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.

AMcReader

Forum Replies Created

Viewing 6 reply threads
  • Replies
      AMcReader
      Participant
        I meant to add the treatments I’ve previously done.

        – Nivolumab (8 months) & SRS to brain after surgery

        – Ipi/Nivo (only tolerated 3 of 4 combo treatments), but saw significant shrinkage. Then added in SRS to left lobe of lung. After liver panel finally came back down to normal 5 months later, decided to hold on Nivolumab since my lung lesion was stable. Was able to enjoy a blissful 18months off treatment until stomach lesions arrived.

        – Started Vem/Cobi alongside Atezolizomab 9/15/20 and maintained benefit until 3/2021, when we saw a new lymph node lesion. Did lots of monitoring, while investigating clinical trial options and mostly held steady until June. In July, I finally signed the paperwork for a trial but due to what I believe to be endless foot dragging, I did not start the trial until 9/2.

        – Trial is a STING injection, which is meant to essentially make the tumors “hot” to your immune system again. I received 4 of these injections over 28 days and then started the immunotherapy part of the trial which is Ipi/Nivo on 9/28.

        AMcReader
        Participant
          Thank you all for taking the time to respond. My initial reaction was the same as Mark and Warren recommended, do the WLE or utilize injectibles. However, after some additional conversations with my two Melanoma specialists, for now I’m proceeding forward just on my current treatment which is working. One, this treatment is working and two, I do feel a certain sense of responsibility to this clinical trial even though I’ve already received the part of the trial that is new.

          Also, neither of them wanted me to do the WLE because I’m currently having trouble with the tumor in my stomach bleeding and needing transfusions every 7-10 days and also I’ll be honest it being on the back of my head makes it a pretty intense procedure and not one I’m unfamiliar with. I had a WLE done on my head when I was 8 on the first melanoma that was ever found on me and it did not go well. Resulting in two intense surgeries and wounds that did not heal easily or well.

          No matter what, these other options remain if I need them moving forward.

          Thanks again for all of your thoughts, I truly appreciate it!

          AMcReader
          Participant
            Hi Stefan, I’m so sorry for what you and your mom are going through. I know how terrifying it can be.

            The best thing is to wait to see what the MRI says, but many people on this board have had brain mets, with symptoms and have recovered just fine. Personally, I had a tennis ball-sized brain met that was making it impossible for me to talk or write (a bit funny because in my non-cancer life I’m the VP of a communications team). Luckily, they were able to remove it, radiate the cancer bed and get me started on immunotherapy and I’ve been lucky to be 3.5 years cancer free in my brain.

            We are lucky to now have access to many great treatments that work in the brain. Hopefully, your mom won’t need to worry about it, but if she does, treatments are available.

            Amanda

            AMcReader
            Participant
              Thanks, Celeste! That was a good, succinct read. Some of the reading I’d done related to DTING had been a lot more complex and hard for me to follow.

              For the record, you are correct being a rattie is certainly not for the faint of heart!!!!!!!! It does give me even more appreciation for all the brave ones who came before though!

              AMcReader
              Participant
                I too am so glad you posted this. I have been thinking about Julie for months and hoping we’d get some kind of update. Sending love to her wherever she is.
                AMcReader
                Participant
                  Gary your story of battle and survival has brought me hope many times as I continue on my battle through melanoma. Thank you for continuing to share with us! I wish you decades of a joyous retirement filled with lots of time spent with your grandkids — no doubt you deserve it!
                  AMcReader
                  Participant
                    Oh Christin, so sorry to read this news! I hope this ends up being a blip on your radar and not real progression, but if not there are many great immunotherapy options. I’ve been managing Stage 4 for 3+ years now and although I’m not NED yet…I like to tell people I’ve never progressed while on treatment and even enjoyed a sweet 1.5 years off treatment before progression.

                    Celeste has weighed in with all of her brilliant advice so you have the facts you need to get started. From personal experience, I did the Ipi/Nivo combo and found it manageable. I did have side effects — occasional chills/fever, a bit of exhaustion, stomach pain (but not colitis) and eventually acute hepatitis which prevented me from getting the final combo dose — but I was able to mostly manage life just fine with a bit more sleep and compassion for myself. I still worked full-time (I did take a couple of sick days and had the flexibility to work from home a few times), played with and managed my 1 year old daughter, decorated and celebrated Christmas, threw my daughter her first birthday party and traveled. Did I feel 100%, no. Was I still able to go about and appreciate life, yes!

                    Wishing you wellness and strength to manage the unknown.

                      AMcReader
                      Participant
                        Most importantly my tumor burden reduced by about 75%!
                      AMcReader
                      Participant
                        Thank you, Ed!! I’m definitely going to check out what Dr. Luke shares about STING!
                        AMcReader
                        Participant
                          Hi Warren, You have an excellent memory! I’m from Milwaukee originally, but I live in Columbus, Ohio now which is only about a 3.5hr drive from Pittsburgh. Right now, everything is happening in Pittsburgh so it’s kind of a pain but they’ve been good about scheduling things all in a row to make the trips as quick as possible. It’d be much easier if I could do this in Columbus, where I live 10 minutes from the clinic, but Ohio State Medical Center isn’t running any good trials for me right now so we all thought it was best that I pursue this trial in Pittsburgh.
                          AMcReader
                          Participant
                            Awww, jbronki, your posts are always the kindest! I’m very hopeful about this trial and will certainly keep everyone posted on any strange responses or side effects. We all need each other through this!

                            I hope life is treating you well and that you enjoyed the heck out of your summer!

                            AMcReader
                            Participant
                              Thank you!!
                              AMcReader
                              Participant
                                Thanks for sharing! This is how my doctor described it, but it was nice to see the visuals and hear someone else’s take.
                                AMcReader
                                Participant
                                  This reply has been marked as private.
                                  AMcReader
                                  Participant
                                    Wow, Caman! That is a LOT! It’s very hard to make sense of the combination of the vaccine and immunotherapy.
                                Viewing 6 reply threads