Hello All,

I have been working on expanding my mouth opening
to allow me to eat through my mouth and get rid of the PEG tube. I have been feeding myself for almost 6 months. The therabite device does work but it's a slow process. I should have been using one at the start of radiation instead of waiting to the end. Another case of me having to ask for a therabite, my ENT never suggested I should get one. Nor did my rad guy. I got the info off OCF.
My mouth opening was less than two fingers about 20mm, I'm now up to 27mm which allows me to eat splid food.

I saw a nutrionist today and the plan is to have the PEG tube removed by mid February. Can't wait to sleep om my stomach again. She gave me some sound advice on what and how much to eat to maintain my weight. Right now I am 5 lbs heavier than my normal precancer weight. I have gained back 30 lbs. in 5 months. All on Jevity & Gatorade.
Plan on eating alot of creamed soups, meat, salads
and eggs, oatmeat etc. Well this is all for now, Thanks for letting mr roam on. Your friend, Daniel

Hello all, Eric here. I started this thread a few weeks ago. It's Tuesday, Jan. 21 and I finished my last IMRT treatment this past Friday... Yahoo!!

The last week of treatments really kicked my tail, and honestly I still feel pretty rotten four days out from my last treatment. At least I know this is pretty much the bottom, and I should begin the upswing any day now (at least I hope that's the case)...

My mouth held up well until the final week. Now, my tongue, cheeks, gums are all sore, and of course once that pain medication wears off I have the sore throat of the century... Sleeping is a struggle because I have to get up every 1-2 hours to spit/rinse all the gook in the back of my throat. Thankfully I haven't been sick to my stomach in awhile...

I go back to the doctor tomorrow for a follow-up. He may give me a stronger pain meds, since my current prescription of Hydrocodone doesn't seem to have the same effect that it used to (seems to wear off in 2 hours, but I can only take it every 4-6 hours)...

Thanks again for all of your encouraging words... It's nice to have folks around you who have been through what you're going through... That helps us to keep going...

Blessings,
Eric

Eric,
Congratulations on finishing Tx. I'm shocked that you're doin' it with just Vicodin. I was using a 75 mg Duragesic patch with 15 mg morphine tablets for break through pain. And it was barely enough. My side effects from the radiation actually peaked about 3-4 weeks post Tx so you're not out of the woods yet. It was slow going at first. They say you notice inprovement in three week increments and I found that to be the case. You're lucky the nausea is gone. I think I had radiation sickness as well. It does get better - I promise.

Eric, first, congratulations on making it through! Everyone who has been there knows how rough it can be. About sleeping, if your "gunk" is the same as my "wallpaper paste" I found that rolling up gauze and placing it in the sides of my mouth absorbed enough of that to let me get a few hours of sleep, or go out in public without constantly spitting and wiping my mouth. I also slept a bit elevated with a couple of pillows. Try taking note of your situation weekly. Sometimes one day seems pretty much like the next, but you can really see a difference in a week's time. And yes, you are on your way back to real life!

Yes,
week by week it gets better. I finished my IMRT on 12/29. Sleeping was awful, I coughed with all that thick stuff in my throat, had to take cough syrup with codiene or lortab to get any sleep. Also up every hour to drink water (keep a large glass or water bottle by the bed), etc.

Just after I thought it would never end, it got better. Although I think now I have dry mouth, and still have to drink water, but all that thick spit stuff is gone. (by the way I could't spit it out so I would swish water around in my mouth, then spit it out)

So, its great to be done with radiation, each week gets better - same with eating.
michelle

Eric, just one more suggestion. As Michelle's post reminds me, it is not possible to spit that thick stuff out. About a year ago several of us agreed that Puffs brand tissues are the softest and strongest for wiping it out of your mouth. I wish I had stock in the company, for all that I used. Also as Michelle says, it does end. I remember waking up one morning and having reasonable saliva. Just like a switch had been flipped. You will get there too. Hang in there.

Hello all-again great encouragement and advice... my problem with wiping my mouth out with tissue or foam "toothbrushes" -- if I get anywhere near the back of my throat, whammo, the gag reflex kicks in... Sometimes this is good, and I can cough up a nice mouthful and spit it out... Other times, like last night twice, I actually get sick and lose all those hard-earned calories... arrgg...

Went to the doctor today and he hooked me up with the mega-pain medicine pack -- a patch, a steriod, morphine, some naseua medicine, a hydrocodone refill and I'm sure some other stuff that I haven't found in the bottom of the bag yet. I actually left the pharmacy with a big brown grocery bag!! My poor liver... :p

Even the first round of morphine didn't seem to do much. I tried drinking some gatorade (since I'm getting somewhat dehyrdated) and it burned going down... my tissues just burn... I think I'll do better when that comes under control...

Anyway, I'm hanging in there... thanks for tips and "tricks of the trade"... we're definitely in a club no one wants to be in, but one that we're all glad is there...

Blessings,
Eric

HI Eric, You might be lucky and start to feel better in a few days. I noticed improvement in about a week.

Take care

I'm actually feeling a lot better today and had a great night of sleeping (only up twice, with minimal spit/rinse needed)... The new meds (and a lot of prayer from family and friends) have helped tremendously... :p

The only thing keeping me from eating out the refrigerator is that there still is a pretty intense "burning" feeling in my mouth when I put anything other than water in there... Even using Lidocain doesn't seem to help much... I'm trying to down some Gatorade and drink a soy smoothie (with lots of peaches and weight-gain powder blended in), and every mouthful is tough...

But, things seem to be looking up overall, which is great...

Hi Eric,
I found almost any kind of fruit difficult early on because of the acid content - it all burned - even strawberries and bluberries. Citrus,even cranberry juice was the worst. Eating fruit was a litmus test for me as to how my healing process was going.

Be sure that you're drinking 2-3 liters of water each day.

You're still way early in Post Tx and still experiencing the radiation build up side effects. All in all you're doing remarkably well - be patient - this too shall pass.