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Re: Permanent PEG? [Re: r0se] #199437
11-14-2019 10:05 AM
11-14-2019 10:05 AM
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Posts: 31
Boston, MA
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r0se Offline OP
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r0se  Offline OP
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Boston, MA
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
Joined: Aug 2018
Posts: 322
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ConnieT Offline
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ConnieT  Offline
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Joined: Aug 2018
Posts: 322
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 58 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
6/2020 proton therapy
9/21/2020 cancer free
Re: Permanent PEG? [Re: ConnieT] #199439
11-14-2019 11:56 AM
11-14-2019 11:56 AM
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Posts: 31
Boston, MA
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r0se Offline OP
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r0se  Offline OP
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Boston, MA
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
Joined: Nov 2019
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HannahReese Offline
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Joined: Nov 2019
Posts: 5
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
Joined: Jun 2019
Posts: 198
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Dizz_zzey Offline
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Dizz_zzey  Offline
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Posts: 198
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,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
Re: Permanent PEG? [Re: r0se] #199450
11-16-2019 07:37 AM
11-16-2019 07:37 AM
Joined: Aug 2018
Posts: 322
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ConnieT Offline
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ConnieT  Offline
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Joined: Aug 2018
Posts: 322
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 58 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
6/2020 proton therapy
9/21/2020 cancer free
Re: Permanent PEG? [Re: Dizz_zzey] #199453
11-16-2019 08:58 AM
11-16-2019 08:58 AM
Joined: Nov 2019
Posts: 5
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HannahReese Offline
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HannahReese  Offline
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Joined: Nov 2019
Posts: 5
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
Joined: Oct 2019
Posts: 31
Boston, MA
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r0se Offline OP
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r0se  Offline OP
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Joined: Oct 2019
Posts: 31
Boston, MA
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
Joined: Oct 2012
Posts: 1,221
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Joined: Oct 2012
Posts: 1,221
Toronto, Canada
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
Joined: Oct 2019
Posts: 31
Boston, MA
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r0se Offline OP
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r0se  Offline OP
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Joined: Oct 2019
Posts: 31
Boston, MA
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

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