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1 year since diagnosis for my boyfriend randy
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1 year since diagnosis for my boyfriend randy

› Forums › General Melanoma Community › 1 year since diagnosis for my boyfriend randy

  • Post
    • March 10, 2013 at 1:43 pm
    Amanda
    Participant

      March 9th, 2012 randy was diagnosed stge IV, with no primary.  Lung  and brain lesions, and another tumor in chest wall.

      March 9th, 2012 randy was diagnosed stge IV, with no primary.  Lung  and brain lesions, and another tumor in chest wall.   Today marks a year, and he is still here.  Man it seemed like that year flew by…He first had radiation and a craniotomy, followed by the rest of the radiation, then yervoy…now he's had two doses of merk Anti-pd1 and is doing great.  Tumors  have stabalized.  Plus, we just took a 3 day trip to las vegas.  I pushed him up the stirp and through the casinos in his wheel chair, because there's no way he could handle that much walking. (He's still not been able to gain a lot of muslce back after losing a ton of weight from a tumor obstructing his bowel.)  Vegas is kind of wheel chair INCONVENIENT …not in accesible…but a pain in the butt!  It was worth it though.  Hope everyone is doing well out there tonight.  good health wishes sent to you all.

      -Amanda-

    Viewing 8 reply threads
    • Replies
        • March 10, 2013 at 6:58 pm
        Owl
        Participant

          Dear Amanda,

          you have lived with Melanoma a year already and I wish that it will be many more for you two. Good that Randy is recovering and tumors are stabilized, keep on fighting! Vegas sounds great. My husband and I just spent some days in London, felt good to travel again. Next plan is travelling to the states with our little daughter. My husband is doing well with Zelboraf, side effects are manageable, just loosing his wonderful reddish hair, tumors continue shrinking.

          All the best,

          Jenny

          • March 10, 2013 at 6:58 pm
          Owl
          Participant

            Dear Amanda,

            you have lived with Melanoma a year already and I wish that it will be many more for you two. Good that Randy is recovering and tumors are stabilized, keep on fighting! Vegas sounds great. My husband and I just spent some days in London, felt good to travel again. Next plan is travelling to the states with our little daughter. My husband is doing well with Zelboraf, side effects are manageable, just loosing his wonderful reddish hair, tumors continue shrinking.

            All the best,

            Jenny

            • March 10, 2013 at 6:58 pm
            Owl
            Participant

              Dear Amanda,

              you have lived with Melanoma a year already and I wish that it will be many more for you two. Good that Randy is recovering and tumors are stabilized, keep on fighting! Vegas sounds great. My husband and I just spent some days in London, felt good to travel again. Next plan is travelling to the states with our little daughter. My husband is doing well with Zelboraf, side effects are manageable, just loosing his wonderful reddish hair, tumors continue shrinking.

              All the best,

              Jenny

                • March 11, 2013 at 12:31 am
                POW
                Participant

                  Amanda, I'm so happy to hear that Randy is responding to treatment! That's just wonderful! And I'm so glad that you were both able to get out and have some real fun. Even short trips and excursions like that can really boost your spirits and brighten your outlook. Here's to many more happy trips and days! Keep up the good work!

                  • March 11, 2013 at 12:31 am
                  POW
                  Participant

                    Amanda, I'm so happy to hear that Randy is responding to treatment! That's just wonderful! And I'm so glad that you were both able to get out and have some real fun. Even short trips and excursions like that can really boost your spirits and brighten your outlook. Here's to many more happy trips and days! Keep up the good work!

                    • March 11, 2013 at 12:31 am
                    POW
                    Participant

                      Amanda, I'm so happy to hear that Randy is responding to treatment! That's just wonderful! And I'm so glad that you were both able to get out and have some real fun. Even short trips and excursions like that can really boost your spirits and brighten your outlook. Here's to many more happy trips and days! Keep up the good work!

                    • March 15, 2013 at 7:26 pm
                    Tina D
                    Participant

                      Hi Amanda! I remember reading your first post a while back. So glad to hear he is doing great and that the tumors have stabilized. He sure is blessed to have you at his side!! What a year he has had…wow. Looking forward to hearing more posts from you abt his good progress 🙂

                      Thank you for posting this update!

                      Tina

                      • March 15, 2013 at 7:26 pm
                      Tina D
                      Participant

                        Hi Amanda! I remember reading your first post a while back. So glad to hear he is doing great and that the tumors have stabilized. He sure is blessed to have you at his side!! What a year he has had…wow. Looking forward to hearing more posts from you abt his good progress 🙂

                        Thank you for posting this update!

                        Tina

                        • March 15, 2013 at 7:26 pm
                        Tina D
                        Participant

                          Hi Amanda! I remember reading your first post a while back. So glad to hear he is doing great and that the tumors have stabilized. He sure is blessed to have you at his side!! What a year he has had…wow. Looking forward to hearing more posts from you abt his good progress 🙂

                          Thank you for posting this update!

                          Tina

                          • March 17, 2013 at 11:45 pm
                          Wife of Carl
                          Participant

                            Glad to hear that Randy is responding to treatment.  Did he have to fail Yervoy before being allowed to get into an anti-pd1 trial?  Randy sounds very similar to my husband, who also has lung and brain mets and a chest wall tumor.  We are currently looking for treatment for him.  He had previously been on a MEK trial.  We were told that he could not get into a anti-pd1 trial without failing Yervoy first, which is a relatively new requirement.

                            Pat

                            • March 17, 2013 at 11:45 pm
                            Wife of Carl
                            Participant

                              Glad to hear that Randy is responding to treatment.  Did he have to fail Yervoy before being allowed to get into an anti-pd1 trial?  Randy sounds very similar to my husband, who also has lung and brain mets and a chest wall tumor.  We are currently looking for treatment for him.  He had previously been on a MEK trial.  We were told that he could not get into a anti-pd1 trial without failing Yervoy first, which is a relatively new requirement.

                              Pat

                              • March 17, 2013 at 11:45 pm
                              Wife of Carl
                              Participant

                                Glad to hear that Randy is responding to treatment.  Did he have to fail Yervoy before being allowed to get into an anti-pd1 trial?  Randy sounds very similar to my husband, who also has lung and brain mets and a chest wall tumor.  We are currently looking for treatment for him.  He had previously been on a MEK trial.  We were told that he could not get into a anti-pd1 trial without failing Yervoy first, which is a relatively new requirement.

                                Pat

                                  • March 27, 2013 at 9:03 am
                                  Amanda
                                  Participant

                                    Yes, the arm randy is in requires you have had failed yervoy first.  Randy did yervoy from about april-july, all his tumors stayed stable for months, then he progressed, had bowel surgery, and now on pd1, his tumors are significantly smaller, and he's only had 3 infusions thus far.  He's seeing Dr. Antoni Ribas at UCLA  and i know there are pd1 trials are the angeles clinic with dr hamid as well, but not sure if any are open at this moment.  

                                    -Amanda

                                    • March 27, 2013 at 3:20 pm
                                    killmel
                                    Participant

                                      Hi.

                                       

                                      There is also pd1 trial at Beverly Hills Cancer Center with Dr. Steven Oday, Melanoma specialist formerly director of Melanoma at Angeles Clinic.

                                      I am a patient of Dr. Oday. He is an expert on melanoma. & a great doctor. Really listens to me. He will also respond to emails: [email protected] If you want to make appt. call (800) TO-HEALTH

                                       

                                      Good Luck

                                      A

                                      • March 27, 2013 at 3:20 pm
                                      killmel
                                      Participant

                                        Hi.

                                         

                                        There is also pd1 trial at Beverly Hills Cancer Center with Dr. Steven Oday, Melanoma specialist formerly director of Melanoma at Angeles Clinic.

                                        I am a patient of Dr. Oday. He is an expert on melanoma. & a great doctor. Really listens to me. He will also respond to emails: [email protected] If you want to make appt. call (800) TO-HEALTH

                                         

                                        Good Luck

                                        A

                                        • March 27, 2013 at 3:20 pm
                                        killmel
                                        Participant

                                          Hi.

                                           

                                          There is also pd1 trial at Beverly Hills Cancer Center with Dr. Steven Oday, Melanoma specialist formerly director of Melanoma at Angeles Clinic.

                                          I am a patient of Dr. Oday. He is an expert on melanoma. & a great doctor. Really listens to me. He will also respond to emails: [email protected] If you want to make appt. call (800) TO-HEALTH

                                           

                                          Good Luck

                                          A

                                          • March 27, 2013 at 9:03 am
                                          Amanda
                                          Participant

                                            Yes, the arm randy is in requires you have had failed yervoy first.  Randy did yervoy from about april-july, all his tumors stayed stable for months, then he progressed, had bowel surgery, and now on pd1, his tumors are significantly smaller, and he's only had 3 infusions thus far.  He's seeing Dr. Antoni Ribas at UCLA  and i know there are pd1 trials are the angeles clinic with dr hamid as well, but not sure if any are open at this moment.  

                                            -Amanda

                                            • March 27, 2013 at 9:03 am
                                            Amanda
                                            Participant

                                              Yes, the arm randy is in requires you have had failed yervoy first.  Randy did yervoy from about april-july, all his tumors stayed stable for months, then he progressed, had bowel surgery, and now on pd1, his tumors are significantly smaller, and he's only had 3 infusions thus far.  He's seeing Dr. Antoni Ribas at UCLA  and i know there are pd1 trials are the angeles clinic with dr hamid as well, but not sure if any are open at this moment.  

                                              -Amanda

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