Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
12 Years Out of Treatment - Trouble Swallowing #195140
09-22-2017 09:44 AM
09-22-2017 09:44 AM
Joined: Jun 2005
Posts: 341
USA
M
Michaelii Offline OP
Platinum Member (300+ posts)
Michaelii  Offline OP
Platinum Member (300+ posts)
M

Joined: Jun 2005
Posts: 341
USA
It's never been the same - since surgery, chemo & radiation 12 years ago, I've never really been able to swallow quite the same.

I've just "learned" to live with it as a lingering side-effect, and frankly am so grateful to be alive, hated to even bring it up to anyone.

As I approach the 12 year anniversary in a couple days, I have noticed over the last several months an increasing difficulty swallowing, especially when I eat.

I feel like I've been blessed with near normal (or better?) saliva function post treatment - many of my friends who had treatment aren't as fortunate.

Anyway, it's been getting progressively worse to the point that at least twice in the last 4 months I've nearly choked to death - being unable to swallow or breathe.

Both times, I've managed to save myself after what seems like minutes (likely several seconds) of being unable to breathe. Each time, my partner nearby was getting ready to help.

Any advice?





Last edited by Michaelii; 09-22-2017 09:45 AM.

Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 10+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #195141
09-22-2017 01:01 PM
09-22-2017 01:01 PM
Joined: Oct 2012
Posts: 1,116
Toronto, Canada
G
gmcraft Online

Assistant Admin
gmcraft  Online

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,116
Toronto, Canada
Hi, maybe request a swallowing test through your PCP or oncologist. It's important to know what the problem is and that you are not aspirating/choking. Have you had bouts of pneumonia recently? If so, do make a point of telling the doctor. Difficulty in swallowing often leads to pneumonia.


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: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #195153
09-26-2017 03:53 AM
09-26-2017 03:53 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
I am 15 years out of treatment. Just like you, I started to have swallowing problem about 3 years ago. Reported to my ENT doctor and had a couple of swallowing tests, got warning not to eat by mouth any more. Well,I have not done that yet, every time I met my ENT doctor he would ask me if I have pneumonia yet....Actually, my condition is worse than yours, I can no longer get solid food down my throat, it will start terrible coughing if I force....so, I put everything in blender and carefully let it flow down by gravity....and most of time I drink Fiber Source HN as lunch and make my own liquid dinner after work....so far it works but I have to be very very careful.


WZ | Stage 4, Tonsillar Cancer Aug, 2002
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #195155
09-27-2017 08:59 AM
09-27-2017 08:59 AM
Joined: Sep 2016
Posts: 111
B
bjmpittsburgh Offline
Senior Member (100+ posts)
bjmpittsburgh  Offline
Senior Member (100+ posts)
B

Joined: Sep 2016
Posts: 111
Don't wait for another choking event. Make an appointment with your ENT and have them follow up with a swallow test......Only after that will they and you understand what is happening during your swallowing process.

There are worse things than being on a pump for nutrition intake. (Three plus years for me personally.) Food is hard to give up. That's just a fact you may have to deal with in exchange for long term health.

Good Luck


1997 SCC Tumor on tongue - Partial Glossectomy
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Glossectomy
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-glossectomy
Free Flap reconstruction from thigh
PEG Tube inserted
6 weeks radiation
Trisimus
Pump Feed
Permanent Issues with speech and swallowing
2018 - Bleeding from throat / mouth
2019 - Bleeding from throat / mouth
2019 - 3rd diagnosis Cancer SCC Base of mouth / jawbone
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #195169
10-01-2017 04:41 AM
10-01-2017 04:41 AM
Joined: Jul 2016
Posts: 85
North Carolina
J
Jo in NC Offline
Supporting Member (50+ posts)
Jo in NC  Offline
Supporting Member (50+ posts)
J

Joined: Jul 2016
Posts: 85
North Carolina
Please get a swallow study done. I have also used a feeding tube for all my nutrition for over two years. Yes, I do miss the enjoyment of eating but not the fear of choking to death as I was doing. It is a very easy quick test that reveals much about the complex process that goes into swallowing. By not taking in enough liquids or nutrition you are harming your body and will begin to have serious health issues. It is not a pretty site. I speak as one who has "been there."


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197012
08-23-2018 09:03 PM
08-23-2018 09:03 PM
Joined: Jun 2005
Posts: 341
USA
M
Michaelii Offline OP
Platinum Member (300+ posts)
Michaelii  Offline OP
Platinum Member (300+ posts)
M

Joined: Jun 2005
Posts: 341
USA
UPDATE: I had the swallow study done, and the report stated that I indeed have swallowing problems, likely related to the radiation from 2005.

I attended some ENT prescribed swallowing physical therapy, which, although I didn't attend enough courses or act diligently enough in practicing and follow-through, didn't seem to really help much.

About a month ago I was at a back yard dinner party with family and friends and was talking, and enjoying a nice meal together when I tried to swallow and couldn't get a piece of chicken to go down and I couldn't breathe.

After a few seconds I panicked and started to get up and left the table to try to spit up the food and try to get some air.

I was able to get some very very minimal airflow around the stuck piece, it was shaped in a trapezoid and some slight air was able to go around the angled edges apparently.

But, my partner reported my lips we're turning blue and I was crying in distress.

He tried the "heimlich" type maneuver but it didn't "seem" to help. The host was calling 911 and I was feverishly trying to get the stuck piece out when with the very last ounce of air I had. I was abel to eject it out and across the back yard.

I was shaking and realized I was moments away from passing out and then asphyxiation.

Since then I've been much more careful, very very deliberate about my chewing, swallowing and food choices. I don't talk while eating and force myself to take very small (almost ridiculous) small bites of food, chew it like crazy and drink lots of water.

That event was the worst ever, I've had a few similar over the years and they seem to be getting more frequent - but this last one felt like I almost died.

There was no way an ambulance, EMTs or medical aid could have responded in time and the nearest hospital was several minutes away under the best circumstances.

So, I am now concerned about how much worse my condition will become. When will I need to get a tube again? (Had one during radiation, not fun, but it was ok, obviously LOVE food (I'm over 300 lbs now) (lost 120 during treatment).

Does any one ever get better? I'm otherwise healthy and very active (work 100 hours a week), sometimes very physical, but do need to eat better, and diet.

When this get's terrible can you still swallow smoothies, etc?

Is there anything I can do? Is a G-Tube the only option?

Radiation is the gift that keeps on giving.... Mayve didn't even need radiation it turns out.

I just don't know what to do. (Also, have carotid arteries that are not allowing blood to my brain, but that's another post).

All ideas are appreciated.






Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 10+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197038
08-27-2018 10:48 AM
08-27-2018 10:48 AM
Joined: Apr 2016
Posts: 67
Massachusetts
M
msweet2995 Offline
Supporting Member (50+ posts)
msweet2995  Offline
Supporting Member (50+ posts)
M

Joined: Apr 2016
Posts: 67
Massachusetts
Michael, I feel your pain, on a diced food diet and swallowing exercises since 2015, and very confused right now cause I passed the barium swallow study but failed an esophageal Motility Manometry Test which shows that my Throat, esophagus and sphincter to hold the food down is not working well and is very weak. So I am waiting for further advise from my local GI doctor and will be asking about a second opinion if I don't like what I hear. Keep the faith, our cancer is truly a hard road to bear.


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: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197040
08-27-2018 11:30 AM
08-27-2018 11:30 AM
Joined: Jun 2007
Posts: 10,364
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,364
PA
Unfortunately, Michael the swallowing and carotid issues are both well known problems for OC survivors after having rads. Im sorry to say these things normally continue to get worse as time goes on. Ive seen quite a few OC survivors who have been 10+ years out of treatments who have swallowing issues where they need to use a feeding tube and take nothing by mouth due to aspiration when swallowing which can cause aspiration pneumonia. Some long term survivors that continue having this happen end up spending time hospitalized for aspiration pneumonia. Make sure you follow up as directed with your doc. Its definitely not easy, many of us have this as well.


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] #197047
08-28-2018 05:05 AM
08-28-2018 05:05 AM
Joined: Oct 2008
Posts: 230
NY state
T
travelottie Offline
Gold Member (200+ posts)
travelottie  Offline
Gold Member (200+ posts)
T

Joined: Oct 2008
Posts: 230
NY state
I wish I had something positive to add...these long term side effects are very difficult. After regaining more salvia, taste, and stamina than expected, at 8 yrs post tx swallowing issues started. My husband passed swallow testing a year ago, but it is definetly becoming more problematic. His cough reflex remains adequate, preventing aspiration for now. Generalized fibrosis of the neck & jaw appears to a major problem.

i have been watching this deterioration knowing that permanent PEG will probably be necessary. I am somewhat prepared for this outcome, but it's been a long time to worry about what is to come.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197057
08-29-2018 01:09 PM
08-29-2018 01:09 PM
Joined: Jun 2005
Posts: 341
USA
M
Michaelii Offline OP
Platinum Member (300+ posts)
Michaelii  Offline OP
Platinum Member (300+ posts)
M

Joined: Jun 2005
Posts: 341
USA
So there is no treatment? (besides physical therapy with a 66%+ failure (PEG tube) rate?)

This is very disturbing and when coupled with the carotid damage makes me realize the "cure" to the cancer just gave me borrowed time.

I wish there was some hope for new treatment development, like stemcell etc.


Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 10+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
Page 1 of 2 1 2

Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,364
davidcpa 8,311
Cheryld 5,260
Brian Hill 4,744
Gary 3,552
Newest Members
JackieOCF, NoraHelen, Becky L, wizgee54, Hopefulandscared
12159 Registered Users
Forum Statistics
Forums23
Topics17,555
Posts194,038
Members12,160
Most Online306
Aug 21st, 2016
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.7.1