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Permanent PEG? #199267
10-17-2019 01:59 PM
10-17-2019 01:59 PM
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Boston, MA
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r0se Offline OP
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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 02:00 PM
10-17-2019 02:00 PM
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r0se Offline OP
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Sorry - my trach WAS taken out yesterday. typo.

Re: Permanent PEG? [Re: r0se] #199278
10-18-2019 01:32 PM
10-18-2019 01:32 PM
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Dizz_zzey Offline
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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 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Dizz_zzey] #199287
10-20-2019 02:22 PM
10-20-2019 02:22 PM
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r0se Offline OP
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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 04:53 PM
10-20-2019 04:53 PM
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ChristineB Offline
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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 06:18 AM
10-22-2019 06:18 AM
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r0se Offline OP
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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 02:02 PM
10-22-2019 02:02 PM
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gmcraft Offline
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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 12:35 PM
10-24-2019 12:35 PM
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r0se Offline OP
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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 02:27 PM
10-24-2019 02:27 PM
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gmcraft Offline
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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 01:05 AM
10-25-2019 01:05 AM
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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 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Dizz_zzey] #199334
10-27-2019 04:03 PM
10-27-2019 04:03 PM
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r0se Offline OP
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Thank you, all! I decided not to get the waterpik because it's a little expensive. I also love to travel, and I want to find strategies that will allow me to do so. A waterpik would be bulky on the road. I maybe optimistic, as I am
not sure how much traveling someone with a PEG and a bad voice can do, but it's the goal I am working toward.

I was able to try Mucinex. It appears to be working.

Re: Permanent PEG? [Re: r0se] #199335
10-27-2019 05:50 PM
10-27-2019 05:50 PM
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gmcraft Offline
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I bought our Waterpik at Costco. For $50.- (Canadian), we got a countertop model and a travel model. My husband had a PEG tube for more than two years. What I found most difficult was whenever we went out of town, we had to bring boxes of Ensure with us because he was using a special high-calorie prescribed Ensure. It was a drawback, no doubt about it. But if you can swallow, you probably will be able to travel and not have to bring a Waterpik along.


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] #199337
10-28-2019 02:40 AM
10-28-2019 02:40 AM
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Michael Young Offline
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i am surprised that your trach got taken out before radiation

I had to keep the trachie until radiation finished


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18
CT - NED 10/18
CT - NED 02/19
CT - NED 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
Re: Permanent PEG? [Re: Michael Young] #199340
10-28-2019 11:01 AM
10-28-2019 11:01 AM
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Dizz_zzey Offline
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My trachie was removed whilst I was in hospital. It all depends on the individual and their needs.


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 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Michael Young] #199341
10-28-2019 12:11 PM
10-28-2019 12:11 PM
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r0se Offline OP
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The doctors were reluctant, but I made it my mission to prove that I didn't need it. I bought something to monitor my oxygen and put a cap on my trach. I then kept the trach cap unless I was sleeping and kept records of my oxygen level. The hard data convinced them. However, I was only able to do this because I had a visiting nurse who was also monitoring my oxygen level and I had family or friends who were with me most of the time.

Re: Permanent PEG? [Re: Dizz_zzey] #199412
11-10-2019 04:40 PM
11-10-2019 04:40 PM
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r0se Offline OP
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Hi all,

Has anyone here had a total tongue removal? I'd love to get the experience of someone who has. I am really concerned about what my future quality of life will be like. I currently have lymphedema under my chin, a PEG which I rely on completely to feed myself, and I almost always have salvia in my mouth. This is 6 weeks after the surgery. I also started radiation a week ago. It would be helpful to know what will recover and what will not. I get that much of this is on me - I am working on swallowing and speaking every day, with limited success. Thank you for your time.

Re: Permanent PEG? [Re: r0se] #199413
11-10-2019 05:26 PM
11-10-2019 05:26 PM
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ChristineB Offline
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Hi Rose!

Im sorry Im not the exact person you are hoping to hear from. I wanted to let you know we do have many members who have had total glossectomies. Quite a few have found posts from Miss Kate to be very helpful and encouraging. Shes a big success story of overcoming tremendous obstacles most people can never imagine facing. Heres a link to her posts...

Misskates profile

Misskates posts







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] #199415
11-11-2019 07:00 AM
11-11-2019 07:00 AM
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gmcraft Offline
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tamvonk is another member whose husband has had a total glossectomy and he appears to be managing very well. I do encourage you to look up her posts.


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: ChristineB] #199420
11-13-2019 11:03 AM
11-13-2019 11:03 AM
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r0se Offline OP
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Hi Christine,

Thank you so, so much. I am reading her posts
now and am finding them super useful.

Warm Regards,
Hanna Madsen

Re: Permanent PEG? [Re: gmcraft] #199421
11-13-2019 11:04 AM
11-13-2019 11:04 AM
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Excellent! Thank you. I will look up the posts

Re: Permanent PEG? [Re: r0se] #199437
11-14-2019 10:05 AM
11-14-2019 10:05 AM
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r0se Offline OP
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Hi all,

New question - has anyone had lymphedema in their face and neck? If yes, how long was it until you began to see results from compression and massage? My PT didn't want to give me a timeline because everyone is different, but it would be useful to know if I need to wait months or years before seeing results.

Re: Permanent PEG? [Re: r0se] #199438
11-14-2019 11:31 AM
11-14-2019 11:31 AM
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ConnieT Offline
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my husband had it and did some machine or something...i never saw what it was! . he is 13 months from radiation and chemo and you would never know looking at him that he had stage 4a BOT cancer except he lost 60 lbs and has put little of it back on. face back to normal for the most part. he says it's still a bit hard but not much under his chin. he started the treatment in the spring so 6-9 months so far.

Last edited by ConnieT; 11-14-2019 11:31 AM.

Spouse of 57 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.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
Re: Permanent PEG? [Re: ConnieT] #199439
11-14-2019 11:56 AM
11-14-2019 11:56 AM
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r0se Offline OP
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Oooh thank you Connie - that is a blessing to know. Did he start lypmh treatment during after treatment?

Re: Permanent PEG? [Re: r0se] #199447
11-16-2019 01:55 AM
11-16-2019 01:55 AM
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It absolutely is possible to swallow after a total glossectomy! I had mine done on September 4th,2019. I oddly found it easier to eat some crunchy foods before i started radiation as opposed to mashed potatoes and pudding. I found that the softer foods like those tend to stick more on my flap and were harder to get down than Doritos or in my case some Taco Bell Tostada. Don’t get me wrong it was still pretty challenging to eat the 3-4 small bites that I did but the taste was worth it. Do not be afraid to try any food you feel confident in or even just putting it in your mouth for the taste and having to spit it out is okay. It’s part of the learning process. I am currently halfway through radiation and chemo and don’t have much of an appetite but I am very hopeful to try some foods for thanksgiving! I pray your recovery continues and progresses well!

Re: Permanent PEG? [Re: HannahReese] #199448
11-16-2019 03:19 AM
11-16-2019 03:19 AM
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Dizz_zzey Offline
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Hey Hannah,

We have the same cancer. I had my tongue removed in August and am niw 2 weeks post rads. I'm impressed with you trying crunchy foods before rads.I also agree with trying stuff that you feel confident in trying and not being afraid to spit things out if not successful.

Good luck with your rads. I hope your appetitie comes back. I found watching food/cookery shows helped keep mine going until week 6.


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 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: r0se] #199450
11-16-2019 07:37 AM
11-16-2019 07:37 AM
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ConnieT Offline
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he started it a few months after treatment. his last rad appt was Oct 4, 2018. He started the lymphodema treatments in March or April.


Spouse of 57 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.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
Re: Permanent PEG? [Re: Dizz_zzey] #199453
11-16-2019 08:58 AM
11-16-2019 08:58 AM
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Hey!
I watched cooking shows/food network the whole time I was in the hospital post surgery! 😂 my husband and family all thought I was crazy because I couldn’t speak let alone eat any food! I just love food too much to just stay away! I do cook for my husband still even though I can’t eat it and I’ve apparently got the magic touch even without being able to taste test to food too much. I am soo ready to try some foods at thanksgiving! And congrats on being post radiation!

Re: Permanent PEG? [Re: HannahReese] #199504
11-23-2019 05:59 AM
11-23-2019 05:59 AM
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r0se Offline OP
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Hi all,

I am now half way through my 30 sessions of radiation. After that, my treatment is over! I was fitted for a prosthesis for speaking this week - not sure it will work for me because my flap doesn't move (my entire tongue was surgically removed), but it's worth a try. I've been massaging my lymphedema, but I can't put on a compression mask because it presses my skin against my mouth and causes mouth sores. So no progress on facial swelling, but I figure it will improve post rad. I have mouth sores across my entire inner lip which are rather painful. The salvia is also much worse. Sometimes, I will spontaneously projectile cough salvia. My
mouth is always full of salvia. I can talk, but I try to avoid it because of the salvia. I am always rinsing my mouth. I am also coughing all the time - despite the cough medicine that I have. I wake up every few hours to
cough. Sometimes I cough up salvia, sometimes not. I am drinking coffee, water, and hot chocolate at luke warm/cool temperatures but I cannot swallow much else. I tried a piece of soft bread - I was able to chew it all, but then 15 minutes later I coughed up a literal ball of bread. I had not felt any clog in my throat. I probably won't experiment with that again, though I really do want to try chewing. I try to walk 20,000 - 25,000 steps per day and run or cycle. Feeling really isolated and lonely, but also too gross to hang around fellow humans. If anyone has had similar experiences or thoughts on salvia/cough/swallowing practice/social anxiety, post here. Looking forward to ending treatment and beginning to heal:)

R0se

Re: Permanent PEG? [Re: r0se] #199505
11-23-2019 06:58 AM
11-23-2019 06:58 AM
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gmcraft Offline
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The swelling will subside eventually after the radiation treatment is over. In the meantime, do you have access to the counseling department at your hospital? They may be able to talk to you about your sense of isolation and social anxiety. Or, if you prefer, your doctor can give you a prescription for anti-anxiety medication.

Are you sleeping on an incline? Many patients do because of the saliva or post-nasal drip problem. Swallowing is hard for the time being because the radiation penetrates the skin and while it burns away the cancer, it also burns the insides. Neck sores form outside but there are sores inside as well that you can’t see. You have to give it time to scar and heal. Don’t be in a rush to swallow food especially bread. It doesn’t slide down and gets stuck. You are better off trying a poached egg if you really want to 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: gmcraft] #199510
11-24-2019 09:47 AM
11-24-2019 09:47 AM
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r0se Offline OP
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Hi all,

The swelling is not from radiation alone - it's also from surgery and it's chronic. I do hope that lymphedema therapy post-rad will give me my face back.

To be honest, I don't feel a need for anti-anxiety meds or a need to talk to a counselor. I do have a counselor who I see regularly. I am avoiding people on purpose because my mouth is always filled with mucus that further obscures my speech (my tongue was removed on Sept 27th, so my speech has been impaired since then) and causes drool/coughing up of salvia. I'm just not fit to communicate or be around people at this stage. Don't know if people had similar experiences?

I did not think about sores that I may not see/feel! That's a really good point.

Thank you all.

R0se

Re: Permanent PEG? [Re: r0se] #199512
11-24-2019 11:06 AM
11-24-2019 11:06 AM
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Dizz_zzey Offline
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I still have a swollen face in some areas, but it is going away. I massage my face twice a day to help it all drain away. Last week I wore make up as I realised I was starting to look like myself, and so I felt in the mood to have a play around.

Yep the drooling, the excess mucus/saliva. It is awful but I promise you it will get better, but well after you've finished rads. Mine is much better now, although I still have some, it is far less than what I had during rads.

I had sores in my throat and at the entrance to my throat. They are slowly going and I have now managed to drink some ensure and eat a yoghurt after a few weeks of not being able to drink/eat anything except tepid water. I also put a finger in my mouth to feel where some sores are. I was really surprised at how many I have in my mouth as some aren't visible.

Keeping your mouth clean will help the ulcers heal once rads is finished.

If you're managing 20,000 steps a day still then I'm well impressed. You doing maginificantly well anyway, but the additional steps are awesome. Don't beat yourself up if you need a break or rest day(or 2). You are awesome.


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 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Dizz_zzey] #199530
11-28-2019 11:14 AM
11-28-2019 11:14 AM
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r0se Offline OP
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Hi Dizz_zey and OCF crew,

Thank you so, so much for reaching out again. It is definitely a comfort to hear from you all and know what is coming. I'm surprised to hear that you can have sores in your throat/mouth that you didn't even know about! Alarming, haha. I will definitely watch out for that. I just finished my fourth week of radiation - definitely at the tepid water only stage. I still keep trying to cheat and find other liquids to drink. I tried to drink room temperature coffee yesterday and promptly "sputtered coughed". (As Diss_zey says). I'm going to keep trying the coffee because I'm not really sleeping at night. (Unless black, lukewarm coffee can go through the PEG?) I'm also keeping my head slightly elevated by using two pillows in a 45 degree angle configuration - it didn't help with the coughing or mucus that keeps me up, but I'm told that it should. I am also avoiding people as much as possible - I can't speak well and I'm still cough vomiting mucus. And I'm massaging my face twice a day to reduce the swelling. And doing jaw/cheek/mouth/swallowing exercises three times a day. Definitely willing to do anything that will help my body heal fast. Although, I know I won't heal that fast...still got 11 more sessions of rad and then weeks of healing...

R0se

PS DEFINITELY taking your advice and keeping my mouth very, very clean.

Re: Permanent PEG? [Re: r0se] #199532
11-28-2019 11:45 AM
11-28-2019 11:45 AM
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Dizz_zzey Offline
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You're doing so well. 11 more to go then it's done.
As for lukewarm black coffee, I did, I've also put herbal teas and black tea through mine, I just made sure I flushed the tube through with some warm water to prevent staining.
With my sleep I found the sofa gave me the best position and support for my head. I still get much sleep at night, so daily naps helped me through.


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 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Dizz_zzey] #199572
12-05-2019 09:20 PM
12-05-2019 09:20 PM
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r0se Offline OP
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Hi all,

SIX MORE RADIATION TREATMENTS TO GO! And then I am done. With treatment - not speech therapy, recovery, etc. My medical team says that I am doing a great job. I do have a new sore (?!) as of today - even though I've been doing an insane amount of saltwater rinses. And I am unable to swallow anything - it just feels impossible to even get water down. I do have a PEG, so my weight is stable. I'm not in any pain. My skin is red, but not that bad. I am not tired and still walking/running/biking. Still coughing/ spewing random mucus/unable to speak well, so I am staying away from humans as much as I can. I'm going to ask my speech therapist tomorrow if I should keep trying to at least swallow some water anyway, or let my body give up for awhile. Definitely looking forward to finishing treatment, but aware that there are some weeks to go before I begin to see marked improvements in mucus, coughing, etc.

Re: Permanent PEG? [Re: r0se] #199574
12-06-2019 02:36 AM
12-06-2019 02:36 AM
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Dizz_zzey Offline
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You are doing so well. Those last 6 will fly by. If you can't swallow water, try to do some dry swallows to keep your swallow strong. If you can sip even just a teaspoon of water then that'll be amazing.
I'm so impressed that you're still running. That's so good smile
Do you have some cream fir your neck? Aftersun or something with aloe vera? I kept mine in the fridge as it was so soothing when I put it on after rads.

We're all rooting for you!!


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 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: r0se] #199576
12-06-2019 09:17 AM
12-06-2019 09:17 AM
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ChristineB Offline
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Sounds like you have been doing very well!!! Pay close attention to your swallowing!!! Its amazing how quickly the body will forget how to function properly when not used as it had been before. A few days of not swallowing anything can make those muscles forget how they work together. Even taking small sips here and there every day will keep those muscles working. Its a good idea to discuss swallowing sips of water every day with your medical team.

This last week is usually the worst week of rads for most patients. The first few after finishing arent much different but its all part of the process to becoming cancer free. Focus on whats within your control, especially your intake. The better you do with daily calories and water, the easier everything will be.

Best wishes with your continued recovery!!!


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] #199616
12-19-2019 01:36 PM
12-19-2019 01:36 PM
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r0se Offline OP
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Hi all,

Just posting an update. I finished my treatments on Monday. I am feeling really, really tired. I have alot of mucus and choked on it Tuesday. I have alot of sores. I have a feeding tube, so my weight is stable. I know that I won't feel better for a month or so. That said, I don't even know what better will be. I don't have a tongue now. I lost my job. I have alot of fear and anxiety for the future. I don't want to live the rest of my life with a feeding tube. And have people judge me for my inability to speak clearly because I don't have a tongue.

R0se

Re: Permanent PEG? [Re: r0se] #199617
12-19-2019 02:15 PM
12-19-2019 02:15 PM
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ChristineB Offline
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Rose, congrats on completing your treatments!!! Not at all easy!!!

Right now is the hardest time for almost everyone who has been thru rads. Its cumulative where the further you get into your treatments, the harder everything becomes. This can put a tremendous amount of stress on patients and caregivers alike, especially when they are not progressing as quickly as they think they should. Im sure you arent feeling very well at this time and unfortunately, to be completely honest... a full recovery for almost everyone who's been thru rads is much more than one month! In fact, many doctors have said its one month of recovery for every week of rads. The best thing I can tell you is sleep when you are tired. Rads can wipe you out!!! Even though rads ended, its still actively working which is why you are so tired. You've been thru ALOT!!!

Its best to focus only on what is within your control... your intake and pain management. For at least the first year after finishing rads, you need to continue taking in 2500 calories and 48-64 oz of water... every single day!!! Dont fret!!! Your body is working OT trying to rebuild itself after the rads caused damage. You have a long way to go but very soon you will get up one morning and feel almost ok again... its going to be a surprise around 2-3 weeks post rads. Thats what we call around here as .... crawling out of the tunnel. . Its the tipping point where you can actually notice an improvement instead of feeling horrible 24/7. A complete recovery from everything you have been thru is 2 years. Yes, it really does take 2 years to get back to the best health thats closest to how you were before OC, treatments and recovery. But.. that wayyyy down the road, nothing you should concern yourself with right now. Focus on the positive and in time you will feel a little better. I know its not easy and wondering what the future holds can bring on unneeded stress and worry. No one ever has worried themselves out of any situation or had a test result changed from it. All worrying does right now is to make everything so much harder. All the negative issues we all tend to think about when we are down and out does not do anything at all to help any of us. If you havent already done so, I suggest asking about a therapist from your doctor or treatment facility so you can talk to a professional who understands what cancer patients go thru. It cant hurt, many patients also need anxiety meds on a temporary basis to help them get thru the whole ordeal that can be overwhelming to many.

You're almost at the point where you will be able to see your improvements and feel more positive about your situation. I do understand everything you're dealing with and I know its NOT easy at all with so many major changes happening in such a short time. We can never fully prepare ourselves for a serious illness or an unexpected job loss... but we can change how much we dwell on it and limit the amount of time spent on negative "what if" ways of thinking. You never know what the future holds, it really could be something spectacular!!! You cant predict what other changes may happen. Everything is never 100% good or bad... theres always a little of each but it all depends on how you view it. For me, I was devastated when I realized my health was not within my control and my idealistic retirement I planned for my entire life would never happen all from getting OC. I lost my 13 year career, pension, and a huge amount of "stuff" and faced (still am a work in progress 12+ years later) what I considered a gigantic uphill battle only to never succeed at another job or any other thing I previously would have excelled at anything I attempted. BUT!!! As unbelievable as it sounds, my after OC life is dramatically different and even with all my limitations, its actually a better life, more satisfying to help others instead of just writing a charity a check. When I meet people who didnt know I was disfigured (its right there on my face for the world to see), they're usually very surprised by my happy disposition and how positive I am. When OC took something away that can never be replaced... my looks, which I never knew carried so much weight until I didnt have it any longer. The world is so fickle and everything/everyone is constantly being judged by how they look. But, when looking at me they see someone who is disfigured but the personality does NOT match the looks. During my 2 month hospitalization, when I didnt recognize myself in the mirror I allowed myself one day to process the shock of losing my looks seemingly overnight. I went into the hospital to removed 1/2 of my lower jaw but with my complications it failed and when I woke up 3 weeks later I was someone else. Please try to think of your new voice being different, where only if you decide to speak will anyone ever hear your vocal challenges. Im not as lucky as you are, for me they can clearly see I have some serious health issues and I dont even need to say a single word, its right there on my face so its unavoidable. See... it all depends on your viewpoint smile Im pretty sure you hadnt considered only when you speak would anyone know about your health issues. Its a glass half full way of thinking about your situation. Ive had many close friends over the years who were unable to speak. Try an app called SpeakIt to be your voice by simply typing what you want to say. My friend used it all the time and it was!!! We are always our own worst critics!! Next time you see your doc, ask about the availability of a speech therapist. They've worked wonders on many who felt just like you with being very self conscious of their speech. In time, everything will improve. Unfortunately recovery never will happen as quickly as how we think it should go.

Hang in there and best wishes with everything!!!



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: r0se] #199618
12-20-2019 11:34 AM
12-20-2019 11:34 AM
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Dizz_zzey Offline
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Hey Rose,

Trust us all when we say the mucus will eventually go. I'm just 7 weeks post rads and the mucus has reduced drastically. I get moments of dry mouth, so carry around a bottle of water everywhere I go.

Even without a tongue, you will learn to eat. I am currently learning. I'm like a child when my husband has dinner as I want to try things. It's brilliant. You will get there. As Christine said, when your body wants to sleep, get some sleep. It really helps. Week 3 post rads is the week when you feel different, a little bit better. There are times when you will take a step back in recovery, this is normal as your body adjusts. It won't last for long.

With your speech, you will find there are certain letters and words you will never be able to pronounce. For example I can't say DOG as I can't say pronounce 'D' or 'G', but I'm having fun finding replacement words. Dog is now 'woofer' or 'woof woof', people understand me then. Also speaking slower than you would normally speak helps with your prounciation. Practise your alphabet or saying words out loud, even to singing to your favourite songs will help.

You've got through surgery and radiotherapy, neither of which are small feats, they are huge! You are amazing to have done that. Having no tongue isn't the end, it's a new chapter of your life and you will come through this dark patch because you are a fighter.


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 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Dizz_zzey] #199646
12-30-2019 10:46 AM
12-30-2019 10:46 AM
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Posts: 31
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r0se Offline OP
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Hi all,

Thank you for your kind words of encouragement. Today is two weeks post rad. My mouth sores are almost all gone and the swelling in my face has really improved. I am feeling less tired, but I am still waking up one or two times in the night to give myself more guaifenesin and robotussin with codeine to suppress the cough and mucus. I'm still sleeping on the couch. I walk everyday, but I don't do much else because of the mucus. Yoga and mucus/running and mucus don't mix.

I keep trying to swallow, but nothing is going down. I was able to swallow the middle of a ravioli a few days ago, but yesterday I failed to get any cream of mushroom soup down. I'm going to try coffee or lukewarm hot chocolate later today. I can speak a bit, but it's very strained and gargled. It hurts to talk and swallow, honestly. I try to eat as much as I can through my PEG, but my stomach physically can't take more than 4 or 5 cans. I've been feeling queasy even with that amount.

I'm feeling pressure from my caregiver to get better (ie be more active and leave the house more), and I want to be better, but I know that I'm not going to immediately heal. I feel like it is my fault, but I can't control how my body reacts or heals. I'm also afraid to be in public, which I think frustrates my caregiver. However, I can't talk and I'm so full of mucus - so I feel really uncomfortable in public. It's not that I don't want to heal, but like I said, I can't control the pace of my healing or where I feel most comfortable at different stages of the process.

Re: Permanent PEG? [Re: r0se] #199678
01-13-2020 04:18 PM
01-13-2020 04:18 PM
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Boston, MA
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r0se Offline OP
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Hi all,

Quick question - has anyone ever had a nickel sized red, sore bump occur along an incision line following head and neck surgery? My operation was in late September 2019. The bump appeared last week. I am taking antibiotics and have an appointment to see my doctor January 30th. Hoping to hear from people who had a similar experience. I'm freaking out because I don't want the incision scar to open and I don't know what it is.

In other news, I am officially beginning week 4 post radiation. I've gained a pound and am beginning to swallow again. I can swallow liquids and soft solids. I'm working on swallowing squash puree, cranberry juice, and soft bread dipped in melted butter. My energy is coming back and the mucus is much more manageable. I am taking it slow and haven't tried to bike, run, or practice yoga yet. I am hoping to try yoga/biking this week. Still using the peg for sustenance, meds, and water - hoping next week to increase the amount of liquid I am ingesting by mouth. Sending positive, healing vibes to you all. I check this website every day and draw so much comfort from this community.

Re: Permanent PEG? [Re: r0se] #199751
02-01-2020 08:09 PM
02-01-2020 08:09 PM
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r0se Offline OP
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Hi all,

R0se here with an update. I am 7 weeks out from radiation. I honestly surprise myself every day. I am gaining more and more energy. I am now able to run, practice yoga, and bike. I try to run or walk up to (at least) 15000 steps a day. *Pre cancer, I was a marathon runner who was practicing at least 3 hours some form of exercise a day.* I am no longer napping, but I do feel sleepier during the day. I also forget things. I try to be hyper organized to make up for it.

Food wise...I can easily (ish) swallow water, coffee, vitamin water, pureed things of varying consistency. I use my teeth to mash and then my finger to bring back very soft foods (peanut butter watered down, moist bread dipped in hot butter, croissants/donuts dipped in coffee, oatmeal with milk, frozen berries then microwaved until hot and mushy etc. I struggle with very "airy" things - chocolate mousse, the damned foam milk on fancy coffee drinks. Oh, and I cannot do apple sauce.

Alcohol and anything spicy...not happening. It feels like my whole mouth is on fire. I am not sure if this is because my mouth is definitely still healing or because my new mouth can't handle those flavors.

Speech...Im told that I am pretty clear. I can address strangers simply, answer the phone and have simple conversations, talk with my family. I try to be very loud, use simple vocabulary, use non verbal cues, and avoid sounds I can't pronounce. I cannot do g, d, or ch. Im sure there are more that I can't do. I have a prosthesis that does seem to help. It makes my voice louder.

Lymphedema...I still have it on my neck and cheeks. I look like a chipmunk. I can't get rid of it. It's super frustrating - 1. because Im vain 2. because my face is something I shared with my half sister and my dad. My sister and I otherwise look like exact opposites. I also saw my mother and grandmother in my old face. Now, all I see is a chipmunk.

PEG...still have it, but trying to use it less and less. I have managed to gain 10lbs (what I had lost since the start of cancer) within 6 weeks of radiation ending. Now, I am trying to swallow enough food to maintain.

My new goals are to somehow figure out how to drink alcohol (Im in my twenties and single, alcohol is very much needed), get the lymphedema under control, keep swallowing new things, swallow more things in a way that is not gross so I can eat with friends and family, get the PEG out, and slowly build my physical stamina. I'll be running marathons and working abroad again - just wait.

Re: Permanent PEG? [Re: r0se] #199752
02-02-2020 07:06 AM
02-02-2020 07:06 AM
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ChristineB Offline
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Hi Rose!

I cant believe how well you are doing at only 7 weeks post rads!!! Thats absolutely wonderful!!! Most patients have not gotten as far as you in such a short time. I certainly was not anywhere near your level of recovery that quickly.

Alcohol normally burns like crazy after rads. Ive only taken a couple sips in 12 years and it still isnt appealing to me but I never was much of a drinker anyway. You may want to have a chat with your doc about alcohol. This subject has been discussed many times so Im sure if you did a quick search you could pull up several long threads seeing what many other OC patients have done post rads. Alcohol is known to be one of the things OC patients should avoid to reduce their chances of a recurrence. Ive asked many top US doctors over the years and most tell me its not worth risking a recurrence for a drink. Unfortunately, those who choose to drink and/or smoke after going thru OC usually arent around very long if they return to their old habits. Being young has been a gigantic advantage for you... just look at how quickly you have advanced in your recovery!!! The younger the patient, the faster they bounce back.

Since you gained some weight, thats a really good sign!!! My docs told me if I could maintain myself for 2 months without losing weight and not using the tube at all then I could get rid of it but unfortunately for me thats not possible. Its so much better to keep it and not use it than to need it and its not there. I hate to be negative about anything but Im always honest with what I tell everyone... during recovery, set backs can happen and they can come out of nowhere. A patient is doing great and all of a sudden they have one bad day that turns into 2 bad weeks of going backwards with their recovery. Hopefully you will not have this happen to you but almost everyone in recovery (especially during the first few weeks of a 2 year recovery) has gone thru this and it is NOT fun at all. Its not easy to handle mentally seeing such great improvements then to go backwards and to again work so hard to get back the great progress they've made.

In time your swelling should go down to where you can see a noticeable difference. Its still very early in your recovery. Im sure in time you will improve. It can take a full year to have inflammation subside. At your next check up, ask your doc about this too. With how great you're doing I cant wait to hear your 6 months post rads update and the 1 year and 2 year ones too!!!

Best wishes with everything!!! Keep up the great work smile


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] #199960
03-20-2020 06:57 AM
03-20-2020 06:57 AM
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Posts: 31
Boston, MA
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r0se Offline OP
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Hi all,

Here is an update on my progress for those who like to know what may be ahead. I have Adenoid Cystic Carcinoma (a super rare cancer that has no known cause -ie NO LINK to HPV, alcohol, drugs). I finished my six weeks of radiation on December 16th. Before radiation, my entire tongue (total glossectomy) and several lymph nodes were removed. Before the surgery, my medical team attempted two rounds of induction chemotherapy. The chemo did nothing. Before cancer, I was (still am!) a marathon runner, yogi, vegetarian, world traveler in my twenties working in the humanitarian sector. Here is how I'm doing now:

Feeding tube: My feeding tube was removed in February 2020 following a month of stable weight gain without using the feeding tube.

Swallowing: I mostly eat pureed soups and smoothies. However, I eat a soft solid with every meal. Yesterday, I only ate soft solids for lunch and dinner (a quiche and vegetarian lasanga). I swallow using water and my finger to push things back followed by effortful swallows. I cough to bring food back up that is stuck in my throat. I cough literally all the time during my meals to prevent food from getting into my lungs or choking me. I have eaten out with others, but if I do I stick to pureed foods and very soft solids in small bites. I prefer to eat alone.

Taste: My taste is not great. I can taste butter, peanut butter, coffee, coffee flavors, milk, squash soup - anything that is intensely savory. PLEASE REPLY IF YOU KNOW OF OTHER SAVORY FOODS THAT I CAN TASTE. Tomatoes sting. Orange juice stings. Alcohol is fire. I can stomach a cocktail if it is 3/4 juice. I cannot taste bad chocolate (Hersheys, etc) but I can taste brownies or very rich chocolate. I taste it the most when it is on the roof of my mouth or at the back of my throat.

Speech: My voice is awful, but largely intelligible. I was able to hold my own during a Skype interview with the camera turned off. I barely have to repeat myself anymore. I speak very slowly on purpose and choose words that I know I can say or fit the context. I never use complicated vocabulary. I miss speaking eloquently.

Swelling: My face is most swollen in the morning. I have a Flexitouch machine which I use for 45 minutes every morning and evening. I also have a compression mask that I wear during the day if Im alone and don't have to talk. I try to wear it when I sleep, too. This routine appears to be working. I'm told that my face looks like a normal face.

Physical Activity: I am running two hours a day again. I also try to bike or walk or practice for an additional hour. I'm a slow runner, but improving steadily.

Job: I lost my job because of the cancer. I'm looking for a job now. It's a really hard time to be looking and I'm very worried. I loved my work. This year has been very hard without working - work is what makes us matter, no? ANY ADVICE/THOUGHTS ARE WELCOME.

Dating: I have scars from the port, the surgery (one from
ear to ear below my chin, one down my entire thigh), and one from the trach. I'm afraid to date.

Re: Permanent PEG? [Re: r0se] #199965
03-21-2020 05:39 AM
03-21-2020 05:39 AM
Joined: Aug 2019
Posts: 52
B
Barry Toronto Offline
Supporting Member (50+ posts)
Barry Toronto  Offline
Supporting Member (50+ posts)
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Joined: Aug 2019
Posts: 52
Rose. Sounds like you are recovering really well considering what you have been through, congratulations.

A few comments. On savoury foods, I have found “smoky” flavours easy to distinguish. Had a split pea soup that had some kind of smoked ham in it yesterday. Tasty. Also had some smoked salmon the other day that was tasty. Maybe that very savoury taste would get through?

Dating. Are you kidding? Scars are skin deep. With what you have been through, you are, I don’t know, a warrior? Warrior princess? How attractive is that? You are young and healing quickly, I suspect many dating prospects will enter your life soon, especially as you re enter “target rich” environments - like the workforce?

Jobs. The economy right now sucks - no doubt about that. This will change and the world will need more people who can cope with adversity - like warrior princesses! When things settle down, jobs will materialize - timing is unknown but be as ready as you can be. Meanwhile, hang in there and keep recovering.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Re: Permanent PEG? [Re: Barry Toronto] #199978
03-25-2020 06:27 AM
03-25-2020 06:27 AM
Joined: Oct 2019
Posts: 31
Boston, MA
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r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
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Joined: Oct 2019
Posts: 31
Boston, MA
Thank you. I needed that:)

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