I will be startting treament in a week and they will perform Radiation with the IMRT Machine with high doeses to my tongue, and lower doses to my neck. Had surgery done last mth to remove partial on one side of my tongue.

What can I expect as to side effects during and long term? I met with the OCN RN and the Radialogist, and staff, and they informed me with reading materials, a video, and met with me. I was told that side effects vary from person to person, but the long term side effect is partial saliva gland damage. Just wondering who went through it and any positive experinces anyone went through? I know that I must do the Radiation if I want to have a better chance of survival, and hope it kills the cancer cells.

Side effects do vary from person to person, and you will see answers to this question vary widely from the people here that have gone through it.

First a couple of questions for you:
Do you have a PEG (feeding tube) or have you discussed this with your doctors?

Eating may and more than likely will become a problem as the radiation progresses. Protein intake is key and keeping you daily calories up will help.

Are you going to be getting adjunctive chemotherapy with your radiation?

I was diagnosed in August, had some kind of sore since May of 07, got surgery, now radiation will start soon. No one said anything about a feeding tube to me, just severe dry mouth and skin issues, and possible severe mouth ulcers. I also asked if I will be able to speak or need a speech therepist, they said I will be able to speak. I am hoping the Radiation doesn't go bad for me. I was told by the ENT and Radiologist that Stage 1 only gets surgery and Radiation, and depends on where tumor is. I been getting CT scans, no Pet scans.

I just finished my 10 day od Rad. No problems yet. Food tastes like crap but I am eating fish/chicken, beans, milkshakes. Keeping the proteins in and trying to keep my weight up. Also doing Cisplatin. Did not need any surgery, tumor is shrinking....Drs are pleased with progress. Taking one day at a time, feeling pretty good but realize it will get tougher...I am ready for it. Others that have completed treatments can provide better info.

Good luck...this is a great place to get info as there are very knowledable and caring people here.

I will be on soy shakes by either Genisoy or Naturade, it has many vitamins and minerals in it. I will probably puree everything and make them into shakes if I am able to, God Willing.

Whitenoise,are you able to eat any solids now post-surgery? Or is all of your intake from the soy shakes?

Whitenoise,

You didn't mention it but I assume your doc advised that the radiation will do a number on your tastebuds. You should be aware of this if you are not already as it can be quite a shock even when you know in advance. You will see that things you were used to tasting a certain way for so many years will suddenly take on a whole new flavor. The exact extent of damage, change and taste return is different for everyone. There is really no way to make a blanket statement to cover the details of it.

Bill D.

White: Read my 'update on Buzz' topic for other information.

Bill Van Horn: SO good to hear from you and that you're doing well!


God bless!

Lois & Buzz in NC

> Just wondering who went through it and any positive experinces anyone went through?

I had three rounds of multi-drug chemo, Erbitux, plus 35x IMRT. One thing that seemed to help me was subcutaneous Amifostine injections before each IMRT. Talk to your MO and/or RO about it...even if you have already started treatment w/o it.

-Bob