• suelynn's Avatar

    suelynn shared an experience

    Celebration (Celebrate every day, as I am happy to be alive. ): I have changed my priorities and take every opportunity to be with family and friends and savor that time.

  • suelynn's Avatar

    suelynn shared an experience

    Clinical Trial (Currently enrolled receiving enfortumab vedotin.): Once a week infusion for three weeks, off one week. Side effects are hair loss, skin burning/rash/blistering/peeling. Am now experiencing neuropathy in feet and hands.

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    • janlaurie's Avatar
      janlaurie

      Just started Phase Ib trial of Keytruda and enfortumab vedotin. Week 1 get both drugs, week 2 just the enfortumab vedotin, week 3 just labs, then starts all over again. Had one infusion so far only side effect is fatigue. They will do CT scan after 9 weeks to see if its working. I’m Stage IV urothelial cell with mets to lungs and liver. They thought my kidney was just “not functioning” but when they removed it found the cancer and that it had spread. Still in shock since prognosis is grim for this but hoping I am in the minority who do respond to Keytruda.

      8 months ago
  • suelynn's Avatar

    suelynn shared an experience

    Celebration (Cancer is shrinking): On continuing clinical trial regimen and lymph node cancer is shrinking.

  • suelynn's Avatar

    suelynn shared an experience

    Side Effects (Fatigue (tiredness)): Very tired. Slept a lot. Had a permanent hearing loss caused by cisplatin.

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    suelynn shared an experience

    Procedure or Surgery (Surgery): Outcome of surgery was different than what was planned, but has worked out very well for me. Received an ileal conduit and external bladder.

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    suelynn shared an experience

    Drug or Chemo Therapy (Chemotherapy): Was tired, but lucky to not have many side effects. Did have one episode of mouth sores, which were extremely painful.