Previous Thread
Next Thread
Print Thread
#60871 05-16-2007 10:57 PM
Joined: Sep 2006
Posts: 149
trt Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Sep 2006
Posts: 149
can't think of better description right now.

I have a pretty horrid taste in my mouth most of the time (not when eating). It gets worse towards the end of he day and when I am tired.
Eating or drinking something sometimes actually improves it temporarily.

Is there something I can do get rid of it.


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
#60872 05-17-2007 02:27 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Keep eating and drinking?

Just had to say that. I still drink about a bathtub full of water a day and spend my nights walking. The only time I had a bad taste in my mouth was when I had that thrush thing and a prescription cured that quickly. Good luck with other posters.


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.
#60873 05-17-2007 12:30 PM
Joined: May 2006
Posts: 137
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: May 2006
Posts: 137
trt-
Tomotherapy is radiation, right? It will screw up your saliva and taste buds. I didn't eat any solid food for about 4 months. Work around it, get enough nutrition, and be glad as the treatment fades into the past. It will get better. The 'new normal' will be just fine.


dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
#60874 05-17-2007 12:30 PM
Joined: May 2006
Posts: 137
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: May 2006
Posts: 137
oops-double tap shocked


dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
#60875 05-18-2007 12:09 AM
Joined: Sep 2006
Posts: 149
trt Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Sep 2006
Posts: 149
I am still having trouble with eating. Just can't seem to get enough calories. Everything is so offputting.


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
#60876 05-18-2007 02:23 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
trt,

Have you tried Carnation VHC?

I don't think many of us consume the amount of cals or protein that our bodies need during this post Tx time. I only recently began to see a few more pounds on the scale and I'm almost 9 mos post Tx. I still drink 1 can of VHC every day just to boost my cals and I eat 3 meals a day where before Tx I never ate 3 meals and I road my bike 100 miles a week and STILL could gain weight if I didn't watch what I ate constantly.

We all know what the surgery/chemo/radiation does to our bodies during Tx but it most surely does a number on us long after our Tx ends and surely can affect each of us differently. It's hard not to listen to how everyones else has handled our Tx but don't try to measure yourself by us. Just continue to let all your docs know everything about your progression and hang in there.


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.
#60877 05-18-2007 03:43 AM
Joined: Feb 2007
Posts: 168
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: Feb 2007
Posts: 168
trt, I am still not eating meals. David saved me with the CIB VHC. I've been mixing it with an Ensure plus 2-3 times a day since mid Feb. 3x a day =2730 calories. My thrush comes back too. When it does my mouth gets dryer, a little soar, and there's a taste. When I don't have thrush I try to implement a soup for my last meal of the day, as eating anything means alot of water. If I try this early in the day I get bloated and feel miserable for an hour or two. I'm glad to hear rileymc didn't eat solids for 4 months. I'm going on three now. I'm kind of used to it but would love to eat something. I just haven't had luck with it. I also drink about a half a case of water a day. I use a biotene mouthrinse, a salt, baking soda, and water rinse, and biotene toothpaste and my mouth usually doesn't get that taste and film until late afternoon. Hope this helps, Lee


Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
#60878 05-18-2007 12:13 PM
Joined: Feb 2006
Posts: 32
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Feb 2006
Posts: 32
I find that sugar is what starts the reaction leading to bad tastes in my mouth. It seems to turn my mouth very acidic or something. I find that xilatol (in gum or liquid) helps during the day, and brushing and rinsing often with biotene...

#60879 05-20-2007 09:29 AM
Joined: Sep 2006
Posts: 149
trt Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Sep 2006
Posts: 149
Does Carnation VHC taste better than boost and ensure? Any digestive problems like diarrhea.

I was having trouble with boost.


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
#60880 05-21-2007 07:59 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
trt,

VHC only comes in vanilla. I couldn't taste much with either Ensure, Boost or VHC so it didn't matter. I also didn't have any problems in the digestive arena. BTW, I still drink 1 VHC every day because I know it's more nutritious than anything else I like to eat now. I do mix it with equal parts of whole milk now whereas during Tx I was just interested in swallowing that can as fast a possible and holding my mouth shut to try to stop it from returning.


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.

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,506
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,751
Newest Members
GaDaughter, Carole O, Benni, Stephie75, Dianed
12,766 Registered Users
Forum Statistics
Forums23
Topics17,984
Posts195,998
Members12,766
Most Online458
Jan 16th, 2020
OCF Awards

Powered by UBB.threads™ PHP Forum Software 7.7.5