Under went 7 weeks of chemo once a week and 7 weeks of proton radiation for a base of tongue cancer that was inside the tongue and so not really operable. Designated as Stage II HPV-16 squamous cell – had an enlarged right lymph gland and a partially sowllen left lymph gland.
Almost impossible to swallow about 2 weeks into the treatment as the tumor was getting larger and had the stomach tube put in. Saved my life.
Finished treatment on 7 Dec and stayed a few days before traveling 5 hours home. Originally was told that I could start swallowing and expect some relief about 2 weeks into recovery, but then was told that 1st 3 weeks get progressively worse and then will start to improve. The second advice was correct. Make sure who you listen to even at Mayo.
Supposedly prognosis is very good, but am just starting into the 4th week and the phlegm is finally getting a bit better. Staying with 15 ml of Tussin very 4 hours or so, and some child's Benadryl 1-5 ml as need to help dry up.
Pain – got off the 12mcg fentanyl patch a day or so ago, and take liquid adult tylenol 1000 ml every 6 hours per doctor. Adding oxycodone if needed to sleep.
Throat pain a little less, but even small sips of water go down hard. ANYTHING too warm burns going down, ie, tried a small sip of chicken broth tonight.
Trying to dry swallow and it's painful – but as I was told, gets a little better every few days.
Hoping to eat mushy stuff in a week or so. Had looked forward to grilled ham and cheese 6 weeks after treatment – doesn't seem possible right now…
Doc said 7 weeks plus for normal food but to get on the tongue exercises – they will help.
Feeding tube : KEEP that thing SNUG else food will leak out and irritate the skin where the surgeons tried to put 'button' stitches to hold the tube against the stomach wall. Didnt watch it and missed washing until late in the day and the dried food had irritated the skin where the scar was form the button, it started to bleed. CLEAN the area 3 times a day if need be. Ended up washing well and putting some bacitracin on the area and it helped tremendously.
Hope the 90% five year survival the doc told me applies to me still – that they told me at the beginning of treatment. Expect to go longer but will have to see.