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Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197058
08-29-2018 01:41 PM
08-29-2018 01:41 PM
Joined: Jun 2007
Posts: 10,227
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: 10,227
PA
Unfortunately that sort of info is kept confidential. In depth knowledge of medical advances would be something our members probably would never hear about. The only person I can think of who has access to those things would be OCF's founder Brian Hill. He sits on many boards along with some the countrys top researchers/doctors/Phd's and hears about new things that are up and coming. Those things must clear the FDA and have trials done so its years before things come out. Brian may hear the confidential things way before the general public does but with confidentiality clauses he probably isnt able to discuss the things he hears of.


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: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197064
08-31-2018 01:28 PM
08-31-2018 01:28 PM
Joined: Jul 2012
Posts: 3,135
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: 3,135
NYC
First, congratulations on 12 years! I’m not sure if we spoke in the past, but it’s good hearing from you! I’m sorry about your swallow issues. I’ve had plenty, and after my teeth were removed, more so, but I do eat fully by mouth after using a tube on and off for fives years, mostly when I was in treatment. Have you tried puréed foods or other easily swallowed foods? Chicken is a tough one! Most times I like to cook my own foods, but with special instructions, not to over cook certain foods, I can eat even pizza! Basically, it’s trial and error, and plenty of times i bit more than I can handle, and almost passed out before dislodging the food! That’s scary, and not fun, as you know!

On another note, have you or anyone in your family taken CPR, which usually include choking victims? I know, and hope to never use doing a belly flop from a kneeling position, head turned up and away, on the floor or dropping myself over the back of a chair to dislodge a stuck item in your throat. Most times, I can talk and breathe and the stuck food eventually dislodges. Anyway, it’s best to take a class. The belly flop I learned on line, so that may not be included in the class.

That brings me to another point. Later in September i’m having my throat dilated. I usually have it done twice a year, sometimes with a scope since I have Barrett’s esphogus which needs to be checked yearly.

On another note, I have one carotid artery, as a left section that was cancerous was removed a few years back, and just have the right side, which is clear. I get, up my request, the Doppler exam, which name escapes my mind right now

I hope this helps!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: 12 Years Out of Treatment - Trouble Swallowing [Re: PaulB] #197066
08-31-2018 05:43 PM
08-31-2018 05:43 PM
Joined: Jun 2013
Posts: 287
alabama
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KristenS Online
Gold Member (200+ posts)
KristenS  Online
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 287
alabama
Paul, do you have dentures, or have you managed without? Still working on this no-tooth thing. (Not to derail this thread, just wondering.)

And the notes on CPR training for friends and family, and self-care ... spot on. I teach even my littlest Scouts about some of those techniques, so they can know how to help folks larger than they are ... they may not remember it all, but at least they won't panic so quickly and have time to get help. Thanks for reminding us that it's not just for other folks! My refresher course (requirement for leadership) is due and that'll be a good incentive.


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: 12 Years Out of Treatment - Trouble Swallowing [Re: KristenS] #197069
08-31-2018 08:46 PM
08-31-2018 08:46 PM
Joined: Jul 2012
Posts: 3,135
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,135
NYC
KristenS,

No, I don’t have dentures yet. When I was about to look into them or implants last year, as all my teeth were removed in 2015 due to all my radiation, over 200Gy, and recovering from a madiblectomy, I had a major heart attack right after that, and on blood thinners since. A few months later, I went to see my ENT for referal to the periodontist, but he told me relax for a while. It’s been a year now, and finally got my cardiologist clearance, so I’m going to look into something as he gave me the temporary ok for several procedures as long as I cut out the blood thinners 5 days prior.

It’s good to take a refresher course in CPR or be recertified, if one can.


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: 12 Years Out of Treatment - Trouble Swallowing [Re: WZ] #197162
09-15-2018 10:45 AM
09-15-2018 10:45 AM
Joined: Sep 2018
Posts: 2
hermosa beach, CA
H
homestrong Offline
Member
homestrong  Offline
Member
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Joined: Sep 2018
Posts: 2
hermosa beach, CA
Hi Everybody. I'm 20 years out and its both reassuring and somewhat glum that I've just now hooking in a community that both understands my suffering, as well as crossing milestones in the progression of Radiation Exposure Disease. I myself also was forced in a liquid only diet about 3 years ago. It changed my life, made it smaller. Michaelii, you did share an interesting paper on the Swallowing Degradation, but it only said "Novel Approaches are needed" .. Which is to say, they should relax clinical trail restrictions, for our sakes. We need help!


1999 rt Tonsil/Squamous Cancer, T1/N3/M0. Radical Neck Dissection, 5 1/2 weeks of Radiation. No Chemo.
2016 rt Carotid Occluded
2016 Liquid-Only Diet
2018 All Molars must be Extracted
?Fall 2018 Stent for lt Carotid
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197163
09-15-2018 11:15 AM
09-15-2018 11:15 AM
Joined: Sep 2018
Posts: 2
hermosa beach, CA
H
homestrong Offline
Member
homestrong  Offline
Member
H

Joined: Sep 2018
Posts: 2
hermosa beach, CA
ChristineB et al First of all, I am really connecting with everything said here. I feel like I'm at home. And yes, I'm inspired, because, for starters, knowledge is power! Thanks everyone for sharing. ChristineB, I'm 20 years out from Rad, and I was forced in to my liquid diet, just 3 years ago, which seems late from the average here. But can I share with you all, a story of maximizing the parts of your body and mind that we're not radiated? Positive energy may just prolong all these inevitable Rad side effects.


ChristineB interesting observation about those possibly having new clinical data that could addressing our deteriorating throat functions. I'm quite motivated to pursue any avenues for treatment.


1999 rt Tonsil/Squamous Cancer, T1/N3/M0. Radical Neck Dissection, 5 1/2 weeks of Radiation. No Chemo.
2016 rt Carotid Occluded
2016 Liquid-Only Diet
2018 All Molars must be Extracted
?Fall 2018 Stent for lt Carotid
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197167
09-17-2018 11:11 AM
09-17-2018 11:11 AM
Joined: Jan 2003
Posts: 109
Kansas
W
WZ Offline
Senior Member (100+ posts)
WZ  Offline
Senior Member (100+ posts)
W

Joined: Jan 2003
Posts: 109
Kansas
Homestrong.

I started liquid food or noodle soup this year - also 16 years post treatment, I am wondering if you have any problem with your speech. To me, the radiation not only gradually weakened the throat muscle for swallowing but also the tongue muscle for speech, some words become hard to spell clearly.


Thanks


WZ | Stage 4, Tonsillar Cancer Aug, 2002
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197169
09-17-2018 05:35 PM
09-17-2018 05:35 PM
Joined: Apr 2016
Posts: 65
Massachusetts
M
msweet2995 Offline
Supporting Member (50+ posts)
msweet2995  Offline
Supporting Member (50+ posts)
M

Joined: Apr 2016
Posts: 65
Massachusetts
Hi I am 9 years post treatment and have been on a diced food diet since 2015 but not they are saying I can swallow but my Esophagus in no longer working, this is the craziest thing and with very dry mouth things are getting worse. But the GI doctor mentioned nothing about a feeding tube. So one day at a time. Wishing you all well.


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
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