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Nerve Pain?
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Nerve Pain?

› Forums › General Melanoma Community › Nerve Pain?

  • Post
    • September 28, 2017 at 1:54 pm
    Bradley75
    Participant

      I had surgery in late July to remove a tumor near T-5 that was like 1mm away from my spine.  They removed the tumor and hit the area with a very high dose of radiation.  I felt really good for two weeks after surgery.  Once they hit me with 24 Gy of radiation in one shot, I have been a bit of a mess. 

      Two weeks ago, I started having pain in my shoulder and back near the radiation site.  I was a bit concerned it might be a new met as every time I have pain it turns out to be a new met.  I was at my onc for my Keytruda infusion Tuesday and found out it is nerve pain.  They gave me Gabepentin and it helps a lot. 

      I am curious if anyone else has had nerve pain issues like this?  My onc said the nerves could be waking up or regenerating and that this should resolve in time.  All I know is shooting nerve pain really sucks and has the ability to keep you up at night.  Any input or other experiences you could share would be greatly appreciated. 

      Brad

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        • September 28, 2017 at 3:28 pm
        sister of patient
        Participant

          Hi Brad – Yep, my sister has a great deal of pain stemming from her back – it shoots everywhere and often right down her legs (11 spinal mets, T12 is totally collapsed, T5 is partially collapsed). We've finally found a product that really helps and it's a cannabinoid cream applied topically. I don't know where you live – we're in Canada, so it's readily available here – but it can be ordered. If you'd like the link, let me know and I'll send it. The cream is absorbed through the skin and the relief is just about instant – works on nerve, joint and bone pain. And, nope, it doesn't make you high or anything like that!! Best wishes!!

          Barb

            • September 28, 2017 at 7:06 pm
            Bradley75
            Participant

              I am in Minnesota.  I will Google the cream you mentioned and let you know if I need the link.  Too bad it doesn't make you high…

              I will say a prayer for your sister.  I can't even imagine the pain she must have been dealing with.

              Thanks for the tip on the cream.

              Brad

              • September 28, 2017 at 10:28 pm
              sister of patient
              Participant

                Thank you for the well-wishes Brad!! She's doing great now, other than the back problems – the pain is definitely the biggest "quality of life" issue she has but she's going to see an orthopedic specialist to see if there's any way to repair some of the damage. Hope you heal quickly and as pain-free as possible!!!

                • September 29, 2017 at 2:53 am
                kandiekorn
                Participant

                  Could you post the link to the cream? 

                  • October 4, 2017 at 4:51 pm
                  sister of patient
                  Participant

                    Hi – Sorry for a tardy response (was away and out of net-range). Shoot me an email (off-board) and I'll send it.

                    Barb

                  • September 28, 2017 at 3:40 pm
                  MovingOn
                  Participant

                    I agree that nerve pain can be a sign of healing nerves. If someone has nerve disfunction (muscle not getting nerve signals) then the thing this person wishes for most of all is some nerve pain. You actually learn to like it because it means healing. Then it goes away as the healing finishes. My nerve pain was in my tongue and neck so it may be different but I’ve done a ton of research on this subject as I waited for the nerve in my tongue to heal.

                      • September 28, 2017 at 7:08 pm
                      Bradley75
                      Participant

                        I have never thought of it that way.  Thanks for sharing that.  You make a great point.

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