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Raeofsonshine
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Raeofsonshine

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      • March 4, 2020 at 8:40 pm
      Raeofsonshine
      Participant
        I have had them twice. The second time around we did TVEC injections and BAM, they are gone. Mine we bumps under the skin, not any color and did not move.
        • September 19, 2018 at 2:40 pm
        Raeofsonshine
        Participant

          And I came here this morning to post and get amazing advice from such awesome people and to see this and read back and see what happened to you.  I am SO SORRY and this is truly heartbreaking and unfair.  You are superhuman when it comes to Melanoma and then this nasty newbie shows up and just annihilates you.  As usual your demander is inspiring and humorous.  Thank you for your wealth of knowledge over the years and more so that you continue to be here when you have so much that have to deal with now.  I don’t know you from  Adam and am thinking you of often.

            • September 19, 2018 at 2:43 pm
            Raeofsonshine
            Participant

              DEMEANOR – but I'm sure you got that. 🙂

            • May 17, 2018 at 6:47 pm
            Raeofsonshine
            Participant

              I was diagnosed with T1D after 2 combo treatments.  Lost my thyroid and had elevated liver counts that after steroids was reversed.  My doc told me that T1D was unlikely to happen but then had 3 patients in a row have it happen.  So it goes, the treatment is just as unpredictable as the disese itself (Mel that is).  Best of luck!

              • November 3, 2017 at 5:55 pm
              Raeofsonshine
              Participant

                Thanks Tex!  I love the upbeat attitude and really appreciate you sharing your experience as I will be starting treatments within the next month.  Have a great weekend and keep fighting!

                • October 25, 2017 at 6:17 pm
                Raeofsonshine
                Participant

                  Mine was a pea size lump under the skin, off about 3 inches from my scar. (primary tumor site).  Surgeon thought it was likely a lipoma, but it was melanoma.  Have a new one and hoping it's nothing.  But they both are just bumps under the skin.  I do have a lot of scar tissue down the middle of my zipper.  I know now, every little thing makes us stop and pause.  Take a breath! 

                  • October 25, 2017 at 6:09 pm
                  Raeofsonshine
                  Participant

                    Hi Donna,

                    3a for me about 15 months ago.  Nodular, 18 mitotic rate, 5.5 mm.  Two weeks ago found a lump a few inches from the scar and luckily my surgeon didn't hesitate to biopsy.  He thought it was a lipoma, came back as melanoma.  Have an appointment next week for the next battle.  Hang tough! 

                     

                    • October 18, 2017 at 3:03 pm
                    Raeofsonshine
                    Participant

                      ASK to have it looked at.  I had the same thing come up a couple of weeks ago.  My surgeon offered to take it out to be sure.  He thought it looked like a lipoma.  Fast forward a week and it's melanoma.  You have to be your own advocate.  I'm not saying you'll get the same result but just knowin that someone cares enough to take a look to put you at ease is huge.  I don't care if all of my care team thinks I'm a nut job, I'm not going down without a fight.  Good luck and hoping it's nothing!

                      • September 24, 2018 at 12:24 pm
                      Raeofsonshine
                      Participant

                        Thank you ED!  You are so always so helpful- please know it is truly apprecated.  

                        • September 24, 2018 at 12:24 pm
                        Raeofsonshine
                        Participant

                          Thank you Mark!  My doc explained it all very well and yes the process is a "day trip" but hopefully worth it.  Thakn you for explaing the side affects.  I have felt human again since the start of summer and not really looking ofrward to feeling like dirt so hopefully the flue like symptoms only last for a couple  of days.  

                          Thak you again! 

                          • September 24, 2018 at 12:21 pm
                          Raeofsonshine
                          Participant

                            Thanks for positive vibes Mike!  Initally I had researched your posts because for some reason I thought you had done these.  YOU TAKE CARE OF YOURSELF and keep going!  

                            • March 7, 2018 at 9:43 pm
                            Raeofsonshine
                            Participant

                              Thank you for your post.  Are you still insulin dependent? How is your liver? 

                              • March 2, 2018 at 5:10 pm
                              Raeofsonshine
                              Participant

                                Thank you for your post!  I see that you are extremely educated on the topic and have been dealing with and helping others understand this monster for some time.   I see Dr. Rene Gonzalez at the University of Colorado, Melanoma Clinic.  He and Dr. Karl Lewis I know have been on the forefront of a lot of the research and trials for these drugs.  I do feel like I am with the best for this part of the country- I live in Denver.  I truly think if he thought I should be doing alternative treatment he would suggest it.  I hope so anyway.  It is really hard to place your life in someone else's hands and hope they have your best interests at heart.  I am not yet 2 years out of initial diagnosis and I am not NED.  I have lost my thyroid, damaged my liver and likely am now insulin dependent.  IF the beast is contained I am ok with that.  Not complaining at all.  Really what I need to understand is HOW LONG does the system continue to fight/ attack the melanoma after your last dose.  This is what I don't understand.  

                                 

                                Thanks again for your posts!

                                 

                                • February 28, 2018 at 6:07 pm
                                Raeofsonshine
                                Participant

                                  Thank you for your input and for sharing the link!  I wish I were NED.  That is not the case.  I am blessed that the disease has not progressed to my trunk area and head BUT I have a leg with about 6 or 7 mets so lets hope the treatment worked to keep them from becoming hazardous.  

                                  • October 11, 2017 at 4:30 pm
                                  Raeofsonshine
                                  Participant

                                    Thanks! Yes I went in yesterday and THANK GOD my surgical oncologist said "let's take it out" so that I would know and not have the worry.  Upon removal he stated it looks like a lipoma but of course will biopsy to confirm.  A few days of angst until we confirm but I can handle that.  Here's to thinking nothign but good thoughts!

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