Just wanted to update everyone on my sister, Reagan. We went to her first radiation consult. The man was very nice and insisted she get a dental visit in the next week before they start. He really downplayed the side effects. Told her she might have some fatigue and would likely end up with dry mouth. I asked if mucositis is less of a problem when the radiation is directed at the salivary gland vs. the tongue or throat and he said this is an easier area to work on. I asked about weight loss as she's already extremely thin and he said she may lose 5 pounds or so. Sheesh - I hope it all goes as easy as that. She needs seven weeks of treatment. He didn't mention amifostene but I asked as I had some articles on it. He said she could certainly try it although many find it hard to cope with (as I've seen here). I guess it's worth a try anyway. Next stop is Monday to try to get the CICP program to refer her to a dentist ASAP. Thanks again for all the support here!

Robin
The Doc is definately downplaying the side effects but, no need to scare Reagan at this point. If there is any way you can get her to bulk up just now before starting treament please do so . Try the milk shake recipe it has a ton of calories.
Amifostine is absolutely worth trying , she may be one of the lucky ones who can tolerate it, even a few treatments can help.
She is lucky to have you to care for her .

take Care
Marica

Hi again Robin. Yes he is downplaying it. My O said a small sore throat. Well this is the sore throat from the other side and getting worse everyday. I agree with Marcia though...don't tell your sister.

As for weight I have gained weight. I live on shakes with protein powder in them and I must be taking in twice the calories I was before the rads started.

I don't understand doctors but I do think they sometimes just want the patient to feel optimistic and not run away scared and frightened. I will pray for you both.

For comfort and strength,
Barbara~

Marcia and Barbara: I do appreciate the thoughts and prayers more than I can say! I have printed out so much good information from this site for her. I agree the doctors probably don't want to set you up to freak out about all the side effects as everyone deals with it differently. I'm guessing that was his reason. It's encouraging to hear of someone who hasn't lost a ton of weight. I did give Reagan info on the PEG just to get her used to the idea if it comes to that. Something like that is very frightening when you first hear about it. Thanks again for the encouragement!

Each individual is different in how they respond to information. For some (like me) who are analytical and think if they KNOW what might come, they'll be fine, all the data is good. For others (like Dad--the actual patient) it just scared the beejesus out of him. Between the two of us, however, we got the job done. Offer info, question & listen to the docs, respect that it's your sister's battle and help her fight it in her way. Your support means the world to her. Hang in there. Caregiving is tough work, but very rewarding. Your sis is lucky to have you.

Robin, I think your research on behalf of your sis is great. With you being informed, your sister has a "sounding board" [other than medical people] to talk to and lean on.What a wonderful thing for you to do. Your research will also help you help her if the Rad. gets tougher than the Doc is saying. Good luck to you both and keep posting. Amy

Well, I talked to my mom today and apparently all the info I printed out for my sister totally freaked her out. I never, ever meant for it to do that! I am one of those people that wants all the info I can get about things. I did try to be careful about what I printed out - including things about salt water gargles and things that can help reduce side effects. Anyone with any advice here? If she really doesn't want to know anything - what are the essentials she's going to absolutely NEED to know in order to get through seven weeks of radiation treatment?

Hello Robin,

Not all of us suffer from some of the side effects of treatment. I had 33 IMRT radiation treatments with NO side effects. I often wondered if the machine was actualy on? When was the hammer going to fall? It never did!!
If she does suffer some of them she can overcome them the same as many members of this forum.

Some people don't want to know what they have, treatment options etc. I have two older sisters who survived brest cancer. neither of them could tell me what kind of cancer they had or what chemo drugs they received. Kind of like putting the blinders on and hoping the doc knows best.
I could never understand that but then again theres alot I don't understand!!

Danny Boy