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Immunotherapy & Post-Treatment Side Effects

Who has had immunotherapy? I had Ipi/Nivo combo (one infusion) and landed in the hospital for severe response. I then went to Nivolumab for 14 infusions and finished treatment back in October. Anyone else done Nivo for awhile? What are you side effects post-treatment?

Our treatment options are so new and everyone is so different, I'm curious what other people are going through.

  1. Hi Hailey! I just got diagnosed two weeks ago with stage four right off the top. Going to Dana Farber. They gave me firs dual immunotherapy a week ago. So far so good. They didn’t remove tumors or lymph where cancer is? Arm and pit. Tumor in bowel area removed due to emergency surgery and one in lung is small. Where are you and what have your docs said about tumor removal? Also are you getting any advice on dietary changes etc?

    1. Oh, wow! I'm so sorry to hear that you just got diagnosed. Did you have melanoma previously?

      From my understanding, they don't remove the tumors because that's how they see if they're shrinking and/or know if the treatment is working. I had radiation to the tumor in my brain, but everything else (heart, lungs, lymph nodes) were all treated with Immunotherapy and are all gone now!

      I'm in Arizona - had treatment at Mayo Clinic! I only did one infusion of the dual immunotherapy because I had a severe reaction. So I transitioned to monotherapy (just Opdivo). I never got any diet suggestions and struggled with what I called the "surprise barfs" -- but basically sudden episodes of vomiting that seemed to come out of nowhere and I couldn't find a pattern.

      How are you feeling overall? How are you handling your diagnosis?

  2. I was diagnosed in Oct 2018 with stage 3C. After surgery to remove the original tumor & some lymph nodes, I received 9 doses of Opdivo alone at first. The only bad side effect I had was near thyroid storm. Routine scans revealed the tumors had spread along the lymph vessels in my leg. My local doc sent me to Barnes-Jewish. There they changed treatment to T-Vec. After 3 treatments of T-Vec, they found the cancer had spread to my liver, bumping me to Stage 4. Treatment change to Ipi/Nivo. After first treatment I just had a couple bouts of nausea and diarrhea. After the 2nd treatment, I'm now having temps and headaches. MRI revealed my pituitary had increased from 8mm to 11mm in 3 months. I had a pituitary specific MRI today ... waiting on the results. I suspect I won't be getting any more of the combined therapy.

    1. Oh my goodness, I am so sorry to hear. We were diagnosed around the same time. I've heard that Immunotherapy can be really rough on a person's thyroid.

      Sending you healing vibes and positive thoughts. Hang in there. <3

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