Previous Thread
Next Thread
Print Thread
Page 1 of 5 1 2 3 4 5
#199267 10-17-2019 01:59 PM
Joined: Oct 2019
Posts: 32
r0se Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2019
Posts: 32
Hi all,

My tongue was removed three weeks ago following the discovery of a salivary gland tumor in my tongue. I still can't swallow - I do have a speech therapist who is working with me on getting water and apple sauce down. My trach wasn't taken out yesterday. I do have radiation starting in a few weeks, and I'd like to make some progress before that starts. Has anyone had a similar experience trying to learn how to swallow again after a full tongue removal? Is it even possible?

-r0se

r0se #199268 10-17-2019 02:00 PM
Joined: Oct 2019
Posts: 32
r0se Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2019
Posts: 32
Sorry - my trach WAS taken out yesterday. typo.

r0se #199278 10-18-2019 01:32 PM
Joined: Jun 2019
Posts: 244
Likes: 2
"OCF across the pond"
Gold Member (200+ posts)
Offline
"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 244
Likes: 2
Hi Rose,

I'm so sorry to hear abut your surgery. I have had most of my tongue removed. I have a sliver of tongue remaining. I am able to swallow liquids and soft food, but it took time and perseverance . It was frustrating (and still is) but each small win is good.

I found ice chips really helped me as I was able to work out where the back of my throat is - I know this sounds weird but it helps to visualise where everything is. Plus that feeling of when you swallow that first ice chip is utter bliss.

What swallow exercises were you given to do?


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #199287 10-20-2019 02:22 PM
Joined: Oct 2019
Posts: 32
r0se Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2019
Posts: 32
Hi there,

Ice chips might be cool to try - but I'm afraid it would make me choke. When I try solid food, I tend to just cough everything up. I'll try it and let you know! The speech therapist didn't give me any exercises and my swallow test is scheduled for post rad. Is that normal? I'm a bit worried because I would like to be working on swallowing now. I have been able to get half an espresso cup of coffee and a quarter of a cup of squash soup down with time and effort. If you (or anyone) have any more recommendations, let me know. Thank you for reaching out!!!

r0se #199288 10-20-2019 04:53 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Hi Rose! On 10.16.19, I sent a couple of other newer members going thru a similar situation the following post which also applies to you....

We have on ongoing list of the best foods for patients who have eating problems or are relearning how to eat after rads/surgeries. These foods have a smoother texture and can be a bit bland but for someone who can barely swallow and/or has painful mouth sores they work great....

OCFs List of Easy to Eat Foods


Most swallow tests are done after all treatments have been completed. Surprisingly, some patients have a hard time eating/drinking after only a couple days of not doing it. Those muscles very quickly forget how to function together. Best things to help are first select the proper food that you can eat. Take small bites and make sure you have plenty of extra time to eat/drink so you arent rushed. Those minor changes can help you to do better with your swallowing. Id highly recommend check at your treatment facility to set up a meeting with a SLP, or nutritionist or someone that can help make eating and drinking easier. It sure cant hurt to have another specialist in yoru corner to help get you past the rough spots.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #199298 10-22-2019 06:18 AM
Joined: Oct 2019
Posts: 32
r0se Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2019
Posts: 32
Hi there,

Thank you for that insight about the swallow test after radiation! I also spoke to my speech therapist, and she said she will try to book a swallow test earlier and will examine my swallowing with the nose test (the video cam through the nose) next week. Another question - how does everyone deal with the salvia?! I am really struggling with it and coughing alot. Any tips?

You guys are great, thank you.

r0se #199303 10-22-2019 02:02 PM
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
If it Is ropey saliva that you are trying to get rid of, one good way is to use a Waterpik. Put warm water into the tank with a bit of magic mouthwash. Then use the tongue scraper attachment and on the lowest setting, clean the saliva out of your mouth. You will have to do,this several times a day. It will keep you mouth feeling fresh.


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.
gmcraft #199310 10-24-2019 12:35 PM
Joined: Oct 2019
Posts: 32
r0se Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2019
Posts: 32
Hi there,

Hmmmm I don't have a Waterpik, but I do have some green sponge brushes from the hospital. I could try those? Any other ideas?

r0se #199311 10-24-2019 02:27 PM
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
The green sponges may work but may not get rid of the ropey saliva completely. Give it a try.


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.
r0se #199312 10-25-2019 01:05 AM
Joined: Jun 2019
Posts: 244
Likes: 2
"OCF across the pond"
Gold Member (200+ posts)
Offline
"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 244
Likes: 2
I didn't have a waterpik when I first came out of hospital, I too had sponges (mine were pink) which helped and I did a lot of rinsing my mouth with warm water. I also used a lot of tissues to spit into..

The waterpik is a great investment as it keeps your mouth clean and can get the saliva that hides around your mouth. If you get the opportunity to buy a waterpik (amazon is a great place to shop) then get one that has a tongue scraper as you'll be able to pull the thick stuff that is sitting at the back and then rinse it with warm water from the pik.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Page 1 of 5 1 2 3 4 5

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5