#83823 11-09-2008 12:41 PM | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | I don't know how others have handled the terrible taste in their mouth but I am having a time of it. To me it taste like pure salt at all times. It is so nauseating that I can hardly eat anything. I tried to eat a half of an egg sandwich with mayo and couldn't get the first bite down. Tasted like old grease. Several things I have tried to eat taste like old grease as well. I have mints but they also taste like salt. I don't know what to do as I am not getting enough nutrician down to keep a bird alive. I weigh about 125 lbs and can't afford to loose weight. I drink the ensure and water, eat jello and yougart but that is all I can stomach. Any suggestions as to what to do? Thanks, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Angel,
I have a salty taste in my mouth very often. When not salty, it's a very sweet taste. But then those are the two dominant things I taste in foods, too. Have you tried using the Biotene mouth wash? I find that even a quick shot with the mouth spray helps, though it helps to swish some water in my mouth first.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Lani, Is the biotene a prescription? I don't have that. All I know is that today I am very nauseated. I have tried non alcoholic mouth wash as well but nothing will get this taste out of my mouth and it is making me so sick. I will talk to the Dr. tomorrow. I have an appt with my ENT, radiologist, and chemo Dr.'s. Maybe someone could help me. Thanks, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Angel,
No. It's on most pharmacy shelves with the toothpaste and mouth washes. I'ts made specifically for dry mouth relief (lots of RO's give out samples). I have the mouth wash, mouth spray, and toothpaste. Even though I don't have teeth, I brush my tongue with it. I keep the mouth spray - mint flavor but not enough to irritate - with me at all times and use it very often, including when I first wake up.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Lani, I have yet to find the mouth spray in a store! I can find the mouthwash and the toothpaste, but that's it. I may end up ordering from the website. http://www.laclede.com/Angel, The taste in my mouth changes on an almost daily basis. And it is so frustrating! I too have been dropping some pounds, but I have quite a few to spare. The docs don't want too much loss, though, so I'm struggling along eating as best as I can. - Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Margaret,
My little "hometown" drug store didn't have it, but I just told them I use it, and now there it is.
Here, Walmart and Walgreens both have it. I haven't looked anywhere else because I haven't needed to. I bet if you ask them to, your store will start to carry it. You could also try the web site. They might help you out with where to find it in your area. The spray is my favorite, and I didn't even know they had started to make it until someone here at OCF told me.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 8 |
Angel
Have you tried the salt/baking soda/water rinse? That is something that you can do several times per day. Its a quart of water, 2 tsp baking soda and 2 tsp salt. If the salt bothers you it can be omitted or cut the amount down.
Biotene spray and rinses are available at walmart and rite aid.
ChristineSCC 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  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Angel,
We all can be different but I just got to the point that I would just pinch my nose, like my Mom use to tell me, and swallow my VHC as fast as I could. Then I would pinch my mouth shut and stand over the sink just in case. Just all like of the yucky phases we go thru, this will pass in time.
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.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Everything tasting salty just means you have lost all taste for everything except salt. I had the same problem. Even bottled water tasted salty. For me, eventually salty went away and changed to cardboard. Try the Ensure Plus rather than the Ensure. 360 calories a can or Dave's Caranation VHC. I liked the butterpecan and coffee Ensure Plus and still drink the vanilla. Also rinse with the baking soda. It does help the mucous problem.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Salt for me too. Thanks for posting the question. I am going to try the baking soda rinse now. I too am loosing too much weight too fast. 5'4" and down to 115lbs. I haven't seen that on the scale since puberty!
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Lani, I did find the store that has the biotene. The toothpaste was $10.00 a tube. I think I will try the spray soon and the mouthwash. Thanks a lot. Angel
Christine, Yes I have tried the salt and baking soda but stopped it when everything went to sal but I will start it again as I think it did help some with the taste. Thanks, Angel
David, If I tried to swallow something quickly right now I better be standing over something. lol I am very sick at my stomach. My chemo Dr. gave me Emend and that has been great until I got thrush. He also gave me another nausea med but I couldn't take it as it made me highly nervous, so he ordered me another one and medicare wouldn't approve so now he has ordered compazine to take along with the emend and on the days I don't take emend. I pick it up tomorrow and I sure hope it helps. Thanks, Angel
Eileen, I really appreciate you reminding me that the salt and baking soda helps with the mucous. I am having a time with that as well. Expecially after I have slept several hours and wake up I feel like I have been on a desert island without any water for a month. And to come up with enough salava to spit is a trip. Thanks, Angel
AmyK, I am having the same problem with weight. I didn't weigh to much to begin with and I worked hard to gain up to 130 lbs and now I've lost what I gained and then some. My chemo Dr. said to start drinking everything I can and try to drink milkshakes along with the ensure, otherwise we are going to have to look toward the peg tube. But until we get this nausea problem helped some I can't even drink coffee or ensure but I am getting down water and a little ensure but I know that is not enough. One thing about it is that you have to drink water as this treatment makes sure you do. I hope you get to feeling better and put on some weight. Thanks, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: Jan 2006 Posts: 757 Likes: 2 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 2 | Angel,
$10 for the toothpaste is pretty expensive. I've paid anywhere from $5 to $8, and bought it at Wal-Mart, drug stores, and even my grocery store. Word must be getting out because some of the stores I shop at are now carrying more of the Biotene products.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2025 (ORN of lower jaw)
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Susan, I found the products at Rite Aid Pharmacy (what used to be Eckerds). They start at $8.99 and go up from there. I will check at our local Walmart. They normally always have the best buys. Thanks, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | |
| Forums23 Topics18,288 Posts197,248 Members13,442 | | Most Online2,386
Nov 19th, 2025 | | |
This is another custom island. This one could be used for ads. This spot is one of the best places for ads on your site to be placed. This can be enabled/disabled on a per forum basis.
| | |
|
