First Scans on Ipi-Nivo

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  • Post
    • April 6, 2016 at 12:53 pm
    Mat
    Participant

      So I had my first scans since I started on the ipi-nivo combo in January.  I received the first 3 combined infusions, but then had diarrhea that required the use of prednisone to get it under control.  Out of an abundance of caution, we paused the fourth combined infusion and I moved into the nivo-only portion of the treatment (had my first nivo-only infusion the same day as my scans).  I'm now 11 weeks into the treatment.  My scans were stable–nothing new and no change in my existing tumor burden (which is considered relatively low–but could always be lower!).  I was hoping for better (and continue to hope for better), but I'll certainly take it.  I feel very fortunate to have the opportunity to even try this treatment (which was only FDA approved shortly before I started).  In the meantime, my kids–who were 4 and 2 months at the time of my Stage IV diagnosis in 2013–will be 7 and 3 in a few weeks.  While I would love to get this melanoma monkey off of my back, I'm grateful for each day.

    Viewing 26 reply threads
    • Replies
        • April 6, 2016 at 2:15 pm
        Bubbles
        Participant

          Hey Mat!!

          You have been through so much!!  Stability is good!  And as early as you are in this go round…I am very hopeful that you WILL see continued improvement!!!  Congrats!! love,c

          • April 6, 2016 at 2:15 pm
          Bubbles
          Participant

            Hey Mat!!

            You have been through so much!!  Stability is good!  And as early as you are in this go round…I am very hopeful that you WILL see continued improvement!!!  Congrats!! love,c

            • April 6, 2016 at 2:15 pm
            Bubbles
            Participant

              Hey Mat!!

              You have been through so much!!  Stability is good!  And as early as you are in this go round…I am very hopeful that you WILL see continued improvement!!!  Congrats!! love,c

              • April 6, 2016 at 4:03 pm
              AshleyS
              Participant

                Hey Mat. It is tough not to want more. There's such a fine line between being grateful and being hopeful. Just to add some hope, I saw improvement 8 months after I started the scan. Maybe your best results are on their way!

                It's such a mixed blessing to have little people throughout all this, isn't it? On one hand, it's "sad." On the other hand, they make all the tests and appointments worthwhile. I was never a meditator before my diagnosis but now I try to do it daily. I guess I more so do vizualizations. Anyway, whenever I'm getting scans, I visualize. I think of my daughter going to kindergarten or giving her valedictorian speech. I see my son playing basketball or letting me straighten his bow tie at prom. Maybe it's silly, but it helps me feel less anxious. Also, I think we as humans know so little about the brain/mind. It can't hurt!

                Keep on, keeping on!

                Ashley

                • April 6, 2016 at 4:03 pm
                AshleyS
                Participant

                  Hey Mat. It is tough not to want more. There's such a fine line between being grateful and being hopeful. Just to add some hope, I saw improvement 8 months after I started the scan. Maybe your best results are on their way!

                  It's such a mixed blessing to have little people throughout all this, isn't it? On one hand, it's "sad." On the other hand, they make all the tests and appointments worthwhile. I was never a meditator before my diagnosis but now I try to do it daily. I guess I more so do vizualizations. Anyway, whenever I'm getting scans, I visualize. I think of my daughter going to kindergarten or giving her valedictorian speech. I see my son playing basketball or letting me straighten his bow tie at prom. Maybe it's silly, but it helps me feel less anxious. Also, I think we as humans know so little about the brain/mind. It can't hurt!

                  Keep on, keeping on!

                  Ashley

                  • April 6, 2016 at 4:03 pm
                  AshleyS
                  Participant

                    Hey Mat. It is tough not to want more. There's such a fine line between being grateful and being hopeful. Just to add some hope, I saw improvement 8 months after I started the scan. Maybe your best results are on their way!

                    It's such a mixed blessing to have little people throughout all this, isn't it? On one hand, it's "sad." On the other hand, they make all the tests and appointments worthwhile. I was never a meditator before my diagnosis but now I try to do it daily. I guess I more so do vizualizations. Anyway, whenever I'm getting scans, I visualize. I think of my daughter going to kindergarten or giving her valedictorian speech. I see my son playing basketball or letting me straighten his bow tie at prom. Maybe it's silly, but it helps me feel less anxious. Also, I think we as humans know so little about the brain/mind. It can't hurt!

                    Keep on, keeping on!

                    Ashley

                      • April 6, 2016 at 5:47 pm
                      AshleyS
                      Participant

                        I meant after I started the *combo.* 🙂

                        • April 6, 2016 at 5:47 pm
                        AshleyS
                        Participant

                          I meant after I started the *combo.* 🙂

                          • April 6, 2016 at 5:47 pm
                          AshleyS
                          Participant

                            I meant after I started the *combo.* 🙂

                          • April 6, 2016 at 4:37 pm
                          Gwen in Maine
                          Participant

                            Stable *is* good even though it's hard to convince ourselves sometimes. Great news, Mat! Thanks for posting.

                            Gwen

                            • April 6, 2016 at 4:37 pm
                            Gwen in Maine
                            Participant

                              Stable *is* good even though it's hard to convince ourselves sometimes. Great news, Mat! Thanks for posting.

                              Gwen

                              • April 6, 2016 at 4:37 pm
                              Gwen in Maine
                              Participant

                                Stable *is* good even though it's hard to convince ourselves sometimes. Great news, Mat! Thanks for posting.

                                Gwen

                                • April 6, 2016 at 5:01 pm
                                BrianP
                                Participant

                                  That's great Mat.  I sense more good reports in your future.  I have a 7 and 5 year old.  I remember when they were 1 and 3 and I wondered if I would see them finish kindergarten.  Here I am still kickin and trying to keep up with them.  Every day is a blessing.

                                  Brian

                                  • April 6, 2016 at 5:01 pm
                                  BrianP
                                  Participant

                                    That's great Mat.  I sense more good reports in your future.  I have a 7 and 5 year old.  I remember when they were 1 and 3 and I wondered if I would see them finish kindergarten.  Here I am still kickin and trying to keep up with them.  Every day is a blessing.

                                    Brian

                                    • April 6, 2016 at 5:01 pm
                                    BrianP
                                    Participant

                                      That's great Mat.  I sense more good reports in your future.  I have a 7 and 5 year old.  I remember when they were 1 and 3 and I wondered if I would see them finish kindergarten.  Here I am still kickin and trying to keep up with them.  Every day is a blessing.

                                      Brian

                                      • April 6, 2016 at 5:57 pm
                                      Polymath
                                      Participant

                                        Hi Mat,

                                        I just wanted to chime in that I am in a very similar place treatment wise, having started the combo in November.  I made it through all four doses, and have moved on to every two-week maintenance of Nivo.  I remained very frustrated at lack of progress and had more scans, every 6-weeks as my doc really wanted to monitor my progress (or lack thereof) closely.  I must be a late bloomer because it was not until scans in mid-March that I showed the very first signs of immune response.  One difference is I also had radiation in December, which we believe may have been the kicker for me (the abscopal effect), who has resisted all prior therapies.  So the message is hang in there.  A late response is still very possible, and stable is good.

                                        Gary

                                        • April 6, 2016 at 5:57 pm
                                        Polymath
                                        Participant

                                          Hi Mat,

                                          I just wanted to chime in that I am in a very similar place treatment wise, having started the combo in November.  I made it through all four doses, and have moved on to every two-week maintenance of Nivo.  I remained very frustrated at lack of progress and had more scans, every 6-weeks as my doc really wanted to monitor my progress (or lack thereof) closely.  I must be a late bloomer because it was not until scans in mid-March that I showed the very first signs of immune response.  One difference is I also had radiation in December, which we believe may have been the kicker for me (the abscopal effect), who has resisted all prior therapies.  So the message is hang in there.  A late response is still very possible, and stable is good.

                                          Gary

                                          • April 6, 2016 at 5:57 pm
                                          Polymath
                                          Participant

                                            Hi Mat,

                                            I just wanted to chime in that I am in a very similar place treatment wise, having started the combo in November.  I made it through all four doses, and have moved on to every two-week maintenance of Nivo.  I remained very frustrated at lack of progress and had more scans, every 6-weeks as my doc really wanted to monitor my progress (or lack thereof) closely.  I must be a late bloomer because it was not until scans in mid-March that I showed the very first signs of immune response.  One difference is I also had radiation in December, which we believe may have been the kicker for me (the abscopal effect), who has resisted all prior therapies.  So the message is hang in there.  A late response is still very possible, and stable is good.

                                            Gary

                                            • April 7, 2016 at 3:46 pm
                                            Mat
                                            Participant

                                              Thanks everyone for your kind words and support.

                                              • April 7, 2016 at 3:46 pm
                                              Mat
                                              Participant

                                                Thanks everyone for your kind words and support.

                                                • April 7, 2016 at 3:46 pm
                                                Mat
                                                Participant

                                                  Thanks everyone for your kind words and support.

                                                  • April 7, 2016 at 10:56 pm
                                                  DZnDef
                                                  Participant

                                                    Hi Mat!  Stable is GREAT news!!!  Just imagine if your mets never changed from here on out.  You could easily go another 30 or 40 years!  Stable is all I'm hoping for.  Of course, I'd love to have it all disappear, but stable for me (since I have no symptoms) would be no different in practical terms.  Just wall those buggers off and get on with it! wink   Great news, Mat!

                                                    Cheers,

                                                    Maggie

                                                    • April 7, 2016 at 10:56 pm
                                                    DZnDef
                                                    Participant

                                                      Hi Mat!  Stable is GREAT news!!!  Just imagine if your mets never changed from here on out.  You could easily go another 30 or 40 years!  Stable is all I'm hoping for.  Of course, I'd love to have it all disappear, but stable for me (since I have no symptoms) would be no different in practical terms.  Just wall those buggers off and get on with it! wink   Great news, Mat!

                                                      Cheers,

                                                      Maggie

                                                      • April 7, 2016 at 10:56 pm
                                                      DZnDef
                                                      Participant

                                                        Hi Mat!  Stable is GREAT news!!!  Just imagine if your mets never changed from here on out.  You could easily go another 30 or 40 years!  Stable is all I'm hoping for.  Of course, I'd love to have it all disappear, but stable for me (since I have no symptoms) would be no different in practical terms.  Just wall those buggers off and get on with it! wink   Great news, Mat!

                                                        Cheers,

                                                        Maggie

                                                        • April 8, 2016 at 12:37 am
                                                        jamieth29
                                                        Participant
                                                          Great news Mat! Happy it is working for you!
                                                          • April 8, 2016 at 12:37 am
                                                          jamieth29
                                                          Participant
                                                            Great news Mat! Happy it is working for you!
                                                            • April 8, 2016 at 12:37 am
                                                            jamieth29
                                                            Participant
                                                              Great news Mat! Happy it is working for you!
                                                              • April 10, 2016 at 4:58 am
                                                              _Paul_
                                                              Participant

                                                                Mat, did you have CT or PET? All of my residual tumors remain in terms of location and size. However there is no FDG uptake. Just because they are still visualized does not mean they are alive (unless of course it was a PET with FDG uptake).

                                                                Wishing you the best – Paul

                                                                  • April 12, 2016 at 2:47 pm
                                                                  Mat
                                                                  Participant

                                                                    Paul, just saw your post–thanks.  Interestingly, I've not had a PET since being Stage IV.  We thought about doing one when I was on pembro, but then I progressed.  We then thought about doing one when I progressed and my insurance co rejected the PET as not being medically necessary (even though I was hospitalized at the time!).  We didn't press it then.  That said, a discussion about doing a PET (in 8 weeks) is on the docket for my next onc appointment.

                                                                    • April 12, 2016 at 2:47 pm
                                                                    Mat
                                                                    Participant

                                                                      Paul, just saw your post–thanks.  Interestingly, I've not had a PET since being Stage IV.  We thought about doing one when I was on pembro, but then I progressed.  We then thought about doing one when I progressed and my insurance co rejected the PET as not being medically necessary (even though I was hospitalized at the time!).  We didn't press it then.  That said, a discussion about doing a PET (in 8 weeks) is on the docket for my next onc appointment.

                                                                      • April 12, 2016 at 2:47 pm
                                                                      Mat
                                                                      Participant

                                                                        Paul, just saw your post–thanks.  Interestingly, I've not had a PET since being Stage IV.  We thought about doing one when I was on pembro, but then I progressed.  We then thought about doing one when I progressed and my insurance co rejected the PET as not being medically necessary (even though I was hospitalized at the time!).  We didn't press it then.  That said, a discussion about doing a PET (in 8 weeks) is on the docket for my next onc appointment.

                                                                      • April 10, 2016 at 4:58 am
                                                                      _Paul_
                                                                      Participant

                                                                        Mat, did you have CT or PET? All of my residual tumors remain in terms of location and size. However there is no FDG uptake. Just because they are still visualized does not mean they are alive (unless of course it was a PET with FDG uptake).

                                                                        Wishing you the best – Paul

                                                                        • April 10, 2016 at 4:58 am
                                                                        _Paul_
                                                                        Participant

                                                                          Mat, did you have CT or PET? All of my residual tumors remain in terms of location and size. However there is no FDG uptake. Just because they are still visualized does not mean they are alive (unless of course it was a PET with FDG uptake).

                                                                          Wishing you the best – Paul

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