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Twitching/spasms
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Twitching/spasms

› Forums › General Melanoma Community › Twitching/spasms

  • Post
    • July 30, 2014 at 3:07 pm
    Sha20vs
    Participant

      Hello –

      Im currently a care taker (along with a few others). My "patient" was diagnosed stage IV in January of this year. Primary was a mole on his side, but the initial diagnosis came from the removal of a tumor on his side. Pet scan showed melanoma had spread to liver, spleen, pelvis, abdomen, spine, right arm & lungs. Before the test results came back for the BRAF mutation he did one round of Ipi. Before his second round they switched treatment and put him on the the MEK combo. In the end of April his LDH started coming down and tumors show stabilization and some decrease. Things stayed like this till end of June. His LDH started rising again and although the origin tumors still remained same and some decreasing two new  tumors came up in his soft tissue. He started back on the Ipi three weeks later. He's now had two rounds and of Ipi and radiation on his arm and pelvis to help levitate some pain he's in. Recently he's started having spasms and twitching. I don't know whether to attribute it to the disease that may have moved to the brain or all the medication he's taking? The other think I wonder is if the Mek combo caused the stabilization or if it was the initial round of Ipi that kicked in. My fear is that he won't make it long enough to see if the Ipi works.

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    • Replies
        • July 30, 2014 at 3:40 pm
        arthurjedi007
        Participant

          It's difficult to say the exact cause of the twitching/spasms. I can share my experience with my twitching/spasms. Basically for no apparent reason to me sometimes my lower back and legs will twitch. Some times it is just one leg, sometimes both, sometimes not the back and sometimes it is.

          Basically the way I understand my twitching/spasms it is the tumors in my spine pressing on either nerves or the spinal cord. I do know after being on the tafinlar/mekenist combo for 2 weeks all my twitching ended. Fast forward 6 more weeks to the scan and it seemed like probably the mekenist was keeping all my spine tumors from growing and the tafinlar was shrinking a couple by a very small amount. Within a day of being off the combo the twitching started again which really suprised me it started back so fast. The frequency increased while on PD1 to 6 or more a day. Finally after this 4th dose of PD1 they have dropped to 2 or less a day which I take as a really good sign.

          Dunno if that helps but that is my experience. Good luck.

            • July 30, 2014 at 4:03 pm
            Sha20vs
            Participant

              No that definitely helps. My two thoughts were either it's moved to the brain or the spinal tumors are causing it. We know that the cancer is active based on how high his LDH is. I appreciate the response. 

              • July 30, 2014 at 4:03 pm
              Sha20vs
              Participant

                No that definitely helps. My two thoughts were either it's moved to the brain or the spinal tumors are causing it. We know that the cancer is active based on how high his LDH is. I appreciate the response. 

                • July 30, 2014 at 4:03 pm
                Sha20vs
                Participant

                  No that definitely helps. My two thoughts were either it's moved to the brain or the spinal tumors are causing it. We know that the cancer is active based on how high his LDH is. I appreciate the response. 

                • July 30, 2014 at 3:40 pm
                arthurjedi007
                Participant

                  It's difficult to say the exact cause of the twitching/spasms. I can share my experience with my twitching/spasms. Basically for no apparent reason to me sometimes my lower back and legs will twitch. Some times it is just one leg, sometimes both, sometimes not the back and sometimes it is.

                  Basically the way I understand my twitching/spasms it is the tumors in my spine pressing on either nerves or the spinal cord. I do know after being on the tafinlar/mekenist combo for 2 weeks all my twitching ended. Fast forward 6 more weeks to the scan and it seemed like probably the mekenist was keeping all my spine tumors from growing and the tafinlar was shrinking a couple by a very small amount. Within a day of being off the combo the twitching started again which really suprised me it started back so fast. The frequency increased while on PD1 to 6 or more a day. Finally after this 4th dose of PD1 they have dropped to 2 or less a day which I take as a really good sign.

                  Dunno if that helps but that is my experience. Good luck.

                  • July 30, 2014 at 3:40 pm
                  arthurjedi007
                  Participant

                    It's difficult to say the exact cause of the twitching/spasms. I can share my experience with my twitching/spasms. Basically for no apparent reason to me sometimes my lower back and legs will twitch. Some times it is just one leg, sometimes both, sometimes not the back and sometimes it is.

                    Basically the way I understand my twitching/spasms it is the tumors in my spine pressing on either nerves or the spinal cord. I do know after being on the tafinlar/mekenist combo for 2 weeks all my twitching ended. Fast forward 6 more weeks to the scan and it seemed like probably the mekenist was keeping all my spine tumors from growing and the tafinlar was shrinking a couple by a very small amount. Within a day of being off the combo the twitching started again which really suprised me it started back so fast. The frequency increased while on PD1 to 6 or more a day. Finally after this 4th dose of PD1 they have dropped to 2 or less a day which I take as a really good sign.

                    Dunno if that helps but that is my experience. Good luck.

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