OK, I almost let myself decide this wasn't even worht asking about but I am Sooo good at minimizing my symptoms sometimes, and its what got me in trouble in the first palce, so here's my question.

background: 3 and 1/2 months out of rad, I am still having lots of mouth and throat pain, much of it in the mouth appears to be from spots on my tongue that rub against my teeth, especially when I swallow liquids or talk and seems to be getting better. But I still have at least one inflamed and whitish looking sore on one cheek that's from the original mucosoit and occassionally hurts. And I have this one VERY sore spot in my throat that seems ot be just as sore as ever. When my ENT has looked there he says it looks like my "throat is peeling" there. Recently I had a PET and MRI and heard rom my ENT that everyhting looked OK in terms of no signs of recurrence. He did say there would be hot spots on the PET from the ehaling parts of my mouth/throat, howver, so I don't knwo if maybe for those spots he really can't tell what's going yet,

Because of these spots, I still am having problems eating or even dirnking smoothies orally and am still on tube feeding which I am SO ready to end (but I'm also so tired of trying to eat something and being in pain and getting more discouraged so I go days wihtout even tryng to eat, which also probably isn't good).

Also, I have problems still every now and then with thick gobs of phlegm getting aucght in my throat, right around where it triggers my gag reflex making get these long wretching dry heaves. Lots of times there days I can hack up the phlegm before it does that though if I feel it gyrgling around in my throat (my husband says I gurgel constatnly as I sleep so this gives oyu an idea that it's not just some oittle thing). Usually the phlegm just looks lik th ordinary stuff you mht cough up if you had a cold--its like that part of my throay always has a cold. But yesterday I got the dry heaves, and for a whiole notoing came up, then a couple of smallish bloody pieces of someting--almost like something had been scabbing over then I coughed it up. I didn't keep coughing up more of it, but this is the first time I'vce coughed up bloosy stuff since duringa nd right afetr rad. when I had all sorts of really raw spots. Should I be cincerned about this suddenly happening thee months later? I have a month until my next appt. with the ENT, should I pester him to see me (yet again) beofre my appointment?

Nelie,
I finished my rad/chemo just before you did. I also had concerns about my throat being sore and my tongue feeling funny. I had lost my sense of smell which was good in a way but as it came back I would smell the food people would cook and would try to eat it painfully. I wanted off the tube so bad and wanted to eat regular food that I think when I ate food it made my throat worse.
I would talk to my ent about this and he would tell me that it will get better with time. I have heard that so much that I can't stand it much more. My ENT's office assistant suggested that I see the swallowing specialist to see if there was a problem.

She was real nice and explained that she was going to film my throat and it wouldn't hurt. I was sceptical but she was right it didn't hurt. The worse part was that she had to hold my tongue which was still sore.

By her filming my throat, I was able to see what it looked like. It was still swollen inside. (I told her that when I would try to eat it seemed food would get caught on a ledge and could be there for a while and it would come back up if I coughed.) She showed me this possible ledge and how red and swollen it was.

She told me that I needed to concentrate on real soft foods and to swallow, swallow, swallow drinks to help build back my muscles. I have been tube feeding since mid March til about 3 weeks ago. I am not eating enough real food that I drink the nourishment supplements. My daughter saw me yesterday drinking it and made the comment that she couldn't believe that I was drinking it! I told her I had to get it in me some how because I cannot eat enough real food to keep me healthy. I am still losing weight.. a little slower.

I to recently would cough up blood and particles and from what the doctors tell me it is from the radiation and it just takes time to heal.

Everyone talks of ice cream I use to love ice cream but am afraid because that is what I had last before I got thrush and mucusitous and since my tongue gets a coating on it when I drink the supplement I am still afraid of the thrush and mucusitous.

If it makes you feel any better I also am having the phlem stuff and sometimes cough them up and spit it out to get rid of it. And yes the heaves. In the middle of the night especially. My mouth so dry and having this gunk stuck in the gag reflux and the gunk just wont go anywhere.

It amazes me how one day things go great and you feel good and the next day it just seems like no matter what you do you just can't get comfortable. Maybe because on the day we feel good we do to much and then we have to pay the price.

I did feel a lot better after seeing the swallowing therapist as far as it would get better and everything looked good and nothing to be concerned about. I think that sometimes I bug my doctors to much but that is what they are there for. We have been through hell and need reassurance that we do not have to go through this again soon.

Let me know how things go.
Love
Terry

Hi,
My suggestion if you are gurgling in your sleep you must fix an appointment with your ENT as fast as posible and ask if a MRI should be done to rule out certain possibilities.
Ananth

Actually I just had an MRI when I made that post and the ENT said it looked OK in terms of no signs of cancer recurrence. I think the gurgling may be phlegm or possibly some kind of infection that's not healing around a spot that was damaged by radiaiton, but I trust my ENT to rule out anything more serious.