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Face and throat complications #196685
07-02-2018 04:39 PM
07-02-2018 04:39 PM
Joined: Apr 2016
Posts: 67
Massachusetts
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msweet2995 Offline OP
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msweet2995  Offline OP
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Joined: Apr 2016
Posts: 67
Massachusetts
Hi its been a long time I have been cancer free 9 years but had radiation to my neck. Well I have been having a lot of flushing and feeling like my throat is closing and went to an Allergist from MGH Boston and was surprised to hear that she had other patients like this who was wasting away like me and unable to eat. After all the allergy testing and other diseases were ruled out in the ER and one week in the hospital I met with this new allergist and she informed me that this is long term results from radiation. One women she knew personally and could only eat 4 foods had no choice but to go back to the stomach feeding tube. How far do I let this go? Do I want to live on a stomach tube for the rest of my life however long that is? I am not sure. If anyone has any answers or had this happen to them, let me know. Thanks


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
Re: Face and throat complications [Re: msweet2995] #196686
07-02-2018 07:48 PM
07-02-2018 07:48 PM
Joined: Jun 2013
Posts: 345
alabama
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KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
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Joined: Jun 2013
Posts: 345
alabama
I have a friend going through something similar but she is fairly recently out from a non-cancer, non-throat surgery, no radiation at all. They think it might be her thyroid going wonky ... but there are a lot of confusing allergy symptoms appearing too. (The results keeping alternating between yes allergies and no allergies ... driving her nuts, as you can imagine.) Because what you are describing sounds so much like what she's going through, I'd really ask about thyroid related issues ... I know the rads did a number on my thyroid right away.

I have very little real experience with this, of course, and I do hope others chime in. The only person I've met in real life who stayed on a feeding tube was an in-law, and to my understanding, whatever her condition was, she simply never got off the feeding tube in the first place and gave up hope. Very different scenario. (She's no longer with us, so I can't ask her the details ... she was very old.) She never said anything about throats or swelling ... I wonder if I could get someone else in the family to clue me in on more details.

I've been waiting on my dentures for about six months now (due to some funky issues with my surgeon) and nobody seems to be batting an eye at how much weight I've lost or the fact that my diet is crap. I suppose if I had more severe symptoms like you, they'd be paying attention ... and you're totally right to be concerned about that. Whether you need a tube or not, the issue needs fixing because that is just plain miserable. You need to be able to breathe too! That's the part that bugs my friend the most.

Do allergy meds help? Have you tried an inhaler (if you have one)? This has been a rough season for breathing for me, and I've used my rescue inhaler more times this season than I have since I was issued the thing. Oddly, though I'm not sure at all what the issue is, except my palate dropping while waiting for the dentures, it does seem to help ... which argues for swelling in the airways, at least. If you have an inhaler and it seems to help, consider inflammation as a possible part of the problem.

No, I am NOT a medical specialist, just a confused patient like everyone else, but these are the things I've been seeing and experiencing, so maybe some of it will help.


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: Face and throat complications [Re: msweet2995] #196687
07-03-2018 05:42 AM
07-03-2018 05:42 AM
Joined: Oct 2012
Posts: 1,134
Toronto, Canada
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gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,134
Toronto, Canada
I would suggest you get a barium swallowing test. Your doctor can refer you to the hospital for this. With a swallowing test, the doctors or speech language pathologist will be able to determine how well you are swallowing or what are the problems with your swallowing. They study the mechanics of swallowing through imagin, so it takes the guess work out of it. I don’t know if there’s a waiting list in your area. Where I live, in Ontario, Canada, there is a ten week wait. So get on it right away in case you have to wait, and do ask to be put on the cancellation list if your time is flexible.


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: Face and throat complications [Re: msweet2995] #196688
07-03-2018 08:04 AM
07-03-2018 08:04 AM
Joined: Jan 2003
Posts: 109
Kansas
W
WZ Offline
Senior Member (100+ posts)
WZ  Offline
Senior Member (100+ posts)
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Joined: Jan 2003
Posts: 109
Kansas
You can search under thread " Eating, Speech, Swallowing, and Alternative Feeding ".


WZ | Stage 4, Tonsillar Cancer Aug, 2002
Re: Face and throat complications [Re: msweet2995] #196690
07-03-2018 12:52 PM
07-03-2018 12:52 PM
Joined: Apr 2016
Posts: 67
Massachusetts
M
msweet2995 Offline OP
Supporting Member (50+ posts)
msweet2995  Offline OP
Supporting Member (50+ posts)
M

Joined: Apr 2016
Posts: 67
Massachusetts
Thank you so much yes I do believe that I have too much thyroid meds in me, I complained last year about chest pain and agitation, but the symptoms are much worse this time, I am skeletal 95 pounds and flushing all on my face. Thank you I will keep stressing the importance to these doctors.


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
Re: Face and throat complications [Re: msweet2995] #196692
07-03-2018 03:31 PM
07-03-2018 03:31 PM
Joined: Jul 2012
Posts: 3,240
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,240
NYC
msweet2995,

In addition to the above, my experience with a SLP, was that with a referral by my ENT, who worked in the same office in the hospital, actually several I’ve been to. Every hospital may be different, but that was my experience, and a good that they were there, and saw me just in passing many times, and checked my status.

Good luck!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs







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