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danny201819
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danny201819

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      • December 27, 2018 at 3:08 am
      danny201819
      Participant

        Hi, Is your melanoma mucosal ? I am diagnosed with vaginal melanoma with mets to groin lymph node. I am going to start in a trial with Ipi/Keytruda and aspriin in 2 weeks. Please keep us posted on your progress. Good luck.

        • February 11, 2019 at 10:36 pm
        danny201819
        Participant

          Firstly I cannot describe in words how thankfull I am to this group and all those who take time to respond to questions like me, so thank you very much. Giving you some background my mom was dx in oct,2018 and she had lymph node metastis at them time with one node measuring 24mm , We starting doing alot of things at home so that we can control somthing before we can get through appointment, insurance approvals to see an oncologist. Her onco repeated the PET ,CT MRI and came back with same results. While we were making decisions to enter a trial ( Ipi.Pembro and Aspirin) which was recommended by the melanoma specialist at UCSF  we were also doing home remedies like juicing etc. so right before starting the trial he ordered another CT and the results showed one lymph node reduced in size from 24mm to 13mm so right before the first infusion he changed the plan to switch to just nivo. I am glad that her disease has not progressed but I am scared everyday and pray everyday that it comes under control with just nivo. Thank you so much for guiding me on the PD-L1 staining and what it means. 

          • February 11, 2019 at 7:46 pm
          danny201819
          Participant

            checked with my doctor and  he said your PD1 percentage was low but he would not switch you to Ipilimumab plus Nivolumab just yet. He'd like to have you continue on the current nivolumab alone and rescan you with a CT of the Chest, Abdomen and Pelvis in 12 weeks and make a decision off of those scans. After those scans, if necessary, then he'd add ipiliumab (Yervoy) to the regimen.

             

            Does this sound a goodplan ? 

             

            • February 11, 2019 at 4:42 pm
            danny201819
            Participant

              Thanks Ed, my mom's melanoma is mucosal and i dont think the doc ever tested the tumour. 

              I am goign to ask for it. 

              • December 24, 2018 at 11:03 pm
              danny201819
              Participant

                Thanks Becky for sharing the hope. Thats what keep me going. I have hunch there are lot more survivors but probably not many on this forum. I am going to start a trial of Keytruda,Ipi and aspirin in two weeks. Surgery is not possible and it would need taking out the bladder and the rectum. I was hoping to see more survival stories. 

                • December 22, 2018 at 8:11 pm
                danny201819
                Participant

                  Bubbles , Looked at your blogpost , what are getting treated for now ?

                  • December 22, 2018 at 7:59 pm
                  danny201819
                  Participant

                    Clara , 

                    Can you please share the cost of the treatment ? 

                     

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