Joyk

My husband had surgery to remove a brain tumor, then 2 doses of IPI/Nivo before he had a bad reaction and had to stop. About 6 weeks after the second dose he had a ct of his lungs. All of the tumors were slowly responding. By 7 months later he was NED. That was 2 years ago. Now he’s just dealing with radiation induced brain nicrosus.

I also would like to thank Celeste and Ed. When my husband was diagnosed stage 4 in 2019 this forum was a big help. I’m not sure if I posted but the knowledgeable, documented answers I read here were very helpful. Thank You! I now look more at the 2 Facebook groups as we’re dealing with radiation induced brain nicrosus. His cancer has been NED almost 2 years. Please keep posting for us. Also Ed thanks for correcting some people’s misguided advice.
Joy

My husband had a similar reaction. After his second optivo and Yorvoy infusion. His numbness started in his feet, each day it was worse. After 1 week he couldn’t walk, taste, urinate ,etc. They gave him steroids. That’s stopped it. But the recovery was difficult. After 4 weeks he could walk with a walker. It’s taken longer for other nerves. Poly neurothropy. The Dr said less than 1% if the people get this reaction. He is recovering. Hopefully you will too.

Gopher38 This sounds so similar to my husbands. Like I mentioned it is VERY RARE. Less than 1% . My husband only had the combo treatment , so they couldn’t tell if it was the Opdivo or Yorvoy that caused it. They waited over a week to give steroids as the nero people didn’t think it was from the immunotherapy. He hasn’t had any other treatment since last Sept. Our Melanoma Dr. at UCSD in San Diego said IF the melanoma starts growing again he would try just Opdivo. Currently my husband still has tingling in his fingers and toes are a little numb. He sees a physical Therapist 2x week and a Ostoapathic Dr. every month. They have really helped the nerves function better and improved his motor abilities. Your discription of walking on golf balls sounds so much like neuropathy in the feet. As my husbands nerves started working there was pain and intense itching. I hope you continue improving. Nerves grow very slowly.