MRF-Logo2019-Horizontal-RGB
Kicked off the Ippi trial
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.

Kicked off the Ippi trial

› Forums › General Melanoma Community › Kicked off the Ippi trial

  • Post
    • August 5, 2013 at 8:21 pm
    94z28joe
    Participant

      went to the doctor to follow up after surgery to remove local reoccurance and was told I'm off the ippi vs interferon trial. I thought I would be able to stay on but, was told it wasnt working so I am being taken off the trial. 🙁 They have me scheduled for scans on thursday to see where we go from here.

      went to the doctor to follow up after surgery to remove local reoccurance and was told I'm off the ippi vs interferon trial. I thought I would be able to stay on but, was told it wasnt working so I am being taken off the trial. 🙁 They have me scheduled for scans on thursday to see where we go from here.

    Viewing 6 reply threads
    • Replies
        • August 5, 2013 at 8:45 pm
        POW
        Participant

          People toss around phrases like "kicked off the trial" like you are being denied an effective treatment. I think that is selling yourself and the medical researchers short. It appears from your previous posts that you have been on the ipi/interferon trial since what– January? February? And here we are in August. So the ipi may well have worked for you for 8 months. Now it's not working–you have a new tumor. Now that you know the ipi stopped working–or at least is losing its effectiveness–would you want to keep taking it? Would you be happy if you had a legal contract where you HAD to stay on the ipi trial even if it stopped working for you? Of course not. 

          Yes, it was working (or probably working). Now it's losing its effectiveness. So it's time for you to be free to try something else. There are just recently beginning to be some clinical trials for Stage III melanoma. If you are still Stage III and still don't like the "wait and see" option, you might look into the MAGE-3A vaccine trials, for example.

          I understand that you are disappointed that you have a recurrance, but try not to think "kicked off". The ipi is already in your body and has already stimulated your immune system. Now you get to try the next promising new treatment. OK?

          • August 5, 2013 at 8:45 pm
          POW
          Participant

            People toss around phrases like "kicked off the trial" like you are being denied an effective treatment. I think that is selling yourself and the medical researchers short. It appears from your previous posts that you have been on the ipi/interferon trial since what– January? February? And here we are in August. So the ipi may well have worked for you for 8 months. Now it's not working–you have a new tumor. Now that you know the ipi stopped working–or at least is losing its effectiveness–would you want to keep taking it? Would you be happy if you had a legal contract where you HAD to stay on the ipi trial even if it stopped working for you? Of course not. 

            Yes, it was working (or probably working). Now it's losing its effectiveness. So it's time for you to be free to try something else. There are just recently beginning to be some clinical trials for Stage III melanoma. If you are still Stage III and still don't like the "wait and see" option, you might look into the MAGE-3A vaccine trials, for example.

            I understand that you are disappointed that you have a recurrance, but try not to think "kicked off". The ipi is already in your body and has already stimulated your immune system. Now you get to try the next promising new treatment. OK?

            • August 5, 2013 at 8:45 pm
            POW
            Participant

              People toss around phrases like "kicked off the trial" like you are being denied an effective treatment. I think that is selling yourself and the medical researchers short. It appears from your previous posts that you have been on the ipi/interferon trial since what– January? February? And here we are in August. So the ipi may well have worked for you for 8 months. Now it's not working–you have a new tumor. Now that you know the ipi stopped working–or at least is losing its effectiveness–would you want to keep taking it? Would you be happy if you had a legal contract where you HAD to stay on the ipi trial even if it stopped working for you? Of course not. 

              Yes, it was working (or probably working). Now it's losing its effectiveness. So it's time for you to be free to try something else. There are just recently beginning to be some clinical trials for Stage III melanoma. If you are still Stage III and still don't like the "wait and see" option, you might look into the MAGE-3A vaccine trials, for example.

              I understand that you are disappointed that you have a recurrance, but try not to think "kicked off". The ipi is already in your body and has already stimulated your immune system. Now you get to try the next promising new treatment. OK?

              • August 5, 2013 at 9:33 pm
              94z28joe
              Participant

                very good points. I did feel like it was working though as so far fingers cross is hasnt spread i had just had a what i thought was a new melanoma which they said was a local recuurance, but so far nothing internal which makes me thing it was keeping my insides pretty well policed. But yes after scans on thursday we will see where I go from here I just dont like the wait and see method. I'd rather be proactive then reactive.

                • August 5, 2013 at 10:40 pm
                aldakota22
                Participant

                  Earlier poster says it so well.You are right when you say you do not want to sit and wait.Proactive is the way to go.Prayers sent your way that your next approach will be the one thats works for a very a lifetime.Thats what we all strive for on this site.Keep us updated.  Beat the Beast.      Al

                  • August 5, 2013 at 10:40 pm
                  aldakota22
                  Participant

                    Earlier poster says it so well.You are right when you say you do not want to sit and wait.Proactive is the way to go.Prayers sent your way that your next approach will be the one thats works for a very a lifetime.Thats what we all strive for on this site.Keep us updated.  Beat the Beast.      Al

                    • August 5, 2013 at 10:40 pm
                    aldakota22
                    Participant

                      Earlier poster says it so well.You are right when you say you do not want to sit and wait.Proactive is the way to go.Prayers sent your way that your next approach will be the one thats works for a very a lifetime.Thats what we all strive for on this site.Keep us updated.  Beat the Beast.      Al

                      • August 5, 2013 at 9:33 pm
                      94z28joe
                      Participant

                        very good points. I did feel like it was working though as so far fingers cross is hasnt spread i had just had a what i thought was a new melanoma which they said was a local recuurance, but so far nothing internal which makes me thing it was keeping my insides pretty well policed. But yes after scans on thursday we will see where I go from here I just dont like the wait and see method. I'd rather be proactive then reactive.

                        • August 5, 2013 at 9:33 pm
                        94z28joe
                        Participant

                          very good points. I did feel like it was working though as so far fingers cross is hasnt spread i had just had a what i thought was a new melanoma which they said was a local recuurance, but so far nothing internal which makes me thing it was keeping my insides pretty well policed. But yes after scans on thursday we will see where I go from here I just dont like the wait and see method. I'd rather be proactive then reactive.

                      Viewing 6 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.