MRF-Logo2019-Horizontal-RGB
Anti PD 1 has its flaws
REGISTER
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.

Anti PD 1 has its flaws

› Forums › General Melanoma Community › Anti PD 1 has its flaws

  • Post
    • September 21, 2012 at 8:05 am
    LynnLuc
    Participant

      My friend has been doing outstanding on the BMS Anti PD 1 trial since March 2011. Everything has completely shrunk to near nothing or vanished completely. She had one area that has had stubborn melanoma…it is a spot by her stomach in the fat lining…it is wrapped around the main artery so they can not do surgery. Through the course of this trial it has not shrunk or grown….until now. She had her scan results today. The melanoma has grown by 20% and a new met was found in her spleen.

      She was taken off the trial and now referred for Ipi.

      My friend has been doing outstanding on the BMS Anti PD 1 trial since March 2011. Everything has completely shrunk to near nothing or vanished completely. She had one area that has had stubborn melanoma…it is a spot by her stomach in the fat lining…it is wrapped around the main artery so they can not do surgery. Through the course of this trial it has not shrunk or grown….until now. She had her scan results today. The melanoma has grown by 20% and a new met was found in her spleen.

      She was taken off the trial and now referred for Ipi.

      I have been in the trial since fall 2010 and have been NED for 2  1/2 years.

      Just wanted to let you all know Anti PD 1 has its flaws….I am kind of upset about this. I hate for my friend to go thru IPI and the side effects. She had previous surgery and had  1/2 of large intestines and all of ascending is gone and 1/2 of transverse…that is 3/4 of large intestines removed. I don't know how she is going to handle the colitis or the skin rashes…ugh.-  Lynn
       

    Viewing 5 reply threads
    • Replies
        • September 21, 2012 at 8:48 pm
        awillett1991
        Participant
          Lynn,

          Sorry to hear about your friend. Although the results are exciting there is so much more to be learned when they expand to phase 3 clinical trials and a larger group of patients.

          There is still a lot they dont know about Zel and ipi, and they’ve been out a year. Still though, I feel blessed that these advances are taking place now so I can benefit. My Dad never had the chance. He died a month before I was diagnosed.

          Glad you are doing well.

          Amy

          • September 21, 2012 at 8:48 pm
          awillett1991
          Participant
            Lynn,

            Sorry to hear about your friend. Although the results are exciting there is so much more to be learned when they expand to phase 3 clinical trials and a larger group of patients.

            There is still a lot they dont know about Zel and ipi, and they’ve been out a year. Still though, I feel blessed that these advances are taking place now so I can benefit. My Dad never had the chance. He died a month before I was diagnosed.

            Glad you are doing well.

            Amy

            • September 21, 2012 at 8:48 pm
            awillett1991
            Participant
              Lynn,

              Sorry to hear about your friend. Although the results are exciting there is so much more to be learned when they expand to phase 3 clinical trials and a larger group of patients.

              There is still a lot they dont know about Zel and ipi, and they’ve been out a year. Still though, I feel blessed that these advances are taking place now so I can benefit. My Dad never had the chance. He died a month before I was diagnosed.

              Glad you are doing well.

              Amy

                • September 22, 2012 at 2:26 pm
                Laurie from maine
                Participant
                  Lynn
                  I am so sorry. I can hear your pain and frustration for your friend. I have appreciated all your positive posts about pd-1 I also thank you for this post we all need to know pd-1 is not perfect and we all need to be realistic Thank you for posting. I will say strong prayers for your friend
                  Take care
                  Laurie from Maine
                  • September 22, 2012 at 2:26 pm
                  Laurie from maine
                  Participant
                    Lynn
                    I am so sorry. I can hear your pain and frustration for your friend. I have appreciated all your positive posts about pd-1 I also thank you for this post we all need to know pd-1 is not perfect and we all need to be realistic Thank you for posting. I will say strong prayers for your friend
                    Take care
                    Laurie from Maine
                    • September 22, 2012 at 2:26 pm
                    Laurie from maine
                    Participant
                      Lynn
                      I am so sorry. I can hear your pain and frustration for your friend. I have appreciated all your positive posts about pd-1 I also thank you for this post we all need to know pd-1 is not perfect and we all need to be realistic Thank you for posting. I will say strong prayers for your friend
                      Take care
                      Laurie from Maine
                    • September 22, 2012 at 2:57 pm
                    killmel
                    Participant

                      Hi Lynn,

                       

                      I have a friend on PD1 also. So farso good  with her.

                      You are very knowledgeable and informed about PD1. This is the first time I ever heard that someone was responding then progressed.

                      With your experience with PD1, do you know of any other people progressing on PD1  after they had initial seemed to be responders on PD1???

                      Thanks in advance for your reply to  my question.

                      MaryBeth

                      • September 22, 2012 at 2:57 pm
                      killmel
                      Participant

                        Hi Lynn,

                         

                        I have a friend on PD1 also. So farso good  with her.

                        You are very knowledgeable and informed about PD1. This is the first time I ever heard that someone was responding then progressed.

                        With your experience with PD1, do you know of any other people progressing on PD1  after they had initial seemed to be responders on PD1???

                        Thanks in advance for your reply to  my question.

                        MaryBeth

                        • September 22, 2012 at 2:57 pm
                        killmel
                        Participant

                          Hi Lynn,

                           

                          I have a friend on PD1 also. So farso good  with her.

                          You are very knowledgeable and informed about PD1. This is the first time I ever heard that someone was responding then progressed.

                          With your experience with PD1, do you know of any other people progressing on PD1  after they had initial seemed to be responders on PD1???

                          Thanks in advance for your reply to  my question.

                          MaryBeth

                      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