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.

Lucas

Forum Replies Created

Viewing 11 reply threads
  • Replies
      Lucas
      Participant
        I hadn’t heard about this. After reading,it seems I’m a couple years too old at 41. This sounds like a great event and I would really enjoy connecting with people who’ve faced these enormous obstacles. Please let us know how it went. Enjoy!
        Lucas
        Participant
          Ed thank you for the response! I have seen that neo-adjuvant data and read those studies. However those are based in first line treatment. Because I’ve had my response already and only have the single progressing lesion it complicates things. Would neo-adjuvant be effective in the 2nd line setting?
          Based on my previous response and the non disseminated disease at this time. Data shows that surgery is a really good option. The idea would be that I have micro-metastatic control in other areas. I’m just not sure that immunotherapy will provide a benefit at this stage . I will be having a single infusion of nivo/relatlimab first, but I don’t feel I have the benefit of time to wait for another. Thanks again Ed!
          Lucas
          Participant
            You’re fine if you are having 3 month checks…
            Lucas
            Participant
              The hardest part can be the initial diagnosis. Because of all the treatment advances in melanoma I’m confident you will be ok. I advanced to stage 4 and am confident you likely never will be anywhere close. However the hardest part was the beginning. The are so many advancements in treating melanoma and so many more on the way that this disease is treatable. Keep enjoying your life and this will only be a bump in the road.
              Lucas
              Participant
                I’ve read though I can’t post a link. Most recurrences after using these drugs(ipi /nivo)and having mainly a partial or complete response. That recurrences are generally isolated and treatable generally in the form of surgery. Sorry, I can’t post a link to a study, but I’ve read Soo many things over the years that this in particular is stored in my brain. Also a good reminder to not stop getting scans and staying proactive. Best of outcome!
                Lucas
                Participant
                  Ive had two skin grafts on the bottom part of my left heel. The first graft was to remove the quarter size acral melanoma and the second to remove a recurrence. The first graft healed well, but the second graft underwent radiation and is slow to heal 3 years later. There is much more to that story, but I would undergo a skin graft first as the option to amputate would still be there if something didnt go right.
                  Lucas
                  Participant
                    Immunotherapy vitiligo is much different than the definition given above. Most individuals who respond to immunotherapy whether partially or completely will not have vitiligo. I did however develop vitiligo late into treatment. I failed Pembrolizumab and after receiving the ipi/nivo combo the condition developed. My vitligo showed up all over my groin where I had tumors. Large random patches of my hair fell out and came back white. My Scars turned white and anywhere else I had tumors (Legs, Feet) also turned white. This condition is not something to count on, but something random that could happen, likely when you’re least expecting it. I had Stage 4 acral melanoma and did have a complete response after many failed drugs (Pembro, Single Nivo, T-VEC.)
                    Lucas
                    Participant
                      I lost about 50% of my hair on iPi/nivo. When the hair came back it was all white. 3 years later it is still turning white and I continue developing vitiligo spots on my skin where I previously had tumors.
                      Lucas
                      Participant
                        Have you been checked for adrenal insufficiency? This caused me horrible joint pain to where I could barely walk up a few stairs. Went undiagnosed for a year and had some other bad effects on my body.
                        Lucas
                        Participant
                          I had a very thick acral melanoma on my heel in 2016. It spread to one popliteal lymph node with a 4mm deposit. It took one year for it to recur locally and 2 years for a distant metastasis. A melanoma specialist would also be an acral specialist as for now they are treated the same. I would assume he will have the option of being treated with immunotherapy for one year. In my case with very aggressive disease I failed the adjuvant treatment but would later have a complete response to the combo of IPI/NIVO. I think he has great options however all the literature on acral melanoma can be very scary and overwhelming.
                          Lucas
                          Participant
                            I’m not sure how an endocrinologist determines the right amount? I also made no cortisol when tested. In my case my joints were hurting really bad, I had lost 30 lbs and kept getting hospitalized when sick. However my oncologist was not a specialist and knew little about immunotherapy almost 5 years ago. Somehow and endocrinologist reviewed my case and decided 5mg prednisone daily. I felt great immediately and went back to normal. Never adjusted the dose since.
                            Lucas
                            Participant
                              In my case I only take 5mg of prednisone in the early morning. This is a very tolerable dose and I believe you should be at 10mg or under if continuing on immunotherapy. It is permanent, but thankfully very treatable. Mine went undiagnosed for a year which was a nightmare.I pray that you are healed completely from melanoma soon.
                              Lucas
                              Participant
                                Bubbles data does not actually reflect a 2nd course of ipi/nivo. It reflects the data of using ipi/ nivo after failing pd1 as a mono therapy. The response rate of a 2nd course of ipi/nivo is about 25%. I’m in the same situation after recurring 4 years later after a complete response to ipi/nivo. I’m hoping to only be surgically respected, but am waiting on a pet scan after having a Ct. recurrence is rare after having a CR or PR. only about 10% of immunotherapy responders end up in this category. 11 0f 44 people responded again to ipi/nivo , but many more had responses when combined with radiation and/or surgery. I hope we both can find responses from treatment again.
                                Lucas
                                Participant
                                  Brian, I recently finished treatment for stage 4 acral melanoma. I was first diagnosed at the age of 35 with two young children. I live in the Portland area and was treated at Kaiser Interstate. If you’d ever like to connect my email is [email protected].
                                  Lucas
                                  Participant
                                    Kevin, have you been tested for adrenal insufficiency? Mine went undiagnosed for a year and really destroyed my quality of life. I lost a lot of weight and didn’t have much desire to eat. There were also many other debilitating side effects that came with it.
                                Viewing 11 reply threads