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bone met success stories?
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bone met success stories?

› Forums › General Melanoma Community › bone met success stories?

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    • September 4, 2017 at 7:50 pm
    Spl25
    Participant

      Really looking for some positive news regarding mets on my pelvis and femur. I'm stage 4. They're very painful and don't appear to be responding like my other tumors to PD-1. Has anyone had a response on BRAFi or any other intervention? This is truly disappointing and the pain is keeping me from working and enjoying life as much as I'd otherwise be able to. 

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        • September 5, 2017 at 1:40 am
        triciad
        Participant

          I had bone mets in my lower spine and neck.  It was incredibly painful.  I got them while on Keytruda.  My doctor put me on Tafinlar and Mekenist. They melted away in no tie at all.  

          I hope your doctor puts you on this combo.

          Blessings,

          Tricia

            • September 5, 2017 at 5:25 am
            Spl25
            Participant

              Thanks so much, and I'm happy to hear that – it may not be the most deadly site of mets but it's probably the most painful! Did the bone mets stay gone?

              • September 6, 2017 at 1:50 am
              triciad
              Participant

                Yes, they have stayed away.  I have had a few brain mets, but they were zapped with gamma knife.

                • September 6, 2017 at 1:50 am
                triciad
                Participant

                  Yes, they have stayed away.  I have had a few brain mets, but they were zapped with gamma knife.

                • September 6, 2017 at 4:21 pm
                Mat
                Participant

                  I had painful bone mets at Stage IV diagnosis in 2013.  Melted away by BRAF-MEK and haven't returned.  I did have one radiated around the time I started BRAF-MEK.  Might consider a short run on BRAF-MEK and then return to PD-1.  Also possible to combine PD-1 with BRAF-MEK, though not proven that they work well in combination.

                    • September 10, 2017 at 4:11 pm
                    Edwin
                    Participant

                      I was diagnosed with melanoma in a rib in August 2014.   Radiation to that rib made me feel better, but did not cure it.   While taking Keytruda mets grew in my ribs, backbone, pelvis and femurs.   I could not run and walking was painful.  I began Yervoy and Ipdivo treatment in April 2016.  By July 2016 I could run again.   A PET scan in August 2016 showed most of the mets were gone. I continue receiving Ipdivo every two weeks and have run several races in the past year.

                    • November 14, 2017 at 7:13 pm
                    [email protected]
                    Participant

                      Hi there, I'm so sorry about what you're dealing with! I had a lesion in my spine in 2011 (stage 4) and went to Mexico for treatment including Gerson Therapy, Coley fluid, laetrile and high dose vitamin c. God bless!

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