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Taf/Mek update and spinal metastasis pain management/treatment options

Forums General Melanoma Community Taf/Mek update and spinal metastasis pain management/treatment options

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      Hi everyone! It's been a few months. For those who don't know our story, my 30-something-years-old then-boyfriend (now husband) was diagnosed with stage 4 melanoma this past February and has a very high tumor burden: brain, lungs, kidneys, liver, spleen, adrenals, spine, pelvis. He had an emergency craniotomy early on plus whole brain radiation and stereotactic radiation, then 2 months later they started him on the ipi/nivo combo only to realize that his cancer was progressing way too fast, so they switched him to taf/mek just a week after his first infusion of the immunotherapy combo.

      My husband has had a pretty good run on Taf/Mek. He just had scans a couple days ago and things look like they are still shrinking overall. In April he was on home oxygen, not eating, and sleeping all day, but the past month and a half have been especially great. We went on a 2-hour bike ride just a few days ago.

      So my question is about his spine metastases. He developed back pain in late May while on Taf/Mek and the docs did 10 rounds of radiation, which cleared up the pain completely.

      But now the back pain has returned 🙁 It's accompanied by mild tingling in his foot and leg. It started on Saturday. Just last Wednesday we got the news that his scans still look great and the cancer is shrinking, so not sure what is happening with his back now.

      We left a message with his oncologist but I was wondering if you fine folks had any idea what might be done to help him now. He's already had radiation to the area, so my understanding is they can't do radiation again. Does he have any other options? I'm especially worried about the "tingling" — will this ultimatley lead to paralysis? Or do you have any other ideas for pain management?

      Right now he takes maybe 4-8mg of hydromorph per day so not too much. But it got VERY bad the last 2 times (1st time pain went away when he started Taf/Mek, 2nd time pain went away when they did radiation). So I'm scared.

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        Brian j

          I have spinal metastasis in my sacrum appeared April 2017. I had quite a bit of pain and neuropathy, kind of a "tingling" or "pulsing" in my legs due to damage of nerves. I had a similar radiation treatment as your husband. I had a lot of the same fears about paralysis. I was prescribed denasamab (xgeva) to help build bone. Also Gabapentin for the nerve problems. I have been on Keytruda since May 2017 steady decrease in tumor activity via PET scan.  My pain has diminished after about 8 months of treatment. For pain started with occasional Tramadol then to Aleve only. Now occasional or daily Ibuprofen. I would say that its hard to say sometime whether pain cause is side effects or disease related. Nerves take a long time to heal. I hope this is helpful, Best wishes to you and your husband!


              Thank you so much!!!! We talked to our oncologist and he thinks that this is not a sign of cancer progression but actually bones healing and causing sciatica. No radiation, just pain management. Oncologist hopes that pain may resolve itself in 4-6 weeks if we're lucky.

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