Aggravated!!
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Aggravated!!

› Forums › General Melanoma Community › Aggravated!!

  • Post
    • September 2, 2014 at 12:11 pm
    eturner
    Participant

      Here is an update on my husband… He has been on the braf combo for about 5 months now he stared having a slight amount of pain in July ( Oncologist said was probably nothing and CT showed stable bone mets), I knew in my gut something was wrong. Two weeks ago he finally said the pain was more than he could handle and he needed to go back for more scans….. CT showed stable bone mets, Doctor agreed to do MRI due to pain…… Friday he had his MRI, as of this moment I have yet to hear from his Oncologist…. His PCP however has callled me and said that the MRI shows his L5 Vertebra has a burst fracture due to tumor growth and a very large very deep met in is right femur, along with mets to spine, hip and pelvis from pervious scans!!! I am beside myself and scared out of my mind….. My husbands PCP said he was shocked no one had called us considering the severity of the L5 brake.

       So I know the combo has run its course and I know PD1 is the best option we have, I'm just nervous about what I've read about the time it takes for med to take affect. Advice and Support needed… THANK YOU!

    Viewing 5 reply threads
    • Replies
        • September 2, 2014 at 12:31 pm
        ed williams
        Participant

          The early studies on Nivolumab showed good scan results for those who repond by the 8th week. That is when they did the scans as far as I can tell. I had my first scans at 12 weeks in the BMS study that I am in, and then every 6th week until the end of the study( 2 years). Getting access to the drug is the problem since it still is at trial status. I know they have opened up expanded access for the combination of ipi and Nivolumab. If you go back maybe a month in the forum there should be something written about the expanded access. I hope that you can find access ASAP. Best of luck !!! Ed

            • September 2, 2014 at 12:40 pm
            ed williams
            Participant

              I found the post which is from Tim-MRF ( I like to call him the guy in the suit) the date of the information is 7/10/2014. I hope the information helps. Ed

              • September 2, 2014 at 12:40 pm
              ed williams
              Participant

                I found the post which is from Tim-MRF ( I like to call him the guy in the suit) the date of the information is 7/10/2014. I hope the information helps. Ed

                • September 2, 2014 at 12:40 pm
                ed williams
                Participant

                  I found the post which is from Tim-MRF ( I like to call him the guy in the suit) the date of the information is 7/10/2014. I hope the information helps. Ed

                • September 2, 2014 at 12:31 pm
                ed williams
                Participant

                  The early studies on Nivolumab showed good scan results for those who repond by the 8th week. That is when they did the scans as far as I can tell. I had my first scans at 12 weeks in the BMS study that I am in, and then every 6th week until the end of the study( 2 years). Getting access to the drug is the problem since it still is at trial status. I know they have opened up expanded access for the combination of ipi and Nivolumab. If you go back maybe a month in the forum there should be something written about the expanded access. I hope that you can find access ASAP. Best of luck !!! Ed

                  • September 2, 2014 at 12:31 pm
                  ed williams
                  Participant

                    The early studies on Nivolumab showed good scan results for those who repond by the 8th week. That is when they did the scans as far as I can tell. I had my first scans at 12 weeks in the BMS study that I am in, and then every 6th week until the end of the study( 2 years). Getting access to the drug is the problem since it still is at trial status. I know they have opened up expanded access for the combination of ipi and Nivolumab. If you go back maybe a month in the forum there should be something written about the expanded access. I hope that you can find access ASAP. Best of luck !!! Ed

                    • September 2, 2014 at 1:04 pm
                    Owl
                    Participant

                      My husband is on Expanded Access Program for Pembrolizumab, he only had two infusion yet but after three weeks of swelling and pain (what does not seem to be normal) we could feel and see first mets shrinking, smallest two are gone, others are shrinking and we hope that pictures in October will tell the same. He also had quite a quick response from Ipi two years ago, unfortunately only a partial response.

                      I have heard from others to have a quick response to PD1, quicker than Ipi. Has your husband received Ipi yet in order to qualify for Merck's EAP?

                      All the best, Jenny

                        • September 2, 2014 at 2:06 pm
                        eturner
                        Participant

                          My husband has not had Ipi yet… We see Doctors at UVA and i am pretty sure the trail for ipi/Pd1 is there…. We shall see his Dr just called and wants to see him today at 12:30… Wish us luck, I will update you all soon!!

                          • September 2, 2014 at 2:06 pm
                          eturner
                          Participant

                            My husband has not had Ipi yet… We see Doctors at UVA and i am pretty sure the trail for ipi/Pd1 is there…. We shall see his Dr just called and wants to see him today at 12:30… Wish us luck, I will update you all soon!!

                            • September 2, 2014 at 2:06 pm
                            eturner
                            Participant

                              My husband has not had Ipi yet… We see Doctors at UVA and i am pretty sure the trail for ipi/Pd1 is there…. We shall see his Dr just called and wants to see him today at 12:30… Wish us luck, I will update you all soon!!

                            • September 2, 2014 at 1:04 pm
                            Owl
                            Participant

                              My husband is on Expanded Access Program for Pembrolizumab, he only had two infusion yet but after three weeks of swelling and pain (what does not seem to be normal) we could feel and see first mets shrinking, smallest two are gone, others are shrinking and we hope that pictures in October will tell the same. He also had quite a quick response from Ipi two years ago, unfortunately only a partial response.

                              I have heard from others to have a quick response to PD1, quicker than Ipi. Has your husband received Ipi yet in order to qualify for Merck's EAP?

                              All the best, Jenny

                              • September 2, 2014 at 1:04 pm
                              Owl
                              Participant

                                My husband is on Expanded Access Program for Pembrolizumab, he only had two infusion yet but after three weeks of swelling and pain (what does not seem to be normal) we could feel and see first mets shrinking, smallest two are gone, others are shrinking and we hope that pictures in October will tell the same. He also had quite a quick response from Ipi two years ago, unfortunately only a partial response.

                                I have heard from others to have a quick response to PD1, quicker than Ipi. Has your husband received Ipi yet in order to qualify for Merck's EAP?

                                All the best, Jenny

                            Viewing 5 reply threads
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