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Searching for fellow fighters

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  • Post
    • July 14, 2012 at 1:47 am
    aldakota22
    Participant

       Does anyone have any info on 2 fighters i have not seen any recent posts.They are Lisa13 and Jeff son of Bridette.Know they have a very tough fight and was wondering how they are doing.Been saying an extra prayer for both. Beat the Beast.     Al

       Does anyone have any info on 2 fighters i have not seen any recent posts.They are Lisa13 and Jeff son of Bridette.Know they have a very tough fight and was wondering how they are doing.Been saying an extra prayer for both. Beat the Beast.     Al

    Viewing 5 reply threads
    • Replies
        • July 14, 2012 at 3:40 am
        lhaley
        Participant

          Bridgette posted 7/10 however she didn't say how Jeff was doing.  It has been weeks now since Lisa. I also have been looking for her at another site and she hasn't posted their either. I was able to find Lisa's e-mail on that site and hasn't responded.   Lisa was supposed to go to Moffit approx 3 weeks after her crainectomy – I'm quite concerned because I think she would have let us know if she got on the anti-pd1 trial if possible. 

          Worried also,

          Linda

            • July 14, 2012 at 5:45 pm
            Karin L
            Participant

              Ditto. 

              • July 14, 2012 at 5:45 pm
              Karin L
              Participant

                Ditto. 

                • July 14, 2012 at 5:45 pm
                Karin L
                Participant

                  Ditto. 

                  • July 15, 2012 at 2:52 am
                  kylez
                  Participant

                    Lisa and I have some similarities in our treatment histories — GammaKnife, IPI, and Canadian neurosurgeons (mine in Californian now.) Hope she just wanted a break, and that she's resting and healing. 

                     

                    • July 15, 2012 at 2:52 am
                    kylez
                    Participant

                      Lisa and I have some similarities in our treatment histories — GammaKnife, IPI, and Canadian neurosurgeons (mine in Californian now.) Hope she just wanted a break, and that she's resting and healing. 

                       

                      • July 15, 2012 at 2:52 am
                      kylez
                      Participant

                        Lisa and I have some similarities in our treatment histories — GammaKnife, IPI, and Canadian neurosurgeons (mine in Californian now.) Hope she just wanted a break, and that she's resting and healing. 

                         

                      • July 14, 2012 at 3:40 am
                      lhaley
                      Participant

                        Bridgette posted 7/10 however she didn't say how Jeff was doing.  It has been weeks now since Lisa. I also have been looking for her at another site and she hasn't posted their either. I was able to find Lisa's e-mail on that site and hasn't responded.   Lisa was supposed to go to Moffit approx 3 weeks after her crainectomy – I'm quite concerned because I think she would have let us know if she got on the anti-pd1 trial if possible. 

                        Worried also,

                        Linda

                        • July 14, 2012 at 3:40 am
                        lhaley
                        Participant

                          Bridgette posted 7/10 however she didn't say how Jeff was doing.  It has been weeks now since Lisa. I also have been looking for her at another site and she hasn't posted their either. I was able to find Lisa's e-mail on that site and hasn't responded.   Lisa was supposed to go to Moffit approx 3 weeks after her crainectomy – I'm quite concerned because I think she would have let us know if she got on the anti-pd1 trial if possible. 

                          Worried also,

                          Linda

                          • July 14, 2012 at 11:26 pm
                          s Mom
                          Participant

                            Hi Al,

                            It's hard to post good news when I have been reading so many sad posts as of late.   It just breaks my heart to hear about so many brave people fighting and having a rough time.  With that said, Jeff is doing really well.  His last scan (June 14) show significant tumor shrinkage in his liver (only 4 measurable tumors and the largest is 1.5 cm).  His lungs and brain (MRI) are all clear and his LDH is way down (150).  All other blood tests are normal.  He's eating and gaining weight (just about 1 pound a week).  He's up to 166 and he is 6'2" so he is still pretty skinny, but he looks good!!  And his hair is growing back!!  He does have some side pain from his SBRT liver radiation  – they radiated his liver before IL2 back in February and March.  His onc thinks the pain is ZEL interaction with radiated tissue, but it is manageable with ibuprofen.  His next scans are in September.  He's living life, going to work and enjoying the summer with his wife and kids.   We are so grateful for each blessed day (each blessed minute, really).  Keep him in your thoughts and prayers…we are still fighting and are hoping and praying for that durable remission.  Praying for all warriors out there – keep up the good fight and God Bless!

                            Bridgette (Jeff's Mom)

                            • July 14, 2012 at 11:26 pm
                            s Mom
                            Participant

                              Hi Al,

                              It's hard to post good news when I have been reading so many sad posts as of late.   It just breaks my heart to hear about so many brave people fighting and having a rough time.  With that said, Jeff is doing really well.  His last scan (June 14) show significant tumor shrinkage in his liver (only 4 measurable tumors and the largest is 1.5 cm).  His lungs and brain (MRI) are all clear and his LDH is way down (150).  All other blood tests are normal.  He's eating and gaining weight (just about 1 pound a week).  He's up to 166 and he is 6'2" so he is still pretty skinny, but he looks good!!  And his hair is growing back!!  He does have some side pain from his SBRT liver radiation  – they radiated his liver before IL2 back in February and March.  His onc thinks the pain is ZEL interaction with radiated tissue, but it is manageable with ibuprofen.  His next scans are in September.  He's living life, going to work and enjoying the summer with his wife and kids.   We are so grateful for each blessed day (each blessed minute, really).  Keep him in your thoughts and prayers…we are still fighting and are hoping and praying for that durable remission.  Praying for all warriors out there – keep up the good fight and God Bless!

                              Bridgette (Jeff's Mom)

                                • July 15, 2012 at 1:49 am
                                aldakota22
                                Participant

                                  Thank God.Much better to read such a wonderful uplifting post.May they only get better and better.You keep us up to speed on Jeff.Will keep in my prayers.Again very happy for you.      Al

                                  • July 15, 2012 at 1:49 am
                                  aldakota22
                                  Participant

                                    Thank God.Much better to read such a wonderful uplifting post.May they only get better and better.You keep us up to speed on Jeff.Will keep in my prayers.Again very happy for you.      Al

                                    • July 15, 2012 at 1:49 am
                                    aldakota22
                                    Participant

                                      Thank God.Much better to read such a wonderful uplifting post.May they only get better and better.You keep us up to speed on Jeff.Will keep in my prayers.Again very happy for you.      Al

                                      • July 15, 2012 at 2:22 am
                                      JC
                                      Participant

                                        Bridgette, you would recommend Dr Kaufman at Rush?  I'm also in the Chicago area, I know there is U of Chicago, Loyola, Northwestern, Lutheran General, etc….but you'd recommend Kaufman at Rush?  Also, is 150 LDH normal?  I had mine tested and my results said 0-200 was the normal range. . mine was like 167. . so I thought that was normal, but is that something I should be concerned about? 

                                        Stage I for a year

                                        • July 15, 2012 at 2:22 am
                                        JC
                                        Participant

                                          Bridgette, you would recommend Dr Kaufman at Rush?  I'm also in the Chicago area, I know there is U of Chicago, Loyola, Northwestern, Lutheran General, etc….but you'd recommend Kaufman at Rush?  Also, is 150 LDH normal?  I had mine tested and my results said 0-200 was the normal range. . mine was like 167. . so I thought that was normal, but is that something I should be concerned about? 

                                          Stage I for a year

                                          • July 15, 2012 at 2:22 am
                                          JC
                                          Participant

                                            Bridgette, you would recommend Dr Kaufman at Rush?  I'm also in the Chicago area, I know there is U of Chicago, Loyola, Northwestern, Lutheran General, etc….but you'd recommend Kaufman at Rush?  Also, is 150 LDH normal?  I had mine tested and my results said 0-200 was the normal range. . mine was like 167. . so I thought that was normal, but is that something I should be concerned about? 

                                            Stage I for a year

                                            • July 15, 2012 at 3:12 am
                                            s Mom
                                            Participant

                                              Dear Anonymous,

                                              Yes – Dr. Kaufman is excellent.  He is very kind and very compassionate.

                                              Dr. Sigrid Hallemeyer at Lutheran General is also good 🙂

                                              Your LDH is normal – nothing to worry about.  

                                              Hope that helps.

                                              Bridgette (Jeff's Mom)

                                              • July 15, 2012 at 3:12 am
                                              s Mom
                                              Participant

                                                Dear Anonymous,

                                                Yes – Dr. Kaufman is excellent.  He is very kind and very compassionate.

                                                Dr. Sigrid Hallemeyer at Lutheran General is also good 🙂

                                                Your LDH is normal – nothing to worry about.  

                                                Hope that helps.

                                                Bridgette (Jeff's Mom)

                                                • July 15, 2012 at 3:12 am
                                                s Mom
                                                Participant

                                                  Dear Anonymous,

                                                  Yes – Dr. Kaufman is excellent.  He is very kind and very compassionate.

                                                  Dr. Sigrid Hallemeyer at Lutheran General is also good 🙂

                                                  Your LDH is normal – nothing to worry about.  

                                                  Hope that helps.

                                                  Bridgette (Jeff's Mom)

                                                  • July 15, 2012 at 11:39 am
                                                  JC
                                                  Participant

                                                    Thanks.  Is Kaufman involved with or have access to the most current clinical trials at Rush?  Or, if not, does he try to find ones for his patients at other places?  Is he among the best in Chicago in terms of cutting edge science/research, new therapies, etc.?

                                                    • July 16, 2012 at 5:05 am
                                                    s Mom
                                                    Participant

                                                      Unfortunately, Chicago is considered a "second tier" melanoma center.  If you want cutting edge clinical trials, you have to go elsewhere.  Gajewski at U of C has a few that Dr. Kaufman doesn't have (BRAF and MEK combo and some vaccines).  

                                                      Hope that helps.

                                                      Bridgette (Jeff's Mom)

                                                      • July 16, 2012 at 5:05 am
                                                      s Mom
                                                      Participant

                                                        Unfortunately, Chicago is considered a "second tier" melanoma center.  If you want cutting edge clinical trials, you have to go elsewhere.  Gajewski at U of C has a few that Dr. Kaufman doesn't have (BRAF and MEK combo and some vaccines).  

                                                        Hope that helps.

                                                        Bridgette (Jeff's Mom)

                                                        • July 16, 2012 at 9:29 am
                                                        JC
                                                        Participant

                                                          Have you tried going somewhere like Sloan Kettering or MD Anderson?  I know constantly going from Chicago to NY or Houston isn't easy, but if they have the most current trials, etc. . .

                                                          • July 16, 2012 at 9:29 am
                                                          JC
                                                          Participant

                                                            Have you tried going somewhere like Sloan Kettering or MD Anderson?  I know constantly going from Chicago to NY or Houston isn't easy, but if they have the most current trials, etc. . .

                                                            • July 16, 2012 at 9:29 am
                                                            JC
                                                            Participant

                                                              Have you tried going somewhere like Sloan Kettering or MD Anderson?  I know constantly going from Chicago to NY or Houston isn't easy, but if they have the most current trials, etc. . .

                                                              • July 16, 2012 at 5:05 am
                                                              s Mom
                                                              Participant

                                                                Unfortunately, Chicago is considered a "second tier" melanoma center.  If you want cutting edge clinical trials, you have to go elsewhere.  Gajewski at U of C has a few that Dr. Kaufman doesn't have (BRAF and MEK combo and some vaccines).  

                                                                Hope that helps.

                                                                Bridgette (Jeff's Mom)

                                                                • July 15, 2012 at 11:39 am
                                                                JC
                                                                Participant

                                                                  Thanks.  Is Kaufman involved with or have access to the most current clinical trials at Rush?  Or, if not, does he try to find ones for his patients at other places?  Is he among the best in Chicago in terms of cutting edge science/research, new therapies, etc.?

                                                                  • July 15, 2012 at 11:39 am
                                                                  JC
                                                                  Participant

                                                                    Thanks.  Is Kaufman involved with or have access to the most current clinical trials at Rush?  Or, if not, does he try to find ones for his patients at other places?  Is he among the best in Chicago in terms of cutting edge science/research, new therapies, etc.?

                                                                    • September 2, 2012 at 4:30 am
                                                                    mclaus23
                                                                    Participant
                                                                      My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
                                                                      • September 2, 2012 at 4:36 am
                                                                      mclaus23
                                                                      Participant
                                                                        and he was recommended by sloan-kettering so we did not have to travel. He is well aware of any cutting edge treatment (probably has known of them for ‘light years’ before us.)The dr is unreal. You can tell he lives and breathes melanoma treatments and explains everthing in great detail.
                                                                        • September 2, 2012 at 4:36 am
                                                                        mclaus23
                                                                        Participant
                                                                          and he was recommended by sloan-kettering so we did not have to travel. He is well aware of any cutting edge treatment (probably has known of them for ‘light years’ before us.)The dr is unreal. You can tell he lives and breathes melanoma treatments and explains everthing in great detail.
                                                                          • September 2, 2012 at 4:36 am
                                                                          mclaus23
                                                                          Participant
                                                                            and he was recommended by sloan-kettering so we did not have to travel. He is well aware of any cutting edge treatment (probably has known of them for ‘light years’ before us.)The dr is unreal. You can tell he lives and breathes melanoma treatments and explains everthing in great detail.
                                                                            • September 2, 2012 at 4:30 am
                                                                            mclaus23
                                                                            Participant
                                                                              My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
                                                                              • September 2, 2012 at 4:30 am
                                                                              mclaus23
                                                                              Participant
                                                                                My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
                                                                                • September 2, 2012 at 4:31 am
                                                                                mclaus23
                                                                                Participant
                                                                                  My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
                                                                                  • September 2, 2012 at 4:31 am
                                                                                  mclaus23
                                                                                  Participant
                                                                                    My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
                                                                                    • September 2, 2012 at 4:31 am
                                                                                    mclaus23
                                                                                    Participant
                                                                                      My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
                                                                                      • November 25, 2012 at 11:29 pm
                                                                                      JC
                                                                                      Participant

                                                                                        Where did Jeff end up going outside of Chicago?

                                                                                        • November 25, 2012 at 11:29 pm
                                                                                        JC
                                                                                        Participant

                                                                                          Where did Jeff end up going outside of Chicago?

                                                                                          • November 25, 2012 at 11:29 pm
                                                                                          JC
                                                                                          Participant

                                                                                            Where did Jeff end up going outside of Chicago?

                                                                                          • July 14, 2012 at 11:26 pm
                                                                                          s Mom
                                                                                          Participant

                                                                                            Hi Al,

                                                                                            It's hard to post good news when I have been reading so many sad posts as of late.   It just breaks my heart to hear about so many brave people fighting and having a rough time.  With that said, Jeff is doing really well.  His last scan (June 14) show significant tumor shrinkage in his liver (only 4 measurable tumors and the largest is 1.5 cm).  His lungs and brain (MRI) are all clear and his LDH is way down (150).  All other blood tests are normal.  He's eating and gaining weight (just about 1 pound a week).  He's up to 166 and he is 6'2" so he is still pretty skinny, but he looks good!!  And his hair is growing back!!  He does have some side pain from his SBRT liver radiation  – they radiated his liver before IL2 back in February and March.  His onc thinks the pain is ZEL interaction with radiated tissue, but it is manageable with ibuprofen.  His next scans are in September.  He's living life, going to work and enjoying the summer with his wife and kids.   We are so grateful for each blessed day (each blessed minute, really).  Keep him in your thoughts and prayers…we are still fighting and are hoping and praying for that durable remission.  Praying for all warriors out there – keep up the good fight and God Bless!

                                                                                            Bridgette (Jeff's Mom)

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