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Sharing my experience at MD Anderson
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Sharing my experience at MD Anderson

› Forums › General Melanoma Community › Sharing my experience at MD Anderson

  • Post
    • April 21, 2013 at 12:01 am
    Becky C.
    Participant

      Hi , everyone. I just returned from MD Anderson and wanted to share my experience. I met with Dr. Wen-Jen Hu, and liked her very much. It was such a good feeling to talk to someone so knowledgeable about melanoma. We are looking at a clinical trial starting in May for Anti-Pd 1, but I have to have a brain MRI first.My brain mets have to be stable.They were stable on my last petscan so we hope they still are.  Is there anyone out there that has had this treatment? I would really like to know your experience. The research i have read about it sounds very positive.

      Hi , everyone. I just returned from MD Anderson and wanted to share my experience. I met with Dr. Wen-Jen Hu, and liked her very much. It was such a good feeling to talk to someone so knowledgeable about melanoma. We are looking at a clinical trial starting in May for Anti-Pd 1, but I have to have a brain MRI first.My brain mets have to be stable.They were stable on my last petscan so we hope they still are.  Is there anyone out there that has had this treatment? I would really like to know your experience. The research i have read about it sounds very positive.

    Viewing 5 reply threads
    • Replies
        • April 21, 2013 at 2:25 am
        mbaelaporte
        Participant

          Hey glad to hear you are inspired & feeling optimistic

          hoping you hear from some being treated w / anti PD 1

          I am just back from consent meetings, biopsy, brain MRI , labs & scans to qualify for Merck Pd1 trial & I think I made the team!?  Mine is a commuter scenario ; Tacoma, Wa to TheAngelesClinic ;  you go where you gotta go

          anybody who might be able to chime in on helping w / clinical trial travel costs please chime in – hoping for response from needymeds.com

          Hope May comes soon enough and all can fall into place for you! 

          • April 21, 2013 at 2:25 am
          mbaelaporte
          Participant

            Hey glad to hear you are inspired & feeling optimistic

            hoping you hear from some being treated w / anti PD 1

            I am just back from consent meetings, biopsy, brain MRI , labs & scans to qualify for Merck Pd1 trial & I think I made the team!?  Mine is a commuter scenario ; Tacoma, Wa to TheAngelesClinic ;  you go where you gotta go

            anybody who might be able to chime in on helping w / clinical trial travel costs please chime in – hoping for response from needymeds.com

            Hope May comes soon enough and all can fall into place for you! 

            • April 21, 2013 at 2:25 am
            mbaelaporte
            Participant

              Hey glad to hear you are inspired & feeling optimistic

              hoping you hear from some being treated w / anti PD 1

              I am just back from consent meetings, biopsy, brain MRI , labs & scans to qualify for Merck Pd1 trial & I think I made the team!?  Mine is a commuter scenario ; Tacoma, Wa to TheAngelesClinic ;  you go where you gotta go

              anybody who might be able to chime in on helping w / clinical trial travel costs please chime in – hoping for response from needymeds.com

              Hope May comes soon enough and all can fall into place for you! 

              • April 21, 2013 at 4:48 pm
              Bubbles
              Participant

                So glad you had a good experience at MD Anderson.  If you do a search on this forum (box on top right of your screen) and enter anti-PD1 or PD1 you will find many stories, comments and questions regarding same.  I and many others that comment occasionally are on anti-PD1 trials.  My blog tells the story of my past two years and three months on an anti-PD1 trial at Moffitt.  Let me know if you have questions I might be able to answer.  Wishing you the best. C

                  • April 21, 2013 at 5:30 pm
                  audgator
                  Participant

                    Ditto on what Bubbles said. I am in another arm of the same trial. I'm in the maintenance phase. I got a little concerned after my last check up, but cooler heads here talked me down. I and many others are doping fine, Best wishes.   Dan

                    • April 21, 2013 at 5:33 pm
                    audgator
                    Participant

                      Uh, that is we are DOING fine, although…..???

                      Dan

                      • April 21, 2013 at 11:01 pm
                      Bubbles
                      Participant

                        I don't know, Dan!!!  Pretty sure we're doping!!!  Hee hee!  C

                        • April 21, 2013 at 11:01 pm
                        Bubbles
                        Participant

                          I don't know, Dan!!!  Pretty sure we're doping!!!  Hee hee!  C

                          • April 21, 2013 at 11:01 pm
                          Bubbles
                          Participant

                            I don't know, Dan!!!  Pretty sure we're doping!!!  Hee hee!  C

                            • April 21, 2013 at 5:33 pm
                            audgator
                            Participant

                              Uh, that is we are DOING fine, although…..???

                              Dan

                              • April 21, 2013 at 5:33 pm
                              audgator
                              Participant

                                Uh, that is we are DOING fine, although…..???

                                Dan

                                • April 21, 2013 at 5:30 pm
                                audgator
                                Participant

                                  Ditto on what Bubbles said. I am in another arm of the same trial. I'm in the maintenance phase. I got a little concerned after my last check up, but cooler heads here talked me down. I and many others are doping fine, Best wishes.   Dan

                                  • April 21, 2013 at 5:30 pm
                                  audgator
                                  Participant

                                    Ditto on what Bubbles said. I am in another arm of the same trial. I'm in the maintenance phase. I got a little concerned after my last check up, but cooler heads here talked me down. I and many others are doping fine, Best wishes.   Dan

                                    • April 21, 2013 at 11:10 pm
                                    5374brian
                                    Participant

                                      Bubbles .. My wife has been treated at Moffitt since Dec. 18, 2012. She started IPI in Jan 2013. We started with Dr. Sondak and then refered to Dr. Kudchadkar. After the 12 weeks she just had her MRI and PET Scans. Not enough posititve response to the IPI so far. They have decided to do a WBR starting the 22nd for 10 days. The next plan Dr. K menetioned was a PD-1 treatment. I am glad to see that you have had a great response. Thanks for sharing your story. I started going back through your blog history also. I think it is wonderul. 

                                      • April 21, 2013 at 11:24 pm
                                      Bubbles
                                      Participant

                                        Thanks for your sweet comments. Sorry things are a bit tough for you and your wife just now.  Hang in there.  I know that "one more thing"  gets you almost to the breaking point sometimes.  As you can probably tell from my blog…I am followed by Dr. Weber…but all the docs there are very good at what they do.  Wishing you and your wife the very best!!!!  c

                                        • April 21, 2013 at 11:24 pm
                                        Bubbles
                                        Participant

                                          Thanks for your sweet comments. Sorry things are a bit tough for you and your wife just now.  Hang in there.  I know that "one more thing"  gets you almost to the breaking point sometimes.  As you can probably tell from my blog…I am followed by Dr. Weber…but all the docs there are very good at what they do.  Wishing you and your wife the very best!!!!  c

                                          • April 21, 2013 at 11:24 pm
                                          Bubbles
                                          Participant

                                            Thanks for your sweet comments. Sorry things are a bit tough for you and your wife just now.  Hang in there.  I know that "one more thing"  gets you almost to the breaking point sometimes.  As you can probably tell from my blog…I am followed by Dr. Weber…but all the docs there are very good at what they do.  Wishing you and your wife the very best!!!!  c

                                            • April 21, 2013 at 11:10 pm
                                            5374brian
                                            Participant

                                              Bubbles .. My wife has been treated at Moffitt since Dec. 18, 2012. She started IPI in Jan 2013. We started with Dr. Sondak and then refered to Dr. Kudchadkar. After the 12 weeks she just had her MRI and PET Scans. Not enough posititve response to the IPI so far. They have decided to do a WBR starting the 22nd for 10 days. The next plan Dr. K menetioned was a PD-1 treatment. I am glad to see that you have had a great response. Thanks for sharing your story. I started going back through your blog history also. I think it is wonderul. 

                                              • April 21, 2013 at 11:10 pm
                                              5374brian
                                              Participant

                                                Bubbles .. My wife has been treated at Moffitt since Dec. 18, 2012. She started IPI in Jan 2013. We started with Dr. Sondak and then refered to Dr. Kudchadkar. After the 12 weeks she just had her MRI and PET Scans. Not enough posititve response to the IPI so far. They have decided to do a WBR starting the 22nd for 10 days. The next plan Dr. K menetioned was a PD-1 treatment. I am glad to see that you have had a great response. Thanks for sharing your story. I started going back through your blog history also. I think it is wonderul. 

                                              • April 21, 2013 at 4:48 pm
                                              Bubbles
                                              Participant

                                                So glad you had a good experience at MD Anderson.  If you do a search on this forum (box on top right of your screen) and enter anti-PD1 or PD1 you will find many stories, comments and questions regarding same.  I and many others that comment occasionally are on anti-PD1 trials.  My blog tells the story of my past two years and three months on an anti-PD1 trial at Moffitt.  Let me know if you have questions I might be able to answer.  Wishing you the best. C

                                                • April 21, 2013 at 4:48 pm
                                                Bubbles
                                                Participant

                                                  So glad you had a good experience at MD Anderson.  If you do a search on this forum (box on top right of your screen) and enter anti-PD1 or PD1 you will find many stories, comments and questions regarding same.  I and many others that comment occasionally are on anti-PD1 trials.  My blog tells the story of my past two years and three months on an anti-PD1 trial at Moffitt.  Let me know if you have questions I might be able to answer.  Wishing you the best. C

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