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.

President Carter’s melanoma diagnosis

Forums Cutaneous Melanoma Community President Carter’s melanoma diagnosis

  • Post
Viewing 5 reply threads
  • Replies
      mrsaxde
      Participant

        One quick note: When I wrote this, I was working from President Carter's comments this morning, and I assumed he would get Yervoy. I guess a former president can jump the line and go right to Keytruda! lol

          ed williams
          Participant

            Thanks for posting about this Bill. I have heard that some Oncologist are going right to Pd-1 drugs even though it is not the standard of care. Maybe this event will push the FDA and Insurance companies in the right direction. It was interesting listening to the different news feeds asking their medical experts to talk about Melanoma and what President Carter's treatments will be like. Many had no clue about side effects and what to expect from Keytruda. ED

            mrsaxde
            Participant

              My understanding is that the FDA is going to rule on making the PD-1's first line treatment by sometime this fall, if not sooner.

              I'd say it's a no brainer. Dr. Sharfman told me last fall that the PD-1 drugs held the most promise, but they were restricted to using Yervoy first.

              My experience with Yervoy was mixed. It apparently stopped a lesion in my lung, but after I finished treatment, several new spots appeared under my skin near the original excision. So my doctor started me on Keytruda. Within two weeks after the first treatment, those spots were noticeably softer and thinner. I've had two treatments now, and I'm hopiing for more good news when I have my next scan, sometime next month.

              The sooner Keytruda and Opdivo are approved as first line treatments, the better!

              mrsaxde
              Participant

                My understanding is that the FDA is going to rule on making the PD-1's first line treatment by sometime this fall, if not sooner.

                I'd say it's a no brainer. Dr. Sharfman told me last fall that the PD-1 drugs held the most promise, but they were restricted to using Yervoy first.

                My experience with Yervoy was mixed. It apparently stopped a lesion in my lung, but after I finished treatment, several new spots appeared under my skin near the original excision. So my doctor started me on Keytruda. Within two weeks after the first treatment, those spots were noticeably softer and thinner. I've had two treatments now, and I'm hopiing for more good news when I have my next scan, sometime next month.

                The sooner Keytruda and Opdivo are approved as first line treatments, the better!

                mrsaxde
                Participant

                  My understanding is that the FDA is going to rule on making the PD-1's first line treatment by sometime this fall, if not sooner.

                  I'd say it's a no brainer. Dr. Sharfman told me last fall that the PD-1 drugs held the most promise, but they were restricted to using Yervoy first.

                  My experience with Yervoy was mixed. It apparently stopped a lesion in my lung, but after I finished treatment, several new spots appeared under my skin near the original excision. So my doctor started me on Keytruda. Within two weeks after the first treatment, those spots were noticeably softer and thinner. I've had two treatments now, and I'm hopiing for more good news when I have my next scan, sometime next month.

                  The sooner Keytruda and Opdivo are approved as first line treatments, the better!

                  ed williams
                  Participant

                    Thanks for posting about this Bill. I have heard that some Oncologist are going right to Pd-1 drugs even though it is not the standard of care. Maybe this event will push the FDA and Insurance companies in the right direction. It was interesting listening to the different news feeds asking their medical experts to talk about Melanoma and what President Carter's treatments will be like. Many had no clue about side effects and what to expect from Keytruda. ED

                    ed williams
                    Participant

                      Thanks for posting about this Bill. I have heard that some Oncologist are going right to Pd-1 drugs even though it is not the standard of care. Maybe this event will push the FDA and Insurance companies in the right direction. It was interesting listening to the different news feeds asking their medical experts to talk about Melanoma and what President Carter's treatments will be like. Many had no clue about side effects and what to expect from Keytruda. ED

                      Hikeratheart
                      Participant

                        Thank you! I have felt sad since hearing the news about President Carter.  Thank you for educating the public            …on this illness.  We have much to learn!

                        Hikeratheart
                        Participant

                          Thank you! I have felt sad since hearing the news about President Carter.  Thank you for educating the public            …on this illness.  We have much to learn!

                          mrsaxde
                          Participant

                            I spent almost 30 years of my life as a public school teacher. I guess I'll always be an educator! 🙂

                            mrsaxde
                            Participant

                              I spent almost 30 years of my life as a public school teacher. I guess I'll always be an educator! 🙂

                              mrsaxde
                              Participant

                                I spent almost 30 years of my life as a public school teacher. I guess I'll always be an educator! 🙂

                                Hikeratheart
                                Participant

                                  Thank you! I have felt sad since hearing the news about President Carter.  Thank you for educating the public            …on this illness.  We have much to learn!

                                  mary1233
                                  Participant

                                    He could be negative for the Braf mutation.

                                    mary1233
                                    Participant

                                      He could be negative for the Braf mutation.

                                      dfeng
                                      Participant

                                        What makes it different?

                                        dfeng
                                        Participant

                                          What makes it different?

                                          dfeng
                                          Participant

                                            What makes it different?

                                            mrsaxde
                                            Participant

                                              Being BRAF positive would be more of a reason to jump right to Keytruda, I would think. The PD-1's are also BRAF inhibitors. I'm BRAF negative and I went through Yervoy first.

                                              mrsaxde
                                              Participant

                                                Being BRAF positive would be more of a reason to jump right to Keytruda, I would think. The PD-1's are also BRAF inhibitors. I'm BRAF negative and I went through Yervoy first.

                                                Bubbles
                                                Participant

                                                  Mr. Saxde,

                                                  I'm not sure where you are getting your information, but anti-PD1 (no matter if you are talking nivo/opdivo, pembro/keytruda or the one still in trials) are NOT BRAF inhihitors. In fact, multiple studies show that folks respond to anti-PD1 in the same proportions regardless of BRAF status.  There are many articles on my blog demonstrating the above. Best, Celeste

                                                  Bubbles
                                                  Participant

                                                    Mr. Saxde,

                                                    I'm not sure where you are getting your information, but anti-PD1 (no matter if you are talking nivo/opdivo, pembro/keytruda or the one still in trials) are NOT BRAF inhihitors. In fact, multiple studies show that folks respond to anti-PD1 in the same proportions regardless of BRAF status.  There are many articles on my blog demonstrating the above. Best, Celeste

                                                    Squash
                                                    Participant

                                                      On responses to the new drugs do nodular and amelanotic melanomas respond as well as cutaneous melanoma to these new therapies?

                                                       

                                                       

                                                      Squash
                                                      Participant

                                                        On responses to the new drugs do nodular and amelanotic melanomas respond as well as cutaneous melanoma to these new therapies?

                                                         

                                                         

                                                        Squash
                                                        Participant

                                                          On responses to the new drugs do nodular and amelanotic melanomas respond as well as cutaneous melanoma to these new therapies?

                                                           

                                                           

                                                          Bubbles
                                                          Participant

                                                            Mr. Saxde,

                                                            I'm not sure where you are getting your information, but anti-PD1 (no matter if you are talking nivo/opdivo, pembro/keytruda or the one still in trials) are NOT BRAF inhihitors. In fact, multiple studies show that folks respond to anti-PD1 in the same proportions regardless of BRAF status.  There are many articles on my blog demonstrating the above. Best, Celeste

                                                            mrsaxde
                                                            Participant

                                                              Being BRAF positive would be more of a reason to jump right to Keytruda, I would think. The PD-1's are also BRAF inhibitors. I'm BRAF negative and I went through Yervoy first.

                                                              mary1233
                                                              Participant

                                                                He could be negative for the Braf mutation.

                                                              mrsaxde
                                                              Participant

                                                                One quick note: When I wrote this, I was working from President Carter's comments this morning, and I assumed he would get Yervoy. I guess a former president can jump the line and go right to Keytruda! lol

                                                                mrsaxde
                                                                Participant

                                                                  One quick note: When I wrote this, I was working from President Carter's comments this morning, and I assumed he would get Yervoy. I guess a former president can jump the line and go right to Keytruda! lol

                                                                  stars
                                                                  Participant

                                                                    Good on you, mrsaxde.  We've had a few sportsmen (football players etc) in Australia get melanoma, and its been downplayed in the media as a 'brush with skin cancer'. One doc came out to say same as you, that melanoma is never just a 'brush with skin cancer' or 'just' skin cancer and the media should never use this kind of language or it will give people a false sense of security about just how serious it can be.

                                                                    stars
                                                                    Participant

                                                                      Good on you, mrsaxde.  We've had a few sportsmen (football players etc) in Australia get melanoma, and its been downplayed in the media as a 'brush with skin cancer'. One doc came out to say same as you, that melanoma is never just a 'brush with skin cancer' or 'just' skin cancer and the media should never use this kind of language or it will give people a false sense of security about just how serious it can be.

                                                                      stars
                                                                      Participant

                                                                        Good on you, mrsaxde.  We've had a few sportsmen (football players etc) in Australia get melanoma, and its been downplayed in the media as a 'brush with skin cancer'. One doc came out to say same as you, that melanoma is never just a 'brush with skin cancer' or 'just' skin cancer and the media should never use this kind of language or it will give people a false sense of security about just how serious it can be.

                                                                    Viewing 5 reply threads
                                                                    • You must be logged in to reply to this topic.
                                                                    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