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Permanent PEG? #199267
10-17-2019 12:59 PM
10-17-2019 12:59 PM
Joined: Oct 2019
Posts: 25
Boston, MA
R
r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
R

Joined: Oct 2019
Posts: 25
Boston, MA
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

Re: Permanent PEG? [Re: r0se] #199268
10-17-2019 01:00 PM
10-17-2019 01:00 PM
Joined: Oct 2019
Posts: 25
Boston, MA
R
r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
R

Joined: Oct 2019
Posts: 25
Boston, MA
Sorry - my trach WAS taken out yesterday. typo.

Re: Permanent PEG? [Re: r0se] #199278
10-18-2019 12:32 PM
10-18-2019 12:32 PM
Joined: Jun 2019
Posts: 132
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 132
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, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Dizz_zzey] #199287
10-20-2019 01:22 PM
10-20-2019 01:22 PM
Joined: Oct 2019
Posts: 25
Boston, MA
R
r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
R

Joined: Oct 2019
Posts: 25
Boston, MA
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!!!

Re: Permanent PEG? [Re: r0se] #199288
10-20-2019 03:53 PM
10-20-2019 03:53 PM
Joined: Jun 2007
Posts: 10,419
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,419
PA
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
Re: Permanent PEG? [Re: ChristineB] #199298
10-22-2019 05:18 AM
10-22-2019 05:18 AM
Joined: Oct 2019
Posts: 25
Boston, MA
R
r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
R

Joined: Oct 2019
Posts: 25
Boston, MA
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.

Re: Permanent PEG? [Re: r0se] #199303
10-22-2019 01:02 PM
10-22-2019 01:02 PM
Joined: Oct 2012
Posts: 1,166
Toronto, Canada
G
gmcraft Online
Assistant Admin
gmcraft  Online
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,166
Toronto, Canada
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.
Re: Permanent PEG? [Re: gmcraft] #199310
10-24-2019 11:35 AM
10-24-2019 11:35 AM
Joined: Oct 2019
Posts: 25
Boston, MA
R
r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
R

Joined: Oct 2019
Posts: 25
Boston, MA
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?

Re: Permanent PEG? [Re: r0se] #199311
10-24-2019 01:27 PM
10-24-2019 01:27 PM
Joined: Oct 2012
Posts: 1,166
Toronto, Canada
G
gmcraft Online
Assistant Admin
gmcraft  Online
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,166
Toronto, Canada
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.
Re: Permanent PEG? [Re: r0se] #199312
10-25-2019 12:05 AM
10-25-2019 12:05 AM
Joined: Jun 2019
Posts: 132
D
Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 132
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, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
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