Diagnosed with Base of Tongue cancer from HPV-16 squamous cell cancer in Late August. Went to Mayo Clinic and started treatment in mid October - received proton therapy 5 days a week and chemo once a week for 7 weeks.
On feeding tube since early November as could not swallow food any more., Finished treatment on Dec 7 2018 and got home on Dec 10th.
1st week kinda bad, 2nd and third week pretty bad on recovery. Lots of Phlegm and pain. On a 12mcg Fentanyl patch since arriving home and supplement with 1000ml of liquid Tylenol 4x a day, and additional 1-3 ml of oxycodone as needed. Also 10-20 ml 6x day of Tussin to reduce phlegm - works well sometime not so well other times. Throat feels buring quite a bit at times.
Phlegm leaks down the esophagus if I don't sleep nearly upright. Starting to sleep better and seeing a reduction in phlegm at end of 3rd week of recovery. Still on feeding tube and am being encouraged to start with chewing ice and swallow small amounts of water.
Christmas drove me nuts with all the food I couldnt eat. Still - made the family and friends cookies as I usually do this time of year. Was good therapy.
On 6 containers of Kate's Farm Core Essentials (325 calories a can) and am maintaining my weight, went up a pound or so (203) after starting treatment at about 225. Am noticing loss of muscle mass and want to supplement what I am putting in my feeding tube.goes in
Also adding in Natural Gator ade for sodium (was low) and adding liquid magnesium and Vit D3 per the doctors okay and demand I supplement magnesium.
Both local doctor and Mayo clinic doc are pleased with improving blood work.
Look forward to beating this and getting back to eating - so am here to try and get pointers and help,
Thanks!

Have you been practicing swallowing all along? If not, take it slowly ... you don't want to aspirate anything! (Actually, you'll have to keep a watch on that for a very long time either way, but if they didn't mention it to you ... now you know.) Yes, definitely work on that, and as you get to feeling better, there ARE therapists who can help with swallow if you find you need that.

Sounds like you've been doing a lot of the right things, and have doctors who are on top of the details ... that's great! Don't fret if you're not feeling great right away. It's a long-haul recovery, and we're all here to keep cheering you on as long as you need. Me, I still sleep propped up these several years later ... it just helps. (That, and Prilosec ... I can tell when I skip too many nights!) But it was a doctor's recommendation first.

If you're already starting to gain weight back, you're doing great! Very proud of you and for you! Woo hoo!

Lots of hugs and happy New Year wishes!

Thanks very much ! Mayo clinic calling me back Jan 11th for swallow test with flouroscope procedure to see how things are working. They want me to suck on ice chips and do some minor swallowing starting this week.
Cancer was at base of tongue and months before I knew it, I couldnt lean back and sip tea or coffee, as it went down the air hole. So a long time in the making - hope it heals up...

Thank you for the reply!

It is important to do the swallowing exercise, even just dry swallows. The swallowing test will determine whether you need further support with swallowing and what kinds of food you can swallow now. If you do try to drink, take a small sip each time and totally focus on swallowing it. I know this sounds weird, but your aim is to practice swallowing rather than have a gulp of coffee to quench your thirst.

Finally got small gulps of water down and a lightly fried egg, Throat really sore rest of day but am sure it will get better. Wierd tast in mouth and throat -

Have you tried poached eggs? They may work better than fried eggs. Unfortunately, taste change is a known side effect of treatment. My husband used to complain about jello tasting like metal and the same went for red wine. It does get better over time.

You could try to buy salt free broth, and cook in beaten eggs to make your own egg drop soup. Let it get very cool before you eat it. But this will do two things, get you confident on swallowing again, and get some protein and fluid.
Also, soft cheeses, like Brie or low sodium cottage cheese.
Things will taste weird for months, so best to keep it bland.
I was finding even sugar was a little weird, but vanilla tasted normal for some reason, so I started using vanilla syrup in my coffee. It will be a slow process, but you will get through it fine.

poached? sounds tasty will give that a try!

will try that as well - throat still pretty sore after 5 weeks even - guess i am expanding my throat all over again - inflammation and pain doesnt help but will keep after it

my husband is still complaining 3 months later of a sore throat. He did everything he could to NOT do what he was told to do though! He says that's not true but his mind was so messed up during treatment that I doubt he remembers much of anything honestly.

He started going to a speech pathologist to work on swallowing as he had not done the exercises during treatment. He had the same diagnosis as you. Now he is going to work on neck exercises so his neck does not freeze up like it did for one of his co-workers.

They have given him the go ahead for more foods. Surprisingly, once he started doing some of the exercises, he gained more confidence to try things and is slowly adding in foods. Most don't go well but then he went back to all his old way of eating rather than easing into things with soups and foods with no edges (as the dietician refers to some foods!).

It's a process of trial and error for sure and I wish you the best on this healing journey!