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Scary PET Results
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Scary PET Results

› Forums › General Melanoma Community › Scary PET Results

  • Post
    • February 10, 2014 at 6:32 pm
    Michelem
    Participant

      Today we learned that the melanoma has spread to Don's liver and bones – this just since his last PET scan in December.

      he is also getting his first ipi infusion today. Doc says it can be 25% effective! even against such an aggressive spread.

      plans for radiation have been cancelled. PD-1 trial is closed.  Our specialist has mentioned biochemotherapy, but is concerned because of Don's age – 72.

      i feel we are getting good attention and care – but that there simply is no clear solution. Has anyone with liver and bone mets had good results with ipi? I am looking for a dose of hope.  mm

    Viewing 2 reply threads
    • Replies
        • February 11, 2014 at 2:23 pm
        Maureen038
        Participant

          I'm so sorry you are dealing with this latest news Michele. I don't have any treatment advice, but I am sending prayers your way that ipi will work well for Don. Take care of yourself too as best as you can. Hugs!!!

          Maureen

          • February 11, 2014 at 2:23 pm
          Maureen038
          Participant

            I'm so sorry you are dealing with this latest news Michele. I don't have any treatment advice, but I am sending prayers your way that ipi will work well for Don. Take care of yourself too as best as you can. Hugs!!!

            Maureen

              • February 11, 2014 at 2:26 pm
              Michelem
              Participant

                Thank you, Maureen.  I am so scared I feel ill. He is dealing with it like such a trooper. Just hope the ipi will work for him, because I can't imagine life without him.

                • February 11, 2014 at 2:41 pm
                Maureen038
                Participant

                  Michele,

                  I know how agonizing and scary it is to watch your best friend and husband go through this journey. My husband has scans next week and I'm already a nervous wreck because he's been off medicine since December because of hemolytic anemia! I try to take it a day at a time. I am also on anxiety medicine which helps so much. If you are not sure about the treatment you can always email Dr. Weber at Moffitt, Dr. Michael Atkins at Georgetown or Dr. Rosenberg at NIH. They all personally answer their emails and may have different advice. For myself, I am attending a caregivers support group which helps me see I am NOT alone. This site is also wonderful because many people truly care. Please email me anytime at [email protected]. Sending extra prayers your way!!

                  Maureen

                  • February 11, 2014 at 3:38 pm
                  Michelem
                  Participant

                    Thank you, Maureen! Wondering – where you are located? San Diego area?  We are in San Francisco, so seeing a specialist in San Francisco . . . I feel like we are getting the best treatment available, certainly in line with what I read here.  Just that one wants that definitive absolute answer.

                    • February 11, 2014 at 3:38 pm
                    Michelem
                    Participant

                      Thank you, Maureen! Wondering – where you are located? San Diego area?  We are in San Francisco, so seeing a specialist in San Francisco . . . I feel like we are getting the best treatment available, certainly in line with what I read here.  Just that one wants that definitive absolute answer.

                      • February 11, 2014 at 3:38 pm
                      Michelem
                      Participant

                        Thank you, Maureen! Wondering – where you are located? San Diego area?  We are in San Francisco, so seeing a specialist in San Francisco . . . I feel like we are getting the best treatment available, certainly in line with what I read here.  Just that one wants that definitive absolute answer.

                        • February 11, 2014 at 8:58 pm
                        Maureen038
                        Participant

                          Michele,

                            I live near Washington DC. If you need advice on a west coast specialist, just make a new topic. We did look into a trial with Dr. Susan Knox at Stanford that combined ipi with radiation. I'm not sure if it is still a trial. Best wishes!

                          Maureen

                          • February 11, 2014 at 8:58 pm
                          Maureen038
                          Participant

                            Michele,

                              I live near Washington DC. If you need advice on a west coast specialist, just make a new topic. We did look into a trial with Dr. Susan Knox at Stanford that combined ipi with radiation. I'm not sure if it is still a trial. Best wishes!

                            Maureen

                            • February 11, 2014 at 9:23 pm
                            Michelem
                            Participant

                              Thanks, Maureen, yes, we have researched west coast specialists and are currently working with Dr David Minor in SF. Travel further would be a problem because of my husand's serious lymphedema.

                              • February 11, 2014 at 9:23 pm
                              Michelem
                              Participant

                                Thanks, Maureen, yes, we have researched west coast specialists and are currently working with Dr David Minor in SF. Travel further would be a problem because of my husand's serious lymphedema.

                                • February 11, 2014 at 9:23 pm
                                Michelem
                                Participant

                                  Thanks, Maureen, yes, we have researched west coast specialists and are currently working with Dr David Minor in SF. Travel further would be a problem because of my husand's serious lymphedema.

                                  • February 11, 2014 at 8:58 pm
                                  Maureen038
                                  Participant

                                    Michele,

                                      I live near Washington DC. If you need advice on a west coast specialist, just make a new topic. We did look into a trial with Dr. Susan Knox at Stanford that combined ipi with radiation. I'm not sure if it is still a trial. Best wishes!

                                    Maureen

                                    • February 11, 2014 at 2:41 pm
                                    Maureen038
                                    Participant

                                      Michele,

                                      I know how agonizing and scary it is to watch your best friend and husband go through this journey. My husband has scans next week and I'm already a nervous wreck because he's been off medicine since December because of hemolytic anemia! I try to take it a day at a time. I am also on anxiety medicine which helps so much. If you are not sure about the treatment you can always email Dr. Weber at Moffitt, Dr. Michael Atkins at Georgetown or Dr. Rosenberg at NIH. They all personally answer their emails and may have different advice. For myself, I am attending a caregivers support group which helps me see I am NOT alone. This site is also wonderful because many people truly care. Please email me anytime at [email protected]. Sending extra prayers your way!!

                                      Maureen

                                      • February 11, 2014 at 2:41 pm
                                      Maureen038
                                      Participant

                                        Michele,

                                        I know how agonizing and scary it is to watch your best friend and husband go through this journey. My husband has scans next week and I'm already a nervous wreck because he's been off medicine since December because of hemolytic anemia! I try to take it a day at a time. I am also on anxiety medicine which helps so much. If you are not sure about the treatment you can always email Dr. Weber at Moffitt, Dr. Michael Atkins at Georgetown or Dr. Rosenberg at NIH. They all personally answer their emails and may have different advice. For myself, I am attending a caregivers support group which helps me see I am NOT alone. This site is also wonderful because many people truly care. Please email me anytime at [email protected]. Sending extra prayers your way!!

                                        Maureen

                                        • February 11, 2014 at 2:26 pm
                                        Michelem
                                        Participant

                                          Thank you, Maureen.  I am so scared I feel ill. He is dealing with it like such a trooper. Just hope the ipi will work for him, because I can't imagine life without him.

                                          • February 11, 2014 at 2:26 pm
                                          Michelem
                                          Participant

                                            Thank you, Maureen.  I am so scared I feel ill. He is dealing with it like such a trooper. Just hope the ipi will work for him, because I can't imagine life without him.

                                          • February 11, 2014 at 2:23 pm
                                          Maureen038
                                          Participant

                                            I'm so sorry you are dealing with this latest news Michele. I don't have any treatment advice, but I am sending prayers your way that ipi will work well for Don. Take care of yourself too as best as you can. Hugs!!!

                                            Maureen

                                        Viewing 2 reply threads
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