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Joint Pain
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Joint Pain

› Forums › General Melanoma Community › Joint Pain

  • Post
    • August 28, 2020 at 3:48 pm
    Lori0529
    Participant
      HIstory:

      October 2007
      Lower Right leg Melanoma in situ
      November 2015
      Upper right leg/groin
      Skin tag became dark
      “mature melanoma”
      Breslow Thickness – 2.85 mm
      Clark’s Level: Four
      Ulceration: Present
      Wide Excision
      Sentinel Node Biopsy – Negative
      February 2020
      Enlarged groin lymph node had appeared on follow up CT Scan
      Biopsy confirmed Melanoma
      Treatment plan: Immunotherapy followed by surgery

      2/17/2020
      Opdivo/Yervoy Round 1
      3/9/2020
      Opdivo/Yervoy Round 2
      3/30/2020
      Opdivo/Yervoy Round 3 scheduled
      Did not take place due to liver numbers
      AST 115, ALT 257
      Steroids prescribed (Prednisone 10 mg taper for 24 days ending April 24)
      4/14/20
      Received NEO Genomics report that confirmed BRAF V600e mutation
      4/20/2020
      Liver numbers had improved to AST 19, ALT 28
      Opdivo Only infusion
      5/4/2020
      Opdivo Only scheduled
      Did not take place due to high liver numbers again
      AST 217, ALT 482
      Steroids prescribed (Prednisone 10 mg taper for 33 days ending June 5)
      Surgery scheduled
      6/11/2020
      SURGERY
      Complete Superficial Inguinal Dissection (all lymph nodes in right groin removed)
      6/29/2020
      Post Op Appointment
      Pathology report indicated 9 lymph nodes were removed — 1 of the 9 positive for Melanoma
      Treatment plan is now “surveillance” that includes Brain MRI and CT scans every 3 months

      Have recovered well from the surgery and have only had slight leg swelling.

      Am waking up with extreme joint pain in both shoulders and one hand each morning.
      Last immunotherapy infusion was in April. Has anyone else experienced this?

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    • Replies
        • August 28, 2020 at 7:08 pm
        Sdmotorcop
        Participant
          Hi Lorio529,
          First off, a little background.
          1. 2004, lower right back, 1.7mm, WLE with good margins, snlb biopsy from 3 locations, all negative

          2. 2017, in situ, left lower shin, WLE with good margins

          3. 2019, behind left knee, 4.3mm (it went from a very small spot to 4.3 in 2 months time, WLE with good margins, SNLB x2 left groin with the first one in line being positive for melanoma.

          Started monthly Nivo in June 2019. Approximately 3 weeks after starting the Nivo, I noticed a lot of pain in both of my shoulders and hips. The pain was mostly at night and the early mornings. I was sent to a rheumatologist and was diagnosed With what he called PMR (polymyalgia rheumatica). He said it was not “classic” PMR due to my labs being normal. I was treated with low dose prednisone (10mg) which helped in pain management.

          Fast forward to April 2020. A new rheumatologist orders a mri of my shoulders because she didn’t agree with other rheumatologist. Low and behold, they find spots in my lungs which sends me to stage4. I stopped Nivo and was started on IPI. I made it through 3 of the 4 (liver numbers went wonky). My oncologist started me on 80mg of prednisone which controlled my liver issues.

          I’m down to 20mg now, however the shoulder and hip pain has come back with a vengeance. If your pain continues, you may want to ask your oncologist or rheumatologist about it. My rheumatologist told me immunotherapy is a wonderful thing… however they are still discovering the different ways it acts with our bodies.. so in essence we are just a bunch of “Ratties” as Celeste likes to say…

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