MRF-Logo2019-Horizontal-RGB
Lucas
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.

Lucas

Forum Replies Created

Viewing 13 reply threads
1 2 3 4 5
  • Replies
      • November 20, 2024 at 3:49 pm
      Lucas
      Participant
        Just wanted to follow up and report that this area has cleared up after a steroid taper. It was likely bronchitis or pneumonia. These things are never easy and gave me extreme anxiety for a month with at least one panic attack! Thank you to all who responded.
        • November 8, 2024 at 3:52 pm
        Lucas
        Participant
          Sorry, to hear of her passing. I was wondering where she had been in regards to the forum. She has contributed and left so much information for all of us survivors and fighters. I’m forever grateful for her chaoticallyprecise blog that has provided such detailed answers when going through my treatments, side effects and recurrences. As well as her hundreds of responses to forum questions on this site. Her wisdom talked me off the edge so many times and she seemed to genuinely care for us all. Thank you Celeste and may you rest peacefully.
          • September 23, 2024 at 5:42 pm
          Lucas
          Participant
            Thank you both for responding. I am very prone to infections after years of every kind of immunotherapy treatment. I developed type 1 diabetes and adrenal insufficiency. It definitely feels more viral or infectious due to the mucus and what feels like chest congestion. However I’m not obviously sick? Every met I’ve ever had started with a measurement on Ct report, so this seems different? I’m more confident than not about it disappearing down the road. Thanks again to all who still visit the forum!
            • September 23, 2024 at 11:00 am
            Lucas
            Participant
              Thank you Ed for the response. There were no measurements taken of any of the nodules. The impression was that “the findings are indeterminate, scan again in 3 months w/o contrast.”
              I understand it could be a number of things, but am going to live with extra anxiety for the next few months.
              • September 22, 2024 at 3:06 pm
              Lucas
              Participant
                I should add that the findings are indeterminate. I’ve also been coughing up small amounts of mucus for a couple months?
                • August 4, 2024 at 5:42 pm
                Lucas
                Participant
                  No you’re not a goner…I was a goner at one point also until I wasn’t. I’m guessing it’s a retroperitonal lymph node? Anyways if that’s it and hasn’t gone to your CNS. That is oligometastatic and if it’s in only one spot your statistics are favorable. However, I would want to be put on nivo/rela it’s a different pathway. It’s kind of like starting over and I would want to treat aggressively. Keep us posted, praying for you determinately!
                  • August 2, 2024 at 8:52 pm
                  Lucas
                  Participant
                    What type of recurrence? I had an oligometastaic recurrence in a previous spot after 3 years ned from ipi-nivo. I was then put on 2 cycles of relatlimab-nivo. The tumor was very palpable in my groin, but shrunk dramatically. After removal it was mostly necrotic with less than 10% tumor involvement.
                    • May 21, 2024 at 9:30 pm
                    Lucas
                    Participant
                      I had a recurrence (lymph node groin 4cm, suv was about the same)last year after 3 years NED from opdivo yervoy. I then had 2 cycles of nivolumab/relatlimab followed by surgery. The nivo/rela shrunk the tumor in half and upon pathology it was less than 10% cancerous. No re-currences in the following year. There is hope in re-starting immunotherapy and I’ve read good things about Levatinib. Best of outcomes God Bless.
                      • August 13, 2023 at 3:19 pm
                      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!
                        • July 14, 2023 at 7:08 pm
                        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!
                          • June 28, 2023 at 8:38 pm
                          Lucas
                          Participant
                            You’re fine if you are having 3 month checks…
                            • May 8, 2023 at 10:05 pm
                            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.
                              • March 21, 2023 at 10:49 pm
                              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!
                                • March 9, 2023 at 11:36 am
                                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.
                                  • June 29, 2023 at 7:35 pm
                                  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.
                                Viewing 13 reply threads
                                1 2 3 4 5