Hello everyone!! Hope you had a good day. My sister met with the radiation oncologist today. Unfortunatly I had to work so I wasn't able to go to the appointment with her. Apparently the dr made her very scared listing the "possible" side effects. He mentioned things like not being able to swallow, maybe losing her taste forever, having a tight neck, having dry mouth and sores. I have heard about the sores the thick mucus the dry mouth afterwards the fatigue. I am just not to sure about the other side effects and was wondering if anyone had any insight? She is extremly afraid of having the treatment now. She doesn't want to do it but knows she has no choice. They are going to radiate her tongue and both sides of her neck I believe. I was also wondering if anyone has any suggestions on what to fill the medicine cabinet with? Creams for the burns etc. She is going for her mask fitting next week. They also want her to go to the dentist before radiation to take care of any teeth issues she may have because her jaw bone is going to be weak. Is this permanent? Sorry for the questions I just wasn't there to ask the dr and my sister is not wanting to talk about it righ now because she is scared. Thanks again for your support. I don't know where I would be without this site.

Informed consent requires the doctor to tell the patient every possible thing, no matter how remote the chance of it actually occurring to her. IMRT radiation has reduced many of the side effects substantially, but there will be some. This is normal, not unique to her, and we all deal with it. Bottom line, as cold as it may sound, she just has to accept that this is no walk in the park, and that there are likely some consequences to this NEEDED treatment. Whatever her new normal is after it all, she really won't know for quite awhile after treatments end. But whatever it is, we all deal with it and go on to productive lives.

Going to the dentist to ensure that everything in her mouth is 100% healthy, is normal, as somethings like having a tooth extracted after treatments causes significant complications. So she wills start treatment with everything the best it can be. If a tooth is determined to be marginal or unrestorable, it will likely be extracted. In most people with healthy mouths (meaning that they brush and floss routinely) this is not a big issue.

The area that is going to be radiated is likey more complex than you have described as IMRT radiation allows for hundreds of small beams of varying intensity and duration to be used vs. the old technique that I had where your whole head from the cheeks to my clavicles got nuked. Things have improved significantly and they now can map around her major salivary glands if possible depending on tumor location, the nerves and muscles that control the swallowing mechanism, the facial nerves and so much more.

I am going to let someone who has more recently been through treatment talk to the issues of cremes and lotions for the inevitable skin burning, which can vary wildly depending on her disease state and location.

It really won't get to be uncomfortable for the first couple of weeks, and after that she will feel lethargic, need pain meds for the sores that will likely develop in her mouth, and other things, that as they occur, you can come to the board with comments on. Tell her to enjoy eating without remorse right now, anything that makes her feel good, her ability to enjoy eating is going to go away for awhile during treatments, but will likely mostly return a month or two afterwards.

Susan, all the side effects the doctor mentioned are correct. Your sister needs to remember that these are usually temporary inconviences. Going thru chemo and rad is no picnic and yes she will probably struggle like most of us did. It is necessary and must be done to get well. Unfortunately, the side effects worsen as treatment progresses. Just because the doc was thorough and told her all about the side effects does not mean this will happen to her. Some patients are fortunate and sail right thru while others suffer the side effects. Everyone is different. Be glad the doctor is honest and gives her full info.

Teeth are very important to take care of during treatment. I did my best but radiation loosened my teeth and I had to have them removed last year. She should see the dentist immediately and get floride trays made to use daily. She will want to take care of any cavaties and have any teeth removed which could be problems later. This is very important that its taken care of before treatment starts. Radiation can cause some big problems with having dental work done after treatment.

Your sister should be taking soemone to all her doctor appointments. She probably heard the side effects and tuned out the rest. Thats what most people do so thats why its so important to have another set of ears there. She can also ask to record the appointment with a small tape recorder. The person that goes with her should be taking notes too. If someone had gone with her, you would have full info and not bother yoru sister with asking her a million questions about what happened at the appointment.

Dont worry about stocking up on creams. Thats something the doc will give her prescriptions for. There are many kinds of creams to help ease the skin irritaitons. Over the counter stuff isnt strong enough. Any cream or lotion should be put on only after radiation. Never put it on before going to treatment. Using the creams will help to prevent scarring. My neck was burned and had open wounds on it but I kept putting the cream on anyway and I have no scars at all.

As Brian mentioned, she should be eating as much as she wants now. Dont worry about calories. Her taste most probably will change and eating may become very difficult. So she should eat everythingnow and have no regrets or cravings later.

Hope this helps. So much to do before all this starts.

The oncologist is just listing possible scenarios. That does not mean that all of this will happen. You also have to distinguish short and long term effects. Both of these are different depending on the person and also on the what exactly is irradiated. Especially the latter is quite variable.
In the short term the radiation is miserable (after 3-4 weeks) and gets more miserable after it is finished. Sores, pain, no taste, mucous from hell etc. However most of that will pass. Taste generally comes back but it can take a long time. She might end up having a dry mouth, this is less of an issue with imrt but depends greatly on what exactly was zapped. There are several saliva glands (3 major pairs) that are in different locations.
That said the radiation is the life saver unless they were able to remove all the cancer surgically. Look at it this way yes it will make you likely miserable on the short term and there MAY be long term effects. Dry mouth, dental issues, altered taste. But look at it this way even if you have long term effects, you have to be alive to experience them! Radiation will give you that chance.
She will need effective pain control, mouth rinses, viscous lidocaine etc
At this point you have plenty of time to get ready. Have her eat plenty of her favorite foods now. After 2 weeks of rads it will all taste like wet wallpaper.
Check out the ocf website there is plenty of info there.
M

Boy you guys are quick. ......agree with all of the above

Thanks guys so much for the info and experiences. I am very grateful that all her dr's are what they call brutally honest. She is the type that could deal without the details. I agree with you all 100% about dealing with the side effects to have life. She isn't at that point yet. Her additude has been mostly negitive. So she thinks the worse is going to happen. In my eyes she has healed exceptionally well from her surgery which to me was an extreme surgery. I belive she will heal well with radiation. The dr also said they will do everything they could to reduce the pain which is great and he doesn't feel like she will need a PEG. That I was concerned about to. I would rather her have a PEG just in case, but she is being scene at one of the best CCC's so I hope they know. They want her to also start physical therapy for her neck. She doesn't have dental insurance so we have to figure that out also. I must say her teeth are not to good now so we will see what she will have to get done. Again thanks for the info and support. Being a caregiver and researcher for her is a tough job

Regarding the dental insurance: I don't have dental insurance either, however the dental treatment your sister might require could be seen as part of her overall treatment plan. My insurance company said they will cover the dental expenses directly related to my treatment. So it's best to check this out with your insurance company, you might be surprised.

Susan,

I think I fell in the middle of what most people go through here. I did not get a PEG. I had minor skin burn (like a sunburn) and only used over the counter stuff (Pure Aloe). I lost my taste but have since regained 95% of it. I never had the mucus issues and they did a great job preserving my salivary glands. I get dry mouth, but not real bad or for long periods. I eat with water around but can swallow almost everything.

I did get some very painful ulcers on the tongue and in my throat at the very end of treatment. I also suffered from a bout of depression about 1 month out of treatment (not like me at all).

So I ran into some of the issues that you can run into but not nearly as many as others. All in all it was a real pain in the ass but I was able to get back on my feet and back to a normal life fairly quickly.

Susan - nothing to add except good wishes and support, as all of these posters have summed it up beautifully.

Has your sister started radiation? How's she doing?

Please keep us informed!

David 2

I wish your sister just the best of everything and remember, we are all different and react differently to treatments.

Hey all!! Thanks so much for the support. My sister is due to start on the 17th. They mentioned doing to Erbitux and radiation for her which she is now considering. They said because of her age they want to be aggressive. She is going to call them tomorrow with some questions for this treatment and then make her decision. If anyone here has any info that would be great also. She did very well when they made the mask and gave her her first tattoo ever. That's a huge thing for her. I think she is finally calming down and being positive.