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buzzy legs and twitchy feet
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buzzy legs and twitchy feet

› Forums › General Melanoma Community › buzzy legs and twitchy feet

  • This topic has 6 replies, 3 voices, and was last updated 2 years ago by lkb.
  • Post
    • April 11, 2022 at 4:22 pm
    lkb
    Participant
      Hello all,

      I’ve been NED and off treatment since August 2020 and count this blessing every day. During treatment (Pisces trial with Pembro infusions and IL12 injections, 17 months), I developed intermittent tingling in my legs and feet, worst at night. Not diabetic. Has anyone else had/learned about this as a potential side/after effect of treatment? If so, temporary or permanent? Primary Care has prescribed gabapentin.

      Thanks in advance for any replies.

      Lisa

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        • April 12, 2022 at 7:37 am
        stevek1959x
        Participant
          I had 12 months of Nivo which ended in April 2019. November 2019 I developed type 2 diabetes which was immunotherapy induced. I’ve had extensive vitiligo and some flakey kidney and bilirubin counts which have recovered once immunotherapy stopped. Add to the mix slightly lower RBC and lupus. I’ve managed my diabetes with the highest A1C being 7.5 and recent count is 7.1 (I’m on insulin and metaformin). Fast forward to February 2022. I had several sharp pain in my left foot. Followed by an episode where my leg went completely numb (like hitting your funny bone). Still some numbness on the outer leg but hardly noticeable)0. My GP did not think it was diabetes related since I’ve only been diabetic for 2.5 years and never had any glucose problems. He ordered an EMG to diagnose the nerve problem. The neurologist indicated in the report that it was early stage diabetic neuropathy. Haven’t heard from my GP yet. Usually diabetic neuropathy is 10 – 20 years after being diagnosed and folks that don’t manage their blood sugar levels. I get needle like pains especially at night. Exercise seems to help considerably. My GP had hinted that it could be immunotherapy but doesn’t have the background/knowledge to make that diagnosis. Your question about whether this is immunotherapy induced is spot on. I’ve been NED since June, 2018 after a complete lymph node dissection.
          • April 12, 2022 at 11:54 am
          lkb
          Participant
            Thank you, Steve, for your reply. Hooray for NED and sorry to learn of the diabetes. You say you’ve never had glucose problems; have your glucose levels registered as normal throughout? Mine have, which has made me think it’s not diabetes. GP has ordered A1C test. Could you please tell me how exercise helps–what kind, how much works for you? Thanks!
            • April 12, 2022 at 4:15 pm
            ed williams
            Participant
              Something to consider, rare but there are some reported cases with pd-1 drugs is demyelination see looking link for some case study review. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7759512/
                • April 12, 2022 at 10:36 pm
                lkb
                Participant
                  Thank you, Ed!
                  • April 13, 2022 at 7:54 am
                  stevek1959x
                  Participant
                    LKB – In July 2019, I had normal glucose levels during my annual physical(much like every prior year). In September, 2019 my vision when flakey and I was constantly thirsty. My derm suggested I see my GP. He did a glucose check and it was slightly over 500. In a period of months I became diabetic. FYI – never had a weight or diet problem. Walking seems to help and it keeps my glucose levels in check.

                    Ed – Interesting. I was having headaches in late January. Didn’t think much about it and thought it was probably related to sitting at the computer too much. The headaches did not go away. I called my onco and he ordered a brain MRI. It was a clear. My CT scan was scheduled for March and I was really sweating this one as this is the first one that I went a full year between scans. I switched pillows and once I got the CT results (NED), my headaches went away. Stress? There just doesn’t seem to be much understanding of immunotherapy in the medical community. My GP, derm, cardiologist are all great at managing the symptoms but talk around immunotherapy other then “well you did have immunotherapy”. My onco is focused in on the cancer and achieving NED. So I guess this is the price you pay for being NED – which is OK by me.

                  • April 13, 2022 at 9:52 pm
                  lkb
                  Participant
                    Thank you, Stevek. I’m also in the extensive vitiligo club and agree that not much seems to be known about immunotherapy beyond “We see cancer patients with peripheral neuropathy.” Thank you for the walking tip. When the time is right, I dread/look forward to going a year between scans.
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