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.

Ipi-Nivo and 1,000 Days

Forums General Melanoma Community Ipi-Nivo and 1,000 Days

  • Post
    Mat
    Participant

      Well, it's been more than a thousand days (3 years) since my stage IV diagnosis with a heavy tumor burden.  My diagnosis came somewhat out of the blue (I didn't recognize the few symptoms I had) after being stage I ten years earlier.  Trust me, at diagnosis, no medical professional said to me–"don't worry, you have at least 3 great years left."  I've had (and may still have) multiple liver tumors and I've had 3 brain tumors.  If you read this forum and other sources, you know that those can be signs of a poor prognosis.  

      Who knows what the future holds?  I take it one day at a time (or try to).  On this day, I'm happy to say that I have another set of stable scans under my belt since starting ipi-nivo in January.  I feel very fortunate to be where I'm at.  I don't assume for a minute that I have this thing beat.  Rather, I assume the opposite–my resilient melanoma cells will continue their Darwinian battle for survival.  I only hope that by the grace of our maker and highly competent medical professionals (together with some randomness and luck), I'll be able to continue my personal fight for survival and have the opportunity to continue to raise my kids, be with my wife and family, work and otherwise live life and pursue well-being.

      Josh, Brian and Eva (and others, including Paul and Jamie), I've read your recent posts.  I feel your anxiety and frustration.  As you know, while not everyone has success stories, there are many folks that do (including those who have had success following multiple challenges).  I hope that you're able to move past your present challenges as quickly (and with the least amount of difficulty) as possible and that your stories are success stories.

      Lastly, I've seen a few posts asking about whether ipi-nivo can work if you've otherwise failed ipi and/or PD-1.  While there is no clinical trial data on this, the answer is "yes".  (I failed both individually.)  I don't know if will work long-term, but I can tell you that it can work for at least 7 months.  I hope to be able to report back that it will continue to work for another 1,000 days–one day at a time.

    Viewing 35 reply threads
    • Replies
        dvd
        Participant

          Interesting perspective, Mat – it got me counting. We seem to be on a similar trajectory, my Stage 1 diagnosis was in 2006 and my advanced Stage 4 diagnosis was late 2013. I received my first combo (nivo/ipi) Jan. 7, 2014 – 970 days ago, responded quickly and completely, and remain NED.

          I don't usually count the days, but there isn't a day that goes by that I don't think, at some point, what things would have been like if I hadn't gotten into that clinical trial. Brings to mind that old saying:

          Not all things that count can be counted…

          DVD

          dvd
          Participant

            Interesting perspective, Mat – it got me counting. We seem to be on a similar trajectory, my Stage 1 diagnosis was in 2006 and my advanced Stage 4 diagnosis was late 2013. I received my first combo (nivo/ipi) Jan. 7, 2014 – 970 days ago, responded quickly and completely, and remain NED.

            I don't usually count the days, but there isn't a day that goes by that I don't think, at some point, what things would have been like if I hadn't gotten into that clinical trial. Brings to mind that old saying:

            Not all things that count can be counted…

            DVD

            dvd
            Participant

              Interesting perspective, Mat – it got me counting. We seem to be on a similar trajectory, my Stage 1 diagnosis was in 2006 and my advanced Stage 4 diagnosis was late 2013. I received my first combo (nivo/ipi) Jan. 7, 2014 – 970 days ago, responded quickly and completely, and remain NED.

              I don't usually count the days, but there isn't a day that goes by that I don't think, at some point, what things would have been like if I hadn't gotten into that clinical trial. Brings to mind that old saying:

              Not all things that count can be counted…

              DVD

              Bubbles
              Participant

                Amen, Mat.  So very well put.  None of us here have guarantees for anything.  No guarantee that the treatment we try will be successful.  No guarantee that a positive response will result in a cure.  But it is clear that if we focus on that incredibly sucky part of our lives – melanoma will steal that much more from us!!!  I don't have all the answers and many days feel as though I have none at all.  However, the wonderful folks like you on this forum give me strength and renew my spirit daily.  Even through our dismay, and hurt, and fears…I know all of you are there for me and for each other.

                Rev Carol Taylor, The amazing QUEEN of melanoma, Stage 3b from 2008 until September of 2015 when she became Stage IV which she still battles today, has long advocated for all of us on her blog:  http://letsgivethanks.blogspot.com/ (Attitude of Gratitude) and through the Melanoma Prayer Center she developed.  Click on any of her posts….and you will feel much better!!!  Recently, she posted something on another site that went something like this:

                Happy Thursday!!!  Yep!  Happy Thursday.  A day we are blessed to have, to share, to live in the midst of those we hold dear.  It is a day we shall never see again.  Enjoy!

                Told you she is the Queen!  Blessings and hope to you all.  And thanks to you and for you, Mat. – celeste

                Bubbles
                Participant

                  Amen, Mat.  So very well put.  None of us here have guarantees for anything.  No guarantee that the treatment we try will be successful.  No guarantee that a positive response will result in a cure.  But it is clear that if we focus on that incredibly sucky part of our lives – melanoma will steal that much more from us!!!  I don't have all the answers and many days feel as though I have none at all.  However, the wonderful folks like you on this forum give me strength and renew my spirit daily.  Even through our dismay, and hurt, and fears…I know all of you are there for me and for each other.

                  Rev Carol Taylor, The amazing QUEEN of melanoma, Stage 3b from 2008 until September of 2015 when she became Stage IV which she still battles today, has long advocated for all of us on her blog:  http://letsgivethanks.blogspot.com/ (Attitude of Gratitude) and through the Melanoma Prayer Center she developed.  Click on any of her posts….and you will feel much better!!!  Recently, she posted something on another site that went something like this:

                  Happy Thursday!!!  Yep!  Happy Thursday.  A day we are blessed to have, to share, to live in the midst of those we hold dear.  It is a day we shall never see again.  Enjoy!

                  Told you she is the Queen!  Blessings and hope to you all.  And thanks to you and for you, Mat. – celeste

                  Bubbles
                  Participant

                    Amen, Mat.  So very well put.  None of us here have guarantees for anything.  No guarantee that the treatment we try will be successful.  No guarantee that a positive response will result in a cure.  But it is clear that if we focus on that incredibly sucky part of our lives – melanoma will steal that much more from us!!!  I don't have all the answers and many days feel as though I have none at all.  However, the wonderful folks like you on this forum give me strength and renew my spirit daily.  Even through our dismay, and hurt, and fears…I know all of you are there for me and for each other.

                    Rev Carol Taylor, The amazing QUEEN of melanoma, Stage 3b from 2008 until September of 2015 when she became Stage IV which she still battles today, has long advocated for all of us on her blog:  http://letsgivethanks.blogspot.com/ (Attitude of Gratitude) and through the Melanoma Prayer Center she developed.  Click on any of her posts….and you will feel much better!!!  Recently, she posted something on another site that went something like this:

                    Happy Thursday!!!  Yep!  Happy Thursday.  A day we are blessed to have, to share, to live in the midst of those we hold dear.  It is a day we shall never see again.  Enjoy!

                    Told you she is the Queen!  Blessings and hope to you all.  And thanks to you and for you, Mat. – celeste

                    jamieth29
                    Participant
                      Great to hear Matt!! I know all of us want to survive but I would thank God to be able to see my kids graduate High school. I’m glad the combo is working for you. Next step 5000…like you said one day at a time.
                      jamieth29
                      Participant
                        Great to hear Matt!! I know all of us want to survive but I would thank God to be able to see my kids graduate High school. I’m glad the combo is working for you. Next step 5000…like you said one day at a time.
                        jamieth29
                        Participant
                          Great to hear Matt!! I know all of us want to survive but I would thank God to be able to see my kids graduate High school. I’m glad the combo is working for you. Next step 5000…like you said one day at a time.
                          BrianP
                          Participant

                            Thanks for posting Mat and thanks for your perspective and example.  Congrats on the stable scans.  One of my favorite lines I stole from TJ Sharpe is "Stable is a tie and a tie is a win in this game!" 

                             

                            BrianP
                            Participant

                              Thanks for posting Mat and thanks for your perspective and example.  Congrats on the stable scans.  One of my favorite lines I stole from TJ Sharpe is "Stable is a tie and a tie is a win in this game!" 

                               

                              BrianP
                              Participant

                                Thanks for posting Mat and thanks for your perspective and example.  Congrats on the stable scans.  One of my favorite lines I stole from TJ Sharpe is "Stable is a tie and a tie is a win in this game!" 

                                 

                                JoshF
                                Participant

                                  Mat-

                                  Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                  I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                  Josh

                                  JoshF
                                  Participant

                                    Mat-

                                    Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                    I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                    Josh

                                    JoshF
                                    Participant

                                      Mat-

                                      Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                      I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                      Josh

                                      JoshF
                                      Participant

                                        Mat-

                                        Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                        I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                        Josh

                                        JoshF
                                        Participant

                                          Mat-

                                          Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                          I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                          Josh

                                          JoshF
                                          Participant

                                            Mat-

                                            Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                            I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                            Josh

                                            JoshF
                                            Participant

                                              Mat-

                                              Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                              I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                              Josh

                                              JoshF
                                              Participant

                                                Mat-

                                                Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                                I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                                Josh

                                                JoshF
                                                Participant

                                                  Mat-

                                                  Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                                  I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                                  Josh

                                                  JoshF
                                                  Participant

                                                    Mat-

                                                    Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                                    I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                                    Josh

                                                    JoshF
                                                    Participant

                                                      Mat-

                                                      Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                                      I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                                      Josh

                                                      JoshF
                                                      Participant

                                                        Mat-

                                                        Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!

                                                        I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!

                                                        Josh

                                                        JoshF
                                                        Participant

                                                          Sorry for multiple posts…not my fault ๐Ÿ™‚

                                                          JoshF
                                                          Participant

                                                            Sorry for multiple posts…not my fault ๐Ÿ™‚

                                                            JoshF
                                                            Participant

                                                              Sorry for multiple posts…not my fault ๐Ÿ™‚

                                                              WithinMySkin
                                                              Participant
                                                                Awesome, Mat! Thank you so much for sharing your good news – it’s always so uplifting to hear others who are doing well after a long battle. Here’s to another 1000 days!!
                                                                WithinMySkin
                                                                Participant
                                                                  Awesome, Mat! Thank you so much for sharing your good news – it’s always so uplifting to hear others who are doing well after a long battle. Here’s to another 1000 days!!
                                                                  WithinMySkin
                                                                  Participant
                                                                    Awesome, Mat! Thank you so much for sharing your good news – it’s always so uplifting to hear others who are doing well after a long battle. Here’s to another 1000 days!!
                                                                    Gwen in Maine
                                                                    Participant

                                                                      Thanks so much for such an inspirational post, Mat. I just had my second ipi/nivo treatment after apparently getting nothing from ipi and PD-1 and am hoping for some kind of positive response. I'll even take stability at this point. One day at a time, right?

                                                                      Gwen

                                                                        JoshF
                                                                        Participant

                                                                          Keep us posted Gwen!!!!

                                                                          Gwen in Maine
                                                                          Participant

                                                                            Thanks, Josh. You hang in there. I think of you often. Glad to hear they're jumping right in to irradiate those new mets and that you're still on course for your next treatment.

                                                                            Gwen in Maine
                                                                            Participant

                                                                              Thanks, Josh. You hang in there. I think of you often. Glad to hear they're jumping right in to irradiate those new mets and that you're still on course for your next treatment.

                                                                              Gwen in Maine
                                                                              Participant

                                                                                Thanks, Josh. You hang in there. I think of you often. Glad to hear they're jumping right in to irradiate those new mets and that you're still on course for your next treatment.

                                                                                JoshF
                                                                                Participant

                                                                                  Keep us posted Gwen!!!!

                                                                                  JoshF
                                                                                  Participant

                                                                                    Keep us posted Gwen!!!!

                                                                                  Gwen in Maine
                                                                                  Participant

                                                                                    Thanks so much for such an inspirational post, Mat. I just had my second ipi/nivo treatment after apparently getting nothing from ipi and PD-1 and am hoping for some kind of positive response. I'll even take stability at this point. One day at a time, right?

                                                                                    Gwen

                                                                                    Gwen in Maine
                                                                                    Participant

                                                                                      Thanks so much for such an inspirational post, Mat. I just had my second ipi/nivo treatment after apparently getting nothing from ipi and PD-1 and am hoping for some kind of positive response. I'll even take stability at this point. One day at a time, right?

                                                                                      Gwen

                                                                                      Maria C
                                                                                      Participant

                                                                                        Mat, I love that you have found 7 months of stability with the ipi-nivo combo and are on another 1,000-day march to beating this thing. Thank you for sharing!

                                                                                        Maria C
                                                                                        Participant

                                                                                          Mat, I love that you have found 7 months of stability with the ipi-nivo combo and are on another 1,000-day march to beating this thing. Thank you for sharing!

                                                                                          Maria C
                                                                                          Participant

                                                                                            Mat, I love that you have found 7 months of stability with the ipi-nivo combo and are on another 1,000-day march to beating this thing. Thank you for sharing!

                                                                                        Viewing 35 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 byย MRF posting policies.