Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#155430 10-01-2012 04:45 PM
Joined: Sep 2012
Posts: 51
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Sep 2012
Posts: 51
After completing his first week of treatment, my husband Paul started to get mouth sores today. Does anyone have suggests what to do for this. It's listed as one of the side effects but it doesn't say what to do about it.


Diane-wife to Paul, age 55
DX 9/17/12
HPV/SCC/BOT Stage 4a
Non-smoker/casual drinker
Otherwise healthy
9/24/12 Cisplatin, Taxotere,5-FU - 3x
12/3/12 Rad x 35/Carboplatin x 3
1/15/13 DVT upper thigh
Passed away 1/23/13
Jenkensmom #155433 10-01-2012 05:01 PM
Joined: Apr 2012
Posts: 47
"OCF across the pond"
Contributing Member (25+ posts)
Offline
"OCF across the pond"
Contributing Member (25+ posts)

Joined: Apr 2012
Posts: 47
This is the start of a variety of fairly unpleasant symptoms which seem to affect some people worse than others, get ready for levels of mouth pain and sore that are tough to ignore. Certain mouth washes can ease the discomfort usually after stinging like buggery on 1st application. stay away from a lot of over the counter ones that say mild they burn the mouth. I had to dilute one called difflam but it was a life safer, then I eased back as I was doing it too much. Luke warm water to rinse acid out of mouth often in the day helps.
Building up a little routine and sticking to it. Salt and bicarbonated soda much milder than the teaspoon to half a pint often quoted helps. Read past posts on this site, and be strong for your hubby it is a rough road but the light at the end is that its keeping you good for the long term.


21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
Jenkensmom #155434 10-01-2012 05:15 PM
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
He can rinse with peroxide and water mixed and also salt and water mixed. There is also something called Magic Mouthwash that works great for numbing things. He needs to begin some pain meds if he hasn't already. Lortab is a liquid that worked VERY well for Kevin, just before eating/drinking. For long term pain he had a fentynal patch. Don't wait until the pain is too much before he starts something.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Jenkensmom #155437 10-01-2012 05:45 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Mouth sores can be very painful. Its best to rinse several times per day (at least 4 times daily) with a mixture of 16 oz of warm water with 2 tsp baking soda and 2 tsp salt. If the salt burns too much cut it back or omit it. This concoction works to help neutralize the ph in your mouth while salt water is healing. It will help but unfortunately the mouth sores go right along with treatments.

Some members have had great success with Manuka honey. Not sure if this has been proven with any scientific studies yet but some patients here have been very happy with the results.


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
Jenkensmom #155458 10-01-2012 10:30 PM
Joined: Aug 2012
Posts: 5
Member
Offline
Member

Joined: Aug 2012
Posts: 5
MuGard can help prevent mouth sores. Here is the link to the website for this product. http://www.mugard.com/
We were able to receive help with receiving MuGard by talking to a very pleasant representative named Bonnie, please send me a PM if you would like the number.
MuGard is most effective if started early ... ideally with the very first radiation treatment. Try to get started on it right away. Three weeks ago my son completed 35-rads/6-cisplatin for SSC of left aryepiglottic fold and used MuGard from beginning of treatments. He did not get any mouth sores. His regimen was to eat then brush & floss then swish with baking soda/salt solution then coat the mouth with MuGard by moving it around all oral surfaces for at least a couple of minutes with each use. Wait at least one hour before eating or drinking again after using MuGard. This should be repeated every 3 to 4 hours while awake. Many doctors do not know about this product since it is quite new. Please help spread the word by seeking your doctor's approval to add this to your treatment. A prescription is required and can be facilitated via forms on the product website submitted through your doctor's office.

Last edited by ChristineB; 10-02-2012 04:50 AM. Reason: removed phone number
Jenkensmom #155462 10-02-2012 04:54 AM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
I dont know much about it, but its not on Quackwatch. I really hope it works!

Last edited by ChristineB; 10-02-2012 04:54 AM.

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
Jenkensmom #155474 10-02-2012 06:35 AM
Joined: May 2012
Posts: 162
Likes: 1
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: May 2012
Posts: 162
Likes: 1
By week 2, my husband had bad mouth sores, so we knew he needed to figure out the mouth washes, quickly. He found the decision of which of the many recommended mouthwash regimes to use one of the more perplexing decisions. What helped him make the decision was to break it down by purpose. Here's what he used, and in this order;

1. 1:3 hydrogen peroxide & water solution, to try to heal existing sores
2. Magic/Pink wash, for symptom relief
3. Mugard, preventative (he swalled some of this to coat throat too)
4. Caphasol Artifical Salivia, also preventative, to keep the mouth moist

Within one week of using this combination, he was down to one mouth sore, which he was able to "eat around" using viscious lidocaine dabbed on that one spot. He continued to use this throughout treatment, and the mouthsores never returned.

On a side note, Mugard is extremely expensive, $1300/mo if memory serves. If your insurance will not cover it, they will send it to you for free. U of Chicago started recommending it last spring after Rush & Northwestern reported great results with it. It tastes nasty, and it's "one more thing to do", but considering the results, it was worth it for my husband.


wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
ChristineB #155476 10-02-2012 06:55 AM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
MuGard does sound very promising. There is a Phase IV clinical trial being done to see if MuGard is as good as it's website claims: Mugard clinical trial
The clinical trial is well designed with a sham rinse to account for the placebo effect. The company claimed at a podium presentation on June 28th at the Multinational Association of Supportive Care in Cancer (MASCC) and the International Society of Oral Oncology (ISOO) on Supportive Care in Cancer conference in NYC that its interim analysis of preliminary data based on 70 oral cancer patients showed good results in pain, delay in onset of mucositis & weight maintenance. It would be wonderful if the final trial results show the same results.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Jenkensmom #155481 10-02-2012 07:55 AM
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
Wow, that would be amazing!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Jenkensmom #155491 10-02-2012 10:58 AM
Joined: Sep 2012
Posts: 51
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Sep 2012
Posts: 51
Thank you everyone for all the great advise. He's already lost 10 pounds in one week and its only been one week since his 1st chemo. This seems too early in the process to lose that much weight. I'm afraid if he can't swallow without pain he's going to lose way too much.


Diane-wife to Paul, age 55
DX 9/17/12
HPV/SCC/BOT Stage 4a
Non-smoker/casual drinker
Otherwise healthy
9/24/12 Cisplatin, Taxotere,5-FU - 3x
12/3/12 Rad x 35/Carboplatin x 3
1/15/13 DVT upper thigh
Passed away 1/23/13
Page 1 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
amndcllns01, Jina, VintageMel, rahul320, Sean916
13,104 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,927
Members13,104
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5