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Joined: Nov 2014
Posts: 73
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Nov 2014
Posts: 73
Hello, I am now 2 weeks out from treatment. I stopped Peptamen and began blending foods and using Liquid hope and real foods prepared meals. And even made own peach oatmeal yogurt smoothie.

I saw a swallowing therapist last week and she is going to try to get Dr order. Saw RAD Dr he thinks I'm doing pretty good. I am still fatigued and sleeping a lot.

Recently I have noticed a really bad taste which seems to be coming from the base of my tongue. I spit and rinse with regular water. I have had a dry mouth lately. I am not able to swallow just yet.

Does anyone else have experience with tumor giving off a bad taste or large scab in area of where tumor was? This just began yesterday.

Thanks to all for your help.

Last edited by larry6905; 02-09-2015 07:06 AM.

T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Jan 2013
Posts: 1,291
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
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I had very bad smell coming from my mouth before I was diagnosed. The tumor had exposed dead flesh that was necrotic causing the bad smell. As you are post tx, one hope you don't have any necrotic flesh now. I'd get the doctor to ckeck it out sooner rather than later. Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
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Food particles and thrush will do the same and 2 weeks post treatment, the tumor should be gone.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Aug 2014
Posts: 23
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Posts: 23
Two weeks out from rads, the mucositis is likely still getting worse. It does get better, but probably not yet.

Hubby had foul tasting mucus and/or saliva for many weeks before it dried up. He used club soda to try to rinse it out. He did lots of rinsing with the baking soda rinse, neutra-sal and club soda (not all at the same time, he would switch off). Taste and swallowing improved about 8 weeks out. Mouth sores were much better then, too.

It's always a good idea to get the docs to take a look just in case something is infected.


Caregiver to husband with SCC BOT HPV+ T4N2cMO stage 4a
CT scan 7/23/14
Biopsy 8/7/14
PEG tube in 8/15/14, out 4/2015
35 rads, Cisplatin X 3 - finished 10/27/15
cancer free May 2018



Joined: Mar 2014
Posts: 286
"OCF Down Under"
Gold Member (200+ posts)
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"OCF Down Under"
Gold Member (200+ posts)

Joined: Mar 2014
Posts: 286
Many weird things will be happening to you right now. Try not to get anxious about new things. Try a variety of different food and drinks, whatever works. Don't be surprised when something you could tolerate this week is disgusting next week. Do whatever works to keep the machine working. Nutrition, hydration, toileting and rest and the four big things you need to get any way you can.

Be calm if you can. Try to separate the physical things from the emotional reaction to it, because that can make it all much worse. Remind yourself you've come a long way and you've done really well.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.

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