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PD1 most recent scan report week 36

Forums General Melanoma Community PD1 most recent scan report week 36

  • Post
    Tina D
    Participant

      I am thankful to say that my scans this week remain stable. Going into the scans they told me I have had an 80% response, so that is where I gratefully remain. I am aware many are currently struggling, and I have lost a dear friend in the past month to mel. Just posting as an encouragement for all.

      Will be seeing an endocrinologist next trip to Vandy to try to get my thyroid and adrenal situation balanced out, but I feel very well & only symptom really is fatigue. I think the fatigue is largely endocrine related issues.

      Hopefully this will be approved soon so everyone can have access.

      Tina

       

    Viewing 11 reply threads
    • Replies
        SBeattie
        Participant

          Thank you for sharing this news 'Tina D'…I've been wondering how the trial was going for you…I week and 1/2 ago I had my first post-4 induction infusion scans (a BMS phase II – nivo and placebo; nivo and ipi; ipi and placebo)…by the side effects I've experienced which aren't bad (very dry mouth, of course some itching) I think I've gotten nivo and continue now every 2 weeks with whatever…it's double-blinded)…anyway, my scan showed resolution of smaller tumors seen (bilat lungs); one smaller; mediastinal lymph nodes 'stabble'…"however in the interval" several clusters of tiny nodules, both lungs, have showed up…too small to know what they represent…no other organ involvement…doc only said 'I think you're responding'…!!

          I am SO happy to hear of your 80% response…if 'we' can just keep things in check…, eh?

          Have a great day

          SBeattie
          Participant

            Thank you for sharing this news 'Tina D'…I've been wondering how the trial was going for you…I week and 1/2 ago I had my first post-4 induction infusion scans (a BMS phase II – nivo and placebo; nivo and ipi; ipi and placebo)…by the side effects I've experienced which aren't bad (very dry mouth, of course some itching) I think I've gotten nivo and continue now every 2 weeks with whatever…it's double-blinded)…anyway, my scan showed resolution of smaller tumors seen (bilat lungs); one smaller; mediastinal lymph nodes 'stabble'…"however in the interval" several clusters of tiny nodules, both lungs, have showed up…too small to know what they represent…no other organ involvement…doc only said 'I think you're responding'…!!

            I am SO happy to hear of your 80% response…if 'we' can just keep things in check…, eh?

            Have a great day

            SBeattie
            Participant

              Thank you for sharing this news 'Tina D'…I've been wondering how the trial was going for you…I week and 1/2 ago I had my first post-4 induction infusion scans (a BMS phase II – nivo and placebo; nivo and ipi; ipi and placebo)…by the side effects I've experienced which aren't bad (very dry mouth, of course some itching) I think I've gotten nivo and continue now every 2 weeks with whatever…it's double-blinded)…anyway, my scan showed resolution of smaller tumors seen (bilat lungs); one smaller; mediastinal lymph nodes 'stabble'…"however in the interval" several clusters of tiny nodules, both lungs, have showed up…too small to know what they represent…no other organ involvement…doc only said 'I think you're responding'…!!

              I am SO happy to hear of your 80% response…if 'we' can just keep things in check…, eh?

              Have a great day

                Tina D
                Participant

                  That is good news that you are responding. I had a VERY dry mouth for a while earlier on… and I do mean VERY dry! Hopefully the little nodules are nothing. I had some tiny something in my lungs one time that went away…never knew what they were. 

                  Yes, I agree that if the mel is not making headway, we are glad to be keeping it in check!

                  Tina

                  Tina D
                  Participant

                    That is good news that you are responding. I had a VERY dry mouth for a while earlier on… and I do mean VERY dry! Hopefully the little nodules are nothing. I had some tiny something in my lungs one time that went away…never knew what they were. 

                    Yes, I agree that if the mel is not making headway, we are glad to be keeping it in check!

                    Tina

                    Tina D
                    Participant

                      That is good news that you are responding. I had a VERY dry mouth for a while earlier on… and I do mean VERY dry! Hopefully the little nodules are nothing. I had some tiny something in my lungs one time that went away…never knew what they were. 

                      Yes, I agree that if the mel is not making headway, we are glad to be keeping it in check!

                      Tina

                    BrianP
                    Participant

                      80% response and stable!  That sounds great Tina.  Good luck with the endocrinologist.  I think you are right about the fatigue possibly being related to the endo stuff.

                      Biran

                      BrianP
                      Participant

                        80% response and stable!  That sounds great Tina.  Good luck with the endocrinologist.  I think you are right about the fatigue possibly being related to the endo stuff.

                        Biran

                        BrianP
                        Participant

                          80% response and stable!  That sounds great Tina.  Good luck with the endocrinologist.  I think you are right about the fatigue possibly being related to the endo stuff.

                          Biran

                            Tina D
                            Participant

                              Thank you . smiley

                              Tina D
                              Participant

                                Thank you . smiley

                                Tina D
                                Participant

                                  Thank you . smiley

                                kpcollins31
                                Participant

                                  Great to hear, Tina. Very encouraging results.

                                  Kevin

                                   

                                  kpcollins31
                                  Participant

                                    Great to hear, Tina. Very encouraging results.

                                    Kevin

                                     

                                      Tina D
                                      Participant

                                        Thank you, Kevin… how are YOU doing??

                                        Tina

                                        Tina D
                                        Participant

                                          Thank you, Kevin… how are YOU doing??

                                          Tina

                                          Tina D
                                          Participant

                                            Thank you, Kevin… how are YOU doing??

                                            Tina

                                            kpcollins31
                                            Participant

                                              Feeling pretty good – nervous about my next scan in a little over a month… I get occasional mild pains in the abdominal region, but I am attributing them to the surgery 2 months ago. I hate that a scan will dictate quality of life and that there is absolutely nothing I can do to influence the outcome.   

                                              Kevin

                                               

                                              kpcollins31
                                              Participant

                                                Feeling pretty good – nervous about my next scan in a little over a month… I get occasional mild pains in the abdominal region, but I am attributing them to the surgery 2 months ago. I hate that a scan will dictate quality of life and that there is absolutely nothing I can do to influence the outcome.   

                                                Kevin

                                                 

                                                kpcollins31
                                                Participant

                                                  Feeling pretty good – nervous about my next scan in a little over a month… I get occasional mild pains in the abdominal region, but I am attributing them to the surgery 2 months ago. I hate that a scan will dictate quality of life and that there is absolutely nothing I can do to influence the outcome.   

                                                  Kevin

                                                   

                                                  Tina D
                                                  Participant

                                                    Kevin, I was just telling my husband the other day that I frequently have odd aches and pains, and they are always in the areas where I have had a previous surgery. It all makes sense because of scar tissue and such, but it can also be disconcerting around scan time. I have had many surgeries and I can assure you that getting discomfort in the area is common. Praying for good scans for you. I am glad you are feeling pretty well, that was a big surgery. I am amazed at the nerve endings our intestines have…never knew till they messed with them in surgery,LOL! 

                                                    Take Care!

                                                    Tina

                                                    Tina D
                                                    Participant

                                                      Kevin, I was just telling my husband the other day that I frequently have odd aches and pains, and they are always in the areas where I have had a previous surgery. It all makes sense because of scar tissue and such, but it can also be disconcerting around scan time. I have had many surgeries and I can assure you that getting discomfort in the area is common. Praying for good scans for you. I am glad you are feeling pretty well, that was a big surgery. I am amazed at the nerve endings our intestines have…never knew till they messed with them in surgery,LOL! 

                                                      Take Care!

                                                      Tina

                                                      Tina D
                                                      Participant

                                                        Kevin, I was just telling my husband the other day that I frequently have odd aches and pains, and they are always in the areas where I have had a previous surgery. It all makes sense because of scar tissue and such, but it can also be disconcerting around scan time. I have had many surgeries and I can assure you that getting discomfort in the area is common. Praying for good scans for you. I am glad you are feeling pretty well, that was a big surgery. I am amazed at the nerve endings our intestines have…never knew till they messed with them in surgery,LOL! 

                                                        Take Care!

                                                        Tina

                                                      kpcollins31
                                                      Participant

                                                        Great to hear, Tina. Very encouraging results.

                                                        Kevin

                                                         

                                                        Bubbles
                                                        Participant

                                                          Hang in there, Tina! 

                                                          80% reduction and stable sounds pretty good to me!  Sorry for the endocrine issues.  Hopefully, they can get that under control and you will feel better.  Where do you live, since you are being treated at Nashville?  Coming from Chatt town.  Wishing you the best.  Celeste

                                                           

                                                          Bubbles
                                                          Participant

                                                            Hang in there, Tina! 

                                                            80% reduction and stable sounds pretty good to me!  Sorry for the endocrine issues.  Hopefully, they can get that under control and you will feel better.  Where do you live, since you are being treated at Nashville?  Coming from Chatt town.  Wishing you the best.  Celeste

                                                             

                                                              Tina D
                                                              Participant

                                                                Thank you, Celeste. I can't complain too much about the fatigue, it is certainly more manageable than ANY other treatment I have EVER been on. I never feel  very badly, just tired.

                                                                I travel to TN from SW Indiana…just under a four hour drive. You go to Vandy, too? If so, how often are you there?

                                                                 

                                                                Tina

                                                                Tina D
                                                                Participant

                                                                  Thank you, Celeste. I can't complain too much about the fatigue, it is certainly more manageable than ANY other treatment I have EVER been on. I never feel  very badly, just tired.

                                                                  I travel to TN from SW Indiana…just under a four hour drive. You go to Vandy, too? If so, how often are you there?

                                                                   

                                                                  Tina

                                                                  Tina D
                                                                  Participant

                                                                    Thank you, Celeste. I can't complain too much about the fatigue, it is certainly more manageable than ANY other treatment I have EVER been on. I never feel  very badly, just tired.

                                                                    I travel to TN from SW Indiana…just under a four hour drive. You go to Vandy, too? If so, how often are you there?

                                                                     

                                                                    Tina

                                                                    Bubbles
                                                                    Participant

                                                                      No.  When I was needing a trial/treatment there was nothing available there.  I ended up doing a 2 1/2 year Nivo trial in Tampa, at Moffitt.  Glad you are not having too much of a drive…but I know it is still hard!!! Wishing you continued response!!!  C

                                                                      Bubbles
                                                                      Participant

                                                                        No.  When I was needing a trial/treatment there was nothing available there.  I ended up doing a 2 1/2 year Nivo trial in Tampa, at Moffitt.  Glad you are not having too much of a drive…but I know it is still hard!!! Wishing you continued response!!!  C

                                                                        Bubbles
                                                                        Participant

                                                                          No.  When I was needing a trial/treatment there was nothing available there.  I ended up doing a 2 1/2 year Nivo trial in Tampa, at Moffitt.  Glad you are not having too much of a drive…but I know it is still hard!!! Wishing you continued response!!!  C

                                                                          Erinmay22
                                                                          Participant

                                                                            Tina –

                                                                            So happy to read about your continued success!  Just had round #22 and my 60 week scans March 17th.  All continues to show shrinkage and nothing new.  Pretty amazing!  

                                                                            Erinmay22
                                                                            Participant

                                                                              Tina –

                                                                              So happy to read about your continued success!  Just had round #22 and my 60 week scans March 17th.  All continues to show shrinkage and nothing new.  Pretty amazing!  

                                                                              Erinmay22
                                                                              Participant

                                                                                Tina –

                                                                                So happy to read about your continued success!  Just had round #22 and my 60 week scans March 17th.  All continues to show shrinkage and nothing new.  Pretty amazing!  

                                                                                Tina D
                                                                                Participant

                                                                                  That IS just incredible. When we look back on occasion to 2 yrs ago to the time we were told for me to get my affairs in order, we have such a sense of absolute gratitude. Here I am 2 yrs later, and doing well. So thankful.

                                                                                  I am glad you are doing so great!!! ๐Ÿ™‚

                                                                                  Tina

                                                                                  Tina D
                                                                                  Participant

                                                                                    That IS just incredible. When we look back on occasion to 2 yrs ago to the time we were told for me to get my affairs in order, we have such a sense of absolute gratitude. Here I am 2 yrs later, and doing well. So thankful.

                                                                                    I am glad you are doing so great!!! ๐Ÿ™‚

                                                                                    Tina

                                                                                    Tina D
                                                                                    Participant

                                                                                      That IS just incredible. When we look back on occasion to 2 yrs ago to the time we were told for me to get my affairs in order, we have such a sense of absolute gratitude. Here I am 2 yrs later, and doing well. So thankful.

                                                                                      I am glad you are doing so great!!! ๐Ÿ™‚

                                                                                      Tina

                                                                                    Bubbles
                                                                                    Participant

                                                                                      Hang in there, Tina! 

                                                                                      80% reduction and stable sounds pretty good to me!  Sorry for the endocrine issues.  Hopefully, they can get that under control and you will feel better.  Where do you live, since you are being treated at Nashville?  Coming from Chatt town.  Wishing you the best.  Celeste

                                                                                       

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