| | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Bill, adding my welcome and so sorry you're going through this by yourself. You've got a new family here though, and I hope you'll keep on posting with us about every little thing. The dry mouth can be awful and I hope yours will improve. Folks have offered some good suggestions.
Sometimes biting gently on the sides of your tongue - assuming there are no issues there - can help stimulate saliva. It used to work for me when I was a flute player.
Thinking of you and sending positive vibes.
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 34 | Hi Bill, I am about 3 years out of treatment. I would say it took about a year before I could really taste food. Still to this day I need what I call food lube to help moisturize food to facilitate easier swallowing. My fridge is never without mild salsa, mustard. Ketchup, BBQ sauce and light Italian and ranch salad dressing. Not to mention, I wouldnt even attempt eating without a drink within reach. It's I guess the new normal. It's doable. No complaints here.
discovered a golf ball in my neck St.Paddy's day 2010.
Dx stage 4a left tonsil ca may 2010 at 50
non smoker, moderate beer drinker
HPV-16 pos.
tosillectomy
9 weeks Cisplatin
35 rads
nov.2010 PET NED
2011 2x PET NED
2012 2x PET Ned
3/13 Pet NED
SEptember 2013 Pet uh-OH.questionable and anxious
follow up pet, yup, its back.
mets to sub clavivular and mediasteinum nodes
biopsy positive scc.
trying to figure out next step
my imaginary friends think I am crazy.
| | | | | Joined: Nov 2013 Posts: 10 Member | | OP Member
Joined: Nov 2013 Posts: 10 | thanks Bart! Had to have my teeth pulled so cant chew anything. Ive tried mint but it comes on very strong and cant keep in mouth. Im a little more than 3 months out of treatment and pain is tiring. my hearing has also been greatly impaired from chemo. Really helps to see how many are going through this and their stories. | | | | | Joined: Nov 2013 Posts: 10 Member | | OP Member
Joined: Nov 2013 Posts: 10 | Thanks for the advice. It sure helps seeing others who are going through this and their stories. | | | | | Joined: Nov 2013 Posts: 10 Member | | OP Member
Joined: Nov 2013 Posts: 10 | Thanks 3 month out of treatment. The pain is tiring. had both chemo and radiation for 7 wks. Been on feeding tube since June 11. starting to introduce a few smoothies just difficult to get down. It sure helps reading about others going through this and their stories. | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Here is a link with dry mouth info. Pain can be from mutiple factors including radiation, chemo injury, food injuries, mucosictis, bacterial, fungal, like thrush, and viral infections, which need to be treated with appropriate medication, impecable oral care, pain meds, changing type of foods etaen not to cause injury like non sharp textured, spicy, hot temperature, acidid foods. http://www.oley.org/lifeline/Managing_the_Symptoms_of_Dry_Mouth.htmlGood luck
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
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