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.

O_O

Forum Replies Created

Viewing 8 reply threads
  • Replies
      O_O
      Participant

        Hi, yes, 27, found in scalp and a lymph node in my neck about a year ago (stage III). 

         

        Had three surgeries this year and it came back each time. It looks like it might've come back again, but it's not certain yet.

         

        Did adjuvant Ipilimumab trial after second surgery, it came back on the next scan, did a third surgery, and had my first maintenance dose of Ipi last month, hoping this time it'll kick in.

         

        Surgeries went well, no complications other than mild (barely noticable) nerve damage affecting my lower lip. The spot where they removed my scalp is rather gruesome, and Dr. said hair transplant probably wouldn't take because they went quite deep. So I wear my hair long these days (looks like someone took a bite off my head or something). 

        Ipi side effects have been minor. Some fatigue, but went away within a month or two of the last infusion.

         

        Good luck, and keep an eye open for new symptoms. The earlier you catch it the better.

        O_O
        Participant

          Hi, yes, 27, found in scalp and a lymph node in my neck about a year ago (stage III). 

           

          Had three surgeries this year and it came back each time. It looks like it might've come back again, but it's not certain yet.

           

          Did adjuvant Ipilimumab trial after second surgery, it came back on the next scan, did a third surgery, and had my first maintenance dose of Ipi last month, hoping this time it'll kick in.

           

          Surgeries went well, no complications other than mild (barely noticable) nerve damage affecting my lower lip. The spot where they removed my scalp is rather gruesome, and Dr. said hair transplant probably wouldn't take because they went quite deep. So I wear my hair long these days (looks like someone took a bite off my head or something). 

          Ipi side effects have been minor. Some fatigue, but went away within a month or two of the last infusion.

           

          Good luck, and keep an eye open for new symptoms. The earlier you catch it the better.

          O_O
          Participant

            Hi, yes, 27, found in scalp and a lymph node in my neck about a year ago (stage III). 

             

            Had three surgeries this year and it came back each time. It looks like it might've come back again, but it's not certain yet.

             

            Did adjuvant Ipilimumab trial after second surgery, it came back on the next scan, did a third surgery, and had my first maintenance dose of Ipi last month, hoping this time it'll kick in.

             

            Surgeries went well, no complications other than mild (barely noticable) nerve damage affecting my lower lip. The spot where they removed my scalp is rather gruesome, and Dr. said hair transplant probably wouldn't take because they went quite deep. So I wear my hair long these days (looks like someone took a bite off my head or something). 

            Ipi side effects have been minor. Some fatigue, but went away within a month or two of the last infusion.

             

            Good luck, and keep an eye open for new symptoms. The earlier you catch it the better.

            O_O
            Participant

              Yervoy's a walk in the park compared to any cancer treatment out there. And if you respond you have a chance of killing this thing for good. Go for it!

              O_O
              Participant

                Yervoy's a walk in the park compared to any cancer treatment out there. And if you respond you have a chance of killing this thing for good. Go for it!

                O_O
                Participant

                  Yervoy's a walk in the park compared to any cancer treatment out there. And if you respond you have a chance of killing this thing for good. Go for it!

                  O_O
                  Participant

                    Google "abscopal effect". Sometimes blasting tumors causes your immune system to go "hey, what's all this stuff floating around?" and it will start attacking the cancer.

                    It's rare, but there's been a few studies that have shown that IPI potentiates this even further. This is probably what your docs are aiming for.

                    O_O
                    Participant

                      Google "abscopal effect". Sometimes blasting tumors causes your immune system to go "hey, what's all this stuff floating around?" and it will start attacking the cancer.

                      It's rare, but there's been a few studies that have shown that IPI potentiates this even further. This is probably what your docs are aiming for.

                      O_O
                      Participant

                        Google "abscopal effect". Sometimes blasting tumors causes your immune system to go "hey, what's all this stuff floating around?" and it will start attacking the cancer.

                        It's rare, but there's been a few studies that have shown that IPI potentiates this even further. This is probably what your docs are aiming for.

                        O_O
                        Participant

                          Do you keep taking PD-1, or is it a long-lasting effect?

                          O_O
                          Participant

                            Do you keep taking PD-1, or is it a long-lasting effect?

                            O_O
                            Participant

                              Do you keep taking PD-1, or is it a long-lasting effect?

                              O_O
                              Participant

                                Hi mom!

                                O_O
                                Participant

                                  Hi mom!

                                  O_O
                                  Participant

                                    Hi mom!

                                Viewing 8 reply threads
                                About the MRF Patient Forum

                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                Popular Topics