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John of arc #150614 06-10-2012 09:31 AM
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Definitely not dry yet. And even before any Of this happened to me I always carried around a water bottle. I drink like a fish normally. So that won't be a big adjustment. I'm hoping when I hit the dry mouth phase I'll finally be able to talk normally again. I can talk now if I thoroughly rinse my mouth out. I'm glad the sores went away. But I won't be satasfied until I can communicate again.


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John of arc #150628 06-10-2012 03:05 PM
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No one has had speaking issues with this?


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
John of arc #150657 06-11-2012 06:00 AM
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I lost my voice for about a week. My wife still talks about that?


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.
John of arc #150672 06-11-2012 11:14 AM
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My son lost his voice, too for about a week or two but developed his own sign language which his 5-year-old daughter and I quickly adapted to - like thumbs up or down for yes/now, shrug shoulders (I'don't know), etc. I would just ask him yes/no questions or "choice" questions so he could pick #1, 2 or 3. There were some funny moments too, which of course I tried not to let him see me smile or laugh, like when he got so upset with me, and waving his arms around excitedly for not understanding something he was trying to communicate. My son used the Magic Mouthwash which worked for a while and then he went to a Walgreen store brand which worked, too. Then when he started on Magic Mouthwash again it worked. So there are different things you can try if one doesn't work. Glad to hear the mouth sores went away. Hope you continue with more improvements.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



John of arc #150852 06-14-2012 07:26 AM
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How long did the thick salvia last? The thick salvia didn't make it difficult for anyone to speak?


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
John of arc #150853 06-14-2012 08:22 AM
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My husband John couldn't talk for around 4 - 6 weeks because he would gag and throw up from the mucus. He was on both Zofran and Compazine for the nausea. It will get better but it takes time. I kept a journal and I checked it and 2 months out of treatment John was talking again and the mucus was gone. Hang in there! Wanda


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
John of arc #150860 06-14-2012 09:14 AM
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John I left you a long message in the other forum... I too used to gag and spit it up. I could talk but didn't because it was so gross. It lasts for a month or so. I still have some. but mostly it's a like a post nasal drip at the back of my throat now so it doesn't bother me much. a drink usually rinses it away. After this comes the dry mouth... im an actor.. try doing a monologue and having your mouth dry out.
;o)


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #150880 06-14-2012 01:26 PM
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[quote=Cheryld]John I left you a long message in the other forum... I too used to gag and spit it up. I could talk but didn't because it was so gross. It lasts for a month or so. I still have some. but mostly it's a like a post nasal drip at the back of my throat now so it doesn't bother me much. a drink usually rinses it away. After this comes the dry mouth... im an actor.. try doing a monologue and having your mouth dry out.
;o) [/quote]
I'm an actor too. Little worried about how singing will work.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
John of arc #151119 06-22-2012 05:07 AM
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There are things you can do to help dry mouth a bit - biotene - olive oil - eventually you may get some saliva back but it's a long road. AnneO is a vocal teacher she may have some pointers - I muddle though though I do find the biotene does help. I'll so etimes use it during an audition. Take care..


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
John of arc #151122 06-22-2012 05:44 AM
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[quote=John of arc]I'm an actor too. Little worried about how singing will work. [/quote]

My wife has a restaurant customer that had OC 15 years ago and received the standard RT, which is way way worse than IMRT and he produces no saliva and carries a water bottle around his neck everywhere he goes. I am surprised what he eats when in the restaurant but even more surprised when he told me that he still sings in his church choir.


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.
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