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John of arc #150351 06-04-2012 02:11 PM
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Mine was horrible!! I drink it was almost 5 weeks out before I felt like I was turning a real corner. I see that you are in NYC- not sure of you are being treated at Sloan, but the second floor nurses there sprayed my mouth out everyday during treatment & a couple times a week after treatment for about a month. It felt so good. As the sores diminished, I was able to use the dab on lidocaine to get by & eat (soft, wet stuff) more comfortably.
I wish you a quick recovery-- that 1-1 1/2 mos post treatment were so tough- but you will get more comfortable!!

All my best!
Sally


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
Shauneen #150379 06-05-2012 11:06 AM
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[quote=Shauneen]You use Magic Mouthwash and Cloraseptic right?

I tried many, many, many things - prescription and OTC. This is what worked for me:
1. Club Soda (Schweppes is my fave and I still use it)
2. Benzydamine (Prescription rinse)
3. OraJel. YES! OraJel smile It worked wonderfully (after the first scream) for sore spots on my tongue and lasted much longer to control the pain than anything else.

I wasn't sure which one of your threads to post this in. Maybe they should be merged?[/quote] how did you use the club soda?


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
John of arc #150380 06-05-2012 11:09 AM
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mucositis is temporary right? I'm just do scared this is going to be forever. That I'll never talk again.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
John of arc #150387 06-05-2012 01:44 PM
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Yes this is temporary but like everything else with this Tx, each of us can react differently. I walked around for a couple of weeks with a styrofoam cup in my pocket which I would constantly spit that crap in. I would wake up multiple times during the night and run to the sink, not thinking I would make it. Everytime I would have to spit I feared that it would trigger a gag reflex causing me to toss my cookies which as you know is very painful during this time. I don't remember anything working especially well for me but I do remember one day waking up and it was gone for good and I believe it lasted about 2 weeks or so.


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 #150408 06-05-2012 11:01 PM
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[quote=John of arc]how did you use the club soda?[/quote]I just swished it around and eventually swallowed it. If the bubbles bother you - just use it flat. I imagine it's similar to the baking soda/salt rinse, but handier as you don't have to make it or spit it out.
Even now, I find it helps with dry mouth and cutting mucous. I take a couple of cans with me when I go out.

My radiologist told me to use it. I think a few people here use it too.


Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation.
Leukoplakia Bx Feb 2011 - Lichen Planus.
Bx May 2011 - Hyperplasia. Same sample retested as SCC.
June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia.
T3N1M0 Stage IV.
John of arc #150564 06-09-2012 06:20 AM
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So *knock on wood* I think I'm through the toughest part. My tongue is virtually in no pain. It's just a little sore sometime.

No I have like way too much thick saliva I have to spit out every couple of minutes. Will this go away?


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
John of arc #150565 06-09-2012 06:36 AM
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The thick rope like salivia is going to hang around for a couple weeks. It can be hard to get that out of your throat, so please be cautious. A waterpic can help also a suction machine can be rented from a medical supply company with a prescription from your doctor. Rinsing your mouth frequently with the warm water/baking soda/salt mixture can help. Others have found success with the seltzer water. This phase is usually a couple weeks and like turning off a light switch it just abruptly ends to then turn into something else.

The next phase will hang around longer than the thick gunk phase. This is all part of the healing process. You may have noticed alot of us have mentioned 'carrying a water bottle'. This is due to the dry mouth phase. It can quickly get painful if you dont immediately take a sip of water when you feel your mouth is dry. Some members have to take saligen or pilocarpine to help produce saliva. Thats a prescription medication, it didnt work for me. It only made me sweat excessively and in the summer for a woman it was horrible! Most patients get past the dry mouth phase after a couple months. For many of us we continue to carry a drink around equally out of habit as to still having a bit lower saliva than pre cancer tx.

Hang in there, you are doing great!!!!


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
John of arc #150566 06-09-2012 06:39 AM
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Here is a link to another thread about the thick ropey saliva problem....

Ropey Saliva 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
John of arc #150573 06-09-2012 07:46 AM
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Well it isn't unbearable. It's just thicker than my normal salvia and I feel like it gathers in my mouth really fast.
Not looking forward to the dry mouth phase. But I'm
Happy to be almost completely out of pain. Its hard to talk with all the salvia but when I clear it out I can talk for a little while.
The only real problem I'm having is sometimes at night my tongue gets stuck to the top of mouth and I'm partially asleep so I just kind of rip it off and then the top of my tongue is raw.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
John of arc #150610 06-10-2012 06:44 AM
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Could be the dry mouth stage is beginning. I had to carry a water bottle with me everywhere I went and I kept a bottle in EVERY room of my house and office. I couldn't walk 3 feet before I needed another sip. I also kept multiple bottles in my car as I would always forget them in stores. Also DO NOT eat shelled peanuts during this phase. Seriously I love those things and I was in my MIL's backyard doing some yard work and I left my bottle in the front yard. Anyway she had a bag of peanuts to feed the squrils so I took one. I thought I was going to need EMS and it seemed to take forever to get to my bottle. But I degress...Be patient as the DM phase can last a very long time.


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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