I posted a similar message on the intro page but thought it made sense to post here as well. I was originaly diagnosed with squamous cell carcinoma of tongue Nov 2001, had partial glossectomy and neck disection confrming no nodal involvement. I just had a recurrence (or was it a new primary) March 31, 2006, had another partial glossectomy, and am scheduled to begin IMRT radiation in 2-3 weeks. Any guidance on what I should be doing to prepare for radiation is greatly appreciated. I don't want to only rely on what the nurses say as many things on this board appear very relevant to me. Is there anything I should do ahead of radiation because it just won't be the same experience post radiation? Foods, etc.. I had all 4 of my wisdom teeth extacted the other day to kick off this fun process. Thanks in advance and thanks to others who have already responded to my posting on intro page

One more question. I have 2 little girls, ages 1 and 2.5 yrs old and I'm trying to anticipate how outwardly visible the effects of radiation will be. Should I expect my older daughter to notice?

Kids are so adapting. My cousin has a 3 year old and just refers to my scars as my boo-boo. (she now says she can't see my boo boo anymore - they have faded and are still visible - but she can't really tell). She came when I was in the hospital and wasn't afraid and I had crusted blood on my neck and tubes going in me in all different ways. She was more concerned with putting lotion on her hands and mine. I'd just refer to your changes as "daddy's boo boo" and she'll never be the wiser. As for what changes you will actually go through and what you can do to prepare yourself - I'll leave that to those who have had the treatment as I do not know. best of luck to you.

Hi Warren- Before my husband started radiation
he went to the dentist and had his teeth cleaned
and got a fluoride gel, he started using this right away before treatment. I also stocked up on
Aquaphor healing ointment, it is in most drug stores, you need to start using it right away when you start treatment.
I had heard alot about dry mouth, I also purchased a humidifier as we didn't have one,biotene mouthwash and toothpaste for dry mouth.
For foods, you probably won't need these until around two weeks into treatment for when it gets
harder to eat "regular" food, but I had on hand
chicken noodle soup (no actual chicken in it, just chicken broth and noodles) cream soups,yogurt,pudding, mac and cheese, ice cream for shakes, and if you see Boost or Ensure for sale buy them! He didn't need any of these foods
for the first two weeks, but now into the third
week this is what he eats.
The best thing I have learned this far is to get pain medication as soon as you need it! We
didn't get any when his throat started getting sore, got some today and it made a world to difference. Good Luck- Cindy

Warren, At first, you won't have a lot of visible changes from radiation. as time goes on you are likely to have some swelling and some radiation burn, although how bad this is varies for everyone.

As for preparing yourself for radiation, the main thing I would recommend is use the next two weeks to eat as much as you want of the stuff you love. If you put on a few pounds, rest assured that they are likely to come off, and probably more than you put on, during the radition treatment. And food will taste awful for a while starting one or two weeks into rad and some things may not ever taste completely right again (I think this may be especially true when you get rad to a cancer site on the tongue. I have a lot of my sense of taste back but it's not 100% and I think it probably never will be).

There are all sorts of other things you might want to stock up on for use during treatment but if you are having just radaoition, you have time before you'll start having any side effects. So for now, eat and enjoy!

Nelie

Hi, Warren, altho I posted to you earlier about getting ready for rad. tx. I want to add that we have had our [now 2 yr. old] granddaughter living with us since last August. John's rad. ended in July and he had considerable swelling, etc. after she came to us. She has also been through his second surgery. She has been unphased throughout. My advice to you, tho, is to Be Sure you have a quiet place in your house to retreat to after rad. begins. Odds are you will need some down time and the kids will have to learn to respect that if the door is closed, Daddy is sleeping and is not to be disturbed. It may be tougher on your wife than you to enforce this. John tried to take most of his naps when Elli took hers and the rest of the time, I just kept her busy outside or with a DVD. By the way- Baby Einstein and Baby Genius DVDs or VCR tapes are great for quiet time and learning if you haven't tried them. GranMa Amy

I definetly agree with Nelie....eat all your fav foods now and as much as you want. Don't woory about any weight gain at this point. Actually that's a good thing since you drop weight like crazy and Docs will be all over you to try and maintain it.

Look into Skandishakes (try ebay and buy in quantity to get shipping prices down). They are DOUBLE the calories of Boost or Ensure and trust me after drinking those type things for the period of time you will have to you will REALY appreciate that you only have to drink HALF as much to get the calories you need.

Look into getting soem Mucinex tabs (again ebay excellent source) for the mucus you'll defenity be getting in gobs. Really helps to 'thin' it out.

Ask for the Aquafor at rad treatment center. They usually have GOBS of it in the small trial size...but they will most likely load you up whenever you ask. Hey, free is better.

Think hydration...hydration...hydration because if you don't get enough...that can lead to all kinds of problems.

oops...I mispelled it.

It's Scandishakes. If you went looking for Skandishakes..probably wouldn't find anything.

Try them...they're not bad at all.

Warren, There should not much if any outward radiation damage and not knowing how much radiation is prescribed we cannot determine anything. But, since you are taking the IMRT route damage should be kept to a minimum.
Darrell

Warren, You might consider chatting with your doc about the drug Ativan. Some folks, like me, got spooked with that mask clamped to the table over my head. The Ativan can really help. Take it about a half hour before you go in - but don't drive if you are taking it.

My IMRT left me with substantial burns both inside and out. The kids will notice the swelling and peeling skin and the redness, but will be reassured if you don't seem worried about it. Kids are more likely to trust their instincts than their eyes. If they think you are upset about it, they will be too. If you seem to be yourself and can smile and laugh, they won't let your appearance dictate their reaction. Remember that each of us experiences radiation side effects differently - your experience will not be just like mine.

Radiation has a cumulative effect. The symptoms are slow to start and (for me at least) continue to accumulate even after you are through with all the treatments. My worst days were in the weeks following the end of treatment.

Keep your medicine chest well stocked with the recommended skin ointments, mouth rinses and pain meds. I appreciated having them for several weeks after I quit going to the RadOnc.

Be ready to be much more tired than usual. Radiation really taxes all your physical and emotional resources - leaving you feeling flat and tired. Drink more water. Then drink some more. Hydration cuts side effects dramatically. Fluids and calories - all you can get. You can do it. Be strong. Tom