Radiation Therapy Head & Neck - how bad is it?

[kylieharrison]

Hi there After being diagnosed with Adenocarcinoma Maxilla, my Dad underwent a partial maxillectomy and bone/tissue tansfer from his hip 3 weeks ago. He is doing pretty well and apart from a few less teeth, some scarring and being 4 kgs lighter thanks to the nasogastric tube. He spent the first 2 days after the intial surgery in the ICU. We thought that the operation and recovery was going to be the worst part of his treatment. But he is doing better than we coudl ever have expected...so now I am worried that the radiation therapy is going to be the worst part. He will probably start radiation in about 2 weeks time, and I fully expect him to have to go back on the nasogastric tube due to the painful side effects of the therapy. With a 6 week treatment schedule, it is unlikely he will be eating Christmas dinner (although I feel blessed just knowing he will even be here for Christmas). From everything I have read and from the one person I have spoken to, the side effects of radiation therapy to the head region are awful. Extreme pain and burning in the mouth, mouth ulcers, loss of saliva and taste. Eating and drinking is too painful and quality of life diminished during the treatment period and for some time after. I was wondering if anyone could share their experience with head/neck radiation side effects. I want to get a real picture of how bad its going to be for Dad...was there anything you did/took to alleviate some of the symptoms? When did they start? How long did they last? were you offered protective drugs like Ethyol (Amifostine) or treatment drugs like Kepivance (Palimfermin)? Throughout the whole journey, we have always been given the 'worst case sceanrio' by the doctors. I guess now I just want to know what that looks like from someone who has had experience... Thanks everyone.

[Sueblue]

Hi Kylie Just wanted to say thanks for asking these questions. I have been wondering the same. I have Non-Hodgkins Lymphoma in my neck, have had my final chemo and am waiting to see the radiation oncologist later this week. My haematologist thinks I will have daily radiation treatment to my neck for 2 weeks, beginning mid-late November. I will ask the radiation oncolologist the questions you have raised, and let you know his reply 🙂

[kylieharrison]

Thanks Sue. It's hard because Dads specialists come to see him before visiting hours...the oncologist came yesterday morning so I wasn't there to be able to ask these questions (and dad is either too shy or doesn't think to ask). I am trying to schedule some time with the oncologist but I'd like to hear from different people and different experiences. I look forward to hearing back from you. All the very best in the meantime!