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#193693 01-04-2017 08:47 PM
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I finished 8 weeks of radiation and Cesplatin in mid October. I have BOT with tumors in the throat and left lymph node, stage 4. Nothing in the larynx itself. Towards the end of treatment my voice got a little raspy but within the last month or so it gets downright funky. I never know what's going to come out of my mouth. I can go from this sexy BarryWhite voice to a squeaky Tiny Tim cracking with a little bit of froggy from the little rascals thrown in.

I am thinking it's probably the radiation that may have changed my throat and vocal cords but I am also thinking it could be you know what.

Anybody else experience this?

Thanks
Ed Kane


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
EMTK3 #193695 01-05-2017 02:31 AM
Joined: Jul 2016
Posts: 85
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Posts: 85
I also never know what sound is going to come out of my mouth from minute to minute. Often people comment "are you sick?" Sometimes it makes me want to say "well, duh" ! With what this throat has been through it is a wonder I have a voice at all !

Sure never knew how important Silvia is in the mouth. The constant and unrelenting burn is the worst.

I have just tried a new product called Oral7, a big thank you again to Uptown, (another poster on this site) for kindly sending me sample packets of the mouthwash, mouth gel and toothpaste. It seems to be all that biotene ever wanted to be and the mouthwash gives me about 2 hours of glorious relief.

I have contacted the company to request an order form to order more of each. If you are interested in trying it let me know and I will get the contact info to you.

Take care !


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 ***

EMTK3 #193697 01-05-2017 08:04 AM
Joined: Jul 2012
Posts: 3,267
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I hear you about the voice changes as I probably sound like Mickey Mouse now compared to my former self. It could be anything just using myself as an example, like the cold winter air/wind on your throat, straining voice to be heard, talking too much, dry mouth, mucus, spicy food, sips of alcohol, and effects of radiation all effected my speech/throat.

As it goes, any unusual sign or symptom lasting more than 2-3 weeks, I often waited less, should be looked into by your doctors, more likely your ENT, who may do a flex scope of your throat or perform other evaluations. During mine a few years ago, my ENT found I have a paralyzed left vocal cord, which effects my voice. As such, I was sent twice to "voice specialists", actually otolaryngologists who specialize in voice and others disorders, who can do vocal cord injections with collagen, other material, to strengthen the voice, but I never had them done.

Instead, I was sent to Speech and Language Pathologists, SLP, for swallow boot camp where I was evaluated, and had a modified barium swallow study done, about my 3rd or 4th, where it was showed again my epiglottis doesn't fully close, and silently aspirate, so I had exercises to do, and shown what swallow maneuvers helped that, and to strengthen my voice,

I hope this helps.



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






Jo in NC #193699 01-05-2017 09:52 PM
Joined: Dec 2016
Posts: 46
EMTK3 Offline OP
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Thanks Jo. I would like the info on the Oral 7. I have been using the Biotene but over the last 3 to 4 weeks my mouth has gotten super sensitive and almost anything "burns." Biotene just lights me up now. Think I was rinsing with gasoline. I would kill for 2 hours of relief. I am back to using the pink magic Lanocaine liquid before meals so I can eat but that tastes so gruesome I want to toss my cookies.


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
PaulB #193700 01-05-2017 09:57 PM
Joined: Dec 2016
Posts: 46
EMTK3 Offline OP
Contributing Member (25+ posts)
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Thanks Paul. I have had problems with aspirating prior to treatment as the tumor on the back of the tounge was interfering with closing when swallowing. That tumor is gone now so I assume I no longer aspiraten


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
EMTK3 #193701 01-06-2017 05:23 AM
Joined: Jul 2016
Posts: 85
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Posts: 85
Hi Edward, I would be happy to send you samples. I can almost promise one of 3 different forms they make will help you. I am ecstatic over the mouthwash. The gel is pretty good although the soft waxy or warm coconut oil consistency takes some getting used to. I have not tried the toothpaste yet, only because I am using Clinpro 5000 prescribed by my dentist.

I was surprised to see the gel and toothpaste for sale on Amazon. The mouthwash is out of stock right now. Of course the one I wanted the most. I went straight to the Oral7 site and they were amazing at getting right back to me.

I must admit I laughed upon reading your post. My words exactly ! Biotene set the inferno to new heights and the pink vile concoction provided new lows.

Could not find my sample mouthwash packets last night (now where on earth did I stash those?) so, I grabbed the gel, used it and finally went to sleep about 6 this morning.

Again, I can surly send you some little packets of each to try. Send me your address in a private message here on the site and I will get samples right out to you.

Wishing you well.
Jo


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 ***

EMTK3 #193704 01-07-2017 04:39 AM
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
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Anyone who orders anything from Amazon.... PLEASE!!! use our link on the upper right of any page. By clicking on that box first, it will take u directly to the Amazon website. This helps OCF by giving us a much needed 5% kickback from any purchase made thru that link. It doesnt cost anything extra except an extra second of your time to click our Amazon box prior to shopping. No purchase is too small, they all add up to help keep OCF operating.

Thank you very much!!!!


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
EMTK3 #193705 01-07-2017 04:43 PM
Joined: Dec 2016
Posts: 46
EMTK3 Offline OP
Contributing Member (25+ posts)
OP Offline
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Joined: Dec 2016
Posts: 46
Didn't know. I would be happy to do that.


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
EMTK3 #193726 01-13-2017 11:08 AM
Joined: Jun 2016
Posts: 8
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Joined: Jun 2016
Posts: 8
Nice to hear about this new Oral 7, I'll have to check it out for my boyfriend!! Thanks for the info!


Susie
"DIFFICULT ROADS OFTEN LEAD TO BEAUTIFUL DESTINATIONS"
Boyfriend and Best Friend diagnosed with stage 4, well differentiated SCC. Tumor in the jawbone area
53 years old, great health, never smoked or chewed tobacco
July 2016 - Mandibular reconstruction / Fibula flap
tumor removed and 4+ Lymph nodes
August 2016 - 6 weeks of daily radiation / 2 sessions of Chemo
EMTK3 #193734 01-14-2017 12:23 AM
Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
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Joined: Jul 2016
Posts: 85
Sure worth a try. I could send you samples but I am on vacation right now far from home. If you would like for me to send any to you when I get home let me know your address by private message here on the site.

If Amazon is still out of the Oral7 mouthwash you can contact the company to order it or even to get free samples. Wishing the best for you and your boyfriend !


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 ***

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