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.

Gigi

Forum Replies Created

Viewing 1 reply thread
  • Replies
      Gigi
      Participant
        Bubbles your blog and resources are so very helpful. Thank you I very much appreciate all the information.

        I have decided to move forward with surgery on Aug 31. It is likely a right bilobectomy (upper and middle) or right pneumonectomy.

        I am fortunate that mediastinal lymph nodes apoear to be clear on PET and CT.

        Because my tumor involves the right superior pulmonary vein up to the ostium at left atrium, the cardiac surgeon will be there too.

        Just living everyday to the fullest until then and looking forward to getting surgery behind me and getting better.

        Thanks for all the help with information and sharing your journey.

        Gigi
        Participant
          Thank you Bubbles!
          Enjoy the weekend 😊
          Gigi
          Participant
            Thank you so much Ed

            The video covers so many topics and answered a lot of questions.
            Thanks for sharing!

            Gigi
            Participant
              Dear Ed

              Thanks for the articles. The 6.5 year data on Checkmate 067. It is great to have the science. The chart (Fig 6) you mentioned stratifying survival by type if patient response to CPIs is really helpful. I had been searching for something like this!

              Now I wish is was stratified by type of response to CPI AND location of metastasis! Maybe at somepoint I’ll find that.

              Thanks so much for your help. Do appreciated!

              Gigi
              Participant
                Dear Bubbles

                Thanks for your informative links – so helpful especially to understand data of immunotherapy responders that also had surgery.

                Survival Outcomes After Metastasectomy in Melanoma Patients Categorized by Response to Checkpoint Blockade. Bello, Panageas, Hollmann, et al. Ann Surg Oncol. 2020 April 27.

                Your story is inspirational – especially being diagnosed so young when treatment options were limited. I am glad you are doing so well, it gives me much hope.

                Thanks again for all the information!

                Gigi
                Participant
                  Thank you Ed for your thoughts on the PET SUV values . I had a new PET scan today and will have a CT cardiac angiogram Thursday, then discuss again with oncologist/surgeon.

                  So after your tumor shrank and your PET was negative you have been NED since 2014?

                  And thanks for the 7.5 year data on Checkpoint 067
                  I wonder if the data is stratified between complete responders, partial responders and non-responders? That would be helpful to know.

                  I am glad you are doing so well.

                  Gigi
                  Participant
                    Dear Mark

                    Thank you. You are raising great points. It is helpful to understand that you did not opt for surgery and continue to have clear scans. I wish I knew I would be in that group!

                    My oncologist is a melanoma specialist and is stating it is my decision as he can support either path. He has shared that:
                    1. Immunotherapy may stop working or I will no longer be able to tolerate it.
                    2. He shared that with immunotherapy OS is 50% at 5 years, with surgery it could be as high as 90%. But as you know, nobody can tell you your specific odds.
                    3. Tumor board decided biopsy would be unhelpful in terms of helping the surgery decision whatever the result – if it showed tumor the rationale for surgery remains, if it doesn’t show tumor it could just mean biopsy was in the wrong place.
                    4. Tumor board think I would do well with surgery because of my overall health and fitness, the fact that I have a single distant metastasis (15 years after first melanoma) and that because of the left atrium/pulmonary vein issue, it needs to be addressed as it is a stroke risk (even though I have no symptoms)

                    As I write this I feel like I am talking myself in to surgery! It is such a tough decision.

                    Glad you are staying well Mark and thanks again

                Viewing 1 reply thread