Leg pain and ipilimumab?
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Leg pain and ipilimumab?

› Forums › General Melanoma Community › Leg pain and ipilimumab?

  • Post
    • March 29, 2017 at 12:51 pm
    Dhva
    Participant

    Has anyone experienced calf pain and swelling while in ipilimumab? Also redness and pain in eyes?

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  • Replies
      • March 29, 2017 at 5:23 pm
      Nicklindner
      Participant

      I experienced a good amount of calf pain and cramping while on IPI. I would also get really bad foot and toe cramps.  Hang in there it will get better. 

        • March 31, 2017 at 12:33 pm
        Dhva
        Participant

        Thanks, still experiencing intermittent pain in the lower leg,some swelling and redness. Hoping it will resolve.

        • March 31, 2017 at 8:39 pm
        jennunicorn
        Participant

        Make sure you show to your doctor, you want to make sure it is not a blood clot/DVT (deep vein thrombosis) which usually starts in the leg. I've had a couple of friends get one in their calf, it's not something to mess with.

      • March 30, 2017 at 12:12 am
      Rocco
      Participant

      Yes to redness and pain in the eyes. Tell your oncologist immediately and get checked out by an Opthamologist.  Tell them that eye issues while not common are listed as a potential side effect with Ipi/Yervoy:  "Eye problems. Symptoms may include: blurry vision, double vision, or other vision problems; and eye pain or redness".

      I experienced severe eye issues while on one of the original IPI trials 10mg/kg dose back in 2008.  At that time it wasn't a documented potential side effect.  I was treated by an Opthamologist with high dose steroids to reduce the swelling of the eye muscles that I was experiencing (blurry vision, redness, headache specifically located across my eye brows).  Others experienced eye issues but not the eye muscle swelling (see on a head MRI). In the Boston area, Opthamologist, Dr. Stephen Foster and his team treated me (www.mersi.com) in case your doctors need to refer to someone who has seen and treated this.

      The good news is that after the battle of being on and then tapering off steroids, the eye issues subsided, IPI continued to work while on steroids and I ended up NED (since Feb 2009 !)  My vision is fine today…

      Hang in there!

      -Rocco

        • March 30, 2017 at 12:19 am
        Rocco
        Participant

        "Uveitis" was the name of the other eye issue that some patients experienced.  This one was more common that the eye muscle swellling that I experienced.  

        • March 31, 2017 at 12:31 pm
        Dhva
        Participant

        Went to the ophthalmologist and it is acute anterior uvieitis in both eyes.  Have not heard from the oncologist, although the ophthalmologist reached out to them. Hopefully this resolves quickly.

        • March 31, 2017 at 12:37 pm
        Dhva
        Participant

        Thanks for the encouragement! It's acute anterior uvieitis,although some coworkers joked that it looked like zombie-itis.Ha!

      • March 30, 2017 at 12:17 pm
      Dhva
      Participant

      Thanks for the info.  The oncologist was notified,but has not set an appointment as he is saying it's just allergies.  Not comfortable with that and will be seeing an ophthalmologist later today . Hopefully we can figure out what is going on- and don't get on the bad side of the oncologist.

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