Everyone here has said progress here comes in two steps forward and one step back, in fits and starts, and I'm just at the point whre I need to share my frustration with people who have been there.

First, I am still having bad mouth pain. I don't know if it's worse--it feels worse but it may be the effectiveness of the pain killers is getting to be less because I've adapted to them. It also seems like I have some new and painful little mucositis sores--ones the size of a pimple that just are there on my tongue or cheek lining hurting like all get out anytime ANYTHING gets in my mouth (water, tea, even in the last day saline solution).

I didn't post about this because I was kind of embarrassed but last week I suddenly had some really strong pain in my throat when I swallowed that came out of the blue and I ended up calling my ENT becaue the pain was so sudden and so sharp and so new and in a spot where I couldn't look in my mouth and I was afraid it was something serious like a sign of a recurrence (it was also right under the spot in my neck that has been swollen from rad). Anyway, it was the first time (and I'd like to say the last but probably not) that I'd called him panicky about a symptom and he was good about squeezing me in at the end of the day the same day I called and examining my throat manually very carefully as well as peering down it when I said AH. He told me the mucous lining of my throat looked like it was "peeling" and that he thought it was quite possible that could cause some sudden new sore spot that had nothing to do with new cancer--that there was nothing he could feel or see that would lead him to beleive it was a recurrence. He also went out of his way to try to find me soem new numbing spray or gel that I could use that would get at the sore spots. I was glad that he was so responsive and didn't seem to mind too much that I was paicked.

But anyway, since then, the throat pain has gone away but I have a new spot in my left cheek that was intensely painful yesterday and one today under my right tongue. I'm getting that this may be a new mucositis phase that is NOT welcome. How am I ever going to be able to try eating things when right now even my own saline and soda standby is painful to use at times?

And then there's the puking from gobs of mucous. I lknow I said I was all done with that--I thought I was until today when this morning I vomited TWICE (once right after waking--always a nice way to start the day) or, actually ahd the heaves twice both times because of gobs of mucous tht eventually I managed to spit out. Yuck. And of course, this happened on the first day of a visit from my brother--who is being very nice and understanding about it all--but I ahd hoped I'd be well enough and have energy enough to go out and show him around some (he's never visited me here before) and instead my husband did that while i was in bed all morning spitting, trying to gargle and stop the bad mouth pains (nothing worked) and fighting nausea and hot flashes (these are from the Tamoxifen I was recently prescribed for my breast cancer possibly abbetted by the saligen and they hit full fore for the first time this morning).

Yesterday, we drove to an airport two hours away (because my brother ahd gotten a really good fare there) to pick my brother up and then my husband and brother wanted to stop to eat something at Boston Market--which has lots of side dishes that are GREAT mushy food that it seems like I should be able to eat--pureed squash, creamed spinsch, mac and cheese, and I tried a little bit of squash and almost choked--had to spit it out because it seemed so inedible--because I had NO saliva and it stuck to my teeth and the roof of my mouth! How does one eat things with no saliva (and when can I expect the they benefits of IMRT and amifostine might actually show up and give me some saliva?)? Is it just that I need lots of practice in the safety of my own house with getting stuff unstuck and down my throat? I'm starting to wodner if eating will ever be pleasurable and not an ordeal at best.

Whew. That was a good long whine--or vent--or whatever. Thanks for being there to those of you who have ahd the energy to read all the way to here.

post script--my last rad treatment was seven weeks ago. This means it has been longer SINCE rad than the time it took to go through rad.

I'm just feeling like somehow I'm never going to get well, never going to be able to eat again, will always have mouth pain, etc. At least when I let myself go there. I am trying to distract myself with videos and friends visiting but when my health gets in the way of even enjoying that it makes it hard.

Hi Nelie! I do feel for you. Been there done that! I know, I know, everyone says be patient & I can only tell you that too. Diversion works pretty well & it sounds like you're doing that. Also, it will take alot of trial & error to figure out what to eat, especially in public. My rad ended the end of June last year & I remember going to the state fair mid September. I ate corndogs with gobs of mustard & drinks of milk to get them down! My mistake was the scone I tried to eat without first getting some milk! You got the scones from one line & the milk from another & I got ahead of myself & took a huge bite of that warm scone with butter & rasberry jam thinking I'd have time to get milk! I was wrong. There was a guy ahead of us that couldn't make up his mind & I was swallowing & swallowing to no avail! I was choking! Finally I ran over to a garbage can & had to reach in with 2 fingers & scrape that wad of dough out right there in front of hundreds of people! In reality no one probably saw what I did but at the time I felt pretty embarrassed! You just figure it out! So I do not eat biscuits anytime without lots of milk or something & even then it's almost more hassle than it's worth! You will look back in weeks & remember when things we're a little worse oh so vividly. May your time through this go quickly! Erik

By the way, Nelie my spit is still improving drop by drop even now. When I wake up most mornings now, the inside of my lips are moist & even a little drool! Ah, the simple things, drool in the morning! My tongue, cheeks, teeth & upper throat are pretty dry though. A couple sips of water & straight to the coffee pot to make very strong, rich coffee with cream & sugar seem to make me salivate! Wendy's chili with cheese, onions, & a couple of sour cream tubes mixed in goes down real well & is delicious & nutritious! Erik

God, I'd love to think I could even handle coffee. The thing is everything HURTS if it has any acid in it --I'd imagine coffee and Wendy's chili would be among those things. Iced white tea (very mild tasting) seems to be OK most of teh time buyt I can't find much else that works. Did you have problems with pain? Is it just that my tongue needs to adapt to having these things brushing it up again? Or will it always hurt?

I love you Nellie.

Erik, I'm still dealing with having to spit food out occasionally. It sort of made me laugh about the scone incident. Since food suddenly has taste again for me, I don't often wait to dive in before the waitstaff brings either water or some other beverage. This is horrible when at a Mexican place and they put the basket of chips and salsa on the table. Old habits die hard. With three teenagers with me and a hungry man, sometimes it's like you just automatically reach for the nibblies before they disappear completely. This is horrible when I realize I have some hot stuff and crunchy dry stuff in my mouth and I DESPERATELY need a drink.

My new mantra should be "Do not put anything in your mouth unless you have a drink ready"

Jen

LOL! I can see that grabbing fast would become a habit with three teenagers and a husband eating with you! I had a couple of incidents like that when I was recovering from the glossectomy but before radiation. Honestly, I'd love to get back to that point again.

I too am having a hard time with the eating and am almost 2 months post rad tx's. still have some stinging sensations on the tounge where the rad tx was concentrated. Seems like ground beef would be the easiest but it is like sand paper. Vanilla pudding was the first thing i ate that didnt hurt one bit. but getting tired of mushy foods and having troubles with my dentist on getting my false teeth to fit correctly and told him to redo the whole damn set that i paid 2 grand for and have no use for them since they dont fit right. I was so mad when i went to get the final set and couldnt even close my mouth cause the bite was so far off. Have been fighting these for 2 months now. Its really holding me back from trying other foodws.
I too have a problem with some foods sticking in my throat and chocking. I ate some cold cereal the other day and i thought it all went down fine then 2 hours latter i felt a cough come on and out popped 2 whole pieces of cereal that was stuck in my throat the whole time and never knew it. That scared the dickens out of me. I dont try to eat unless i have anouther adult in the room just in case. But one plus thing is all these shakes im drinking are still tasting as good as they allways have :-)

Nelie and Bob,

I hate to be the one that dredges up the old rule of thumb that's often used here -- the one that says you need a month of recovery time for each week of radiation. It may not actually be that bad, but I know it can feel like a horrendously slow process when you want to see some tangible improvement.

In the few months that followed radiation, I know I had quite a few embarrassing restaurant moments when I thought I was geared up to handle a particular dish and found out in mid-mouthful that it wasn't meant to be. There were times when it seemed as though my taste buds would never be "normal" again and I wondered if I could ever again enjoy any social event that involved food. (I also thought I would always wake up in the morning feeling as though I had been chewing on sawdust all night, but these days I wake up drooling on the pillow -- even though I lost some salivary glands, had XRT and didn't have amifostine.)

It DOES get better -- please don't give up hope.

Cathy

Hi Nelie, Jerry is 10 weeks out from radiation now. He was actually able to eat food up through the end of week 4 of radiation and then switched to shakes and diced peaches. He is still doing that at 10 weeks out. Tonight he is going to try non-pureed soup so we'll see how that goes. He cites 3 things that he feels together are causing him to be unable to eat real food: 1) the non-healing spot that will be treated with hyperbaric oxygen starting next week, 2) the swelling from the neck dissection ; he is putting off the lymphatic neck massage until he is done with the hyperbaric oxygen treatment, and 3) dry mouth - his seems to vary, ranging from mild to moderate. These three, along with shoulder pain/weakness from the neck dissection seem to be his big issues at this point. He was seeing a PT right after surgery re: the shoulder/neck pain weakness and daily continues to do the exercises he learned. He never used the pain patch I've seen other people write about, but he did use acupunture along with 2 tsp Roxicet or Oxycodon? 4 times a day (and still does). He is also pretty fatigued.

His surgeon keeps telling him that healing from this is going to be a marathon, not a sprint.

I'm very encouraged in hearing others talk about having pretty normal lives eventually.

It will get better - hang in there.

Connie

Nelie, We are pulling for you. John is 17 days post rad tx. and not wanting anything but water, coke and maybe tea by mouth yet. I think it's gonna be a long haul and not too much fun. Hang in there. Amy

Bob,

Boy can I relate to the cereal getting stuck somewhere then reappearing. I have tried to mainly take my meds through the PEG tube still but I have two small Tamoxifen pills to take in the morning and was thinking it was working ok to take those orally until recently(I can't do large pills at all).

Then a few days ago, I was rinsing out my mouth before bed and spit out somehting roundish and white that I think was the remains of one of the tamoxifen pills! I have a couple of little places that are like sandpaper-dry pockets on the roof of my mouth and I think it had been stuck and hiding there. Since my tongue is numb on one side I wouldn't have felt it. Today the mushy remains of one of the tamoxifen pills rolled back into the feeling part of my mouth about 5 minutes after I thought I'd swallowed both! They are the type of pill that doesn't have a coating to prevent them from dissolving a little right at the start. I think they get just wet enough to get sticky then go up to that sandpaper spot and stick. I've also had it happen with a pill in my throat. It is scary.

Thanks for all the encouragement folks. I'm feeling more optimistic at the end of the day today because I haven't thrown up recently. It's amazing how that happening affects my entire mood and belief system and outlook! It also amazes me how the simple reading of words of encouragement from someone who has been there and done that, even if I've read them many times before, makes a huge difference. That last remark is intended especially for you Cathy and Erik. Sometimes I just need to "hear"(read) the same words of encouragement yet again. Thank you.

Nelie, I just watched John take a pill [ he has some of the same swallowing issues mentioned above.] He says that if he is careful to get the pill exactly in the middle crease of his tongue, he can manage to get it down. If something slides to one side or the other-he's in trouble. Maybe tge peg is best for meds at the present time. Amy

I have had trouble swallowing pills and my husband told me to take a sip of water and hold the H2O it in my mouth. I place the pill in that small pool of water and it doesn't stick to the roof of my mouth nor choke me nearly to death.

I wanted to ask some of you who are eating better, why can I not eat spicy, peppered foods or cokes? It stings and burns so bad. I do not have any open wounds. The docs says give it 6 months and then he will say give it 1-2 years. Will I ever be able to enjoy those types of food again? Mary

Mary,

I think you'll find a wide range of experiences with spicy foods from people who have been out of treatment awhile. It's probably a combination of: 1) how much salivary function they were able to get back over time, and 2) what areas of their mouth received the heaviest radiation. For me, it was a matter of several months before I could even tolerate bland food again! (Some of my salivary glands were removed during surgery -- also I had XRT, as IMRT wasn't even around then.) It was probably a couple of years before I got back to sampling and dealing with things that were a bit more spicy. Today -- 16 years out -- I still stay away from the hottest types of curries and salsas. The medium ones are about all I can handle.

Cathy

Mary, I am absolutely amazed now at what I can eat and drink sometimes. Of course, it might be good one day and intolerable the next. Right now, I'm sipping a coke from having taken the kids to lunch at Sonic. I didn't think I'd ever be able to drink a soda again. One thing I've noticed that helps is when eating out, the coke usually has ice in it. Anymore, I put ice cubes in it at home and it helps me to sip them down. As for spicy foods--my range of ability to eat them isn't what it was, but I can handle mild spicy stuff. When I go do my Mexican craving, I always order the shredded beef chimichanga smothered with MILD sauce.

I've also been a huge fan of buffets. There's only a few of them in town, but there's usually something in the food line that I can eat, even if it is a big batch of mashed potatoes and gravy (not to mention most buffets have these wonderful soft serve ice cream machines) Anyway, I like going thru the line and if some food isn't working for me, I get another plate and try another selection of foods.

Ironically, since I've been eating out alot lately (I either drag a kid with me or go by myself) almost all the places I visit are viewing me as a "regular" Most of the people who wait on me know I'm recovering from cancer treatment and have patience with my pile of plates or multiple dishes of ice cream.

Now, I've been hitting my nearest Starbucks quite often. Yesterday, I went twice. They aren't use to hearing someone say "I want the maximum calories in that thing" and now they know because I've explained to them. I think the barrista that whipped up my carmel frappacino yesterday put in extra squirts of carmel and had the whipped cream way above the dome cover.

Every week now, I seem to feel an improvement on eating. Although I envy the people I see in the buffet lines that can eat HUGE piles of food. Right now I have to work on getting more volume.

Jen

Cathy it is so good to see a 16 year survivor!!! Wonderful!!!

I love reading the comments on here. For so long I thought I was the only person who experienced such things as the choking on a pill, mouth gunk, and not eating big volumes.

Guess what I did today? I drank a diet root beer. The artificial sweetner was strong enough to knock a horse down but I was able to drink it with minimal burning but I know tomorrow may be another day. (Anything extremely cold such as ice cream and iced drinks still hurt.) AND I make homemade salsa for my family and I even tried it. That was not an exciting moment though. LOL

Nelie, I lived on chicken noodle soup for a while and the warm salty broth felt really good. Maybe you should try it. It didn't require any effort to swallow nor did it rub "blisters" on the roof of my mouth.
Mary

thanks for the suggestion, Mary. I will try it. So far, nothing but (some) iced tea and--one day--half and half creamer all by itself--has been in the category of "doesn't hurt to drink/eat".

My brother has been visiting me from the West Coast and last night we went to the Moosewood restaurant. Yes, the one that was the basis for all the cookbooks. I love the Moosewood but I went figuring probably all I'd be able to have was chamomile iced tea. But they had this mushroom bisque soup on the menu that sounded so good I thought I'd try a cup. Even just the creamy part of it, without any big chunks of mushroom hurt my mouth all over. Sigh.

And then we had an overworked waitress who had an assistant she was training bring the chamomile iced tea. Usually they just bring you hot water in a cup, the tea bag to steep and then another glass full of ice to pour it into. This clueless college-student assistant waitress bring us (my brother ordered iced tea too) the teabag on a saucer and a teacup full of ice water. No hot water for steeping. How hard can it be to get that right? Oh well. They didn't charge us. But the long and the sort of it is I sat there and enjoyed vicariously what my hubby and brother were eating and had nothing I could eat or even drink.

I'm going to keep trying, though, I know there are good and bad days and it has to just be a matter of time.

Just an update. I'm STILL having mouth pain problems bad enough to make it seem impossible to eat anything, although I keep trying things.

Fact is, I have some days where my thraot and tongue are so sore, it's painful even to swallow my iced tea--which normally I can do. I have had a few days lately where I've had a lot of phelgm too--like steps backward. And I'm experiencing sme trismus-not severe yet but I can tell it's getting worse--sometimes in the morning I can barely open my mouth wide enough to accomodate two fingers and I can feel it hurting at the joint!

I continue to look in my mouth and I still have some white pacthes that are pretty clearly NOT thrush but mucositis sores--some of these have healed quite a bit but some still have a ways to go. I no longer am at the stage of mucositis where I have a white coating over my whole tongue but I have spots where there is still a white coating--mostly these are on parts of the tongue that I think are rubbing against the edges of my teeth and may be taking longer to heal because of it. There's also a spot on top whjere I can feel lots of little raised bumps--I think that may have already been like that before rad though.

Under my tongue on the right side--kind of opposite where I had te tumor on the left side, I also have a painful spot where I think it's rubbing on a tooth and sometimes it gives quite sharp pains when I drink tea or try other food. I'm a little worried about that one because it is opposite where the tumor started last time--but just 2-3 weeks ag, my ENT said there was nothing that looked like cancer.

Then WHY is it healing so SLOWLY? Its been 9 weeks since the end of rad and it's obvious I'm behind where many other people are in terms of being able to eat things and having pain. Should I go back to the ENT again before the next scheduled appt. which is 3 weeks away? I'm a little panicked.

I finished radiation July 10th of 2003 and at Thanksgiving, 4 1/2 months later, I was able to get down a bit of mashed potatoe and gravy and a small piece of turkey. At your stage of the game, I was still using my tube for total nutrition and I still had tons of sores in my mouth, especially on my tongue. I STILL have two sore spots on my tongue that I think will remain sore the rest of my life. My teeth give me enormous problems with rubbing on my tongue and creating sore spots.
Always tell your doctor anything that changes, but reading your post it sounds like you are doing great and pretty much on track.
Minnie

Minnie, I'm really sleepy writing this so hopefully I can make it not too rambling but I'm just wondering since you still have these sore spots, how does that affect your eating and speaking? This is of real drastic importance to me wince I'm going back to work teaching and training part time in a couple of weeks and, although I've arranged for one class to be online, I still can't imagine getting through an hour and 15 minute class, even with lots of student interaction in there, without being in agony by the end.

Today a friend came to visit and we talked for about half an hour (and she was speaking as much as or more than I was) before my tongue, where it rubs against this one tooth, was so sore that the pain was very intense. Later my brother called and I had to ask him to email me instead, even though I really wanted to speak to him, because I was just in too much pain on that spot to speak easily.

I assume eventually I can get that tooth worked on somehow to be less jagged right there but I don't know what to do in the meantime. How do you currently deal with mouth pain? Do you still have to take prescription painkillers for it?

The other spot that causes me lots of pain, especially at night, is the roof of my mouth where it is kind of domed right behind my front teeth. The tissue there seems to have a lot of ridges on it, and has NO moisture to it at times and the part of my tongue that rests against that seems to also get painful and irritated by the contact--kind of like it is resting against velcro or soemthing. Has anyone else experienced this?

Anyway, I'd appreciate any and all coping advice...

Nelie

Nelie,

I had something similar happen a couple of months after I finished my treatment. I was scheduled to teach part of a training session (I think it was a 1-hour segment) on a topic that I had taught numerous times before, so I was thinking it would be just like all the other times. For some foolish reason, I didn't even have a water bottle with me! After about 20 minutes, my mouth was toast, and I had to run out and grab some water and try to regroup to deal with the extreme dryness and irritation. Even though it helped a bit to get some hydration at that point, I ultimately had to shorten my part of the session because I couldn't make it the full hour.

It's good that you will have some student interaction in your class -- I'd suggest that you try whatever you need to do to maximize that part of it while you're getting back your strength. Also, is there anyone who could be some sort of teaching assistant with you for some time to help with the lecture portion?

Cathy

Nelie,

This is Barb, the dental hygienist, oral cancer survivor (from Clarks Summit). The roof of your mouth is probably getting so sore at night because you are breathing through your mouth. You could try putting a coating of Vaseline on that tissue, which would also maybe make the tip of your tongue feel better too. My tongue also gets sore on the side where I had my glossectomy, but I wear a night guard when I sleep, which keeps my upper and lower teeth separated and so my tongue kind of goes in between them instead of rubbing against them and it has helped a lot. I speak all day long for my job too and there were days in the beginning when my tongue was very sore, but now it usually feels okay. It takes a while, but you will feel better. I was impatient and I didn't belive I would ever feel better again, but I do. I didn't have radiation and it still took a long time for my tongue to settle down.

Barb

Hi Nelie,
At first I was in alot of pain from these sores. I couldn't talk for more then 30 minutes or so then it became to painful. I went and had one of the teeth filed a bit and that helped, but I'm thinking of having the tooth removed to take the problem away. Eventually, your tongue will kind of toughen up where it's being rubbed, almost like a callous. Don't let the area spook you if it changes color and texture. Show it to your doctor of course but the area will change in looks and feel. My tongue is still sore if I talk alot so I try to pace myself. I am also guilty of eating candy alot which may contribute to my mouth being sore, not sure on that one.
I found rinsing my mouth with salt water a few times a day worked wonders and also Biotene mouthwash is awesome. I keep some in my purse and use it nonstop, not so much for dry mouth as it relieves the soreness in my mouth.
Hope this helps,
Minnie

You may wish to see about getting an acrylic overlay for the rough tooth -- I had this done recently for a molar that had an old filling and a sharp edge which rubbed the side of my tongue, making it sore, when I spoke (and I wasn't even recovering from radiation!). The dentist removed the old filling and made a lovely impossible-to-tell-from-rest-of-tooth overlay (not a crown, no metal) that restored the external appearance of the tooth (and its smooth contours). It is glued on and so far (months and months) has not budged.

Gail

Nelie,

There shouldn't be any reason why a dentist can't do minimal treatment for you, such as just smoothing off the rough edge of the broken tooth.
Have you checked this out? You could go back for a more permanent solution when it is the appropriate time. You shouldn't suffer like this.

I would suggest you get this taken care of ASAP. Constantly irritating the tongue in that area can be harmful.

Jerry

Thank you all for the advice and support. I am really feeling not very ready to go back to work. Partly because of the mouthpain, partly because I'm still taking painkillers and on the tube for all my nutrition! Thank goodness it's going to be a little less than full time because of the 2 banked overload classes I had that i redeemed for a lower teaching load. Anyway, I don't have to actually be in the classroom for almost two weeks but I have to be there and participate in a bunch of meetings starting tommorrow so we'll see how it goes.

Minnie, I used the Biotene before I had radiation and found it very helpful when my mouth would get sore then but actually i find Biotene mouthwash stings my mouth (as does almost everything except water with baking soda and salt and sweetened tea) these days (I still try to use it a couple of times a day though, unless the mouth pain is really bad).

Barb, I put the biotene oral balance gel on the roof of my mouth at night before I go to sleep and it does help a little with the pain at night. I probably need to do that more during the day too. Are those kind of hard little ridges and valleys in the tissue there normal? I'm not sure I'd know if my mouth was like that before all this, though I know I can feel them with the tip of my tongue in a more distinct way now so I think they must have gotten more ridge-y.

As for the suggestions about going to the dentist, I had been thinking I should wait until my mouth was less sore before seeing the dentist but I think I need to see him soon anyway (it's been two months since the end of rad) because I need to get a high-fluoride toothpaste until it hurts less to use those trays. I tried to call him Thursday but got his office too late and then the office is closed Friday. But I'm going to be on the phone first thing Monday peading for him to get me in ASAP.

The thing is the part of my teeth that rubs against teh sore spot on the tongue isn't so jagged that by itself it would cause major irritation I don't think. But my tongue was swollen and sensitive from rad and so it rubbed more. It's also right next to one of the teeth I have missing and once I get a bridge put in there it may be a moot point since I think my tongue kind of gets pushed out more because of that gap then gets irritated by the tooth next to it. Finally, this is aggravted even more by another problem I'm still having which is I sometimes (on average every other day I'd say) get the dry heaves in the morning. I'm almost positive this is ebcause of some nasty-tasting phlegm that accumulates in my throatn at night gets very dried out and sticky and then, because it is near that part of the throat that triggers my (sensitive) gag reflex, I get these very strong heaves shortly after I wake up in the AM .

The heaves usually don't last long but they are strong and push my tongue against my teeth, which I know aggravates the soreness there. I am trying to learn how to control this heaving reaction, including drinking some fliuds overnight in hopes that will help, but I'm not having much success so far! Has anyone else had this kind of problem?

How long can I stay on the tube, without eating anything and drinking almost nothing, without causing permanent damage to my chances of ever getting back to normal? I am getting worried about that too. I saw my rad oncologist (the one from Roswell Park) Wednesday and he did an exam that was thorough enough to reassure me that none of this is probably a sign of recurrence (and of course my ENT said teh same thing abotu three-four weeks ago) and did say that it's not too unusual to still be having mouth problems two months after rad but I know he ahd hoped I'd find I could eat something by now.

Nelie,

As far as timeline, I am just a bit behind Minnie, although I did not have a glossectomy. My throat hurts every morning for a while when I first wake. I go through bouts of my mouth hurting and if I drink a soda, my entire mouth and throat hurts the next day until I swish for a couple of days with Nystatin. I battled thrush for many months and it caused sores in my mouth and throat that were really painful, even swallowing water, which took me almost 6 months to tolerate, by the way. I choked when I tried to swallow water so I just drank a lot of milk.

Sometime around February, about 4 months post treatment, everything changed and I even fight the teenagers for the chips and salsa now . I grew some jalapenos last summer and either the massive rain we got or something made them so hot that when I tried one, I had to reach for the magic mouthwash for about an hour to ease the pain. I still have 3 jars left a year later !

I eat everything now and especially love tabasco on my fried chicken again. I never get more than an arm's distance from my water bottle and try to go for periods without it but can still only go about 5 minutes without a swig or my throat gets a little painful.

It sounds like you are on track for where you are. It took me about 10-12 weeks for the brown stringy goo to mellow out. I used to tell people to imagine Crystal Gayle singing..."Don't it make your brown goo clear..." When it turned clear, it was soon gone. The vomitting stopped shortly after that. I also thought Boston Market would be pretty neutral but I puked up the squash even, after it bitterly burned my throat while I ate it. Even mashed potatoes burned for months.

Hang in there.

Ed

Thnaks all,

I have a question about thrush and treatment for thrush. First of all, I am having some VERY bad mouth pain at night. Mainly in those same two spots: the right side of my tongue, which may be aggravated by rubbing against a rough tooth edge there, and the front roof of my mouth which feels completely dried out at night and filled with bumps and ridges. The pain is so bad that even taking 15 mg of oxydose (which I only do for breakthrough pain, otherwise it's 5 or 10), I was woken up by it several times. I am thunking this pain must partly be from thrush, unless my docs are wrong and its a recurrence of cancer--which I certainly hope is not the case and is statistically unlikely.

All I have ever been given to treat thrush is a magic mouthwash with nystatin in it. I guess that's not quite true--I did get diflucan when I was in the hospital wuth an infection right after rad was over, but just to take during the time I was being treated with antibiotics. So that ended once I was out of the hospital.

I'm supposed to do the magic mouthwash 4 times a day and I have a terrible time rememebring to do it--mainly because I hate the taste of it and it is also often very painful when I swish it around. Is there some reason why I shouldn't get a prescription for diflucan or some other anti-thrush pill (or, in my case, I guess I'd need a liquid for the tube) and see if that doesn't clear up[ a lot of this pain? If it is just pain from thursh that is never really fully cured that is making it impossible to eat, I'd like to know that and I am learning from experience that the magic mouthwash just isn't going to do it for me!

But the docs seem very reluctant to prescribe this. Is that because of bad side effects? Could my dentist prescribe it (maybe I'll ask him)?

By the way my first (half) day at work went alright--great in some respects, hard in others. I loved being back with my wonderful colleagues and was involved in doing something I really enjoy yesterday.

But it really brought home to me how weak I am compared to my normal energy level still--there is a huge long two story staircase I go up to get to my office and I headed up it carrying a bunch of stuff (laptop, briefcase with a bunch of books inside, and a huge beach bag with all my mouth-care stuff--saline rinse, kleenex, tube and bottles of water for feeding, etc.) and halfway up those stairs I realized it was going to be like climbing a mountain to get to the top! I used to charge up those stairs lugging all sorts of stuff before all this started. When I got to the top I had to sit down and rest before heading down the hall to my office.

Also of course I had to just get over my inhibitions about spitting out gobs of gunk into kleenex every so often while sitting in this meeting. I did manage to do that eventually.

Today I'm going in for the afternoon again instead of attemtping the whole day--in part because I got so little sleep last night because of mouth pain. I realy wish the pain, at least, would get to be not so life-disrupting (I also am relying on people giving me rides to work and home again because the oxydose makes me a little too drowsy to probably be a safe driver and I can't just get by on Tylenol--mouth pain is too bad).

Nellie,
I can understand what you are going through with your mouth pain. Last week I finally felt that I was able to try to eat some food. I have been on tube since 2nd week of radiation that started March 8th. Last treatment was sometime in May. I'm not good on dates plus with all the meds I was on and everything I went through I was totally oout of it. I craved food so bad that I think I rushed into eating foods I shouldn't have and since last thursday I am back on the tube.

I got a sore way in the back of my throat and my tongue has started feeling funky again. It seems like you have to really be on desparate needs to get a doctor to precribe anything. I finally got some more of the magic mouthwash about a month ago. I brush my teeth as much as I can to help get rid of the gook in my mouth.

My sister thought that the salt in the salt & soda rinse helps get rid of mucus so I made the solution stronger so I also swish with this. I have a very hard time swallowing water. If feel as if when you go under water in a pool and get water in your air pipe and choke.

I found that by going to work it helped make me stronger. I was so weak from all the weight loss (50 lbs) that everyone was concerned. Since my husband and I own the business if I felt tired I could lay down which I did a lot at first. I don't get tired as much as I first did. But by the end of the week I am ready to go to bed. I know I need to take it easy and not to do so much but it is hard when

Hi Terry, Thanks for the synpathy. It does sound like you and I are in similar places. I have a hard time swallowing water too--but that's because water feels like it burns some spots in my mouth. But then I also do have that pain on swallowing as well.

After I posted those posts yesterday, I did a little reading up on thrush elsewhere on the web (tried to find reputable sources such as webmd) and read in several places that basically nystatin liquid, swished and swallowed, is the "gold standard" for the treatment of oral thrush.

So I reluctantly have been making myself do the magic mouthwash more often again. I told my husband to get on my case about it because remembering to do any med four times a day is hard for me--I have all sorts of notes reminding myself about taking Tamoxifen each day too--and I only have to do that once (two pills, ground up and put through the tube at once)!

As for getting people to help carry things--you're right. I'm just not used to having to do that. Also there is an elevator I could have used in my building but it never occured to me (until I was halfway up the long flight of stairs. It's only a two story building though the second floow is actually, in height, more like a floor and 1/2 to two floors above the first for a variety of reasons.)

Terry, I don't have kids (not by choice but by chance) and I think it must be both harder and easier to go through this when you have kids to take care of. I'm sure you're less able to take it esay when you should--on the other hand, I'm sure they keep you going at times. I do have a wonderful husband who keeps me going though, and I really enjoy my job--it's something that invovles really good work where I get to chnage people's lives for the better in all sorts of ways and I have great colleagues.

Now if I could just find some food I could eat that isn'tthrough the tube and deal with this mouth pain! I had more of the really intense sharp pain in the early norning hours last night. Because my tongue is kind of sore, my husband is coming home around lunch hour and will help me call the ENT to see if maybe he will look at it one more time. I don't know if there's anything he can do.

The other thing I'm worried about is I'm scheduled for surgery to remove my port Friday. I know this is outpatient surgery but when they inserted it they used general anesthetic which I think means they will want to put a tube down my throat which I *really* don't want right now in terms of dealing with the mouth pain. I have to call and find out about that.

Nelie,
I saw my doctor (family doctor) who used to work in oncology today. I made the appointment to discuss my anxiety issues plus to ask some questions I had. I asked her about my throat being sore and she said that it just takes time and it takes longer for others. Like some people would be back on regular food one month after treatment and some take longer. I asked even 6 months and she said some even longer.
But I will make it she said it just takes time and the radiation and chemo really put our bodies through a lot.

I was being concerned because I get these bumps on my body that do not want to heal and she said that it is because of what my body has been through and my immune system is not back to par and there is nothing I can do just time. I know my white blood count was okay but it was stated that it wasn't as high as a normal person but will get better in time.

I too still want some good food that I can taste without any pain or problems. I understand completly about that. And the water burning parts of your tongue and throat same here. It scares me that maybe the cancer is back but my doctor this morning said that it is that my body is not completely healed and it will take time and to concentrate on getting better and not to stress out.

Maybe that's why my mouth is sore because I have been worrying about the surgery (neck dissection) Sept 2. I have had lots of encouragement from the people from this site and others I meet and speak to everyday. The surgeon feels confident everything will go smoothly and I have complete faith in him.

now about your port I talked to my doctor this morning about mine because I wanted mine taken out when I had my neck disection. I was told by the surgeon who put it in that he would not do it at the same time as the neck disection because the disection was a pretty intense surgery and felt better doing it later. This is what put fear in me and I am finally getting over it. But anyway my doctor said some people do not remove the ports they live with them.

Mine does not work if I had to stay in the hospital so I want mine out. I also have the option of when I get it removed not to be put to sleep. They would just numb the area and could do it in the office and I would just feel some pulling. Not for me right now so this is on hold.

I also wanted to be asleep when they remove the feeding tube because I already had it replaced once (it got clogged) and it wasn't a good feeling. I'm a big baby when it comes to things like that.

Also my doctor suggested increasing my vitamin C intake to help me heal.

I'm thinking of you and hope everything goes well.
Love
Terry

Thanks Terry,

Your doctor is saying to you very much what I heard from my ENT last time I saw him--he said I should plan on 7-9 months of healing after radiation (tight now I'm just a little over 2 months out). I swear he never told me that BEFORE rad--he said 2-4 months. Oh well. Maybe he's done more research himself since then.

I also called my surgeon's office and found out that I would only be needing a local anesthetic for getting the port removed so I'm going ahead with that. I would think you'd want to keep your port while you are in the hosptial for the neck dissection--if they can use the port, it will save you innumerable needle-pricks! It's true I think you can live with a port for a long while--but it has to be flushed once a month. Still, I see no reason why I'll need one in the near future (knock on wood), so I'm going ahead with the surgery to remove it.

I already had my neck dissection surgery,as you can see from my "signature" field below, I had that first along with a partial glossetomy because it was thought that might be all I'd need (unfortuantely it was not). It really wasn't too bad, even though I know it sounds horrible--I'll send you good wishes on the second of September!

Nelie

I didn't know that I am suppose to get my port flushed once a month!!!! The last time it was used was for chemo the third week of May.

I went through iv's while hospitalized because the port did not work right I think I had to hold my left arm up in the air for it to work right. The tried numerous times to get it to work and would poke and poke but couldn't get it to work.

Will I have problems not having it flushed?
Love
Terry

Nelie, are you pushing yourself by going back to work so soon? Surely they can do without you a little longer! Terry, keep looking forward. You will get beyond the neck dissection surgery. It may not be a piece of cake, but it is doable. [like so many other things we get to face down in this world] Amy

Terry,

I don't know about what problems would happen if you don't get it flushed. Maybe yours is different too. It seems like they definitely should have told you that if you needed it. Or it may be one of those extra precautions which the folks at my medical oncologist's office are so very good at taking--but maybe it isn't strictly necessary. I honestly don't know, but I would call to be sure.

I only had one time when I had to hold my arm up to get the port to work. in general, everyone who needed to use it said it worked like a charm!

Amy, I'm at work today trying to work out the one in-person class I'm teaching (I'm also teaching an online class which won't be a problem and developing some training materials which I can do on a very flexible schedule and that is a half-time load for me. I had enough overlaod teaching hours banked to get released from two courses I normally would have to teach.) My freind and colleague could take it for me if we give another class she's teaching to an adjunct and then I can take on another online calss in exchange.

I really like teaching in the classroom MUCH more than teaching online but it doesn't look like it's the semester for it, given how sore my mouth still is. Thankfully, I have really good work environment and colleagues who really want to help me get well.

Nelie,

Sorry I have taken so long to respond to your question. I had my tonsils removed and had my butt kicked. The ridges and valleys you feel on the roof of your mouth are called ruggae and the largest bump you probably feel right behind your two front teeth is your incisive pappilla. Those ridges probably feel bigger now because the tissue is inflamed. I hope that you are feeling much better by now and this is a nonissue for you. If you are using a gel product, you may want to give Vaseline a try. It will probably stay on the tissue longer than a gel stays in place.

Sorry I took so long to answer,

Barb

Thank you Barb, for the answer about the ridges. I do worry about putting vaseline in there because whatever I put there usually ends up goin down my throat evenually, at least some of it, and I don't like the idea of swallowing petroleum jelly. Also, the biotene gel has all the good stuff in it that's missing in my saliva.

I'm here for some shameless whining and in need of some basic emotional support. Today is my birthday and it hasn't been a good one.

Firwst, I was up until 3 am this morning with bad mouth pain. Same old thing--same spots (roof of mouth and this one spot on the right side that *may* be partly from rubbing against my teeth). Finally, after taking an extra dose of oxydose and extra-strength tylenol on top of that I somehow managed to sleep for several hours. This mouth pain at night thing is getting REALLY old.

Then I of course was not able to eat anything today--even ice cream (I tried) and its my birthday AND I went to the dentist and got some not good news. He asked if I had been wearing the "flap" he made for me (little temporary partial that fits in where he pulled my two bottom front teeth). I said no, not at all since I got mouth sores back in May and I had noticed that the front tooth that is right next to the gap where the two teeth were pulled looks like it has kind of moved around a little. And he looked and said yes, it had and now there was a problem because it wasn't where it should be and he couldn't pull it because I'd had radiation.

My radiation oncologist told me I should not worry about wearing that if it was aggravating the mouth pain and sores--it was never coinfortable even BEFORE the mouth sores, I don't know HOW it could have been made comfortable enough for me to wear it the last few months but I wish someone (even this dentist--when I last saw him before rad) had told me THEN how important it was that I wear it every day. I swear I even rememebr that I told him the last time I saw him that I doubted I'd wear it if my mouth got sore. Maybehe didn't realize how long that might last. Or he wasn't listening.

So he has referred me to an oral surgeon (a new one, the one who did the biopsy is semi-retired and I need an oral surgeon affiliated with the hospital) to look at my mouth and see what he thinks. The good thing is the dentist got me in quickly to see this oral surgeon but if I have to have oral surgery now, won't I need hyperbaric oxygen? Of course, maybe that would help the mouth sores anyway BUT I can't get it anywhere nearby. I'd probably have to go stay in another city for several weeks just for that.

Anyway, given all this, its a good thing that the class I ws supposed to teach in the classroom (as opposed to online--I'm still teaching online) has been taken by a colleague because it was clear I wasn't up to talking for an hour twice a week but I'm also really depressed about that.

I love the classroom and the electronic "classroom" is not the same. And I really had hoped I'd be close to normal right now and I still feel so disabled by the mouth pain and sores.

And, have I mentioned I love to EAT too and I wonder if I'll EVER enjoy that again.

I just started crying after the dentist visit. I haven't cried very much during all this but I
'm just SO tired of this disease (or the effects of the treatment--to be more accurate( destroying and swallowing up so much of my entire life!

OK. I'm sure all this whining is tiring to some but it really helps me to express this to people who have been there, so thanks for reading all the way to here!

Nelie,

Happy Birthday!! Each one makes another milestone you have achieved.

Thinking of you!!

Cindy

PS... Today was also my sister's birthday as well!

Nelie,

Happy belated birthday! I'm sorry you're having a tough time and I'm sorry your dentist isn't more on top of things. I wish I had a magic fairy dust answer for you but I don't. That tooth that moved may be able to be moved back when you are feeling better -- are you having pain from it? Are you having a problem down there? You may want to just hold off and when you are feeling better a small appliance would be able to move that tooth back to its original position. Ask about that before you have it extracted.

Hang in there,

Barb

Thanks Cindy and Barb.

Today I saw the oral surgeon and went back to teh dentist and also ended up getting in to see my ENT a little early (was supposed to have an appt. next week). The oral surgeon seems like a very nice and knowledgable guy who also spoke highly of my ENT and the dentist. I didn't realize this but he said my ENT had done extra training in ear nose and throat surgical oncology at one of the top places for ENT training in that.

I never really asked the ENT his qualifications because I saw him right after I got the biopsy results and I was just reeling still.

But it explains why he (the ENT)insisted (and was right to insist accrording to the folks at Dana Farber where I got a second opinion) that I needed radiation, though, even when the one rad oncologist at the local hospital (who has since left--was not the one who ended up treating me) said he didn't think I did need it.

Anyway, I'm now kind of glad I didn't see the oral surgeon before rad, though, because he said he would have pulled three more teeth on my lower jaw just because all three of them have old fillings which means there is some possibility they could abcess in the future. But he said now that rad is done he thinks if I get the old fillings replaced with newer fillings I'll most likely be OK.

Interestingly, he said to me that the risk of radionecrosis to the jaw *doesn't* get less the further away from radiation you get and that in fact some of the worst problems can crop up 10-15 years afterwards. But that many times if a tooth needs extraction, it can be extracted with no problem, even after radiation. And also they have HBO in Syracuse, which is an hour and 15 minute drive from here but not as far off as I thought I'd have to go if I ever need it.

He doesn't think the tooth that is crooked needs to come out for any reason right now. The problem, which I confirmed with teh dentist this afternoon, is that it will be harder for him (the dentist) to make a good bridge or something to put in that gap next to it eventually. But the dentist promised he would figure out something after looking in my mouth again and realizing that it really did look too sore to even think about wearing a partial right now (as the oral surgeon said "all of your mucous membranes look very unhappy in there" )

No one thought there was anything that looked like cancer.

I did get two of the sharp teeth filed by the dentist, then my mouth started hurting too much (but I think that alone will help).

My ENT is sending me for a combined MRI and PET scan in the weeks to come. Actually the MRI is Monday, which will not quite be 3 months after the end of rad but close (within a week of that), I don't know when the PET will be yet. He warned me things would show up as hot on the PET but it would be the combined reading that counts so I should just wait until he gets the results and let him explain them to me.

I thought I'd be terrified about finding a recurrence but I'm not yet--I guess I probably will be once its all done and he has the results but I haven't heard them yet.

All in all I'm feeling better about things. All three of these guys said I just need to give things time to heal, that it isn't unusual to need this kind of time, and that I have a really good prognosis of cure (disease free after 5 years) after getting teh rad and chemo so I should feel good about that so far.