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Anyone heard from JamieTH29?
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Anyone heard from JamieTH29?

› Forums › General Melanoma Community › Anyone heard from JamieTH29?

  • Post
    • May 10, 2016 at 2:13 am
    maryb-z
    Participant

      I connectected with Jamie here, through email amd texting. I haven't received any resposne from him lately and haven't seen any posts from him. Has anyone heard? I know he consulted with Bubbles (Celeste) a lot. Thanks. Just concerned.

    Viewing 5 reply threads
    • Replies
        • May 10, 2016 at 5:18 am
        jenny22
        Participant

          Hi MaAry- I too have been wondering about he is doing.  His last post was on April 7th and repsonse to one of Mats…….

          Hope he did ok after the SRS, with Nivo to follow.

          Jamie, please  let us know how you are.

           

          best,

          jenny

            • May 10, 2016 at 5:19 am
            jenny22
            Participant

              please forgive all the typos…..its late and i am typing too fast!

              jenny

              • May 10, 2016 at 5:19 am
              jenny22
              Participant

                please forgive all the typos…..its late and i am typing too fast!

                jenny

                • May 10, 2016 at 5:19 am
                jenny22
                Participant

                  please forgive all the typos…..its late and i am typing too fast!

                  jenny

                • May 10, 2016 at 5:18 am
                jenny22
                Participant

                  Hi MaAry- I too have been wondering about he is doing.  His last post was on April 7th and repsonse to one of Mats…….

                  Hope he did ok after the SRS, with Nivo to follow.

                  Jamie, please  let us know how you are.

                   

                  best,

                  jenny

                  • May 10, 2016 at 5:18 am
                  jenny22
                  Participant

                    Hi MaAry- I too have been wondering about he is doing.  His last post was on April 7th and repsonse to one of Mats…….

                    Hope he did ok after the SRS, with Nivo to follow.

                    Jamie, please  let us know how you are.

                     

                    best,

                    jenny

                    • May 10, 2016 at 1:57 pm
                    jamieth29
                    Participant
                      Hi Mary,Jenny
                      I’m still here. Mary I apologize for not not getting back to you and thank you guys for asking about me. I have had a pretty rough month. First found out that nivo was not working as I had another recurrence on my leg. Then was hit with more bad news with mri. Mri showed 2 of the 3 spots that had srs had shrunk to 1mm but the 3rd had ruptured and was bleeding also another new spot has shown up. They had just started me on ipi/nivo combo with 1 dose but decided we needed something to work fast so they pulled me off the immunotherapy and put me back on braf drugs. Last year I was on them for 4 months and had a good response and no side effects this time for whatever reason I had major side effects and almost ended up being admitted to hospital. Low blood pressure,chills,headaches,Ldh and liver function were all jacked up you name it I had it. Mostly all my fault for letting it go to far when I knew something was wrong. Feel way better now and restarted pills today so we’ll see what happens. Plan is another mri next week and probably srs to the 2 problem spots then it sounds like we may try ipi/nivo again. I’ve had a lot of meds pumped through me in a short amount of time so that was probably part of the issue also. Again thank you guys for worrying about me it means a lot. I’ve been reading the board I just haven’t had the ambition to post.
                        • May 11, 2016 at 1:11 am
                        maryb-z
                        Participant

                          Damn Jamie! I hate that it's been so rough on you! I have been thinking about you and praying you get a reprieve from this disease. Happy there is a plan in place and confident those pills will knock that melanoma straight to hell! Please keep us all posted and I know I have offered before and will keep offering, but seriously how I can help you and your family? My son just got a 9 week old English Cream Golden Retriever, if you like puppies or your kids do I could stop over with her. She's adorable and her name is Zoey! Hang in there. I wish I could make this all go away!

                          • May 11, 2016 at 1:11 am
                          maryb-z
                          Participant

                            Damn Jamie! I hate that it's been so rough on you! I have been thinking about you and praying you get a reprieve from this disease. Happy there is a plan in place and confident those pills will knock that melanoma straight to hell! Please keep us all posted and I know I have offered before and will keep offering, but seriously how I can help you and your family? My son just got a 9 week old English Cream Golden Retriever, if you like puppies or your kids do I could stop over with her. She's adorable and her name is Zoey! Hang in there. I wish I could make this all go away!

                            • May 11, 2016 at 1:11 am
                            maryb-z
                            Participant

                              Damn Jamie! I hate that it's been so rough on you! I have been thinking about you and praying you get a reprieve from this disease. Happy there is a plan in place and confident those pills will knock that melanoma straight to hell! Please keep us all posted and I know I have offered before and will keep offering, but seriously how I can help you and your family? My son just got a 9 week old English Cream Golden Retriever, if you like puppies or your kids do I could stop over with her. She's adorable and her name is Zoey! Hang in there. I wish I could make this all go away!

                            • May 10, 2016 at 1:57 pm
                            jamieth29
                            Participant
                              Hi Mary,Jenny
                              I’m still here. Mary I apologize for not not getting back to you and thank you guys for asking about me. I have had a pretty rough month. First found out that nivo was not working as I had another recurrence on my leg. Then was hit with more bad news with mri. Mri showed 2 of the 3 spots that had srs had shrunk to 1mm but the 3rd had ruptured and was bleeding also another new spot has shown up. They had just started me on ipi/nivo combo with 1 dose but decided we needed something to work fast so they pulled me off the immunotherapy and put me back on braf drugs. Last year I was on them for 4 months and had a good response and no side effects this time for whatever reason I had major side effects and almost ended up being admitted to hospital. Low blood pressure,chills,headaches,Ldh and liver function were all jacked up you name it I had it. Mostly all my fault for letting it go to far when I knew something was wrong. Feel way better now and restarted pills today so we’ll see what happens. Plan is another mri next week and probably srs to the 2 problem spots then it sounds like we may try ipi/nivo again. I’ve had a lot of meds pumped through me in a short amount of time so that was probably part of the issue also. Again thank you guys for worrying about me it means a lot. I’ve been reading the board I just haven’t had the ambition to post.
                              • May 10, 2016 at 1:57 pm
                              jamieth29
                              Participant
                                Hi Mary,Jenny
                                I’m still here. Mary I apologize for not not getting back to you and thank you guys for asking about me. I have had a pretty rough month. First found out that nivo was not working as I had another recurrence on my leg. Then was hit with more bad news with mri. Mri showed 2 of the 3 spots that had srs had shrunk to 1mm but the 3rd had ruptured and was bleeding also another new spot has shown up. They had just started me on ipi/nivo combo with 1 dose but decided we needed something to work fast so they pulled me off the immunotherapy and put me back on braf drugs. Last year I was on them for 4 months and had a good response and no side effects this time for whatever reason I had major side effects and almost ended up being admitted to hospital. Low blood pressure,chills,headaches,Ldh and liver function were all jacked up you name it I had it. Mostly all my fault for letting it go to far when I knew something was wrong. Feel way better now and restarted pills today so we’ll see what happens. Plan is another mri next week and probably srs to the 2 problem spots then it sounds like we may try ipi/nivo again. I’ve had a lot of meds pumped through me in a short amount of time so that was probably part of the issue also. Again thank you guys for worrying about me it means a lot. I’ve been reading the board I just haven’t had the ambition to post.
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