Previous Thread
Next Thread
Print Thread
Slobbering and odd taste in mouth #199315
10-26-2019 05:07 AM
10-26-2019 05:07 AM
Joined: Oct 2019
Posts: 3
S
Sandy Scott Offline OP
Member
Sandy Scott  Offline OP
Member
S

Joined: Oct 2019
Posts: 3
I cannot seem to get a straight answer from either of my two surgeons regarding the odd taste in my mouth that I constantly have since oral cancer surgery. I would think it is a function of my taste buds changing, but if I expectorate into a tissue, the expectorant smells exactly as it tastes. Any idea what causes that.

My second question is about slobbering. I am 10 plus weeks out from a mandibulectomy with fibula free flap. My lower right jaw was the area removed. I no longer have feeling in the right side of my lower lip and chin and neck in that area. I am currently through half of 20 radiation treatments due to the diagnosis becoming stage 4 when cancer was found in my excised mandible. I constantly slobber I presume due to the fact that not only are there no teeth to stop it and the tongue is probably slightly raised from putting tissue there in place of the excised portion of tongue. Is that something that will ever stop? I cannot get a straight medical answer to that. To me, it relegates me to no social life in that I don't want to stand about constantly wiping the drool from my slobbery mouth. In addition, my speech is so bad (taking speech therapy twice a week and doing speech exercises three times a day) that I feel unfit for the public.

One other bothersome issue: My upper right teeth now rest against the inner portion of my cheek and rub up and down the cheek as I open and close my mouth. I wonder if that is due to edema, or is that my new permanent life?

Oh and yes, for those of you that have had a fibula free flap procedure, when did you leg stop hurting? Mine seems far from heeled (its dressed daily and medihoney is applied to the Tefla bandage) 10 weeks out and it has hurt from the moment I awakened from my 13 hour surgery until now. Particularly bothersome in that I have been a very active athlete and now am qjuite limited in my activities.

Thanks for any insight and/or info.

Re: Slobbering and odd taste in mouth [Re: Sandy Scott] #199322
10-26-2019 03:12 PM
10-26-2019 03:12 PM
Joined: Jun 2019
Posts: 111
D
Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 111
Hi Sandy Scott,

I'm 29 fractions into my radiotherapy (RT) and I also have an odd taste, I produce so much saliva and it's quite thick and yes, there is an odour to it. It's part of your body trying to heal the affected area in your mouth. Whilst everyone is unique in their own experiences, there are many similarities along the way. It'll probably get worse before it gets better with regards to saliva production.Mine has got thicker and sometimes hits my gag reflex, which has not been pretty. Most people experience a reduction in the production of mucus a few weeks after RT has finished. Apparently there is also the experience of no saliva production at some point once RT has finished.

Speech issues. Well I've had a radial forearm free flap tongue reconstruction to replace most of my tongue. I have a severe speech impediment which I am trying to improve by using tongue twisters, singing to my favourite songs and reciting the alphabet. It has helped me a lot.

Your mouth is pretty swllen on the inside from surgery and RT that this could be one of the reasons as to why your upper right teeth now rest against the inner portion of your cheek and rub up and down the cheek. We are not Dr's and can only make suggestions from our own experiences.

As for your leg hurting and not healing, you're 10 weeks post surgery, rest to let your body heal. It's been through huge trauma. If you are worried then you'll have to keep prodding your surgeon (or specialist) to get answers.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: Slobbering and odd taste in mouth [Re: Dizz_zzey] #199328
10-27-2019 06:43 AM
10-27-2019 06:43 AM
Joined: Oct 2019
Posts: 3
S
Sandy Scott Offline OP
Member
Sandy Scott  Offline OP
Member
S

Joined: Oct 2019
Posts: 3
Thanks for the reply! Very informative. I also learned that apparently the forum does not flag you when there is a response to a posting. Having heard nothing since I made my post, I decided to check and found your reply. Perhaps I am missing something in my settings, but I would think informing one of a response would be quite simple as it is on other forums.

I've had the saliva and smell issue prior to radiation but your suggestion about the healing process seems valid. I can never get an answer to that seemingly simple question from my surgeons. Not looking to the final two weeks of radiation in that my mouth and lips are already full of sore areas and I was told that symptoms usually show up between the second and third week. Mine apparently wanted to get the jump on making my life more miserable. Good luck with your continued healing and speech improvement. I have been doing speech exercises three times a day, but as of now, my mouth and tongue have become too sore to participate. Take care. Sandy

Re: Slobbering and odd taste in mouth [Re: Sandy Scott] #199329
10-27-2019 09:24 AM
10-27-2019 09:24 AM
Joined: Jun 2019
Posts: 111
D
Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 111
Hey Sandy,
When you reply to a thread if you see under the post icons there is a section called post options, there is a little box that says Add this to my Followed Threads. If you check the box then you will receive notification that someone has replied.

With oral cancer, any surgeries in the mouth can compromise saliva production. We have to ensure that our mouths are incredibly clean because the saliva we now produce isn't of the same quality that we once had before. Radiotheraphy just adds to this issue. I am not sure if the smell and taste will change back once my RT is finished, I hope it does.

You've had 20 fractions of RT, that's 4 weeks worth, I'm sorry your symptons appeared earlier. The 6th week was tough for me and, like you, I am not looking forward to my final week. I am tired and my mouth is very sore, but it's my final week and then it is done. I've been told that the symptons will continue for around 2 or 3 weeks post RT, so be prepared. At least there will be no more RT.

I've found that regular intake of paracetomal has helped ease the pain, plus rinsing with warm water that has baking soda and salt (if you can manage that). If you have magic mouthwash then use it. I'm drinking ice water as it cools my sore throat down. My only nutrition is Ensure plus, some days my mouth has been so sore that it goes through my G-tube.

I've stopped doing most of my speech therapy excercises due to my mouth being too sore and loosing my voice for 3 days, so it seemed a little pointless.

It does sound like you're having a tough time, have you got anyone close by that can help you?


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: Slobbering and odd taste in mouth [Re: Sandy Scott] #199346
10-29-2019 08:12 AM
10-29-2019 08:12 AM
Joined: Jun 2007
Posts: 10,401
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,401
PA
Hi Sandy!

Im sorry to read about your problem with saliva! The over-abundance of saliva and bad taste in your mouth is something not seen very often. That could be why you do not have the replies you had hoped to get? Dealing with a rare disease that has so many variables when it comes to side effects, reactions to procedures, medications, etc make each one of us even more of a unique individual who has their own ways of dealing with after/side effects and reactions.

In my 12+ years with OCF, Ive spent countless hours reading every single post since joining in June 2007. Ive interacted with tens of thousands of oral cancer (OC) patients/survivors and caregivers from all over the US and some from Canada or occasionally a few from other countries. I have only seen what you described twice. One person has dealt with the over-abundance of saliva and foul taste in their mouth for 14 years! In my travels for OCF, I have met and spoken to many of the top OC specialists in the country in Boston, NY, Houston, North/South Carolina, Nashville, CA, FL etc. At medical conferences Ive met many top specialists from all over the world. The things fellow OC patients/caregivers have asked me about that have stumped their own physicians Ive asked these top specialists. I also have discussed their random/complex issues with my own ENT who has about 30 years experience and as head of the otolaryngologists dept in my regional CCC affiliated hospital, he definitely knows his stuff. Overall almost every one of the specialists said the same thing... everyone is different and will have their own reactions from cancer treatments weather its surgery or rads. What a few of the specialists explained to me in detail seemed to make the most sense ... some patients will lose their sense of taste, or have an extremely dry mouth but on a very rare occasion someone could react the opposite of the dry mouth effect and have a significantly increased amount of saliva made even more noticeable by its sour/putrid taste. While I know its not much of a solution, theres a chance its only temporary. At least I hope for you its only temporary, that in time things will return to how they normally are for you. One of the people I know who had the excessive foul tasting saliva for only about 2 years while the other one has unfortunately dealt with this for 14+ years.

Best wishes with everything!!!


Christine
SCC 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 smile
Re: Slobbering and odd taste in mouth [Re: Dizz_zzey] #199350
10-29-2019 06:10 PM
10-29-2019 06:10 PM
Joined: Mar 2014
Posts: 28
B
BJT Offline
Contributing Member (25+ posts)
BJT  Offline
Contributing Member (25+ posts)
B

Joined: Mar 2014
Posts: 28
I feel your pain. I had a bad case of Mucositis. Maybe that is what you are experiencing. I think it will get better a few months after your last treatment. Bruce.

Last edited by ChristineB; 10-30-2019 03:36 PM. Reason: Mucositis spelling

Bruce
Re: Slobbering and odd taste in mouth [Re: BJT] #199351
10-30-2019 08:39 AM
10-30-2019 08:39 AM
Joined: Aug 2018
Posts: 265
C
ConnieT Online
Gold Member (200+ posts)
ConnieT  Online
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 265
my husband tried something called miracle fruit. He googled it. He said it is truly helping with things tasting a little better. the only taste issue he has really complained about is how nothing tastes sweet though he eats entire pies in a day or so....maybe he just likes the idea of it and they are cream pies so they are smooth and go down easy? He is going to tell the ENT at his appointment this week about this miracle fruit.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.

Moderated by  Brian Hill 

Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,401
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,744
Newest Members
Dany, Burns, Pianokat08, Zoem995, ChrisCQ
12241 Registered Users
Forum Statistics
Forums23
Topics17,627
Posts194,460
Members12,241
Most Online306
Aug 21st, 2016
Powered by UBB.threads™ PHP Forum Software 7.7.1