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Stage 4 recurrence – tumor in spinal canal
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Stage 4 recurrence – tumor in spinal canal

› Forums › Stage 4 recurrence – tumor in spinal canal

  • Post
    • November 7, 2020 at 9:28 am
    Mk517
    Participant
      Hello all,

      I’m a bit of a board lurker, always turning here for information but not posting myself. I am posting today because I am looking for anyone who has had a similar recurrence as me.

      Other than a melanoma history that keeps growing, I’m an averagely healthy 37 year old… After a craniotomy, cyber knife, and immunotherapy for brain mets last year, I was basically NED. I got through the 4 doses of opdivo/yervoy so when I started having horrible neuropathy symptoms (waking up with my hands feeling like they were on fire), I was told it was ok to stop and we would keep monitoring my CT scans — which are always clean until there’s a PROBLEM.

      The past couple months, I have been having increasing leg pain. I was always told told that it was neuropathy from the immunotherapy, bounced into some prednisone, and it got better. In the last month it did not, the pain was unbearable, I wasn’t able to sleep, or really get around at all, and I wasn’t able.to go to work. Had extra brain MRI, everything was fine. Finally had a lubar/sacral MRI and they found a 2cm mass in my spinal canal pressing on the cauda equina and causing all these symptoms. I just had surgery to remove as much as they could, sparing the nerves, on a Tuesday and came home from the hospital today.

      My pain is already SO much better, but I know I have a road ahead of me. Need to get a better handle on what’s going to happen next… My neurosurgeon mentioned radiation (not all of the tumor was able to be removed and I read in a scan report that there may be at least 1 other smaller mass near T12 but no one has actually told me that) and I guess I will need to go back on immunotherapy.

      I’m just SCARED cause I don’t know why I can’t get this OUT OF MY BODY. What else can I do? Has this happened to anyone else and what treatment did you do? What should I be doing to advocate for myself???

      Any personal experience or advice welcome. Sorry for rambling.

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        • November 8, 2020 at 4:10 am
        gopher38
        Participant
          Hello. We’ve had some similar experiences. I had neuropathy after my combo treatment, somewhat in the hands, but mostly in the legs and feet to the point where I couldn’t walk more than 30 yards or so without having to stop. And it was impossible to sleep. At one time, I went 4 days or so with just a couple of hours sleep in total. My doctors did not think it was neuropathy, but suspected spread to spinal fluid or spinal cord. We were a bit surprised when a spinal tap came back negative, followed by a negative MRI. I had the cyber knife also. My neuropathy got much better after six weeks or so, but is now in an uncomfortable steady state, along with tinitus and other issues, but I’m not going to worry about any of them until I see what happens with the underlying condition, aka my melanoma. I hope you have a late response to the yervoy and/or can get into a targeted therapy. I assume you’re been tested for mutations. If not, then I think that’s something that should be done ASAP.
          • November 9, 2020 at 4:32 pm
          Daisy2018
          Participant
            I’m sorry. It’s terrifying news. The good news they got some of it out and your pain is better.
            I’m not a big expert but from what I read here.
            Radiation for the spot/spots you have then
            Ask for BRAF mutation status since there is targeted therapy available for BRAF positive patients.

            There are other drugs available combo of opi/nivo, Or as a single agents. Yervoy as a single drug. Sounds like Yervoy and Leukine has less side effects as a combo. Keytruda is another choice.
            Talk to your oncologist.
            My choice would be radiation and do either Yervoy with Leukine or Keytruda.
            Hang in there. Pretty scary it is.

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