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6 Week Scans & Follow up
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6 Week Scans & Follow up

› Forums › General Melanoma Community › 6 Week Scans & Follow up

  • Post
    • November 7, 2016 at 2:02 am
    JoshF
    Participant

      I haven't been checking in much lately. So I hope this finds everyone well. I think often of all of you and pray you're well. I've had a lot of anxiety and crap going on in my head lately. Anyway, I was in Houston this week at MDA for 6 week scans post TCell infusion. So bottom line I'll take this as a win though as you can all attest to, we want better. The brain MRI showed nothing new which is great after having gamma knife Aug 19…big win! The CT Scan showed nothing new and minimal progression in few leisons. The team referred to a 3-8% progression. While we'd like things just disappearing, it's a process and I'm told it can take time as it been just over a month. So that leaves us committed to completing the trial in regards to treatments. So I did dose #3 of ipi(just an FYI with all treatment I've done…that was dose #10 of ipi for me). I'll go back right before Thanksgiving for final dose. Then in mid Dec we'll repeat scans and go from there. They're also going to biopsy a sub-q to test. Whew!!! This is a crazy life we live but I'm living and get to hug my wife & kids so I'll deal with it. 

      Finally, I did have a few sub q's shrink up but not go away totally. Some of you will recall last posts asking questions about this. They (MDA) don't include that in progression etc..as it appears they're not measuring. Just that nothing new showed up. I'm scared and hope my immune system kicks into high gear. Though I'll take this latest news as positive since I've only been kicked down since May. Love and peace to you all!! Thank you for your unending support!!

      Josh

    Viewing 35 reply threads
    • Replies
        • November 7, 2016 at 3:17 am
        Bubbles
        Participant

          Hey Joshie!

          I've spent this week thinking of you! While, like you, I wish the scans had been read as, "All gone!"…..I think this is good news still! A measure of 3-8% is certainly within the margin of error (sorry to use a polling term!) of what can be measured. So,  at the very least you have certainly gained stability…and given what had been happening…that is AWESOME! I can only imagine how hard it is to be patient…some more…but I think your docs are telling you straight….Give it a bit more time. Keep hugging your peeps. Glad for the update. Enjoy your turkey and dressing with a side of ipi! Much love, c

          • November 7, 2016 at 3:17 am
          Bubbles
          Participant

            Hey Joshie!

            I've spent this week thinking of you! While, like you, I wish the scans had been read as, "All gone!"…..I think this is good news still! A measure of 3-8% is certainly within the margin of error (sorry to use a polling term!) of what can be measured. So,  at the very least you have certainly gained stability…and given what had been happening…that is AWESOME! I can only imagine how hard it is to be patient…some more…but I think your docs are telling you straight….Give it a bit more time. Keep hugging your peeps. Glad for the update. Enjoy your turkey and dressing with a side of ipi! Much love, c

              • November 8, 2016 at 1:13 am
              JoshF
              Participant

                Thanks Celeste!!! Of course I'd like better news but like you said with all that had happened, I'll take it as good news. Crazy how just a few months ago it would be totally unacceptable to me. How this disease changes us and getting a stalemate can be a win in what has become a war I fully intend on winning. Just hope the ipi can kick in and help out. I can't help but wonder if this crap has found a way to disrupt the signal etc… My MDA onc was excited as they're having a big conference in Boston this week…Can't remember name of organization. He expressed that good things are in pipeline. I said hurry it up, I know lot of people who can use it. Thanks for your love & support!!!

                Joshie

                • November 8, 2016 at 1:13 am
                JoshF
                Participant

                  Thanks Celeste!!! Of course I'd like better news but like you said with all that had happened, I'll take it as good news. Crazy how just a few months ago it would be totally unacceptable to me. How this disease changes us and getting a stalemate can be a win in what has become a war I fully intend on winning. Just hope the ipi can kick in and help out. I can't help but wonder if this crap has found a way to disrupt the signal etc… My MDA onc was excited as they're having a big conference in Boston this week…Can't remember name of organization. He expressed that good things are in pipeline. I said hurry it up, I know lot of people who can use it. Thanks for your love & support!!!

                  Joshie

                  • November 8, 2016 at 1:13 am
                  JoshF
                  Participant

                    Thanks Celeste!!! Of course I'd like better news but like you said with all that had happened, I'll take it as good news. Crazy how just a few months ago it would be totally unacceptable to me. How this disease changes us and getting a stalemate can be a win in what has become a war I fully intend on winning. Just hope the ipi can kick in and help out. I can't help but wonder if this crap has found a way to disrupt the signal etc… My MDA onc was excited as they're having a big conference in Boston this week…Can't remember name of organization. He expressed that good things are in pipeline. I said hurry it up, I know lot of people who can use it. Thanks for your love & support!!!

                    Joshie

                  • November 7, 2016 at 3:17 am
                  Bubbles
                  Participant

                    Hey Joshie!

                    I've spent this week thinking of you! While, like you, I wish the scans had been read as, "All gone!"…..I think this is good news still! A measure of 3-8% is certainly within the margin of error (sorry to use a polling term!) of what can be measured. So,  at the very least you have certainly gained stability…and given what had been happening…that is AWESOME! I can only imagine how hard it is to be patient…some more…but I think your docs are telling you straight….Give it a bit more time. Keep hugging your peeps. Glad for the update. Enjoy your turkey and dressing with a side of ipi! Much love, c

                    • November 7, 2016 at 4:02 am
                    Polymath
                    Participant

                      Hey Josh,

                      I too have been thinking of you.  Sending blasts of good energy your way every now and then.  Good to hear you appear to be stable.  Needless to say stable is a win in our battle.  Try to relax and let the good news sink in.  You have a lot of support and much to live for.  We got your six.

                      Gary

                        • November 8, 2016 at 1:15 am
                        JoshF
                        Participant

                          Gary thank you for your positive attitude and enthusiasm. With this being such an emotional drain, I appreciate your encouragement and energy. You're a good man!

                          Josh

                          • November 8, 2016 at 1:15 am
                          JoshF
                          Participant

                            Gary thank you for your positive attitude and enthusiasm. With this being such an emotional drain, I appreciate your encouragement and energy. You're a good man!

                            Josh

                            • November 8, 2016 at 1:15 am
                            JoshF
                            Participant

                              Gary thank you for your positive attitude and enthusiasm. With this being such an emotional drain, I appreciate your encouragement and energy. You're a good man!

                              Josh

                            • November 7, 2016 at 4:02 am
                            Polymath
                            Participant

                              Hey Josh,

                              I too have been thinking of you.  Sending blasts of good energy your way every now and then.  Good to hear you appear to be stable.  Needless to say stable is a win in our battle.  Try to relax and let the good news sink in.  You have a lot of support and much to live for.  We got your six.

                              Gary

                              • November 7, 2016 at 4:02 am
                              Polymath
                              Participant

                                Hey Josh,

                                I too have been thinking of you.  Sending blasts of good energy your way every now and then.  Good to hear you appear to be stable.  Needless to say stable is a win in our battle.  Try to relax and let the good news sink in.  You have a lot of support and much to live for.  We got your six.

                                Gary

                                • November 7, 2016 at 4:02 am
                                Polymath
                                Participant

                                  Hey Josh,

                                  I too have been thinking of you.  Sending blasts of good energy your way every now and then.  Good to hear you appear to be stable.  Needless to say stable is a win in our battle.  Try to relax and let the good news sink in.  You have a lot of support and much to live for.  We got your six.

                                  Gary

                                  • November 7, 2016 at 4:02 am
                                  Polymath
                                  Participant

                                    Hey Josh,

                                    I too have been thinking of you.  Sending blasts of good energy your way every now and then.  Good to hear you appear to be stable.  Needless to say stable is a win in our battle.  Try to relax and let the good news sink in.  You have a lot of support and much to live for.  We got your six.

                                    Gary

                                    • November 7, 2016 at 4:02 am
                                    Polymath
                                    Participant

                                      Hey Josh,

                                      I too have been thinking of you.  Sending blasts of good energy your way every now and then.  Good to hear you appear to be stable.  Needless to say stable is a win in our battle.  Try to relax and let the good news sink in.  You have a lot of support and much to live for.  We got your six.

                                      Gary

                                      • November 7, 2016 at 4:47 am
                                      casagrayson
                                      Participant

                                        We'll take stable!  I know it's a tough battle, but you've got this, Josh!

                                        • November 7, 2016 at 4:47 am
                                        casagrayson
                                        Participant

                                          We'll take stable!  I know it's a tough battle, but you've got this, Josh!

                                            • November 8, 2016 at 1:15 am
                                            JoshF
                                            Participant

                                              Thank you!! I appreciate it very much!!!

                                              • November 8, 2016 at 1:15 am
                                              JoshF
                                              Participant

                                                Thank you!! I appreciate it very much!!!

                                                • November 8, 2016 at 1:15 am
                                                JoshF
                                                Participant

                                                  Thank you!! I appreciate it very much!!!

                                                • November 7, 2016 at 4:47 am
                                                casagrayson
                                                Participant

                                                  We'll take stable!  I know it's a tough battle, but you've got this, Josh!

                                                  • November 7, 2016 at 4:52 pm
                                                  Mat
                                                  Participant

                                                    Josh, glad to hear.  As I often say to people–if you're not cured, stable is the place to be.

                                                    • November 7, 2016 at 4:52 pm
                                                    Mat
                                                    Participant

                                                      Josh, glad to hear.  As I often say to people–if you're not cured, stable is the place to be.

                                                      • November 7, 2016 at 4:52 pm
                                                      Mat
                                                      Participant

                                                        Josh, glad to hear.  As I often say to people–if you're not cured, stable is the place to be.

                                                          • November 8, 2016 at 1:17 am
                                                          JoshF
                                                          Participant

                                                            Mat…good to hear from you! I never thought stable would be acceptable but how quickly things change. Hope you're well!!!

                                                             

                                                            • November 8, 2016 at 1:17 am
                                                            JoshF
                                                            Participant

                                                              Mat…good to hear from you! I never thought stable would be acceptable but how quickly things change. Hope you're well!!!

                                                               

                                                              • November 8, 2016 at 1:17 am
                                                              JoshF
                                                              Participant

                                                                Mat…good to hear from you! I never thought stable would be acceptable but how quickly things change. Hope you're well!!!

                                                                 

                                                              • November 7, 2016 at 8:19 pm
                                                              ed williams
                                                              Participant

                                                                Good to hear from you Josh, nothing new is great news!!!Best Wishes!!!Ed

                                                                  • November 8, 2016 at 1:18 am
                                                                  JoshF
                                                                  Participant

                                                                    Thank you Ed!! I appreciate your support and how you're such a wealth of info to so many of us in this forum! Be well my friend!

                                                                    • November 8, 2016 at 1:18 am
                                                                    JoshF
                                                                    Participant

                                                                      Thank you Ed!! I appreciate your support and how you're such a wealth of info to so many of us in this forum! Be well my friend!

                                                                      • November 8, 2016 at 1:18 am
                                                                      JoshF
                                                                      Participant

                                                                        Thank you Ed!! I appreciate your support and how you're such a wealth of info to so many of us in this forum! Be well my friend!

                                                                      • November 7, 2016 at 8:19 pm
                                                                      ed williams
                                                                      Participant

                                                                        Good to hear from you Josh, nothing new is great news!!!Best Wishes!!!Ed

                                                                        • November 7, 2016 at 8:19 pm
                                                                        ed williams
                                                                        Participant

                                                                          Good to hear from you Josh, nothing new is great news!!!Best Wishes!!!Ed

                                                                          • November 7, 2016 at 9:17 pm
                                                                          Scooby123
                                                                          Participant

                                                                            Hi Josh,

                                                                            so nice to hear from you Hun. I have not posted a while I lost my mum in July and with me not been well after tumour on brain and dealing with my sick mum it has been very hard. Just did not want to think about my situation for the first time I have felt really down too.

                                                                            my scan after a Gamma knife nothing new tumour shrunk. Not on any treatment at present due to stable lungs, liver tumours. 

                                                                            I hope your immune system steps up , but so glad that your last scans show improvement.  I pray one day we all ned or stable for a long long time. 

                                                                            Keep your chin up and keep the good fight my friend. Keep us posted and take care Josh

                                                                            Scooby ❤️

                                                                              • November 8, 2016 at 1:23 am
                                                                              JoshF
                                                                              Participant

                                                                                I'm so sorry about all this. You've been through the ringer, just heartbreaking. I know so many of us just wish we could take the pain and suffering away. I pray for peace for you and that you stay stable. I always appreciate your kind words and encouragement. Be well!

                                                                                Josh

                                                                                • November 8, 2016 at 1:23 am
                                                                                JoshF
                                                                                Participant

                                                                                  I'm so sorry about all this. You've been through the ringer, just heartbreaking. I know so many of us just wish we could take the pain and suffering away. I pray for peace for you and that you stay stable. I always appreciate your kind words and encouragement. Be well!

                                                                                  Josh

                                                                                  • November 8, 2016 at 1:23 am
                                                                                  JoshF
                                                                                  Participant

                                                                                    I'm so sorry about all this. You've been through the ringer, just heartbreaking. I know so many of us just wish we could take the pain and suffering away. I pray for peace for you and that you stay stable. I always appreciate your kind words and encouragement. Be well!

                                                                                    Josh

                                                                                  • November 7, 2016 at 9:17 pm
                                                                                  Scooby123
                                                                                  Participant

                                                                                    Hi Josh,

                                                                                    so nice to hear from you Hun. I have not posted a while I lost my mum in July and with me not been well after tumour on brain and dealing with my sick mum it has been very hard. Just did not want to think about my situation for the first time I have felt really down too.

                                                                                    my scan after a Gamma knife nothing new tumour shrunk. Not on any treatment at present due to stable lungs, liver tumours. 

                                                                                    I hope your immune system steps up , but so glad that your last scans show improvement.  I pray one day we all ned or stable for a long long time. 

                                                                                    Keep your chin up and keep the good fight my friend. Keep us posted and take care Josh

                                                                                    Scooby ❤️

                                                                                    • November 7, 2016 at 9:17 pm
                                                                                    Scooby123
                                                                                    Participant

                                                                                      Hi Josh,

                                                                                      so nice to hear from you Hun. I have not posted a while I lost my mum in July and with me not been well after tumour on brain and dealing with my sick mum it has been very hard. Just did not want to think about my situation for the first time I have felt really down too.

                                                                                      my scan after a Gamma knife nothing new tumour shrunk. Not on any treatment at present due to stable lungs, liver tumours. 

                                                                                      I hope your immune system steps up , but so glad that your last scans show improvement.  I pray one day we all ned or stable for a long long time. 

                                                                                      Keep your chin up and keep the good fight my friend. Keep us posted and take care Josh

                                                                                      Scooby ❤️

                                                                                      • November 8, 2016 at 2:53 am
                                                                                      jenny22
                                                                                      Participant

                                                                                        Hi Josh-

                                                                                        So good to see a post from you…..and considering some of your posts of the last few months, I'd say this one is a pretty good one.

                                                                                        Though patience is not easy for most of us, I'm hoping if you can muster up some., and that maybe IPI is doing its job, and we'll see more improvement in Dec. scans.

                                                                                        Will keep my eye out for your next upate!!!

                                                                                        Take care Josh!

                                                                                        Best,

                                                                                        jenny

                                                                                         

                                                                                        • November 8, 2016 at 2:53 am
                                                                                        jenny22
                                                                                        Participant

                                                                                          Hi Josh-

                                                                                          So good to see a post from you…..and considering some of your posts of the last few months, I'd say this one is a pretty good one.

                                                                                          Though patience is not easy for most of us, I'm hoping if you can muster up some., and that maybe IPI is doing its job, and we'll see more improvement in Dec. scans.

                                                                                          Will keep my eye out for your next upate!!!

                                                                                          Take care Josh!

                                                                                          Best,

                                                                                          jenny

                                                                                           

                                                                                          • November 8, 2016 at 2:53 am
                                                                                          jenny22
                                                                                          Participant

                                                                                            Hi Josh-

                                                                                            So good to see a post from you…..and considering some of your posts of the last few months, I'd say this one is a pretty good one.

                                                                                            Though patience is not easy for most of us, I'm hoping if you can muster up some., and that maybe IPI is doing its job, and we'll see more improvement in Dec. scans.

                                                                                            Will keep my eye out for your next upate!!!

                                                                                            Take care Josh!

                                                                                            Best,

                                                                                            jenny

                                                                                             

                                                                                            • November 8, 2016 at 5:32 am
                                                                                            snow white
                                                                                            Participant

                                                                                              whooopp whoooop!!!  Sounds like positive news!  So happy for you Josh, I know you have been through so much.  I keep telling my Dad about the people on  here and  how hard everyone is fighting.  Keep up the fine fight, you got this!!!!

                                                                                              • November 8, 2016 at 5:32 am
                                                                                              snow white
                                                                                              Participant

                                                                                                whooopp whoooop!!!  Sounds like positive news!  So happy for you Josh, I know you have been through so much.  I keep telling my Dad about the people on  here and  how hard everyone is fighting.  Keep up the fine fight, you got this!!!!

                                                                                                • November 8, 2016 at 5:32 am
                                                                                                snow white
                                                                                                Participant

                                                                                                  whooopp whoooop!!!  Sounds like positive news!  So happy for you Josh, I know you have been through so much.  I keep telling my Dad about the people on  here and  how hard everyone is fighting.  Keep up the fine fight, you got this!!!!

                                                                                                  • November 8, 2016 at 12:06 pm
                                                                                                  Mamapegela
                                                                                                  Participant

                                                                                                    Hi Josh-

                                                                                                    I always follow your posts closely.  What a lot you have been through.  I appreciate your candor and that you can share when you are feeling frustrated as well as when you are feeling hopeful and grateful for whatever positive developments you are having.  I've learned much from what you.

                                                                                                    So here's to stable and here's to you.  Much love and encouragement your way.

                                                                                                    Peggy

                                                                                                     

                                                                                                    • November 8, 2016 at 12:06 pm
                                                                                                    Mamapegela
                                                                                                    Participant

                                                                                                      Hi Josh-

                                                                                                      I always follow your posts closely.  What a lot you have been through.  I appreciate your candor and that you can share when you are feeling frustrated as well as when you are feeling hopeful and grateful for whatever positive developments you are having.  I've learned much from what you.

                                                                                                      So here's to stable and here's to you.  Much love and encouragement your way.

                                                                                                      Peggy

                                                                                                       

                                                                                                      • November 8, 2016 at 12:06 pm
                                                                                                      Mamapegela
                                                                                                      Participant

                                                                                                        Hi Josh-

                                                                                                        I always follow your posts closely.  What a lot you have been through.  I appreciate your candor and that you can share when you are feeling frustrated as well as when you are feeling hopeful and grateful for whatever positive developments you are having.  I've learned much from what you.

                                                                                                        So here's to stable and here's to you.  Much love and encouragement your way.

                                                                                                        Peggy

                                                                                                         

                                                                                                        • November 8, 2016 at 4:35 pm
                                                                                                        jennunicorn
                                                                                                        Participant

                                                                                                          Nothing new is good, boring scans are my favorite thing in the world these days! 

                                                                                                          As always, rooting for you and this awesome new treatment plan!

                                                                                                          Hope you have a great Thanksgiving with your family,

                                                                                                          • November 8, 2016 at 4:35 pm
                                                                                                          jennunicorn
                                                                                                          Participant

                                                                                                            Nothing new is good, boring scans are my favorite thing in the world these days! 

                                                                                                            As always, rooting for you and this awesome new treatment plan!

                                                                                                            Hope you have a great Thanksgiving with your family,

                                                                                                            • November 8, 2016 at 4:35 pm
                                                                                                            jennunicorn
                                                                                                            Participant

                                                                                                              Nothing new is good, boring scans are my favorite thing in the world these days! 

                                                                                                              As always, rooting for you and this awesome new treatment plan!

                                                                                                              Hope you have a great Thanksgiving with your family,

                                                                                                              • November 9, 2016 at 8:24 am
                                                                                                              Jubes
                                                                                                              Participant

                                                                                                                Good to hear from you josh. Keep up the fight. You have been so encouraging to us all 

                                                                                                                • November 9, 2016 at 8:24 am
                                                                                                                Jubes
                                                                                                                Participant

                                                                                                                  Good to hear from you josh. Keep up the fight. You have been so encouraging to us all 

                                                                                                                  • November 9, 2016 at 8:24 am
                                                                                                                  Jubes
                                                                                                                  Participant

                                                                                                                    Good to hear from you josh. Keep up the fight. You have been so encouraging to us all 

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