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archie Offline OP
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Just an update on Dads treatment,He is 3 weeks in and 3 and 1/2 to go. He has mouh sores,burnt skin,constipation,nausea and just cant eat. He says he feels as though his throat is closing up.Does anyone know if that is normal?God he still has 3 plus weeks to go!!!! We were wondering also about something called colloidal silver as a gargle and mouth wash, has any one heard if this works?


Archie
T1 N0 M0 SCC of Soft Palate
Moderately Differentiated Invasive SCC
PET scan- FDG avid in Soft Palate Lession
Rt only: 6and 1/2 weeks


No Chemo atm
Diagnosed 10/02/10
Joined: Nov 2009
Posts: 396
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the symptoms you describe sounds pretty normal. does he have a PEG?? he certainly needs to keep up the nutrition right now.


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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Posts: 5,260
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I agree with Teresa, My thorat still feels like it's closing so I would say this is normal.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Gabe, I was told to use a Salt water mixture and then followed with Biotene Mouth Rinse which I still use everyday. Hope this helps some. Good luck and give your Dad my best wishes!!! Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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Hi Bob,
Just to set the record straight this is Senga's posting for Dad Archie. Just posted a few things that might be of help but as I had surgery only I cannot be of help with most of Archie's issues.


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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archie Offline OP
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Thanks everyone, well its Monday and week 4 about to start.I tell dad we are on the home stretch now, so we just have to try to see the finish line. Its all very well me saying these things to him but he is the one who has to look through all his pain.
He has been a very fit healthy man his whole life, working as a supervisor in High Rise construction as a site foreman,never has a sick day in 36 years.sounds unbelievable but true.He has just not long retired 3 years ago and has still led a very active retirement.So I think it is dificult for him to understand taking all this in.I know the drs all said there was POSSIBLE side effects and I suppose we put our heads in the sand thinking he would be ok through it all.Well not so its very hard for him and by looking at this forum,I think things are just starting.It is good to know what is going to happen though as we can prepare a bit or at least know that what he is going through is normal (whatever the word normal means at this point) and that people do come out the other side of treatment and beat this horrid thing.Hopefully we will chat with the drs today and let them know what has been happening.He does not have a PEG but I think maybe we should have asked, can he get one now or is it too late?
Thanks for the info everyone.


Archie
T1 N0 M0 SCC of Soft Palate
Moderately Differentiated Invasive SCC
PET scan- FDG avid in Soft Palate Lession
Rt only: 6and 1/2 weeks


No Chemo atm
Diagnosed 10/02/10
Joined: Mar 2008
Posts: 404
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Hi Archie

Sorry to hear that your dad has to deal with this disease. The radiotherapy assistant/ nurse should be able to give your dad all the appropriate lotions and potions that he needs throughout his treatments.

I was given a bag full of medications and lotions for everything. Mouthwash for mouth ulcers, lotions for my neck, medication for constipation, painkillers and so on. They should give him all the tools he needs to make the treaments as bearable as possible

It would be a good idea to speak with the doctor regarding a PEG tube. Your dad really needs to keep up his calorie intake during this time. The radiotherapy just zaps all of the goodness out of our bodies. His body will need to stay full of nutrition to fight the damage that radiotherapy does. The hospital can also supply Ensure (a supplement drink) to him. The nutritionist or dietician at the hospital can organise this. They will deliver a supply of this to your dads home.

Also, he should keep drinking lots of water to ensure that he stays hydrated throughout the treatments.

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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Archie,

If he is NORMAL and I use that word very loosely in this post, he may have another 7 weeks of the ordeal left and probably the worse yet. Check on the Peg but also ask about the Nasal Tube. They will tell you it's meant for short term situations but to me 7 weeks is ST. I personally would avoid that Peg until everything else had been considered.


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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archie Offline OP
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well, hello all it has been a while since I was last on and that is because we have been through quite an ordeal.Fri the 19th of March I was unable to wake dad up in the morning he was unconcious. So had to get an ambulance and he was taken into hospital with respiritory failure. All due to severe infection of his throat and left lung. No one will tell us if it was because of the radiation or not.He has been in hospital on drip antibiotics for a week now and is on the mend.Since he has been on the antibiotics I cant believe how different his mouth looks. Before it was extremely coated and white,which the radiation nurses said was normal but it looks so different now and he has still been getting the treatment.I think it was infection before.
Only 11 fractions to go so hope it all goes ok.


Archie
T1 N0 M0 SCC of Soft Palate
Moderately Differentiated Invasive SCC
PET scan- FDG avid in Soft Palate Lession
Rt only: 6and 1/2 weeks


No Chemo atm
Diagnosed 10/02/10
Joined: Jun 2007
Posts: 10,507
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Im so sorry to hear of your father's problems. He is so lucky to have you there to assist him. Luckily you found him and got immediate medical help for him.

The white coating in his mouth could be whats called thrush. Its similar to a yeast infection and coats the mouth white.

Best wishes to your father for a speedy recovery.


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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