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starting radiation next week

ilevin
Posts: 25
Joined: Mar 2001

First I want to say thank you to everyone who has posted to this group. It has been so helpful for me to read about the experiences of others. I had a squamous cell tumor on my tongue removed 13 years ago (age 32 nonsmoker) - I lost about 1/5 of my tongue. Also a modified radical on the right neck. No nodes were involved so I didn't have radiation. A new cancer appeared last December and I had surgery on what appeared to be a localized area. WRONG! It was back in March and led to more extensive surgery (I now have about 1/2 my tongue remaining) and left side modified dissection. There were 2 positive nodes so radiation is necessary this time. Right now I'm feeling pretty well. Talking somewhat and eating soft foods. However, I'm not looking forward to the next 6 weeks. Again it has been so helpful for me to read your experiences and especially your positive attitudes. I just wanted to say hello and I am looking forward to future discussions.
ilene

sweter3
Posts: 6
Joined: Oct 2000

Good Luck!
Radiation is very hard but you can get through it.
If you need someone to complain to.. I'll listen
Again , Good Luck
Tom

atmman
Posts: 1
Joined: Jun 2002

I just started radiation I am now on my 4th treatment. I could tell by the date of your e mail you are probably through. Tell me what to expect. Also I cant believe your cancer returned. Hope you are well now.

phattpig's picture
phattpig
Posts: 29
Joined: Apr 2002

Atmman,

Good luck on your treatments, just remember, no matter how bad it gets, you will get through it. I have heard tales of pain, and burning from others who have gone thru radiation, but I don't really remember that much pain with mine. Maybe I am blocking out the pain, but to me it really wasn't that bad. I did have some burning, what felt like a severe sunburn, and the skin around my neck is tighter than it was before. Please, if I can give you any more info, just email me. Again, good luck to you.

John

ilevin
Posts: 25
Joined: Mar 2001

I finished my radiation in July 2001. I had a terrible reaction to it, worse than many people and the worst case of burn the doctors here had ever seen. A year ago this week I began a 3 month hospital stay. I still had 2 weeks of radiation to go which I finished in the hospital. I was unable to swallow anything for months and finally had a feeding tube put in. The tube came out the end of October and I can eat soft foods with lots of moisture and drink water constantly. I can't eat anything with any spice or it burns. The reaction varies so much with each individual. Some people say they didn't even miss work during radiation whereas I was so sick I had to be taken there in a wheelchair. Most everyone I have heard from has some level of permanent side effects ranging from mild dryness in the mouth to having to radically adjust their eating as I have to be able to eat little or nothing. I hope your treatment goes well for you. If you do start having problems tell your doctors immediately and insist that they make referrals where appropriate. For example, one side effect is difficulty opening the jaw. This may be somewhat mitigated by early intervention by a speech therapist and use of a therabite. Its better to start these treatments sooner rather than later.
Good luck. Email me if you would like to keep in touch.
ilene

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