Hi All,

This is my first post..I hope that I am doing it right. First, j wish I found this community when my father was first diagnosed. I’ve spent the last few hours reading through so many threads and am so thankful for so many of you sharing your journeys.

My father is 7 weeks out from treatment. He was doing really well weeks 1 and 2 post radiation and chemo (no surgery), but every week, the road to recovery seems tougher and tougher.

Prior to treatment, he was in incredible pain. My father is a tough man who throughout my life has never really show any emotion. Watching him cry out in pain was the toughest thing I’ve endured. The pain was significantly better around week 2-3 of treatment...we even went down to just one type of pain medicine as needed.

He has done great with nutrition, is diligent about using his feeding tube, and is even gaining weight but the pain levels in one particular part of his jaw are increasing daily. We visited the MO, RO, and ENT 2 weeks ago and all said he was healing really well despite the pain (which they said was normal). The MO placed him on morphine again which helped for a few days, but the pain is back with a vengeance.

I try to ask extremely specific questions regarding his pain and pain levels as I’m also his translator/medical coordinator. Swallowing liquids is uncomfortable, but no longer painful like it was pre-treatment and during the first few weeks of treatment. From what I’ve gathered, it sounds like nerve damage or something pressing on a nerve along his jaw.

This is our second cancer (he is a colon cancer survivor as well) and I have great trust in his team. Along with their knowledge, I feel they truly understand my father as a person. Although he is on morphine, I’m hesitant for him to move to stronger opioids. I can’t stand to see him in pain, but given his depression and precious alcohol dependence (self medication), I‘d rather get to the root cause of the pain vs. keep masking it with pain medication. Am I being reasonable? There has to be some type of reason for the pain....

Are there questions I may not think to ask his medical team?

Anyone else with this type of pain?

Our post treatment PET scan is not for 5 more weeks. The doctors offered to do it earlier if he really wanted to, but he said no as he has a clear understanding that radiation and chemo need time to work and his doctors all say he is healing well...I am calling his team in the morning to discuss pain management and welcome any feedback.

Thank you all again for sharing your stories.

I finished my Radiation on 7/10. (no Chemo). My Oncologist told me my worst day would be a week after my Radiation. I had intermittent pain in my jaw a few times a week during my 33 treatments. It started after the 3rd week. I was told that it was normal & was caused by 'excited' nerves. Day 7 after trearment was indeed my worst day of this cancer. I was very nauseous & fatigued. My jaw still bothers me & my teeth & gums are very sore. I have been able to control pain with hydrocodone but I don't want to take it any longer than I have too. I am hoping this too shal pass with time. Best of luck to your father.

Thank you for sharing.

Last radiation was 6/1. Prior to radiation/chemo, pain regiment was Morphine ER, Hydrocodone, and CBD/THC drops. I know this is last part is controversial for some and I respect that, but it was recommended by his oncologist and really helped.

After week 3 of radiation, we went down to just the Hydrocodone. Things were really looking up and his outlook was so positive. Treatment ended and things seemed to be going ok...

And then, about 3 weeks ago, everything went downhill. He is now on Morphine IR, Gabapentin, and CBD/THC drops again. The pain seems to be getting worse daily. I just don’t understand why everyone says this is “normal” and am really struggling with accepting that. I felt so prepared for the treatments, the feeding tube, the port, the hydration sessions, the side effects, etc, but no one talked about how hard things could be POST treatment. I know it’s different for all patients, but I wish I could have at least been told it may get way worse before it starts to get better.

I’m going to schedule a call with the hospital’s pain management clinic tomorrow morning. I am desperately searching for anything any of you might feel I am missing. At this point, I don’t know what else to do. We are still 3 weeks out from all of his post treatment scans/tests....

I finished treatment (radiation/ chemo) late October 2019. I experienced a lot of pain prior to treatment that was treated with hydromorphone which helped. During treatment, a combination of slow release hydromorphone and lyrica kept pain well managed. Around Christmas 2019, jaw pain flared back up - apparently due to swelling caused by radiation necrosis. The pain was treated with increased dose of hydromorphone and lyrica. Around March, I started to gradually reduce hydromorphone and then lyrica. Totally off pain meds now and no real pain - i have some residual trismus - but no pain unless i try to force my jaw open.