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3 weeks out of oral cancer treatment #197736
12-30-2018 07:09 PM
12-30-2018 07:09 PM
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wayne 1234 Offline OP
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wayne 1234  Offline OP
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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!

Re: 3 weeks out of oral cancer treatment [Re: wayne 1234] #197737
12-30-2018 08:00 PM
12-30-2018 08:00 PM
Joined: Jun 2013
Posts: 287
alabama
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KristenS Online
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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!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: 3 weeks out of oral cancer treatment [Re: KristenS] #197738
12-30-2018 10:23 PM
12-30-2018 10:23 PM
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wayne 1234 Offline OP
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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!

Re: 3 weeks out of oral cancer treatment [Re: wayne 1234] #197740
12-31-2018 07:42 AM
12-31-2018 07:42 AM
Joined: Oct 2012
Posts: 1,056
Toronto, Canada
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gmcraft Offline

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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.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: 3 weeks out of oral cancer treatment [Re: gmcraft] #197757
01-06-2019 04:27 PM
01-06-2019 04:27 PM
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wayne 1234 Offline OP
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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 -

Re: 3 weeks out of oral cancer treatment [Re: wayne 1234] #197760
01-07-2019 06:46 AM
01-07-2019 06:46 AM
Joined: Oct 2012
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Toronto, Canada
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gmcraft Offline

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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.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: 3 weeks out of oral cancer treatment [Re: gmcraft] #197763
01-07-2019 08:21 PM
01-07-2019 08:21 PM
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Posts: 55
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CM57 Offline
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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.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
Re: 3 weeks out of oral cancer treatment [Re: gmcraft] #197764
01-08-2019 08:40 AM
01-08-2019 08:40 AM
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wayne 1234 Offline OP
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poached? sounds tasty will give that a try!

Re: 3 weeks out of oral cancer treatment [Re: CM57] #197765
01-08-2019 08:41 AM
01-08-2019 08:41 AM
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wayne 1234 Offline OP
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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

Re: 3 weeks out of oral cancer treatment [Re: wayne 1234] #197766
01-08-2019 09:30 AM
01-08-2019 09:30 AM
Joined: Aug 2018
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ConnieT Offline
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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!


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: 3 weeks out of oral cancer treatment [Re: ConnieT] #197769
01-09-2019 12:17 PM
01-09-2019 12:17 PM
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wayne 1234 Offline OP
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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.

Re: 3 weeks out of oral cancer treatment [Re: wayne 1234] #197771
01-09-2019 12:23 PM
01-09-2019 12:23 PM
Joined: Oct 2012
Posts: 1,056
Toronto, Canada
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gmcraft Offline

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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.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: 3 weeks out of oral cancer treatment [Re: gmcraft] #197782
01-11-2019 12:52 PM
01-11-2019 12:52 PM
Joined: Mar 2018
Posts: 55
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CM57 Offline
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Joined: Mar 2018
Posts: 55
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.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
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