Just had a scan and sharing some thoughts.

Forums General Melanoma Community Just had a scan and sharing some thoughts.

  • Post
    himynameiskevin
    Participant

      Well I had a CTscan of my chest/abdomen a couple hours ago to see if I am hopefully a late responder to the Yervoy I finished on Dec 20th. Maybe hear word tomorrow or Monday. Not sure if this is still too early to tell, but it'll give some comparison to what was shown on the scan from Jan 9th. I've heard about it possibly taking up to 5 months to show results, not sure if from first dose or last dose, but probably varies from person to person.

      Well I had a CTscan of my chest/abdomen a couple hours ago to see if I am hopefully a late responder to the Yervoy I finished on Dec 20th. Maybe hear word tomorrow or Monday. Not sure if this is still too early to tell, but it'll give some comparison to what was shown on the scan from Jan 9th. I've heard about it possibly taking up to 5 months to show results, not sure if from first dose or last dose, but probably varies from person to person. Physically I feel pretty good, no pains or anything abnormal, my 4-month itchy-throat cough has subsided and my slight sensation of paralysis in my left hand is pretty much gone too.  Hopefully a good sign the SRS was effective. Mentally though, this last week has been the hardest since all this started. Although unlikely it will happen again with the SRS and temporary medication, the second seizure, as mild as it was, has made me a little paranoid, a bit worried or concerned, thinking "but what if it does happen again?" "what if I'm alone?"  I'm sure these feelings are natural and will pass with time, peaks and valleys have always been a part of the territory dealing with this, I remind myself I’ve been through valleys before, and I made it though, and then enjoyed the peaks. I've had so many wonderful times during the course of all this. I'm sure most of this unsettling feeling is just from this “temporary state of uncertainty”, this waiting time where everything is in the air between scans and growth and treatment options.

      At least there’s that word “temporary”. Implying that things can always get better, no matter how unlikely, as they have before. In the most perfect, replayed, manifested, thought about, prayed for, miracle of a story imaginable… my scans today would show that I am indeed a late responder, the tumors in my lungs are shrinking and therefore the ones in my brain may be too. They start me on another follow up round of Yervoy or maybe finish up with another something at the NIH. And things continue to shrink and disappear indefinitely. Oh how I wish that… not just for me, but for Brenda, my family and friends, doctors, nurses, and any people who have supported, encouraged, and helped me through these times. I want to make you proud.

      Thanks for reading.

      Staying focused and optimistic,
      -Kevin

    Viewing 17 reply threads
    • Replies
        Becky
        Participant

          Kevin

          I have 3 sons, the oldest with epilepsy and its my middle son with melanoma. So my heart goes out to you on all of this you are dealing with.

          My son started having seizures when he was 11 (he is 27) and even with lots of meication he has never been fully controlled. He will probably never be able to drive. He works, goes to school, lives with his girlfriend and never knows when or where he will have a seizure..it is scary but he has learned to live with it. Hopefully yours will disappear with treatment.

          stay optimistic!

          Becky

          Becky
          Participant

            Kevin

            I have 3 sons, the oldest with epilepsy and its my middle son with melanoma. So my heart goes out to you on all of this you are dealing with.

            My son started having seizures when he was 11 (he is 27) and even with lots of meication he has never been fully controlled. He will probably never be able to drive. He works, goes to school, lives with his girlfriend and never knows when or where he will have a seizure..it is scary but he has learned to live with it. Hopefully yours will disappear with treatment.

            stay optimistic!

            Becky

              deardad
              Participant

                Kevin, I am hoping you get that positive news that yervoy is shrinking those tumors. I always enjoy reading your posts and sounds like you have a wonderful support network. 

                Never give up, stay positive.

                Nahmi

                deardad
                Participant

                  Kevin, I am hoping you get that positive news that yervoy is shrinking those tumors. I always enjoy reading your posts and sounds like you have a wonderful support network. 

                  Never give up, stay positive.

                  Nahmi

                  deardad
                  Participant

                    Kevin, I am hoping you get that positive news that yervoy is shrinking those tumors. I always enjoy reading your posts and sounds like you have a wonderful support network. 

                    Never give up, stay positive.

                    Nahmi

                  Becky
                  Participant

                    Kevin

                    I have 3 sons, the oldest with epilepsy and its my middle son with melanoma. So my heart goes out to you on all of this you are dealing with.

                    My son started having seizures when he was 11 (he is 27) and even with lots of meication he has never been fully controlled. He will probably never be able to drive. He works, goes to school, lives with his girlfriend and never knows when or where he will have a seizure..it is scary but he has learned to live with it. Hopefully yours will disappear with treatment.

                    stay optimistic!

                    Becky

                    audgator
                    Participant

                      Kevin, your post made me thankful for my team at Moffitt. I'll have my post-ipi scans in 2 weeks & I've always had the results in an hour or so. Waiting a weekend would make me nuts. I wish you well….VERY well.      Dan

                        LynnLuc
                        Participant

                          I am also thankful I go to Moffitt and get my scans within an hour or so…I get blood work and then scans and then see my doc who has the results before I go on to my Anti PD-1 treatment.  In North Dakota it would take over a week to get any results back…at Mayo I got them sometimes the same day, or at least the following day.

                          LynnLuc
                          Participant

                            I am also thankful I go to Moffitt and get my scans within an hour or so…I get blood work and then scans and then see my doc who has the results before I go on to my Anti PD-1 treatment.  In North Dakota it would take over a week to get any results back…at Mayo I got them sometimes the same day, or at least the following day.

                            LynnLuc
                            Participant

                              I am also thankful I go to Moffitt and get my scans within an hour or so…I get blood work and then scans and then see my doc who has the results before I go on to my Anti PD-1 treatment.  In North Dakota it would take over a week to get any results back…at Mayo I got them sometimes the same day, or at least the following day.

                            audgator
                            Participant

                              Kevin, your post made me thankful for my team at Moffitt. I'll have my post-ipi scans in 2 weeks & I've always had the results in an hour or so. Waiting a weekend would make me nuts. I wish you well….VERY well.      Dan

                              audgator
                              Participant

                                Kevin, your post made me thankful for my team at Moffitt. I'll have my post-ipi scans in 2 weeks & I've always had the results in an hour or so. Waiting a weekend would make me nuts. I wish you well….VERY well.      Dan

                                James from Sydney
                                Participant

                                  Kevin i hope all goes well with the results, how you feel is always a good sign so hang in there. Our son had 2 Brain Ops and Radio and he definitley improved as time went by, so hopefully you may not have any more seizures.

                                  Hopefully you will continue with Yervoy but there is also PD1 which sounds promising, someone also recently posted a paper that showed good results for brain mets, it was in Italy, though only 10 patients it was a combo of chemo ( Bold regime) and CSF an immune stimulant. 

                                  Keep us posted you are a wonderful young man.

                                   

                                  best wishes

                                  James

                                  James from Sydney
                                  Participant

                                    Kevin i hope all goes well with the results, how you feel is always a good sign so hang in there. Our son had 2 Brain Ops and Radio and he definitley improved as time went by, so hopefully you may not have any more seizures.

                                    Hopefully you will continue with Yervoy but there is also PD1 which sounds promising, someone also recently posted a paper that showed good results for brain mets, it was in Italy, though only 10 patients it was a combo of chemo ( Bold regime) and CSF an immune stimulant. 

                                    Keep us posted you are a wonderful young man.

                                     

                                    best wishes

                                    James

                                    James from Sydney
                                    Participant

                                      Kevin i hope all goes well with the results, how you feel is always a good sign so hang in there. Our son had 2 Brain Ops and Radio and he definitley improved as time went by, so hopefully you may not have any more seizures.

                                      Hopefully you will continue with Yervoy but there is also PD1 which sounds promising, someone also recently posted a paper that showed good results for brain mets, it was in Italy, though only 10 patients it was a combo of chemo ( Bold regime) and CSF an immune stimulant. 

                                      Keep us posted you are a wonderful young man.

                                       

                                      best wishes

                                      James

                                      jag
                                      Participant
                                        Kevin,
                                        I’m happy to hear that you are still your same peaceful self.
                                        I definitely am praying that you get good news with Yervoy.
                                        Either way, you sound like you have a pretty good backup plan.
                                        God Bless
                                        J
                                        jag
                                        Participant
                                          Kevin,
                                          I’m happy to hear that you are still your same peaceful self.
                                          I definitely am praying that you get good news with Yervoy.
                                          Either way, you sound like you have a pretty good backup plan.
                                          God Bless
                                          J
                                          jag
                                          Participant
                                            Kevin,
                                            I’m happy to hear that you are still your same peaceful self.
                                            I definitely am praying that you get good news with Yervoy.
                                            Either way, you sound like you have a pretty good backup plan.
                                            God Bless
                                            J
                                            aldakota22
                                            Participant

                                              Kevin I read your posts.Definitely a person that inspires me.I will pray and hope it all goes well.You deserve good news.We all do.I will be waiting for your post with the results Make us PROUD your words.

                                              aldakota22
                                              Participant

                                                Kevin I read your posts.Definitely a person that inspires me.I will pray and hope it all goes well.You deserve good news.We all do.I will be waiting for your post with the results Make us PROUD your words.

                                                aldakota22
                                                Participant

                                                  Kevin I read your posts.Definitely a person that inspires me.I will pray and hope it all goes well.You deserve good news.We all do.I will be waiting for your post with the results Make us PROUD your words.

                                                  KRob
                                                  Participant

                                                    Kevin-

                                                    I am an irregular visitor to this board and a stage IV survivor since 2005….I have followed your progress and marveled at the grace that you have shown during this past year+

                                                    I hope and pray that you get the results and relief you deserve.

                                                    Blessings,

                                                    K

                                                    KRob
                                                    Participant

                                                      Kevin-

                                                      I am an irregular visitor to this board and a stage IV survivor since 2005….I have followed your progress and marveled at the grace that you have shown during this past year+

                                                      I hope and pray that you get the results and relief you deserve.

                                                      Blessings,

                                                      K

                                                        Laurie from maine
                                                        Participant

                                                          Kevin,

                                                          I am sending strong positive thoughts and prayers coming your way from maine.  Let us know what you find out on scans, I believe it will be positive news for you-  You are strong and have such a positive attitude.

                                                          laurie from maine

                                                          Laurie from maine
                                                          Participant

                                                            Kevin,

                                                            I am sending strong positive thoughts and prayers coming your way from maine.  Let us know what you find out on scans, I believe it will be positive news for you-  You are strong and have such a positive attitude.

                                                            laurie from maine

                                                            Vermont_Donna
                                                            Participant

                                                              Hi Kevin,

                                                              Glad for the update and as someone said above, you show such GRACE and we are already proud of you in all ways!

                                                              Well wishes from Vermont!

                                                              vermont_Donna, stage 3a, NED

                                                              Vermont_Donna
                                                              Participant

                                                                Hi Kevin,

                                                                Glad for the update and as someone said above, you show such GRACE and we are already proud of you in all ways!

                                                                Well wishes from Vermont!

                                                                vermont_Donna, stage 3a, NED

                                                                Vermont_Donna
                                                                Participant

                                                                  Hi Kevin,

                                                                  Glad for the update and as someone said above, you show such GRACE and we are already proud of you in all ways!

                                                                  Well wishes from Vermont!

                                                                  vermont_Donna, stage 3a, NED

                                                                  Laurie from maine
                                                                  Participant

                                                                    Kevin,

                                                                    I am sending strong positive thoughts and prayers coming your way from maine.  Let us know what you find out on scans, I believe it will be positive news for you-  You are strong and have such a positive attitude.

                                                                    laurie from maine

                                                                  KRob
                                                                  Participant

                                                                    Kevin-

                                                                    I am an irregular visitor to this board and a stage IV survivor since 2005….I have followed your progress and marveled at the grace that you have shown during this past year+

                                                                    I hope and pray that you get the results and relief you deserve.

                                                                    Blessings,

                                                                    K

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