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I belong here… IB to IIIC

› Forums › General Melanoma Community › I belong here… IB to IIIC

  • Post
    • February 17, 2017 at 10:00 pm
    J.bun
    Participant

      I’ve been eager for my first post in this community, and felt like I needed to find the “right” way for myself.  Since my initial IB diagnosis in April 2015, I’ve been an avid reader/lurker on this board.  Like so many of the “early stagers,” I felt shocked – then relief it was only 1B – and concern for the future recurrence.  Unfortunately, these fears were recognized when I noticed a lump in my groin at the site of my sentinel node biopsy this past Thanksgiving.  Within one week I had an excision and PET CT scan – 2 nodes and skin involved.  I go to the Inova Melanoma specialty clinic in Northern Virginia – right outside DC.

      Now, less than 100 days since this diagnosis, I have been on 3 treatments (6 total drugs – Ipi/Nivo; Zelboraf/Cotellic; Tafinlar/Mekinist); prednisone; and encountered an 8-night hospital stay (severe allergic reaction to Zelboraf – known as DRESS- extremely rare and potentially fatal).  Most importantly, my PET CT scan this week is showing that the drugs are working! 

      I am writing all this to thank all you contributors/active posters – and hope to share my experiences and support each other too.  I wouldn't have been able to understand everything I went through and the questions to ask had it not  been for this board.   

      I am a 33 years old, I am not writing this to raise fears – but I believe information can be empowering, and facing reality is far more important than to "keep your head in the sand."  We all want the same thing, and share the same goals.

    Viewing 5 reply threads
    • Replies
        • February 18, 2017 at 3:40 am
        Bubbles
        Participant

          Dang, J!!  Sounds like you have been through it!!  Melanoma isn't for sissies, is it?  You hate to tell newbies…"You really need to be vigilant!  Don't panic.  Just be aware, in case things go south!"  But, so it is. Glad things seem to be looking up!  Hang tough!  celeste

            • February 18, 2017 at 12:36 pm
            J.bun
            Participant

              Thanks Celeste! And I can't thank you enough for your blog… it really helped to open my eyes on the various research/data, encouraged me to look further, and ask informed questions about my treatment. 

              I know this is a long road… my best wishes to you too!

              • February 18, 2017 at 12:36 pm
              J.bun
              Participant

                Thanks Celeste! And I can't thank you enough for your blog… it really helped to open my eyes on the various research/data, encouraged me to look further, and ask informed questions about my treatment. 

                I know this is a long road… my best wishes to you too!

              • February 18, 2017 at 3:40 am
              Bubbles
              Participant

                Dang, J!!  Sounds like you have been through it!!  Melanoma isn't for sissies, is it?  You hate to tell newbies…"You really need to be vigilant!  Don't panic.  Just be aware, in case things go south!"  But, so it is. Glad things seem to be looking up!  Hang tough!  celeste

                • February 18, 2017 at 6:14 am
                UBContributor
                Participant

                  Ib too, 26 y.o…reading your post is scaring to me. Thanks for sharing. Can u pls tell where was ur initial spot? Mine was above ancle bone, mid Nov 2016. Mid Jan 2017 – PET and removal of a groin lymphnodes were clear.  

                   

                    • February 18, 2017 at 12:55 pm
                    J.bun
                    Participant

                      UBContributor –  mine was on the back of my upper thigh.  My best advice to you is (1) enjoy life – have fun –  travel – do what you enjoy (2) remind your family/loved ones that what you had was serious & can come back (3) remain vigilant & act quickly if you think something is wrong (4) follow protocols with your doctors and maintain a good relationship with them, but don't rely on them to discover if something astray  

                      Statistically,  it seems people like me are in the minority 

                      I wish all the best for you! 

                       

                      • February 18, 2017 at 12:55 pm
                      J.bun
                      Participant

                        UBContributor –  mine was on the back of my upper thigh.  My best advice to you is (1) enjoy life – have fun –  travel – do what you enjoy (2) remind your family/loved ones that what you had was serious & can come back (3) remain vigilant & act quickly if you think something is wrong (4) follow protocols with your doctors and maintain a good relationship with them, but don't rely on them to discover if something astray  

                        Statistically,  it seems people like me are in the minority 

                        I wish all the best for you! 

                         

                      • February 18, 2017 at 6:14 am
                      UBContributor
                      Participant

                        Ib too, 26 y.o…reading your post is scaring to me. Thanks for sharing. Can u pls tell where was ur initial spot? Mine was above ancle bone, mid Nov 2016. Mid Jan 2017 – PET and removal of a groin lymphnodes were clear.  

                         

                        • February 18, 2017 at 7:41 pm
                        Polymath
                        Participant

                          Hi J,

                          Thanks for contributing and I can tell you will be a valuable asset to those in similar circumstances.  I am really curious though.  The drug treatments you mentioned are all for Stage IV patients, and not readily available to Stage III (although we hope this changes soon).  Were you in trials for all these?  And most of all, congratulations on being a responder though it's not clear whether any particular treatment was the one that worked best. 

                          Gary

                            • February 18, 2017 at 11:00 pm
                            J.bun
                            Participant

                              Hi Gary – thanks for your message. I was diagnosed with "unresectable melanoma" due to size and location of one of the lymph nodes to a major artery.  While not an ideal diagnosis (since let's be honest, none of this is), I realize it has given me a breadth of treatment options.  

                              I have seen people with other conditions stuck in that place where things aren't quite bad enough… so sometimes I wonder if I should consider myself "lucky."

                              • February 19, 2017 at 2:43 am
                              Mark_DC
                              Participant

                                Good luck J – pity about the zelboraf reaction, have not seen this much on this board, but great that they caught it. Hoping that the drugs will work and hope that can support each other

                                • February 19, 2017 at 6:43 pm
                                J.bun
                                Participant

                                  Thanks Mark – appreciate your good wishes – I had a rough start with Zelboraf/Cotellic from the beginning. I was only on the full combo with Cotellic for 4 days (it caused ocular problems) and the Zelboraf for a total of 8. If it hadn't been for reading these boards for so long, I am not sure I would have had my husband call an ambulance at 1:30am to go to the ER.  

                                  I learned that my doctors actually wrote the first journal article about Zel & DRESS – thank goodness they were able to tell the ER/hospital doctors what to do and look for.  Here we are two months later, and I am still gaining my strength back, but my melanoma did shrink during that time and continued to appear to shrink even while off all meds for nearly a month. 

                                  Whereabouts in D.C. are you being treated?  I picked Inova based on referral back in 2015, but did consider Hopkins back then and thinking about getting a 2nd opinion in the near future. 

                                  • February 22, 2017 at 3:53 am
                                  Mark_DC
                                  Participant

                                    Hi J – I am being treated at Georgetown, i think they are good (but i cannot really tell, i do know that they know melanoma and have publiished in the area and give me plenty of time and are caring). I went to hopkins  early on for a second opinion (at sibley satellite) – i liked them too but thought my georgetown doctors approach made sense so i stayed with georgetown. I think anyway the gtown doctors talk to hopkins and can move patients around if trials pop up. I know inova has a melanoma feam foo but i live in dc and i think georgetown is good (-and tschmith seems happy with her treatment there too). Good luck sorry for delay mark

                                    • February 22, 2017 at 10:10 pm
                                    J.bun
                                    Participant

                                      We are lucky to have several strong options in the area!  The doctors at Inova previously worked/were "trained" at Gtown, but practicing several years now independently and so I pretty much dismissed Gtown – although it is right up the road from me.  I'll continue to keep my options open when I feel it is time for a second opinion.  Thanks for your note!  

                                      • February 19, 2017 at 6:43 pm
                                      J.bun
                                      Participant

                                        Thanks Mark – appreciate your good wishes – I had a rough start with Zelboraf/Cotellic from the beginning. I was only on the full combo with Cotellic for 4 days (it caused ocular problems) and the Zelboraf for a total of 8. If it hadn't been for reading these boards for so long, I am not sure I would have had my husband call an ambulance at 1:30am to go to the ER.  

                                        I learned that my doctors actually wrote the first journal article about Zel & DRESS – thank goodness they were able to tell the ER/hospital doctors what to do and look for.  Here we are two months later, and I am still gaining my strength back, but my melanoma did shrink during that time and continued to appear to shrink even while off all meds for nearly a month. 

                                        Whereabouts in D.C. are you being treated?  I picked Inova based on referral back in 2015, but did consider Hopkins back then and thinking about getting a 2nd opinion in the near future. 

                                        • February 19, 2017 at 2:43 am
                                        Mark_DC
                                        Participant

                                          Good luck J – pity about the zelboraf reaction, have not seen this much on this board, but great that they caught it. Hoping that the drugs will work and hope that can support each other

                                          • February 19, 2017 at 3:57 am
                                          Polymath
                                          Participant

                                            J,

                                            ahhh, I get it now.  Yes, in the weirdest way imaginable, you're lucky.  Even though I've been battling an aggressive Stage IV diagnosis for more than 4 years, I still consider myself lucky too.  I'll also mention that my first drug therapy was Zelboraf, and it was worst three months of my life.  I had every single side-effect imaginable, including the drug giving me new skin cancer, squamous cell carcinoma, and photo-sensitivity that can only be compared to the vampire in the movies who skin sets on fire when exposed to a second or two of sunlight.  Lost every hair on my body, 20% of my body weight, and what my doctor said was the worst rash he ever saw.  I was happy to progress even though the Zel made quick work of several tumors, so I guess no pain, no gain. Best to you in the battle.

                                            Gary

                                            • February 19, 2017 at 7:08 pm
                                            J.bun
                                            Participant

                                              Thanks for your support Gary.  I am sorry you had to endure such severe side effects for 3 months. It is amazing what the body is able to go through, and then capable of recovering from… albeit different for everyone.  

                                              I hope your latest treatments find sustained results!

                                              • February 19, 2017 at 7:08 pm
                                              J.bun
                                              Participant

                                                Thanks for your support Gary.  I am sorry you had to endure such severe side effects for 3 months. It is amazing what the body is able to go through, and then capable of recovering from… albeit different for everyone.  

                                                I hope your latest treatments find sustained results!

                                                • February 19, 2017 at 3:57 am
                                                Polymath
                                                Participant

                                                  J,

                                                  ahhh, I get it now.  Yes, in the weirdest way imaginable, you're lucky.  Even though I've been battling an aggressive Stage IV diagnosis for more than 4 years, I still consider myself lucky too.  I'll also mention that my first drug therapy was Zelboraf, and it was worst three months of my life.  I had every single side-effect imaginable, including the drug giving me new skin cancer, squamous cell carcinoma, and photo-sensitivity that can only be compared to the vampire in the movies who skin sets on fire when exposed to a second or two of sunlight.  Lost every hair on my body, 20% of my body weight, and what my doctor said was the worst rash he ever saw.  I was happy to progress even though the Zel made quick work of several tumors, so I guess no pain, no gain. Best to you in the battle.

                                                  Gary

                                                  • February 18, 2017 at 11:00 pm
                                                  J.bun
                                                  Participant

                                                    Hi Gary – thanks for your message. I was diagnosed with "unresectable melanoma" due to size and location of one of the lymph nodes to a major artery.  While not an ideal diagnosis (since let's be honest, none of this is), I realize it has given me a breadth of treatment options.  

                                                    I have seen people with other conditions stuck in that place where things aren't quite bad enough… so sometimes I wonder if I should consider myself "lucky."

                                                  • February 18, 2017 at 7:41 pm
                                                  Polymath
                                                  Participant

                                                    Hi J,

                                                    Thanks for contributing and I can tell you will be a valuable asset to those in similar circumstances.  I am really curious though.  The drug treatments you mentioned are all for Stage IV patients, and not readily available to Stage III (although we hope this changes soon).  Were you in trials for all these?  And most of all, congratulations on being a responder though it's not clear whether any particular treatment was the one that worked best. 

                                                    Gary

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