| Joined: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP 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: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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 | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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 Member | Member Joined: Aug 2014 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) | "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.
| | |
Forums23 Topics18,251 Posts197,143 Members13,325 | Most Online1,788 Jan 23rd, 2025 | | | |