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#183120 07-05-2014 05:18 AM
Joined: Mar 2014
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OzMojo Offline OP
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Hi everyone

7 weeks post treatment I am having difficulty swallowing. I can eat most things now, but it has to be soft and wet. Like pastas with lots of sauce. White sauce on cauliflower, even corned beef if its cooked enough. But something like a toasted cheese sandwich doesn't go. I can chew all I like but the saliva isn't there and I have to wash it down with water.

I'm not particularly concerned about the saliva, I expect that is normal and will eventually return. I'm more concerned about the swallowing. Quite often food feels like its stuck in the front of the throat just past the tongue, if that makes sense. It stays there until I wash it down. Is that normal? Will normal swallowing resume? Because right now its the swallowing, not the pain or anything else, that is holding me back and it feels like its been getting worse. Is it just a matter of exercise? Keep eating and practice swallows?


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Jun 2007
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Your swallowing issues are all pretty much what all OC patients go thru. Thats why its so important to keep swallowing every single day, even if its only a few sips of water.

In time it will get easier. You will have to build yourself up to eating the more difficult foods. Take your time, at only 7 weeks post rads it sounds like you are doing very well. A speech pathologist may be able to help. You may want to get a barium swallowing test (from the speech pathologist) to ensure you are swallowing correctly and not aspirating.

Best wishes!


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
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That's part of the cycle, but at 7 weeks you're doing pretty good. As far as normal, not for most people, but in our select group, yes. I still have the swallowing issues, need for water, and food gets caught in the throat pockets, and have to wash down or hack out. I had a swallow study done, modified barium, and showed my epiglottis wasn't closing properly, aspirating, from the radiation damage, but if I turned my neck to the left (radiated side) this didn't happen, epiglitis closed, and swallowed normally. I often forget to do this especially when talking to somone straight in front of you. If not already done, I suggest seeing a Speech and Language Therapist, SLP.

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






Joined: Mar 2014
Posts: 286
OzMojo Offline OP
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Thanks. I did do a barium swallow at my 6 week checkup. It wasn't part of the checkup, it was a part of a swallowing study I've been part of. I swallowed barium with a variety of textured foods, and when it came to a dry biscuit it showed as sticking there, until I washed it down with water. The researcher didn't give me any specific advice, but she noted the issue.

I'm told I'm doing better than average, but I have little energy and sleep 12 hours a day. It doesn't seem to matter what time I go to bed, I've tried changing the time I take meds, it doesn't seem to make a difference. Its been like this for a few weeks now. I'm told its normal and energy will return, but its really unsettling when it doesn't feel like there is any sign of improvement. Patience is the key.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Sep 2006
Posts: 8,311
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It can take every bit of 2 years for your saliva to repair itself as much as it will. I seriously doubt you will regain 100% so don't be disappointed if you don't. As Christine and Paul have mentioned 7 weeks is waaaayyyy to soon to be concerned about lack of saliva swallowing issues. Be patient and avoid dry foods. Stick to high fat content juicy foods.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Jul 2012
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I'll have to check out the exercises my SLP, actually a doctor, gave me. My study worked out so good, the doctor wanted to use my swallow study, as an example in her programs, and signed away. Someone should go over the test, offer suggestion. I had one two years ago and had similar experience, heard nothing!

I guess I have more patience than most, and still waiting 5 years for my energy to return. A lot of things factor in. I would say, in general, with all the treatments I had, three months is when I started to feel better, not completely though.

Radiation keeps working several weeks after completion, even heard 6 weeks, and chemo can stay in your body for just as long.

Sleeping, rest has an effect, adequate nutrition, hydration, pain meds make you tired, with inactivity you lose strength, muscle. Maybe see about physical therapy or join a gym if your doctors approve. I went to the gym once in April, but my oncologist wants me to do physical therapy first after I fell on my steps lol. if I'm on the floor, I still can't get up on my own, due to muscle loss. Precancer I had strong legs, and could easily do 22 45lb plates on leg press. .

Good luck. Things get better.


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






Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
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The muscles that flush the pockets out can be gradually strengthened by laying on your back and lifting your head up till you see your feet. They say to hold it for 30 seconds to a minute but I haven't been able to for 3 years now. I have to do them everyday and still by the end of the day,they are weak again.

I don't know if this is the case for many, but I find one day everything works quite well and other days it's impossible to start the swallow. Then on other days, the throat pockets won't clear out. Pretty bizarre but I have strategies for almost any scenario.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023

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