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bone mets, redux
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bone mets, redux

› Forums › General Melanoma Community › bone mets, redux

  • Post
    • April 24, 2013 at 9:42 pm
    mama1960
    Participant

      Anyone have any info on bone mets? Any word on Zelboraf and bone mets? I am braff positive. Any help regarding the pain? Taking 10MG hydracocone every 4 hours, very little to show. Had bone scan yesterday and will get results Monday. Bone met in shoulder showed up in MRI.

      Anyone have any info on bone mets? Any word on Zelboraf and bone mets? I am braff positive. Any help regarding the pain? Taking 10MG hydracocone every 4 hours, very little to show. Had bone scan yesterday and will get results Monday. Bone met in shoulder showed up in MRI.

    Viewing 11 reply threads
    • Replies
        • April 24, 2013 at 11:40 pm
        NYKaren
        Participant

          Hi there,

          I'm so sorry you're going through this!  

          I can't help with bone mets, but i can tell you what was prescribed for pain (severe joint pain from zel…can't walk up or down two steps).  

          I went to pain managment specialist at Sloan.  She gave me 10 mg. Oxycontin (which is long-acting and CANNOT be split or cut) every 12 hours.  then as needed, she perscribed  10 mg. oxycodone every 3 hours.  If that doesn't work, she said to take 15 mg. ocycodone.    

          I do not feel high from the 10 mg. oxycodone dose, but I do just a little from a 15 mg. dose, so I reserve it for when I'm home and in the most pain.    I don't feel a thing from the Oxycontin, and she said that's what it's meant for, a "more subtle, long-acting pain relief" without any highs or lows.

          Since the inflamation in my knees was very visible over the last few days,  I've taken 5 mg. of prednisone per day, and that helps a lot.  The first day I took 10 mg. as a "loading dose".   But I don't know if that helps bone mets at all, you'd have to check with your doc.

          I highly recommend seeing a pain management doctor who specializes in cancer patients.

          I hope this helps…

          thinking of you,

          Karen 

          • April 24, 2013 at 11:40 pm
          NYKaren
          Participant

            Hi there,

            I'm so sorry you're going through this!  

            I can't help with bone mets, but i can tell you what was prescribed for pain (severe joint pain from zel…can't walk up or down two steps).  

            I went to pain managment specialist at Sloan.  She gave me 10 mg. Oxycontin (which is long-acting and CANNOT be split or cut) every 12 hours.  then as needed, she perscribed  10 mg. oxycodone every 3 hours.  If that doesn't work, she said to take 15 mg. ocycodone.    

            I do not feel high from the 10 mg. oxycodone dose, but I do just a little from a 15 mg. dose, so I reserve it for when I'm home and in the most pain.    I don't feel a thing from the Oxycontin, and she said that's what it's meant for, a "more subtle, long-acting pain relief" without any highs or lows.

            Since the inflamation in my knees was very visible over the last few days,  I've taken 5 mg. of prednisone per day, and that helps a lot.  The first day I took 10 mg. as a "loading dose".   But I don't know if that helps bone mets at all, you'd have to check with your doc.

            I highly recommend seeing a pain management doctor who specializes in cancer patients.

            I hope this helps…

            thinking of you,

            Karen 

            • April 24, 2013 at 11:40 pm
            NYKaren
            Participant

              Hi there,

              I'm so sorry you're going through this!  

              I can't help with bone mets, but i can tell you what was prescribed for pain (severe joint pain from zel…can't walk up or down two steps).  

              I went to pain managment specialist at Sloan.  She gave me 10 mg. Oxycontin (which is long-acting and CANNOT be split or cut) every 12 hours.  then as needed, she perscribed  10 mg. oxycodone every 3 hours.  If that doesn't work, she said to take 15 mg. ocycodone.    

              I do not feel high from the 10 mg. oxycodone dose, but I do just a little from a 15 mg. dose, so I reserve it for when I'm home and in the most pain.    I don't feel a thing from the Oxycontin, and she said that's what it's meant for, a "more subtle, long-acting pain relief" without any highs or lows.

              Since the inflamation in my knees was very visible over the last few days,  I've taken 5 mg. of prednisone per day, and that helps a lot.  The first day I took 10 mg. as a "loading dose".   But I don't know if that helps bone mets at all, you'd have to check with your doc.

              I highly recommend seeing a pain management doctor who specializes in cancer patients.

              I hope this helps…

              thinking of you,

              Karen 

              • April 25, 2013 at 2:54 am
              gabsound
              Participant
                Karen,

                Talk to your oncologist about getting radiation to your bone mets. I have gotten long lasting relief from pain in my left hip, rt humerus and lumbar spine.

                Julie

                • April 25, 2013 at 2:54 am
                gabsound
                Participant
                  Karen,

                  Talk to your oncologist about getting radiation to your bone mets. I have gotten long lasting relief from pain in my left hip, rt humerus and lumbar spine.

                  Julie

                  • April 25, 2013 at 2:54 am
                  gabsound
                  Participant
                    Karen,

                    Talk to your oncologist about getting radiation to your bone mets. I have gotten long lasting relief from pain in my left hip, rt humerus and lumbar spine.

                    Julie

                      • April 25, 2013 at 1:16 pm
                      G-Samsa
                      Participant
                        My experience exactly, Julie. Bone mets in femur, pelvis, and lower spine had become a real mobility issue. Radiation got me off the crutches and moving on my own without a lot of great pain ( though I am still on the oxy-twins mentioned above). There is a theory that the radiation can improve the effectiveness of some of the immunotherapy drugs…. Another reason to not fear the radiation if you are on Ipi or an anti-pd1– just make sure you understand how the radiation may affect your standing in any trials you may be involved in or are considering.
                        • April 25, 2013 at 1:16 pm
                        G-Samsa
                        Participant
                          My experience exactly, Julie. Bone mets in femur, pelvis, and lower spine had become a real mobility issue. Radiation got me off the crutches and moving on my own without a lot of great pain ( though I am still on the oxy-twins mentioned above). There is a theory that the radiation can improve the effectiveness of some of the immunotherapy drugs…. Another reason to not fear the radiation if you are on Ipi or an anti-pd1– just make sure you understand how the radiation may affect your standing in any trials you may be involved in or are considering.
                          • April 25, 2013 at 1:16 pm
                          G-Samsa
                          Participant
                            My experience exactly, Julie. Bone mets in femur, pelvis, and lower spine had become a real mobility issue. Radiation got me off the crutches and moving on my own without a lot of great pain ( though I am still on the oxy-twins mentioned above). There is a theory that the radiation can improve the effectiveness of some of the immunotherapy drugs…. Another reason to not fear the radiation if you are on Ipi or an anti-pd1– just make sure you understand how the radiation may affect your standing in any trials you may be involved in or are considering.
                          • April 25, 2013 at 2:01 pm
                          mama1960
                          Participant

                            Thanks for the replies.Wow, this is quite a shock. I have been dealing with Mel for over 4 years, but have never experienced this kind of unrelenting pain before.

                              • April 25, 2013 at 6:00 pm
                              Tina D
                              Participant

                                So sorry you are having to deal with pain like this 🙁   

                                Tina

                                • April 25, 2013 at 6:00 pm
                                Tina D
                                Participant

                                  So sorry you are having to deal with pain like this 🙁   

                                  Tina

                                  • April 25, 2013 at 6:00 pm
                                  Tina D
                                  Participant

                                    So sorry you are having to deal with pain like this 🙁   

                                    Tina

                                  • April 25, 2013 at 2:01 pm
                                  mama1960
                                  Participant

                                    Thanks for the replies.Wow, this is quite a shock. I have been dealing with Mel for over 4 years, but have never experienced this kind of unrelenting pain before.

                                    • April 25, 2013 at 2:01 pm
                                    mama1960
                                    Participant

                                      Thanks for the replies.Wow, this is quite a shock. I have been dealing with Mel for over 4 years, but have never experienced this kind of unrelenting pain before.

                                      • April 26, 2013 at 12:45 am
                                      Harry in Fair Oaks
                                      Participant

                                        I had bone mets, and I'm on a BRAF/MEK clinical trial.  While my BRAF med isn't exactly the same as Zelboraf, it works on the same principle (same mutated BRAF protein).  While on this regimen for the last 2 years, my bone mets have practically disappeared.  So there is a good chance your mets will respond to Zelboraf.

                                        Best regards,

                                        Harry

                                        • April 26, 2013 at 12:45 am
                                        Harry in Fair Oaks
                                        Participant

                                          I had bone mets, and I'm on a BRAF/MEK clinical trial.  While my BRAF med isn't exactly the same as Zelboraf, it works on the same principle (same mutated BRAF protein).  While on this regimen for the last 2 years, my bone mets have practically disappeared.  So there is a good chance your mets will respond to Zelboraf.

                                          Best regards,

                                          Harry

                                            • April 26, 2013 at 4:33 pm
                                            mama1960
                                            Participant

                                              That's really good to hear!

                                              • April 26, 2013 at 4:33 pm
                                              mama1960
                                              Participant

                                                That's really good to hear!

                                                • April 26, 2013 at 4:33 pm
                                                mama1960
                                                Participant

                                                  That's really good to hear!

                                                • April 26, 2013 at 12:45 am
                                                Harry in Fair Oaks
                                                Participant

                                                  I had bone mets, and I'm on a BRAF/MEK clinical trial.  While my BRAF med isn't exactly the same as Zelboraf, it works on the same principle (same mutated BRAF protein).  While on this regimen for the last 2 years, my bone mets have practically disappeared.  So there is a good chance your mets will respond to Zelboraf.

                                                  Best regards,

                                                  Harry

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