Possible Radiation Neuropathy - I'm Trying Not to Panic

[u/Thin_Stuff9107]

For some context, dad was diagnosed Stage IIIa squamous cell NSCLC of the right upper lobe with rib invasion back in December 2024. It was a LARGE tumor, but nothing else showed up on his PET scan or brain MRI. He began treatment in mid-January, and after 30 rounds of radiation and 5 doses of chemo, his tumor had shrunk by 30%, and the doctor stated that it "looked like Swiss cheese in the middle because portions of the tumor have died and are necrotic." The doctor said that was good and a cause to celebrate. The doctor also said "we are still treating this with curative intent, and I think we've got a pretty good shot."

Before dad began treatment for his lung cancer, he was in INSANE amounts of pain - right in his shoulder blade area on his right side. He stayed drugged up with whatever pain medication they'd give him, plus he was drinking beer and taking THC gummies. The pain was so bad, he couldn't eat or sleep unless he just passed out. Within a week of starting radiation treatment, his pain decreased significantly. For the past 6 months, if anyone asks him to rate his pain from 0 to 10, he always says zero. He hasn't taken any pain medication (except for Tylenol) since early March, and hasn't really been drinking at all, and was only taking THC gummies to help with his appetite as needed.

Last week, Occupational Therapy came in to evaluate him to start back on PT and OT here at home. I didn't stay in the room, but I overheard the OT ask him "Does that hurt your shoulder a little bit?" And he said yes. He never mentioned pain to me.

At the beginning of this week, dad asked for a gummy. I asked if he was in pain, and he said "Nope! Just recreational!" and he laughed. PT came in to see him on Tuesday, and again, I didn't stay in the room. When PT was getting ready to leave, I heard him tell dad to "put ice on it for about 10 minutes every hour." When PT left, I asked what he needed ice for. He said his shoulder was hurting him, and it felt like a constant burning. That (to me) sounded like possible nerve pain. Dad's entire shoulder and armpit has been pretty numb since radiation treatment finished up - but we were warned by radiation oncology that he could get some radiation neuropathy at some point. They had prescribed him duloxetine back in January to help with pain and also some depressive symptoms he was having. He is still taking the duloxetine.

Today when dad woke up, I asked how he slept (I ask him this every morning, and most mornings he says he slept great). He said that when he woke up to go to the bathroom in the middle of the night, his lower back was stiff and hurting a little bit. I asked if he needed me to do anything to help and he said no, he'd be alright he just needed to loosen up. Around 3 o'clock today, he went and laid down in bed. He normally goes to lay down around 4:30-5 (he watches movies, eats dinner in bed, and then goes to sleep - but 3 is pretty early). I went to check on him, and he said that his shoulder was hurting him pretty bad. I asked him to describe the pain, and he said "I don't know, it just hurts! It hurts so bad, I feel like I need to get up and walk around the room." I asked what he needed - he said he'd just taken one 650mg Tylenol. I asked if I could do anything to help and he said no. I mentioned that I had some SalonPas lidocaine patches (4% lidocaine) and asked if he wanted to try that. He said "What I want right now is a gummy!"

I got him a gummy, found the lidocaine patches and put one on him, and then I called the Oncology team. She asked him to rate his pain from 0 to 10, and he said 8. He had described his pain as an 8 back before he'd started treatment, so I was pretty shocked to hear him say 8. Back before treatment, he was pale, sweating, shaking and sick to his stomach with pain. Today's pain doesn't seem like level 8 pain, but I can't say for certain what kind of pain he'shaving. She also asked if it was stabbing, aching, burning... he said burning pain. She said that it sounded like nerve pain, but she'd reach out to his doc and get back to me.

By the time I'd gotten off the phone with the nurse, he was as pleasant as could be. Either the Tylenol or the lidocaine had kicked in - the gummy hadn't had enough time to do much. He said he'd finally gotten comfortable and he was good to go. I left him alone to rest, and the nurse called back and said the doctor had called in 5% lidocaine patches to the pharmacy, and they wanted him to get an Xray.

Once she mentioned imaging, I started panicking a little bit.

After chemo and radiation dad has been on monthly immunotherapy with Imfinzi (no targetable mutations). He lost a lot of weight before and during treatment, so the worst side effects have been weight loss and weakness. He's been getting stronger day by day, and has gained back about 10-15 pounds of his 40 pound weight loss.

Last month he had a bout of what we believe was gastritis (he has an appointment with a GI doctor in 2 weeks to figure out exactly what it was) that caused him to not eat hardly anything for several days. Because of that, he got pretty weak (thus PT and OT coming back for therapy). His oncologist paused his immunotherapy for the month of August and gave him a tapered prescription of Prednisone. He finished the prednisone last Thursday, and began feeling a bit of pain in his shoulder on Friday. The pain seems to have ramped up for the past week.

I'm scared to death that it could be progression ... but it could just as easily be radiation neuropathy. I'm taking him to get the Xray tomorrow, and hopefully we'll have an answer on Tuesday or Wednesday about next steps. He also has his next follow up and immunotherapy on the 8th.

Has anyone else dealt with radiation neuropathy? Does this sound like that? I'm trying not to freak out, but I freak out about everything, so.... haha.