Hi Jamie,
It wasn't until almost the end of treatment that I had any issues with the skin on my neck and it manifested itself as a mild sunburn. There is a wide range of reaction to radiation. DO NOT put anything on the skin prior to getting treated (the skin should be dry). It may act as a "bolus" and intensify the radiation effect. Any lotions should be applied just after treatment. The stuff they gave me was called Radiacare - it was mainly aloe vera as I recall -it might have had vitamin E in it as well.

I had dizzy spells a lot and almost fainted many times dealing treatment and shortly after. These are fairly normal things. This is a hard treatment - worse than the disease in many ways. I also had to sit in the shower, especially towards the end of treatment. She may have to plan her day around the shower, picking the time of highest energy level to take one. Energy management is critical when in treatment.

She is very early in the process and it usually gets worse as time goes on, infact the turning point won't be for some time AFTER they have stopped radiation. It is normal to get pretty beat up from this. I know it is disconcerting but it is a reality. The best thing for you to do is read up on it, learn how to watch for different symptoms like thrush, etc. Keep a daily log of food and liquid consumption, medications taken, what worked and what didn't. Stay in touch with the doctors or advice nurses with any issues, fears or concerns. Take detailed notes at all doctor visits. Talk to the nutritionist weekly. Try to keep a positive attitude. It will not help her if you are falling apart or panicking.

The Cisplatin is an enhancer for the radiation. It oxygenates the tissues and makes the radiation more effective. I did not have the other chemo so I have knowledge to share. The nausea should get better the further away she gets from the infusion. Not all days will be awful - some will be just fair.

The book I have recommended lately, "Living Well With Cancer" covers all of these things (and much more) in great detail. My wife this book and gave it to me and it was invaluable IMHO. There have been some recent posts describing the book in detail and how to order it. If you order through the OCF link to Amazon , the site a gets a small percentage which helps Brian keep the door open. See the thread in introductions "your advice on "city of hope", or another centre in los angeles".

Jamie,

As the Medical Oncologist explained to me, the 5FU is used to decrease the tumors and micromets while the Cisplatin enhances the radiation, as Gary explains above. Many people have mentioned no bad effects from the 5FU but I really struggled. I received 3 bags of fluid daily from the first week of chemo. My primary difficulty was creatinine and since Cisplatin has shown to be hard on the kidneys, they couldn't keep giving it until my creatinine came down and fluids was about the only way. I then got dehydrated and that caused a lot of dizziness when I stood up. I tapered down to 2 bags a day from about 2 weeks post treatment and this lasted for almost 4 months. I found that regular hydration was the best overall treatment for me. Dehydration really compounded my side effects from everything.

My wife often joked about the 5FU being called that because you were F.U. for 5 days. I had a friend on it continuously for almost 5 months and had little or no discomfort the entire time.

Ed

Hi Jbenton.

I am failry new here myself.I know absolutely nothing about oral cancer and just seem to ask questions stiil. I'm not very helpful yet...

My best friend's husband is why I am here. He was recently DX with Stage 1 oral cancer. On the tongue. He was a heavy tobacco chewer.

I pray the best for your mom and for your strength and love for her.

I also used BIAFINE but unfortunately wasn't given it until my neck was very red and couldn't turn my head. It was very effective and I never blistered. It is not supposed to be used on open sores. It was very new at the time I had radiation. Actually, I think the literature said you were supposed to start using it before you had radiation to help prevent the burns and continue after each treatment. It is a deep wound dressing and therefore good on healing all those scars from the neck dissections. Ask your radiation dr. about it.

Take care,
Eileen

I also used BIAFINE but unfortunately wasn't given it until my neck was very red and couldn't turn my head. It was very effective and I never blistered. It is not supposed to be used on open sores. It was very new at the time I had radiation. Actually, I think the literature said you were supposed to start using it before you had radiation to help prevent the burns and continue after each treatment. It is a deep wound dressing and therefore good on healing all those scars from the neck dissections. Ask your radiation dr. about it.

Take care,
Eileen

One other thing I forgot to mention DO NOT SCRATCH IT (your neck that is) no matter how itchy it gets. They gave me this prescription cream called Desonide 0.05% and it helped with that problem. Any kind of moisterizers would probably work but I would avoid oil or petroleum based ones.

5FU - that's pretty funny Ed!!! Where DO they get the names for these things anyway?!?!

ok guys, you may have told me before, but now how about the inside of the mouth, the burning and discomfort? the nurse told her to mix baking soda,tsp salt and water and rinse, sounds harsh. i think the nausea has somewhat subsided, however she couldnt sleep last night because of the burning. she finally asked for pain pills today and when i brought them to her she was fast asleep. let me know... thanks

I can't even imagine rinsing with anything with salt in it during the post Tx phase. Even a 1% saline solution burned like heck. All the more power to you if you can get away with it.

I rinsed my mouth with baking soda, salt, and water after treatment. Believe it or not it didn't burn. A lot of other things did. I think it helped the healing. Mary Lee

Hi Jamie,

I used a solution of baking soda and water which seemed to help soothe the inside of my mouth. Tell your mom to hang in there - it does get better with time.

Nancy