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Joined: Apr 2017
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Stef H Offline OP
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Hi all,

Background:
I had trans oral robotic surgery in May 2017 to find a primary and 30 radiation treatments for 60 Gy that ended on 7/24/2017.
The tumor (2mm) was in the vallecula very close to the epiglottis. I am totally off all pain medication (was on 2700mg gabapentin per day.) August was a tough month but I returned to work full time in September and am traveling a good deal for work and doing okay (Atlanta, Guadalajara, Hong Kong, Zhuhai, and next week Boston.)

Issue: There sensation of something in the back of my throat. My oncologist said that would go away but didn't give me any specifics. I will write her nurse but was wondering if anyone else had similar symptoms. Could this be from sleeping/snoring and the mouth drying out? I'm not using products to keep my mouth hydrated but I drink lots of water when awake. My mouth is horribly dry and my throat is sore when I wake up.

Good news:
I had my first post treatment MRI and it was clear. 4 years and 9 months to go!!!

Thank you for your help,
StefH



Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Hi Stef! Nice to see your update smile Sounds to me like you are doing excellent with your recovery.

You're in the "dry mouth" phase of your recovery. That can last a long time! Rad patients have reported improvements in their saliva around 2 years post rads. The dry mouth could be related to your feeling of "somethings stuck" in the back of your throat. Pay attention to this and all your side effects. If your "something stuck" would change and feel worse go back to get your doctor to check you out.

Keep up the great job you have done with your intake. Air travel can really dry out your sinuses so drink extra water when traveling. Continue to watch your intake and push to hit 2500 minimums thru at least the first year post-rads.

Best wishes with your continued recovery and all your travels smile


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
Joined: Apr 2017
Posts: 81
Likes: 2
Stef H Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 81
Likes: 2
A few things to share:
- had a swallow test via nasal endoscopy (not barium/X-ray) with the speech and swallowing therapist. We could visualize where things might get caught. My cancer was in the vallecula and the radiation fields were highest there. This is near the epiglottis and I have some residual swelling and the muscles there and in the neck has some atrophy ansbbeed to be exercised.

- she reminded me to keep doing the swallowing, jaw motion, and neck motion exercises I did during treatment and recommends doing them for 3 to 5 years post treatment.

- I saw my ENT and he respectfully disagreed with the follow interval from my oncology team (they see me every three months.) He would like to do a nasal endoscopy every month for the first year and I will be seeing him on the months that I don’t see the oncology team. A difference in philosophy among my doctors but I will be as conservative as possible.



Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Joined: Jan 2018
Posts: 15
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Joined: Jan 2018
Posts: 15
Hi Stef....So glad things are going good for you. I had those feelings in my throat after radiation for tonsil cancer. I used Biotene products, toothpaste, rinse, and oral spray, along with drinking loads of water. The Biotene really helped me. You can find it at most drug stores and Walmart. I've been cancer free for 15 years and still have those sensations at times. Always, always get them checked. You will get so comfortable with scoping that it will almost be funny. smile but it is definitely the way to go. Getting it once a month sounds like a great plan.


15 year survivor of tonsil cancer. In 2002 I was diagnosed with Stage III squamous cell carcinoma. I had a left neck dissection, teeth removed, and 38 radiation treatments. In 2015 I received a feeding tube and in 2016 a trach, both due to radiation side effects. But I'm happy to say that life has been good to me!!
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Bryan, Im very sorry to contradict your Biotene advice. Biotene products have been drastically changed in the last few years. They have removed the parts of the formulas that were there to help with dry mouth, etc. Its pretty rare to find any of the original Biotene products that contained the original formulas on any store shelves. Heres the thread of our Biotene changes with a few other suggestions of alternative products that work for OC patients....

Biotene products changed in 2013 thread



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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