| Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2010 Posts: 71 | I finished 25 radiation treatments on 12/17 and am working on healing. Still have a spot on my tongue that isn't healed so I am still drinking most of my meals but when I have tried to eat I get little blisters (seem to be clear liquid?) on my cheeks by my gums, my lower front lip and on the upper back of my throat. They hurt but are mostly uncomfortable. Any ideas as to what is causing them? They go down within a couple hours and are pretty well gone by the next day but seem to come up every time I try to eat.
I did get about half a chicken leg, a few bites of mashed potatoes and a few spoonfuls of peas but after a little bit my mouth hurts and even the upper throat hurts like it is rubbed and then I realized there was a clear blister there!
Any ideas?
Michele in IL
Female - 53 no smoke/drink tongue Biopsy 8/2010 Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear Radiation started 11/2, ended 12/17 Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22. passed away 1/12/12
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | It takes a long time for mouth sores, especially on the tongue to heal. Just takes patience.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Michele,
I had the �water blister� after RT also. They did seem to pop up after eating and appeared on the areas of my mouth that received radiation. I believe my doctor said it was part of the healing process, but of course they did scare me when they appeared. Over time they appeared less frequently. I would certainly mention them to your doctor at your next visit.
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: 2013-2022 (ORN)
| | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | "OCF Canuck, across the pond" Senior Member (100+ posts) Joined: Jun 2010 Posts: 153 | Michelle,
Your description fits very well with my own experience following radiation/chemo. The clear "water blisters" initially appeared down low, sort of in front of my bottom canine teeth, and also up across the back of my mouth/throat, and also on the inside my cheeks, I think. I believe these are the result of blocked "secondary salivary glands", blocked because the skin of the inside of your mouth is damaged and healing. This also explains why they appear when you eat; because your body is trying to send saliva to your mouth. And yes, they go down after a while.
In my case, these kept appearing for quite some time, and I seem to recall that initially they didn't hurt much but later the ones at the back of my throat did tend to get sore, like a sore throat. Also, the ones at the back of my throat were the last to finally stop forming.
The good news is, now that it's been 8 months since my treatment, they don't form any longer and I had forgotten all about them! I know, that probably sounds like a long time, but the point is, they should eventually stop forming and you are NOT alone in having this experience. I ended up living on vanilla Ensure for quite a while.......nothing salty or acidic about that stuff.
For a long time I couldn't handle anything spicy, salty or at all acidic. Even tomatoes would set off those blisters. It was a big deal when I could first start to handle rare filet mignon cooked in teriyaki sauce. Then I was able to move on to fresh poached salmon, then scrambled eggs with cheddar cheese. Now I can eat pretty much anything (some things require a water chaser, as my primary salivary glands did get damaged by the radiation and my mouth still tends to be dry), although spicy foods still pose a challenge, but even that is finally improving and I can, carefully, manage some spicy things now.
Like you, I also had one spot on my tongue that was quite painful, possibly caused by metal fillings nearby focusing the radiation (although I don't quite buy that explanation). That resolved relatively quickly.
I also lost pretty much all of my sense of taste (but not smell), and this was more upsetting than I would have expected, and also contributed to difficulty keeping weight on. My ability to taste came back sort of in stages, and now is, I think, pretty much back to normal.
Keep asking questions. There are lots of people on here with experience that can be very reassuring.
-Seth
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014. Sadly has passed away, notified Jan 2015.
| | | | Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2010 Posts: 71 | Thanks Seth, I am glad to know that these are common after RT. I now remember I used to get them once in a while before the cancer was found. I usually push it against my tooth and pop the blister and then the feel better. But I can't do that with the ones in the back of my throat. Yes, they do hurt like a sore throat!
My sore spot on my tongue is close to a filling as well but I think my spot is where the stitches tore after surgery. They used alladerm (spelling?) and it tore away when I coughed...it healed but hasn't totally closed. It IS getting better tho so I am happy.
I do seem to have some/most taste back but dry mouth and blisters and chewing have made it difficult to eat too much so far. Ensure, chocolate milk, yogurt...going to try McDonald's french fries tomorrow tho!
Michele in IL
Female - 53 no smoke/drink tongue Biopsy 8/2010 Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear Radiation started 11/2, ended 12/17 Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22. passed away 1/12/12
| | | | 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 | Magic mouthwash will help you to numb your mouth long enough to eat. Chocolate milk always worked wonders for me, plus its high calorie too. Hang in there its always two steps forward and one step back for a few months after rads. Keep rinsing your mouth with the baking soda, salt and water mixture too. That should help too. Best wishes for continued improvements. 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 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | "OCF Canuck, across the pond" Senior Member (100+ posts) Joined: Jun 2010 Posts: 153 | Hi Michele, how goes it now?
-Seth
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014. Sadly has passed away, notified Jan 2015.
| | | | Joined: Feb 2011 Posts: 1 Member | Member Joined: Feb 2011 Posts: 1 | Hi Michelle, I too am having the exact same problem with the water filled blisters. Mostly on the roof of my mouth, uvula and by my lower molars. Makes eating so painful and difficult. My last radiation treatment was October 19, 2010. I'm hoping that it begins to lessen soon. It is so hard to try to gain weight when it is so painful to eat!! Good luck to you! | | | | Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2010 Posts: 71 | I finished 12/17 and when I chew/swallow dry and/or rough food it really bothers me! Mine are happening a little less but when they come I get a mouthful! I pop them by pushing my lip against my teeth and then they don't bother me. They only hurt when they are "full".
Michele in IL
Female - 53 no smoke/drink tongue Biopsy 8/2010 Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear Radiation started 11/2, ended 12/17 Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22. passed away 1/12/12
| | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | "OCF Canuck, across the pond" Senior Member (100+ posts) Joined: Jun 2010 Posts: 153 | Take heart! In my case, looking back at my notes, four months after the end of my radiation treatment I noted that my blisters were lessening. At five months I noted that I still got a sore throat from certain acidic foods but made no mention of the blisters.
I can say that 9 months after the end of my radiation treatment I had forgotten all about the clear "water" blisters. I'm sure that's hard to believe.....frankly I find it hard to believe that I had forgotten about them. Now that I've been reminded, I remember being very concerned indeed.
Mine were very similar to the description by dwnky; I had big ones below the inside of my lower lip opposite my lower canines, and little ones on the insides of my cheeks and across the back of my mouth and uvula. I believe these are "secondary" salivary glands trying to put saliva into your mouth in response to certain foods, but the skin on the inside of your mouth is damaged from the radiation and still healing.
It will get better. Maybe try avoiding any foods that are salty and/or acidic. I couldn't handle even tomatoes. By now I can eat almost anything. I still don't enjoy spicy food much (which is sad, since I used to be a heat freak......Tabasco on my pizza, hot mexican salsas, peri peri sauce), and my dry mouth, while improving, is still a challenge with bready foods. I still carry water with my most of the time, but I don't normally need it unless I'm exerting myself or eating certain foods.
I do find that the xylitol mints, such as Theramints, are a great help when out and about, and they only take up a little room in my pocket. Of course, one should avoid normal sugar if you have dry mouth, but the xylitol is supposed to not encourage the cavity-forming bacteria, according to my dentists.
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014. Sadly has passed away, notified Jan 2015.
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