Wow, I guess this is a venting post. I don't know I just wanted to say it amazes me how the residuals of the rad treatments continue to build so far out from tx. My jaw gets tighter and tighter but it also has gotten pretty painful to stretch. The same with my neck. Now my tongue wants to join the soreness to move club. I read everyones posts about this, especially those who had the mouth and tongue surgeries ect. and thought I understood what was coming. I guess I am just suprised and of course the farther I get away from tx the more healed I want to be. I thought I would give everyone a smile. I know everyone who has passed the point I'm at is saying "we know". Well I had another petscan yesterday and will find out Tues if we are going with the RND. Now I know why my rad dr. did not want to wait to long after treatment to do the surgery if it was necessary. I can feel the scarring ect in my neck from rad which he said will just make the surgery and recovery more difficult the longer we wait. Anyway, I just wanted to talk about some of this stuff. Not angry or frustrated just sharing about it. Thanks for listening. Lee

Wow- we're kinda at the same spot right now. My jaw has gotten so tight...I can barely fit 2 fingers in it. (thats my measuring technique). I thought it was from my TMJ but maybe it's from radiation. My tongue has gotten sore again, too. It's also swollen. I actually had my docs feel it again to make sure the tumor wasn't back...they didn't feel anything tho. But I'm back to slurring when i talk, which I WASN"T doing after treatment. I don't know whats up. I was done w/ tx on 3/15 & thought I'd be eating everything & back to normal by now. Boy, was I WRONG. It seems never-ending.
I had my first PET done 9 weeks out of tx and it showed some activity at the site (left side of tongue) but my docs think it's from the swelling. ) What did your first PET say & when did you get done w/ tx?
OH, what is RND??? I had IMRT 35 times, Cisplatin once & Carboplatin once-had to switch cuz Cis made my ears ring too bad. Good chatting w/ you! We're in the same boat

RND = radical neck disection.

My 1st post Tx CT showed 2 small spots in my upper lungs.

My 2nd post Tx CT showed the 1st 2 sm spots in the upper lungs gone and 2 sm spots in the lower lungs. The 1st CT didn't include the lower lungs so they did a 3rd CT 3 months later (my 3rd post Tx CT) and finally no spots anywhere.

rob had his surgery before rad treatment and at 5 weeks post tx he started with terrible pain in his jaw.He couldnt open his mouth very far and couldnt chew and his speech is very slurred.The problem is that with healing comes tightening of all the things that were cut and sewn back up.Robin was told to do yawning exersises after his rnd which of course he didnt bother too much about as he had a peg tube.The problems started when he tried to start eating again but he is trying to do the exersises the Dr gave him now and he can get three fingers side ways in his mouth which is apparently the bench mark.Also the scar from the dissection is looking very "pulled up" and his chest hair is sprouting out of the middle of it.The surgeon said it will be at least six month before this improves

David-thanks for your answers on the CT-makes me feel better.
Liz- Rob and I are similar in the tight jaw happening when we started eating. Thats exactly when this got worse. I would've thought it would get "looser" cuz I was using it to eat. No so. Why do you think our speech is slurred? Is he still slurring? I was talking fine after rad for about 2 months & then it just started out of nowhere. So frustrating.

I dont really know about the slurring jordan robin only had a small part of his tongue removed and he wasnt slurring post op he talks like someone who has had a long session in the dentist and still has a numb mouth.I do know the nerve to his lip was damaged in the operation and although the droop is very slight maybe his lip cant move to form the sounds properly.As to the tightening,just think about a simple cut.As it heals the edges draw together and a scab forms.If you pick the scab off the skin edges open up again.I do know that some people get adhesions post op and actually have to have their scars opened up and tissues released that have stuck to other surfaces.After all when you have a neck dissection they do roll the skin on your face up like a roller blind!!Its major surgery and ALL major surgery runs the risk of side effects let alone surgery that is in an area containing so many delicate nerves and muscles, and our surgeon did pre warn us about all these.

I have a routine which seems to have worked well, at least for me.

At the advise of my RO, I have been doing daily stretches of my jaw (20 repititions opening my jaw to the maximum extent possible, two or three times a day) since I started radiation therapy. I have also been doing neck and shoulder stretching exercises 5 days per week. My neck exercises consist of turning my head each way, then tilting my head each way as well as back. For my shoulder I lie on my back and stretch my arm straight back and touch my wrist to the floor way above my head; I then pull my arm over my chest; finally, I stand at a wall and raise my arm as high as I can straight up toward the ceiling.

To this point, all is going well. My mouth opens fully without trouble, and my neck continues to get more limber. My shoulder stiffness has steadily decreased, and shoulder droop seems to be just about non-existent.

Chris

Thanks Chris if I have to have the RND I will keep this post in mind. Jordan I had my first pet/ct scan combo at 8wks. It showed uptake at the node that was left showing to be cancerous before I started treatment. But it was very low so the docs felt that it could be inflammation and that we may have done the scan to soon. So I did another one on june first. My last treatment was on March 22. I'll know Tues what they found this time. This scan will also be the deciding factor on the RND.

Lee- be sure and let us know about your results. I'm sure it has made for a tough few days of waiting. I truly hope everything is OK.

Jordan, My husband 10mths out from radiation. and also had a bleed out in october from radiation necrosis in the tonsil area. Is still having difficulty talking because of the damage to his tongue from the tumor and the radiation scarring. He is very frustrated and hasn't eaten anything for a year everything by the gtube. So your not alone in this. They say it takes time but I'ts been a year and still cant talk or eat and continues to get aspiration pneumonia. He had a pet scan a month ago the radiation dr did not want him to have one because he thinks theres to many false positives. He goes by how the tongue looks and feels. The pet scan does light up in his tongue area and the other drs say they can'say for sure if its cancer but the rad dr says he thinks things look good very frustrated. My husband is in a rehab right now for a week with IV antibiotics for the lates bout from pneumonia. We also have a malnutrion issue cant get past 120 lbs. Trying a new food but have to be careful with the protein amounts, He has swollen legs now. not sur if its from malnutrion or to much protein. Its amazing what this cancer can do to the rest of your body. 5 steps forward 10 steps back. Thats what my husband says He is so scared that he is not making progress and getting stronger I think he is mentally and physically exhAusted.

I was curious- do any of you take pain meds for the tightness around the jaw and sore tongue. I am still taking Lortab to help with this type of pain and i was wondering how other people were handling it.

It is so frustrating. All cancers are cruel but this is awful. I don't think I've enjoyed a meal since last November. I was eating in Decemer & still not diagnosed but my toungue hurt so bad I count that too. I'm trying to gain weight & it's hard. I have a 2 year old girl and she hates the looks of the PEG & the whole process that goes along with it. So, I can' eat if she's around or I have to go hide. ugh. My husband does great at trying to distract her but she still says Hold me mommy. Poor lil girl as been put thru the ringer with all of this. Her & I use to do everything together. Then w. the pain & fatigue, I feel like a loser mom cuz i can't do the fun things anymore. WOW-sorry I just vented so long. Maybe I should've gotten online BEFORE I took my Ambien.
We all feel like we're not as far along as we should be. We're in a club that no one wants to belong to but at least we have each other.

Banker, I am two years out from rad and I still have a stiff jaw and a sore tongue at times (mostly I think from drymouth and rubbing against my teeth which have shifted around since rad). I take Aleve when it gets too bad and that usually works. But I don't know how far out you are from treatment. I was on prescription pain meds, at least at night, for about 4 months after rad. ended. my mouth was MUCH more painful then.

Jordan, I completely understand your frustration with how long it takes to heal but it doesn't sound to me like you are unusually far behind in terms of your recovery. Though you don't have info. about your treatm,ent in your "signature", it sounds like you are maybe 3 motnhs out of rad? I still had a lot of pain and faigue at that point and many people still need a G tube at 3 months. Though perhaps you should request a swallowing test if you feel you can't swallow anything for reasons other than pain.

Nelie