrence.  The last time my doc was concerned about a possible lung metastasis based on some x-ray results, he got the chest CT scan scheduled for the next day.

                  I've blogged about the lighter side of my journey with melanoma at http://www.hotelmelanoma.blogspot.com, and you might enjoy it.

                  Best wishes to you!  Rich

                  • June 22, 2011 at 5:17 pm
                  RMcLegal
                  Participant

                    Hi Mark, I was diagnosed Stage IIIc (14 malignant nodes) in the summer of 2003 and underwent biochemotherapy treatments that included interferon.  Despite a few scares, I've remained healthy and NED for almost 8 years.  There are a lot of others like me out there.  I do understand how excrutiating it is to wait for a scan– seems like your oncologist could get it scheduled a lot sooner if he's concerned about a recurrence.  The last time my doc was concerned about a possible lung metastasis based on some x-ray results, he got the chest CT scan scheduled for the next day.

                    I've blogged about the lighter side of my journey with melanoma at http://www.hotelmelanoma.blogspot.com, and you might enjoy it.

                    Best wishes to you!  Rich

                    • June 22, 2011 at 6:15 pm
                    Phyllis in IA
                    Participant

                      My husband had nearly 50 positive nodes in both axillary and supraclavicular lymph basins.  After 4 rounds of biochemo and 4 weeks of radiation he has remained NED for 12 years (as of Feb).  It is possible to be a long-term survivor after multiple positive nodes.  Praying your current issues are non-melanoma related. 

                      Phyllis

                        • June 22, 2011 at 6:35 pm
                        newmanmark
                        Participant

                          Hi Phyllis,

                          Thanks for writing.  Did your husband do Interferon?

                          Thanks

                          Mark

                          • June 23, 2011 at 6:18 am
                          Phyllis in IA
                          Participant

                            Interferon was included in the biochemo along with IL2 and 3 chemo drugs.  It was tough, but he got through it, and we're very thankful for the result.  It's all so unpredictable.  So glad that your scans have come back clear so far, and do hope this next will too.  I know the waiting can be terrible, but hang in there.  We'll be praying for you. 

                            Phyllis

                            • June 23, 2011 at 6:18 am
                            Phyllis in IA
                            Participant

                              Interferon was included in the biochemo along with IL2 and 3 chemo drugs.  It was tough, but he got through it, and we're very thankful for the result.  It's all so unpredictable.  So glad that your scans have come back clear so far, and do hope this next will too.  I know the waiting can be terrible, but hang in there.  We'll be praying for you. 

                              Phyllis

                              • June 22, 2011 at 6:35 pm
                              newmanmark
                              Participant

                                Hi Phyllis,

                                Thanks for writing.  Did your husband do Interferon?

                                Thanks

                                Mark

                              • June 22, 2011 at 6:15 pm
                              Phyllis in IA
                              Participant

                                My husband had nearly 50 positive nodes in both axillary and supraclavicular lymph basins.  After 4 rounds of biochemo and 4 weeks of radiation he has remained NED for 12 years (as of Feb).  It is possible to be a long-term survivor after multiple positive nodes.  Praying your current issues are non-melanoma related. 

                                Phyllis

                                • June 23, 2011 at 10:12 pm
                                Jim M.
                                Participant

                                  I was diagnosed  stage 3C with 3  positive nodes. I did radiation and a trial with Ipi and vaccines. I've had no recurrences and have been NED for 3 years, 7 months.

                                   God Bless,

                                   Jim M.

                                    • June 23, 2011 at 11:48 pm
                                    boot2aboot
                                    Participant

                                      i can't give you a long term survivor story and i get rescanned on the 30th of this month and i understand the anxiety…i am also stage 3c mortified by horror stories and i had to shift my thinking…i think i am NED up until they tell me differently…i don't look past today as far as mel but make long term plans to do fun things…i repeat this mantra everytime the boogieman shows up in my head and i will share with you

                                      Divine Health manifests for me and in me NOW

                                      i deflect my thought processes by diversion…projects, funny movies, exercise, meditation

                                      boots

                                      • June 23, 2011 at 11:48 pm
                                      boot2aboot
                                      Participant

                                        i can't give you a long term survivor story and i get rescanned on the 30th of this month and i understand the anxiety…i am also stage 3c mortified by horror stories and i had to shift my thinking…i think i am NED up until they tell me differently…i don't look past today as far as mel but make long term plans to do fun things…i repeat this mantra everytime the boogieman shows up in my head and i will share with you

                                        Divine Health manifests for me and in me NOW

                                        i deflect my thought processes by diversion…projects, funny movies, exercise, meditation

                                        boots

                                      • June 23, 2011 at 10:12 pm
                                      Jim M.
                                      Participant

                                        I was diagnosed  stage 3C with 3  positive nodes. I did radiation and a trial with Ipi and vaccines. I've had no recurrences and have been NED for 3 years, 7 months.

                                         God Bless,

                                         Jim M.

                                        • July 1, 2011 at 3:39 pm
                                        Lauri England
                                        Participant

                                          Hello there.  I am also stage 3C with 3 positive lymph nodes.  I am in my 9th month of interferon.  A few weeks ago I had a lump under my arm.  I had surgery to remove the node and it came back benign.  I have not had any scans since being on Interferon.  From past stories I am not sure this is a good thing.  Anyway I check myself basically daily.  I also search for the long time survivors but I know that once people are NED for a long time they tend not to re document progress unless it is bad. I often wonder if the fear and anxiety about recourance ever gets better. My 1 year ned will be August 13th.

                                          • July 1, 2011 at 3:39 pm
                                          Lauri England
                                          Participant

                                            Hello there.  I am also stage 3C with 3 positive lymph nodes.  I am in my 9th month of interferon.  A few weeks ago I had a lump under my arm.  I had surgery to remove the node and it came back benign.  I have not had any scans since being on Interferon.  From past stories I am not sure this is a good thing.  Anyway I check myself basically daily.  I also search for the long time survivors but I know that once people are NED for a long time they tend not to re document progress unless it is bad. I often wonder if the fear and anxiety about recourance ever gets better. My 1 year ned will be August 13th.

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