Hey all,
My wife found this site and has already found support and encouragment from this forum and I am looking to get some of the same. I have stage II/III cancer of the tongue and will be having surgery in two days to remove 1/3 of my tongue and left sided lymph. I am not to nervous anymore about the surgery but am just looking forward to getting on with treatment. I met with my Oncologist and it looks like I will have about 8 weeks of IMRT along with Chemo and Ebotrux treatment. What I do have questions about is the radiation and chemo treatments, What acan I expect to go through, How will it affect me? I am a no-nonsense kinda person so please don't sugar coat it I could really use a real world perspective on what it will be like. Thanks for your support,
Erik

hello erik, my name is lenny and i think I am just steps ahead of you brother, except that I have already had the imrt 33 sessions and three sessions of chemo and now I am having surgery on wed of this week, as for the chemo I had no ill effects, the radiation is a different story, the right side of my neck got pretty burnt but did not really hurt, the worst are the taste issues, I can taste very little yet, then the dry mouth and very thick saliva which is just awful at times and the swallowing and sore throat that is still somewhat if a problem but I am only 24 days post radiation, the worst days were the week to ten days after radiation ended, I was pretty sick and very hoarse and spent christmas week pretty much in bed, if you have a peg tube for feeding use it like you are suppose to, it will provide lots of nourishment and you will need it bro, I lost about 35 lbs, lookin' mighty trim but what a price, I expect to loose a few more because of surgery, but man I sure do pray everyday. Hang in there my friend it may get worse before it gets better but every day is one day closer to winning the battle, and don't mind being scared I am scared out of my wits most evenings around bed time, it is tough living alone and going through this, that being said you will find that this site is a god send hang in there bro and god bless. lenny

Erik;
By all means go ahead and at least consult with a gastro. Have He/She standing in the wing to install your PEG when needed. Don't wait until you need it and then shop for a Gastro. Do it now! Nutrition and hydration is extremely important, your road to restored health..
Darrell

Erik, Hi and welcome to the Forum. You can learn a great deal about our type of cancer here on this web site - both here in the posts, and on the information blogs.

Your experience in treatment will be uniquely yours. Each of us goes through it a slightly different way, though there are some things you can likely expect. Your chemo will likely both weaken and dehydrate your body, so nutrition and fluids are a constant challenge. The slogan in our chemo room was "Double your fluid intake - cut your symptoms in half." It was true for me.

Keeping your weight up is pretty important and can be quite challenging. If you are going to get a peg tube - get it sooner than later and use it. Swallowing might well become very difficult - if not impossible during treatment. Be prepared for that.

Your body isn't going to like the cancer treatment. The drugs and radiation are designed to kill the cancer and not you. For some, its a near thing. You will be weak, tired, occasionally confused, often frightened and possibly in some pain. The radiation is cumulative so the symptoms from it tend to grow. Some experience a lot of burns, others not. Most experience dry mouth, sore throat, stiff neck and swelling. Its no fun. However, most of the bad stuff is pretty temporary. We here have beaten the beast and there are many of us. You can do it too.

The hardest part of the treatment for me was the loneliness. My family and friends were around me, but the chemo recliner only seats one. The radiation table is for one. So much time for private thoughts, fears and questions. Oh, how I wish I had known about this site when I was in treatment. If your experience is at all like mine, you will have questions at times when there is no one knowledgeable to ask. Come here.

You can win this fight. Get multiple opinions about everything. Hire the best docs you can find. Question everything. Take notes. Make them tell you about all your options before you 'buy' any option. Being afraid is smart. Crying and feeling lost occasionally are both smart. Being passive is dumb. Not being extremely involved in your own care is dumb. Getting depressed makes sense. Doing nothing about being depressed doesn't. Letting your family and friends help you is smart. 'Toughing' your way through this with "I'm ok." is dumb.

Please come here often and share your experience with us. It will help you, it helps us, and it may help someone new. Get mad about this. Get focused and motivated. Fight hard. Be strong. We are with you. Tom

I had some long chats with my Docs, nurses and even a friend who is a shrink about independence, PEG, pain meds, etc.

I'm divorced and live alone and am quite independent, so initially I was fighting both the pain meds and the PEG -- I have come to understand that the way is better if I consider these things as tools on my side rather than obstacles.

While I take all my nourishment and most water thru the PEG (installed as early as possible so it's one more thing out of the way), I continue to swallow mucous and take all my meds by mouth in order to keep that system marginally functional and ready for rehab -- I realized there was no point (except maybe being masochistic) to daily choking down the food subsitutes when it goes in so easily, albeit boringly, via the PEG. When my taste returns then the PEG will go.

The pain meds are a similiar story; they affect my general feeling of well-being as well as dealing directly with all the throat pain, so why would I choose to feel bad when I can feel good?

Pete

Tom's remark that the drugs and rad are designed to kill cancer, not you, reminds me that right after rad/chemo a friend of mine gave me a bumper sticker that said "I'm going to survive this--even if it kills me!"

There can be days when it feels like that. Though you may be one of the lucky people who gets through everyhting relatively easily. Line up as much support from friends and family as you can. Find out what the resources are in your community that can help (give rides, get groceries, do home visits, etc.). And remember that although it's no fun, you WILL get through it and back to feeling better eventually.

And come here whenever you need to vent or ask questions. The people here are great and, as Tom said, it really helps you feel less alone.

Nelie