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ESikon #111666 02-04-2010 11:25 PM
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I found good old warm salt water to be the most effective out of anyhting else for me. It felt the best-- it burns a little bit but it really heals the sores and redness and iritation better than everything else. It also cut the mucous down quite a bit. I also took musinex which helped dry me up and thin the mucous down.

Its a tough place where you are now but just take it easy. You'll figure out what works best for you. Yes I too would wake up for about 6 months afterwards-- and have something to clear out of my throat. It still happens once in awhile now too. Kinda gross but hey-- what are ya gonna do.
That area is so sensitive and its just been completely assaulted and altered.

Hang in there- you are doing great!




Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #111667 02-04-2010 11:28 PM
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yes your discription is normal. I think we all experienced this ghostbuster like stringy rubbery mucous....The tissue is sloughing off and renewing itself and that is what it does. I know its kind of horrible!. I"m so sorry. It will get better. It made me sick as a dog too.


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #111668 02-04-2010 11:59 PM
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I think this by far as been the worst part of the whole treatment.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #111680 02-05-2010 07:00 AM
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I carried around a small Styrofoam cup in my pocket and spit in it constantly. I only remember this stage for me lasting about 2 weeks though and while disgusting, it was not the worst part of my Tx by a long shot.


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.
davidcpa #111685 02-05-2010 07:44 AM
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I guess with me, is that my throat is still so raw and swollen, that everytime I puke because of the mucous, it just makes it more swollen raw. It seems like I take one step forward and then two steps back. I am getting so frusterated. I knew it was going to be rough, but not this rough. I just want to go to sleep wake up when it is all over.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #111690 02-05-2010 09:25 AM
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Angelia,

I was told the last three weeks (last week of treatment and the two following)would be the worst and I would just want to climb in a cave.

That was about right. I hated it. I didn't get the mucous that bad but had wicked ulcers. Your getting there.

One day soon you will realize that today was not quite as bad as yesterday, then you will put two of those days together and then three and you will realize you are over the hump.

Hope that day comes soon.

Kelly


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #111725 02-05-2010 03:30 PM
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Angelia,

You're getting there one day at a time. Just be a little more patient.


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.
davidcpa #111758 02-05-2010 07:05 PM
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Angelia, I second everyone's good words. My mucousitis lasted a good 8 months after RT. I also had a mouth and throat full of open sores for what seemed like months. As a result I too was reluctant to do the baking soda gargle thing. All I can say to that is to try and force yourself if at all possible, as it will help. Even if you have to do the lidocaine thing first. (I had to hold the stuff in my mouth for a full 10 minutes before I could swallow even a sip of Ensure, for instance; water a bit easier but not much)

But then, over the course of about a month, the mucous thing pretty much stopped. I gather from reading posts here that it takes differing lengths of time for each of us.

You WILL get better. It's an awful, awful thing to go through (I was nauseated 24 hours a day for 3 months last year) but you'll beat it.

Courage!
David 2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #111836 02-06-2010 04:42 PM
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Patient? I am patient or have been one now for a long time. smile Anyway, I actually got some sleep last night and went this morning and bouth a new washer and dryer, but Id id no last mroe than 30 minutes before I started getting really nauseated and sick to my stomach. Made it home, but then out it all came. I just have no energy. I want it all to be better now. smile Anyway Patience is not one of my many virtues.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #111844 02-06-2010 05:53 PM
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Posts: 404
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Angelia

You are not alone, everybody wants it to get better right now.

If you think about where you were 2 weeks ago, I'm sure things are already better than they were then. You are home now with your family and able to do things, even if it is for a short period at any one time, that is definitely a step forward.

It can be a very slow process, BUT on the flip side, it is temporary.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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