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#193693 - 01/05/17 03:47 AM Voice change  
Joined: Dec 2016
Posts: 46
EMTK3 Offline
Contributing Member (25+ posts)
EMTK3  Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 46
New Jersey
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.
#193695 - 01/05/17 09:31 AM Re: Voice change [Re: EMTK3]  
Joined: Jul 2016
Posts: 82
Jo in NC Offline
Supporting Member (50+ posts)
Jo in NC  Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 82
North Carolina
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 of neck.
March 2015 Scan and biopsy confirmation
March 2015 Port and G tube placement and 10 teeth removed.
July 2015 completed 5 chemo and 35 radiations
Sept 2015 Cat Scan showed all clear !
July 2016 G tube and port still in place
I have had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries in the past 3 months with over 100 stones still there !

#193697 - 01/05/17 03:04 PM Re: Voice change [Re: EMTK3]  
Joined: Jul 2012
Posts: 2,976
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 2,976
NYC
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 TPF IC 6 Months Hosp Tx Stopped
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 Graft 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
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Segmental Mandibulectomy Fibular Free Flap
04/17 Regraft hypergranulation Donor Site
06/17 Myocardial Infarction






#193699 - 01/06/17 04:52 AM Re: Voice change [Re: Jo in NC]  
Joined: Dec 2016
Posts: 46
EMTK3 Offline
Contributing Member (25+ posts)
EMTK3  Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 46
New Jersey
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.
#193700 - 01/06/17 04:57 AM Re: Voice change [Re: PaulB]  
Joined: Dec 2016
Posts: 46
EMTK3 Offline
Contributing Member (25+ posts)
EMTK3  Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 46
New Jersey
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.
#193701 - 01/06/17 12:23 PM Re: Voice change [Re: EMTK3]  
Joined: Jul 2016
Posts: 82
Jo in NC Offline
Supporting Member (50+ posts)
Jo in NC  Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 82
North Carolina
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 of neck.
March 2015 Scan and biopsy confirmation
March 2015 Port and G tube placement and 10 teeth removed.
July 2015 completed 5 chemo and 35 radiations
Sept 2015 Cat Scan showed all clear !
July 2016 G tube and port still in place
I have had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries in the past 3 months with over 100 stones still there !

#193704 - 01/07/17 11:39 AM Re: Voice change [Re: EMTK3]  
Joined: Jun 2007
Posts: 9,677
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,677
PA
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
#193705 - 01/07/17 11:43 PM Re: Voice change [Re: EMTK3]  
Joined: Dec 2016
Posts: 46
EMTK3 Offline
Contributing Member (25+ posts)
EMTK3  Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 46
New Jersey
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.
#193726 - 01/13/17 06:08 PM Re: Voice change [Re: EMTK3]  
Joined: Jun 2016
Posts: 8
SoozyQ Offline
Member
SoozyQ  Offline
Member

Joined: Jun 2016
Posts: 8
Illinois
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
#193734 - 01/14/17 07:23 AM Re: Voice change [Re: EMTK3]  
Joined: Jul 2016
Posts: 82
Jo in NC Offline
Supporting Member (50+ posts)
Jo in NC  Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 82
North Carolina
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 of neck.
March 2015 Scan and biopsy confirmation
March 2015 Port and G tube placement and 10 teeth removed.
July 2015 completed 5 chemo and 35 radiations
Sept 2015 Cat Scan showed all clear !
July 2016 G tube and port still in place
I have had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries in the past 3 months with over 100 stones still there !


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