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Wife recovered from surgery and out of hospice care next step clinical trial
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Wife recovered from surgery and out of hospice care next step clinical trial

› Forums › General Melanoma Community › Wife recovered from surgery and out of hospice care next step clinical trial

  • Post
    • June 13, 2013 at 3:03 am
    5374brian
    Participant

      What a roller coaster ride my wife has been on since since April 29th. We elected surgery on April 29th which the surgeons and oncologist recommended Hospice care after being in Moffitt for 10 days of recovery. We returned home with Hospice care and pain management. We were told to make it to June 10 and with a good MRI and no more surgeries we could start the Merks – 3457 trial. The good news is MRI was good all prior mets are responding good to the WBR that she finished while recovering from surgery in hospital. We came home scared and felt beaten but we kept looking forward to 6/10.

      What a roller coaster ride my wife has been on since since April 29th. We elected surgery on April 29th which the surgeons and oncologist recommended Hospice care after being in Moffitt for 10 days of recovery. We returned home with Hospice care and pain management. We were told to make it to June 10 and with a good MRI and no more surgeries we could start the Merks – 3457 trial. The good news is MRI was good all prior mets are responding good to the WBR that she finished while recovering from surgery in hospital. We came home scared and felt beaten but we kept looking forward to 6/10.  First visit for vitals and blood work was 6/11 and now we are waiting on a call for her first infusion. With little side effects from the IPI we are told she should have just as little from the trial. Does anyone have news on how the Merk 3457 trial is going? 

    Viewing 5 reply threads
    • Replies
        • June 13, 2013 at 3:26 am
        POW
        Participant

          Hi, Brian-

          I'm so glad that Keri's surgery went well and that you are now almost in the anti-PD1 trial! That's wonderful news!

          Amanda wrote a thread called "Roll Call for Anti-PD1" about the Merck 3457 trial. Check it out at http://www.melanoma.org/community/mpip-melanoma-patients-information-page/rollcall-anti-pd1-patients

          Read Amada's posts. Her boyfriend, Randy, has done very well on this trial.

          • June 13, 2013 at 3:26 am
          POW
          Participant

            Hi, Brian-

            I'm so glad that Keri's surgery went well and that you are now almost in the anti-PD1 trial! That's wonderful news!

            Amanda wrote a thread called "Roll Call for Anti-PD1" about the Merck 3457 trial. Check it out at http://www.melanoma.org/community/mpip-melanoma-patients-information-page/rollcall-anti-pd1-patients

            Read Amada's posts. Her boyfriend, Randy, has done very well on this trial.

            • June 13, 2013 at 3:26 am
            POW
            Participant

              Hi, Brian-

              I'm so glad that Keri's surgery went well and that you are now almost in the anti-PD1 trial! That's wonderful news!

              Amanda wrote a thread called "Roll Call for Anti-PD1" about the Merck 3457 trial. Check it out at http://www.melanoma.org/community/mpip-melanoma-patients-information-page/rollcall-anti-pd1-patients

              Read Amada's posts. Her boyfriend, Randy, has done very well on this trial.

              • June 14, 2013 at 4:29 am
              Tim–MRF
              Guest

                Merck's anti-PD1 drug lambrolizumab is showing good results.  A couple of weeks ago data were released from a large Phase I study.  At the best dose 52% of patients saw significant shrinkage of tumors.

                These anti-PD1 drugs seem very promising.

                Tim–MRF

                • June 14, 2013 at 4:29 am
                Tim–MRF
                Guest

                  Merck's anti-PD1 drug lambrolizumab is showing good results.  A couple of weeks ago data were released from a large Phase I study.  At the best dose 52% of patients saw significant shrinkage of tumors.

                  These anti-PD1 drugs seem very promising.

                  Tim–MRF

                  • June 14, 2013 at 4:29 am
                  Tim–MRF
                  Guest

                    Merck's anti-PD1 drug lambrolizumab is showing good results.  A couple of weeks ago data were released from a large Phase I study.  At the best dose 52% of patients saw significant shrinkage of tumors.

                    These anti-PD1 drugs seem very promising.

                    Tim–MRF

                    • June 19, 2013 at 12:06 am
                    5374brian
                    Participant

                      thanks for the response. we hit a hurdle. Merck turned us down due to hemoglobin being low. Our oncologist at Moffitt was in discussion for days about it but no luck. We are told Keri doesnt need a transfusion. Once we heard this we were concerned of that. We now are checking with BMS for their trial to see if they have the same requirments. We believe when one door closes another will open.. Just sort of hard waiting in limbo.. 

                      • June 19, 2013 at 12:06 am
                      5374brian
                      Participant

                        thanks for the response. we hit a hurdle. Merck turned us down due to hemoglobin being low. Our oncologist at Moffitt was in discussion for days about it but no luck. We are told Keri doesnt need a transfusion. Once we heard this we were concerned of that. We now are checking with BMS for their trial to see if they have the same requirments. We believe when one door closes another will open.. Just sort of hard waiting in limbo.. 

                        • June 19, 2013 at 12:06 am
                        5374brian
                        Participant

                          thanks for the response. we hit a hurdle. Merck turned us down due to hemoglobin being low. Our oncologist at Moffitt was in discussion for days about it but no luck. We are told Keri doesnt need a transfusion. Once we heard this we were concerned of that. We now are checking with BMS for their trial to see if they have the same requirments. We believe when one door closes another will open.. Just sort of hard waiting in limbo.. 

                          • June 19, 2013 at 1:41 am
                          POW
                          Participant

                            Oh, shoot, Brian! ("Shoot" is NOT the word I want to use here!) Can't Keri catch a break?! 

                            I'm sorry. I know it's tough on both of you. You have probably already put your fist through a wall or two. I truly admire the way you have pulled yourself together and are taking up the fight again. Good for you. Keep going!

                            Catherine Poole at the Melanoma International Foundation keeps close tabs on anti-PD-1 trials. She encourages people to email her with questions about trials. Drop her a line at cpoole@melanomainternational.org

                            • June 19, 2013 at 1:41 am
                            POW
                            Participant

                              Oh, shoot, Brian! ("Shoot" is NOT the word I want to use here!) Can't Keri catch a break?! 

                              I'm sorry. I know it's tough on both of you. You have probably already put your fist through a wall or two. I truly admire the way you have pulled yourself together and are taking up the fight again. Good for you. Keep going!

                              Catherine Poole at the Melanoma International Foundation keeps close tabs on anti-PD-1 trials. She encourages people to email her with questions about trials. Drop her a line at cpoole@melanomainternational.org

                              • June 19, 2013 at 1:41 am
                              POW
                              Participant

                                Oh, shoot, Brian! ("Shoot" is NOT the word I want to use here!) Can't Keri catch a break?! 

                                I'm sorry. I know it's tough on both of you. You have probably already put your fist through a wall or two. I truly admire the way you have pulled yourself together and are taking up the fight again. Good for you. Keep going!

                                Catherine Poole at the Melanoma International Foundation keeps close tabs on anti-PD-1 trials. She encourages people to email her with questions about trials. Drop her a line at cpoole@melanomainternational.org

                                • June 19, 2013 at 2:12 am
                                5374brian
                                Participant

                                  That is the exact statement that Keri and Dr. K made separtely to me " Can't Keri catch a break!".. Did you get the email i sent you? I will send Catherine Poole an email Wednesday. 

                                  • June 19, 2013 at 2:12 am
                                  5374brian
                                  Participant

                                    That is the exact statement that Keri and Dr. K made separtely to me " Can't Keri catch a break!".. Did you get the email i sent you? I will send Catherine Poole an email Wednesday. 

                                    • June 19, 2013 at 2:12 am
                                    5374brian
                                    Participant

                                      That is the exact statement that Keri and Dr. K made separtely to me " Can't Keri catch a break!".. Did you get the email i sent you? I will send Catherine Poole an email Wednesday. 

                                      • June 19, 2013 at 6:42 pm
                                      POW
                                      Participant

                                        Brian, I never got an email message from you. Please try again. And I will also try to message you. 

                                        • June 19, 2013 at 6:42 pm
                                        POW
                                        Participant

                                          Brian, I never got an email message from you. Please try again. And I will also try to message you. 

                                          • June 19, 2013 at 6:42 pm
                                          POW
                                          Participant

                                            Brian, I never got an email message from you. Please try again. And I will also try to message you. 

                                            • June 22, 2013 at 8:49 pm
                                            5374brian
                                            Participant

                                              POW 

                                              I tried again. Did you have a chance to read it? I also contacted Catherine she gave me some suggestions of treatment in Ft Lauderdale and nashville. 

                                              • June 22, 2013 at 8:49 pm
                                              5374brian
                                              Participant

                                                POW 

                                                I tried again. Did you have a chance to read it? I also contacted Catherine she gave me some suggestions of treatment in Ft Lauderdale and nashville. 

                                                • June 22, 2013 at 8:49 pm
                                                5374brian
                                                Participant

                                                  POW 

                                                  I tried again. Did you have a chance to read it? I also contacted Catherine she gave me some suggestions of treatment in Ft Lauderdale and nashville. 

                                                  • June 24, 2013 at 11:38 pm
                                                  POW
                                                  Participant

                                                    Brian, I just found your email in my "Junk Mail" folder and sent you a reply. I feel like such an idiot for not checking there sooner. Sorry.

                                                    What trials did Catherine suggest in Ft. Lauderdale and Nashville? Do you know if they are Phase 1/2 (i.e., not proven efffective but no control group) or Phase 3 (i.e., proven effective but with a control group).

                                                    • June 24, 2013 at 11:38 pm
                                                    POW
                                                    Participant

                                                      Brian, I just found your email in my "Junk Mail" folder and sent you a reply. I feel like such an idiot for not checking there sooner. Sorry.

                                                      What trials did Catherine suggest in Ft. Lauderdale and Nashville? Do you know if they are Phase 1/2 (i.e., not proven efffective but no control group) or Phase 3 (i.e., proven effective but with a control group).

                                                      • June 24, 2013 at 11:38 pm
                                                      POW
                                                      Participant

                                                        Brian, I just found your email in my "Junk Mail" folder and sent you a reply. I feel like such an idiot for not checking there sooner. Sorry.

                                                        What trials did Catherine suggest in Ft. Lauderdale and Nashville? Do you know if they are Phase 1/2 (i.e., not proven efffective but no control group) or Phase 3 (i.e., proven effective but with a control group).

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