#99888 07-21-2009 11:01 AM | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | I know it's a very individual thing, so I'm not even sure I'll be able to put my mind at ease at all, but...
I am 10 weeks post-tx. My mouth healed for the most part, except for a few spots here and there. My flap hurts every now and then, and my flap, mouth floor under the flap and gums near the flap get this very strong burning sensation when I eat. Drinking water is OK most of the time, except for when I wake up in the middle of the night with super-dry mouth. Then it hurts to the point that I need percoset. I take no more than 1-2 a day though. My radiation oncologist was happy with the way my mouth looked 4 weeks ago. My H&N surgeon was happy with the way it looked last week. But it hurts a lot. My gums on the right side (where the tumor was) are puffy, and I don't know whether it's becasue there's no saliva there and between that and radiation it hadn't had a chance to heal completely and it's all normal, or it's something I need to be more concerned about.
My H&N surgeon said that burning sensation is normal and that if it burns when I eat, I should use magic mouthwash. Pain, however, he would be more concerned about. Isn't there a fine line between burning and pain? How about burning pain?
I have a scan in a week, so I'm pretty sure that there will be clarification then, but I'm worried sick and paranoid and don't know whether I should call the doctor and have them see me, or just wait another week for a pet scan and then another for oncologist appointment and the report...
I searched and searched this forum, and it seems some people have lingering pain and healing that lasts many many months. It's really hard not to be driving oneself mad with worry and wonder whether I should call the doctor or wait...
What was your healing process like? How long did it take?
Last edited by Jenka; 07-21-2009 11:02 AM.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Jenka , it's all part of our misery from the after affects of the surgery.Yes sometime it feels like burning pain and sometime not. It's been LONG TIME FOR ME, BUT i LIVE WITH IT DAILY AND THE MUCOUS CAN WORRY YOU TOO. Sorry about the caps LOL I am no typist
The best thing I know to tell you is to try and occupy your mind when this stuff starts its acting up. Get the Magic Mouth Wash because it does help some.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Jenka, sorry you are still going thru the after effects stage. That can go on for quite a long time. As Jim mentioned, magic mouthwash before eating will help alot. There are several versions of it. Mine was made of benedryl, lidocain and malox. It truly is a miracle. I went thru the same problems with the very sore burnign mouth when I would try to eat. What got me thru was yogurt and pudding. It was cold and didnt burn my mouth. Its unbelievable what foods are acidy and will hurt your hyper-sensitive mouth now. Try also avoiding salt and any spices at least for now, those will burn too. Even chicken noodle soup will burn, try instead cream soups like cream of mushroom or potato. I made a big list of easy foods, its under the food/peg tube heading. Some of those things I wasnt able to eat til I was at least 4 months after tx. Wishing you a speedy recovery 
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: Jun 2009 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 64 | Can someone tell me what the magic mouth wash is?
Pat
Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
| | | | | 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 |
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2009 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 64 | Thanks for the sites above David that really helps. I just didn't expect it to be this way. Not really sure what I was suppose to expect. I didn't do enough research I guess.
Pat
Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Pat,
This site has everything one needs to know about our cancer. Anytime you want to find out about something, go to the bottom of the Patient Forum page and hit the SEARCH tab. Really great stuff on this site.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | I just made an amazing discovery. I took magic mouthwash about 30-40 min before a meal, and it made ton of difference! The bottle said 15 min before meal, and then you're just eating with numbed mouthand taste buds, but if you do it 30-40 min before, you can actually eat like a human being! I haven't taken it in a long time because I hated it so much, but I maygrow to love it.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Jenka,
You're doing great this soon after tx's!!..It will take a while, I finished tx 11-4-2008 and I still have some trauma in my mouth. My RO said, "A good year before the trauma is gone and it could take up to 2 plus years to heal from tx, so, be patient".
Just a couple of weeks ago I was able to add pepper to my meal and this week I was able to eat some spicy food!!
You're doing awesome!
Btw, sounds a little soon for any scans and such?...So, I wouldn't get to worked up about that...
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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