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#77818 07-31-2008 02:01 PM
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Yay! After 33 Radiations (they added one the last week because of close margins) and 7 chemo treatments, I am DONE with treatment! My neck is blistered and oozing and sore, my tongue is burning and covered in ulcers, I'm coughing up more mucus than I ever thought my body was capable of producing, but I never have to get strapped down on the Tomotherapy Machine again! My body held up wonderfully until the end of week six and that's when the mucus showed up, along with the ulcers, and you could no longer differentiate my neck dissection scar from the rest of my neck because of the redness and blisters.

A couple questions, mainly because I'm impatient and want to be better yesterday. How long will the mouth ulcers / mucositis stick around (the whole side of my tongue and part of the top are white and ulcerated)? I am using nystatin as well for thrush because that flared up again (but it burns like crazy!), but basically the only thing I can put in my mouth right now is salt water, everything else burns, even plain water. Im swallowing as much as I can - I basically take a sip of water and swish with salt water until I can't stand it any more, a few times a day. It's horrible, because before the ulcers showed up, I was eating pretty normally. Also, how long before I notice a reduction in the mucus in my throat. I grossed my tech out yesterday with the huge loogie I coughed up after treatment - seriously they fill up washcloths! I'm taking Robitussin, but that basically just seems to make it easier for me to cough everything up. I guess if the inside of my throat looks anything like the outside of my throat, I'm going to be really good at hocking up loogies by the end of this! HA!

Ah, it just feels so good to be done! There is a light at the end of the tunnel - I was beginning to think mine was burned out! Best of luck to everyone still in treatment, I've still got a long way to go before I'm better, but let the healing begin!!!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Stephanie
Baking soda solutions with or without salt may be even better tolerated.
You could consider getting diflucan for the yeast infection (tablets).
The mucus lasted for a bit longer than a week and then suddenly stopped. I was also amazed that I could produce buckets of it! In my case it started after the rad tx, these things are individual anyway.


M





Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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Hi Stephanie

I would just like to concur with Markus.Add a teaspoon of bicarbonate of soda to the salt.this cuts through the mucous and stops it being quite so stringy and sticky.Its good you can expectorate,because a lot of people have such a terrible job getting the mucous plugs up that they get exhausted and even choke.It is wonderful to hear your youthful,optomistic attitude Stephanie and i am sure this will make your recovery quicker and less stressful.Just a little word of caution.Dont expect miracles.This will take a little time to get over.

Well done so far

love liz

Last edited by Cookey; 07-31-2008 09:01 PM.

Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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Stephanie

really great!
and I hope you have a swift recovery.
Keep us posted smile


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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Hi Stephanie,

Well done! If only you could celebrate properly!! I finished treatment on the 25th July and am still waiting to turn that damned corner. My neck finished up in a simnilar state to what you have described and in the last two days I have started to see some improvement to the point that at least half of the open weeping areas appear to have smooth shiny skin covering them. It certainly doesn't hurt as much now.

The inside of my mouth has been slower to respond to the point that I was in tears of frustration yesterday. I don't have a peg or a naso-gastric tube so I still have to force myself to eat - but everything still tastes crappy and eating is a slow, slow, painful process. I think that I have had some improvement today with my mouth. I was waking up constantly due to coughing up mucous (and sometimes vomiting) but that settled a few days ago.

Everyone at the Cancer Centre I went to(and on this site) told me that things may in fact get worse for the first two weeks following treatment. I was a bit sceptical and hoped for immediate relief but at least for the first week things did get slightly worse. Nine days out I think that they are finally starting to improve!

Being less than half my age you may improve much quicker. I hope so.

Best Wishes for a quick recovery!

Sue






55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
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Congrats Stephanie on finishing your treatment. I finished mine August 23rd of last year, so I am sneaking up on my 1 year anniversary. I agree with what Markus said about the mouth rinse and diflucan. I was constantly rinsing my mouth out with a baking soda/salt/water solution throughout the day and during the night. (1 tablespoon baking soda, 1 tablespoon salt, 1 quart/liter of water) I usually went throught 2 quarts a day. It was the only thing that didn't burn my mouth and this keeps your mouth clean. My doctor also switched me over from nystatin to diflucan (pill) for the thrush. I crushed it up and put it down my peg tube. The nurse in the radiation department gave me a lotion to put on my neck for the blisters and redness.


Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
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Stephanie:

Congrats on getting thru radiation. Hang in there, now is probably the worst time you will go thru. Its only going to get better from this point. Try the water/baking soda (salt if you can tolorate it) rinse as many times per day as possible. That will help cut the mucous.

Dont forget to keep drinking water no matter how bad it burns or tastes. Try also doing some jaw exercises like opening your mouth wide and holding it for a few seconds several reps. That will help prevent trismus, which trust me you do not want to get.

Be ready for what comes next. The mucous hangs around for about 2 weeks then comes dry mouth. Keep up the rinses and it wont be so bad. Hang in there, you are almost to the point where you will start feeling better.



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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Three weeks from now, maybe 2 and a half you will walk out of that tunnel and you will know that your recovery phase has begun. You will have more bad days at first but over time they will be replaced by more good days until good days win over completely. But hold on as I was 16 months post Tx before I felt I was probably thru my recovery.

But hey congrats on finishing Tx but you will feel a void in your days for weeks to come.


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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Congrats Steph!

Still a ways to go before you really start to notice that you're feeling better. Hang in there for the next 2-3 weeks or so and keep your chin up.

Kevin


9 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
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Wow congrads! I now how great my last radiation felt because I cried during the procedure I was so happy that was Jan 08. But it took me at least 4 weeks for my mouth to heal up. I had sore in my mouth and throat. I did have a peg tube so that was very helpful. Your mouth will go through many changes and like everyone will tell you everyone is different. I still wake up with dry mouth and carry water with me everywhere. The mucus is no fun I still have some issues with mucus in the morning but nothing like it was before. Just hang in there it will get better it just takes time.


Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
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