Posted By: wayne 1234 3 weeks out of oral cancer treatment - 12-31-2018 02:09 AM
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!
Posted By: KristenS Re: 3 weeks out of oral cancer treatment - 12-31-2018 03:00 AM
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!
Posted By: wayne 1234 Re: 3 weeks out of oral cancer treatment - 12-31-2018 05:23 AM
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!
Posted By: gmcraft Re: 3 weeks out of oral cancer treatment - 12-31-2018 02:42 PM
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.
Posted By: wayne 1234 Re: 3 weeks out of oral cancer treatment - 01-06-2019 11:27 PM
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 -
Posted By: gmcraft Re: 3 weeks out of oral cancer treatment - 01-07-2019 01:46 PM
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.
Posted By: CM57 Re: 3 weeks out of oral cancer treatment - 01-08-2019 03:21 AM
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.
Posted By: wayne 1234 Re: 3 weeks out of oral cancer treatment - 01-08-2019 03:40 PM
poached? sounds tasty will give that a try!
Posted By: wayne 1234 Re: 3 weeks out of oral cancer treatment - 01-08-2019 03:41 PM
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
Posted By: ConnieT Re: 3 weeks out of oral cancer treatment - 01-08-2019 04:30 PM
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!
Posted By: wayne 1234 Re: 3 weeks out of oral cancer treatment - 01-09-2019 07:17 PM
well, swallowing well chewed egg salad, very lightly cooked egg and some spoonfulls of oatmeal/maple syrup.At 5 weeks, throat is sore but have to put up with it. Apparently you have to stretch the throat all over again?

Have tried some of these exercises - anyone concur ? or something different?


Falsetto Phonation or “Sirening”

Make a siren noise from a low pitch to a high pitch. Use a “ng” sound. Hold the pitch for 2-3 seconds. Repeat 10X, 3 sets, twice daily.



Masako Maneuver

Protrude tongue slightly between your front teeth. Hold tongue in this position by bearing down gently with your teeth. Swallow while keeping tongue protruded. Use this technique several times daily when swallowing your own secretions (water if you have no saliva). Repeat 10X, 3 sets, twice daily.



Effortful Swallow

Keep your mouth closed and the tip of your tongue elevated to your palate. Swallow as strong as you can, focusing on squeezing with your throat muscles (like you have something stuck in your throat and you have to get it down), repeat 10X, 3 sets, twice daily.



Mendelsohn Maneuver



Place fingers gently on your neck to feel how the larynx/voice box rises when you swallow. When you feel your larynx rise to it’s highest point, try to hold the larynx in an elevated position for 5 seconds. Repeat 10X, 3 sets, twice daily.
Posted By: gmcraft Re: 3 weeks out of oral cancer treatment - 01-09-2019 07:23 PM
Your esophagus may be scarred due to the radiation and so it requires to be stretched out again. It is important to remember that the radiation touches and impacts those parts of the body on its way, not just the cancer. You sound like you’re doing well, you have to give it time.

There are a variety of swallowing exercises. It is helpful to do them all to strengthen your swallowing muscles and keep them from becoming atrophied.
Posted By: CM57 Re: 3 weeks out of oral cancer treatment - 01-11-2019 07:52 PM
I am seeing a swallowing therapist monthly. She said, this is not something you should think of as temporary, but for life. It makes sense, all our body functions decline with age, but those that are affected by external factors will be more susceptible. I think of it as sun skin damage. It isn't noticible when you are young, but it does show up in your elder years.
The exercises you posted, are part of my regimen, but there are many more. I don't have a PDF copy, but I found this that has my exercises and a few new ones.

https://swallowingdisorderfoundation.com/free-swallow-exercises-pdf/

My therapist advised to do 60 various swallows per day, and I can count swallows when I am actually eating or drinking, but fall under one of the exercises.

One note of my own opinion. Swallowing improvement is only part of issue with getting back to normal. I am eating more foods, but still having issues with chicken, pork, beef, etc.
I think throat saliva is essential, no matter how good our swallowing returns. So that improvement, has to return through time.
But having a glass of fluid handy, could help with those foods that are getting stuck.
But my therapist advised, don't use that as a crutch all the time, or I will get dependant on washing down every bite.
Best of luck, it sounds like you are right on top of your recovery needs.
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