This all happened very fast for me. I’m a 50 yo male, I noticed some enlarged lymph nodes on the left side of neck that persisted for a month or so. Saw primary and was referred to ENT. CT confirmed 2 large nodes and a small mass at base of tongue (vallecula) about 2 cm. PET scan and MRI showed same and surgical biopsy confirmed SCC, HPV + P16.

Enrolled in neoadjuvant clinical trial in which I was randomized to 2 doses of immunotherapy (nivolumab) 14 days apart. Day 16 had TORS which removed 39 nodes on left side of neck and the primary mass at base of tongue. 2 level II nodes positive for HPV P16 SCC as well as the primary mass in Vallecula. No extranodal extension and surgical margins all clear so stage 1.

TORS recovery a bit rough. Lots of pain on swallowing but controlled with pain killers. Drain tube left in after hospital discharge with the plan to remove day 7. I have numbness among incision line (jaw line) and continues up left cheek to left ear. Tongue was very painful and swollen after TORS, due to pressure placed on it during procedure. Not debilitating, but not something that was expected. Just added a bit of pain to the swallowing issues I had post op. Pain regiment consisted of gabapentin, celebrex, Tylenol and Oxycodone post op. Do not allow yourself to get behind the pain. This happened to me on day 3 when I weaned myself off the narcs and I was unable to take any food or drink without extreme pain for 6-8 hours. I’m on day 5 and the pain is still intense. I was also treated with IV steroids in the hospital and sent home with a Medrol dose pack
For home. The steroids really help with the swelling.

My follow up is in 10 days. We are expecting a de- escalated course of radiation ( 5 weeks at 50 gY) but will see what the team has to say.

Wanted to say hi and see if anyone else has had similar experiences to mine. Would love to skip radiation with the negative surgical margins and stage 1 nodes but realize this may be fantasy.

This cancer can be converting cells outside of a clean margin that are not showing up today as cancer but will in the future in many people. It’s called field cancerization. The lower dose radiation is the best current path with few long term implications of normal high dose radiation. With it you will be sure they got everything. While this is a relatively new protocol it in clinical trials had a high degree of success and is the current thought today. It was pioneered at Mayo Clinic which has the longest term data on its success rates if you want to research it.

hi brian

my husband is also stage 4 tongue and floor of the mouth cancer he has had the operation and flap from arm to rebuild they could not remove all the cancer and get a clear margin

he has just finished radiotherapy 20/09 20 sessions 55gy for 15 mins per session

had spread to nerves and tissues he could not have the chemo as they did not think he was fit enough

he handled the radiotherapy quite well but seems to be deteriating now he is sleeping so much i would say 18 hours per day easily , is this normal

he is managing some fortisips but no food which i know is not helping

please advise if you felt this tired and its normal as they did say that all it would be rough when the treatment ended

thanks

julie

Hi Julie,

Radiation treatment is cumulative and will normally get worse for 2-3 weeks after your last session. Then, you should see slow improvements. I had to learn to judge my improvement from radiation treatment in weeks/months rather than days. Eating and remaining relatively active was key to my recovery. I would pound whatever food I could using a Vitamix or similar helped. I would dump whatever in there I could stomach. I spent many hours eating every day for those months after rads. Add a 10-15 minute walk, light yoga or chair stretches, a nap, often 2 naps a day were common for me.

Most food tasted terrible for weeks/months. A couple items that never tasted horrible - eggs, green beans, avocados, vanilla ice cream, french toast. I can recall feeling like I was eating cardboard or dirt sometimes. I just keep slamming calories and searching for new flavors. I would measure my calories every day and reward myself if i hit my calorie targets (2,000 i think?) and exercise and mindfulness exercises. Sometimes, suddenly a flavor would come back. Suddenly a banana tasted normal again when last week I had to blend it with ice cream or avocado or ....

As for sleep...everyone is different...hard to say...depends on the other 6 hours. If those are active then maybe 18 is good. If you are not seeing improvement in food intake, activity, mood, etc., I suggest getting with your medical team soon.

Brian will have excellent feedback too so hope he chimes in here as well.

Stay safe and keep the faith - Nels