I was wondering if ALL OC patients have eating/swallowing problems.

I will be starting TomoTherapy next week for 7 weeks. I have a PEG, but hoping to eat normally as long as possible. Then, try to keep on swallowing liguids so everything continues to work properly.

Just wondering what to expect.
Thanks
Sandy S.

Hi Sandy,
I am new to this, but I just completed 5 years after IMRT radiation and surgery for OC. I did not have to have a feeding tube but it got close. Everyday after radiation I would go to Foster Freeze and eat a big vanilla cone and in the last few weeks sipped canned liquide meals. I am not familiar w/Tomotherpy, but I had difficutly swallowing for several years after. Nothing that I couldn't deal with, just had to make sure I took small bites or I would choke, taste buds came back in about 6 months and saliva improved over the next 2 years and everything is pretty much normal - Good luck and one day at a time you should put this behind you - Dave

Sandy, wishing you the best with your treatments next week. Eat everything you want now before you start. I just posted a list of easy foods that could help you later.

Dave, congrats on your 5 years!

Yep, congrats Dave. Sandy do as Christine says. It's a bumpy road but good shock absorbers make it smoother. You sond like a fighter already so keep that spirit and use it. It sure helps to be positive and prepared.

Sandy,

As I'm sure you can imagine our body functions in perfect harmony until something starts to mess with it so you can also imagine that having your mouth and throat subjected to radiation can only be a bad thing. You also have heard that everyone can be affected differently so how much "bad" the radiation does to you will just depend upon you.

I didn't have the PEG which forced me to continue swallowing all throughout Tx and perhaps that helped me as I never had any post Tx swallowing problems. I still am not 100% recovered in the saliva dept and may never be so that affects my swallowing as I need to wash things down faster now than before but compared to many I was lucky.

I did many things to keep my throat functioning like controlled yawning where I tried to "fire" my muscles a lot; I would take sips of water and try to gargle 3 to 4 times a day; I took many hot showers where I was freer to gargle and besides they just made me feel good and of course I swallowed many, many times each day just to stay alive.

When I was a newbie and having just completed Tx I often touted NOT GETTING THE PEG as I compared my ability to swallow to those that did have the PEG and had swallowing problems and the wars started. Since then I realize that the PEG is not the sole determent whether someone ends up with or without swallowing problems although I still caution people getting the PEG to continue to use their swallowing muscles as much as possible but obviously the most important aspect of Tx is to survive and for many, if not most of us, the PEG can facilitate that.

Good luck to you.

Sandy

I believe the simple answer to your question is YES. If there have been OC patients who had zero eating or swallowing issues, I have not seen their posts on this or any forum. Eating/swallowing and radiation appears to be an oxymoronic phrase. Like David posted, I attributed my good fortune in being able to swallow to foregoing the PEG and being forced to swallow six cans a day of Ensure Plus or die the last month of TX I lasted 4 weeks into radiation still eating solid foods. Now that I have been forced to have a PEG, I am looking forward to just having it as a backup someday.
The important thing is to keep swallowing no matter what. Everything else will come back in time. One year exactly after TX, I had the very best Thanksgiving dinner of my life because I savored each bite and did not take one swallow of food for granted. My taste never came back fully.
Finally I would not have made it through without Seltzer Water. It cut thru the mucous, it cleared out the Ensure film, it soothed the oozing mouth sores without irrating them and I imagined the carbonation as little scrubbing bubbles whisking away the dead skin cells. Best wishes and stay strong.
Charm

I have to contradict a little of what Charm said above where he said "The important thing is to keep swallowing no matter what. Everything else will come back in time."

After talking to several people I made mad because I was telling them that me not having the PEG MADE THE DIFFERENCE and then realizing that no matter what some people did during Tx they ended up with lifelong swallowing problems, I decided how wrong I was in putting it all on behaviors we can control because sometimes it doesn't matter what we do, to much damage is done.

I never had the peg, never have had much trouble swalowing and I have to think that it's because I forced myself to swallow meds as soon as I was out of surgery. Just like the little engine that could. He kept saying I know I can, I know , I kn ow I can, and he did it. He pulled the RR cars up the hill with no problems.. Positive thinking can make one do impossible things sometime.

Yes I was told that I couldn't do it by the nurse and the Dr but I did it . THey just smiled and said keep that attitude throughout treatments.

Sandy,

Your treatment sounds great. Where did you go?

Mike

tongue ca, t2n2b, 2x surg 12/08, 04/09, ND, start chemorads next wk, 30X 2Gy + weekly cisplatin

Sandy,

I had horrible swallowing issues but all are a distant memory...Well, the very bad ones. I still have some problems here and there but nothing like the ones I had going through treatment. I was drinking 60 plus ounces of liquid a day and that really helped. Although, it got to a point where I couldn't get anything down and it put me in the hospital for 9 days due to severe dehydration.

Good Luck and take it one day at a time...and I believe it's a good thing that you have a PEG....I did not have one...and I came real close to getting one.

Stay strong.

Mike:
I'm being treated by INOVA Hopsital System (Fairfax Hopsital) in Norther Va.
Originally the doctor's wanted only to do Cisplatin and radiation for 5days/7weeks. But I found a medical study on line which gave good results for Induction Therapy using Cisplatin, 5-FU, and Textera. I asked my doctor's to do the more aggressive Induction Therapy. It turned out to be the best decision I've made. The chemo therapy reduced my cancer a great deal even before I started radiation. The doctor's are very positive about the prognosis.

Induction Therapy is typically used for more involved cancer than mine as I did not have any lymph node involvement, but I asked for it anyway as I was already a Stage 3.

There is a huge (800+) study that just completed in 07-08 called TAX 324 which give the results of the chemo regimen.

Sandyst

Sandy
can you just clear something up for me?You have just written that you had no lymph node involvment,but your signature line says that you do .

liz

The nodes were too small to be considered. less an 8mm and SUV very, very slight. So no surgery, all signs disappeared after chemo. They are radiating a lymph node on my left side just because that's were my cancer is located. Just as a precaution.

Also with a PET there's a chance of a false positive which I believe was really the case.

I will be starting radiation in 2-3 weeks as soon as my neck dissection I just had 4 days ago heals! They said I would have problems swallowing after my partial glossectomy, they said it would be hard to eat and swallow after my neck dissection and now they are saying I will most likely have a PEG! Well! I swallowed and drank a TON after my glossectomy, I ate dinner the night of my neck dissection and have continued eating everything I want 4 days after.....Does it hurt? Hell yea! Is it hard??? Hell yea! Is it going to kill you? NO!!! I had a salad lastnight and every bite I took when it went down my throat made me cringe but you just keep doing it! I feel like I have lived with the wost tonsilitis for the past 2 months! I dont know if Im going to know what to do with myself when it doesnt hurt anymore to eat, swallow or drink!!! So I will not be getting the PEG! I am sure I wont be eating pizza 4 weeks in but I will unless it just absolutely will not go down my throat be eating and drinking myself! I am 30, just married, just bought a house and am very pissed off that I have to deal with this so I have more fight in me to beat this then it can possibly have to beat me! Keep the attitude, keep the faith and dont let the small stuff get to you!

Jim,

The PEG is not a bad thing. Knowing now what I went through during my txs, hindsight is 20/20, I would have gotten the PEG. It would have kept me out of the ER and the hospital for severe dehydration. Who knows maybe I wouldn't be getting my gall bladder out next month if I was able to maintain my weight during the tx's...I don't know...But, what I do know is that a PEG can be a very good friend. With no PEG I went from 215 to 165 pounds and a 9 day hospital stay. Currently, I am able to maintain my weight anywhere from 167 to 172 pounds...it fluctuates.

Having said that...Keep that attitude strong! You'll be alright.

Jim

I hear you loud and clear. congratulations on being able to swallow after a glossectomy and eat right away. With that track record you may not need a PEG at all. Heck, I made it through the first time with no PEG, no dehydration, 40+ lbs weight loss from 177 but just gritted my teeth and did like you are doing, But you do need to know that you are doing it the hard way my friend. Then again you are half my age and when I was thirty, I thrived on doing things the hard way. The biggest disappointment of the entire cancer journey was not even the cancer coming back, it was failing my barium swallow test and having to get the PEG. It is crazy, and not rational but true. One word of caution, you are unique in your experience and definitely not the norm, so tread lightly here on the board on the PEG topic. It is the best option for almost everyone. But as I said, reading your post really brought back memories - THANKS
charm

Jim

After watching the 60 minutes on the potential in 5 years for cancer treatment based on the resveratrol in red wine, I remembered one other argument (albeit unorthodox and most definitely NOT endorsed in any way, shape or form by OCF - purely my personal opinion) in favor of getting a PEG.
Alcohol and tobacco irritate the tissues of the mouth and have been proven causes of oral cancer. The issue of drinking a glass of wine or so after treatment (or even during treatment) is controversial with some doctors saying NEVER and others opining that they have seen no harm in their patients. The beauty of a PEG is that you don't need to worry about which side is right about alcohol, you can just let it trickle right into your stomach. At my age, I like my daily drink and hated the thought of cancer stealing that away from me too.
Charm

Jim,

I didn't get the PEG for the same reason you seem to be going with, i.e., you are just pissed off you have this cancer and a PEG is just one more thing to remind you that you are one sick puppy.

Now I made it thru with that stubborn foolish attitude but believe me the PEG can be another very effective tool in your bag of tricks to fight this cancer. You don't have to use it unless you need it (and there is NO WAY you can know that now) but it will be there JUST IN CASE. BTW, if you don't get it now chance are you won't be able to get it when you need it without disrupting your Tx which is not a good thing.

My advice would be to put your pride aside and get the PEG.