Thursday, April 03, 2008

Information for Lydia and others searching for answers

Lydia wrote a comment on the MayoClinic post, asking about more information about hair coming back after radiation, and how to deal with radiation side effects. The thing that helped me most to plan for side effects was to go to my nearest medical library, ask them for information on radiation side effects, and took the information they gave to me to my radiation oncologist to discuss which ones I would be dealing with.
One site that the library sent to me was MedlinePlus, where there is a Health Topic page on Radiation Therapy: http://www.nlm.nih.gov/medlineplus/radiationtherapy.html
You can also locate a library at MedlinePlus (either public or medical) that has said it would help you with medical questions: http://www.nlm.nih.gov/medlineplus/libraries.html
Another source of information for you might be a cancer support group, specifically one that deals with head/neck/oral cancer and its treatment. You can often find out how others have coped with cancer treatment and its long term effects. The group, Support for People with Oral, Head, and Neck Cancer [SPOHNC], has a page listing local chapters here: http://www.spohnc.org/localchapts.html
Keep asking your questions, and make sure you write down the answers you receive, so you can refer back to them later. I have found that the radiation oncology nurses are a goldmine of information and support - ask your questions to them as well as your oncologist. Your husband is very lucky to have your support on this difficult road that you both travel.
As to my individual case, in case this information is of use to someone else: Now that I am over a year out from the last radiation treatment, I find that changes are not coming as fast as they were right after treatment ended. Some things, such as mouth soreness, have eased up in my case, although I cannot yet tolerate real crunchy or hard food, and some days tomatoes still make me get mouth sores (but hey, I was allergic if I ate too many tomatoes before the cancer, so no biggie.) I doubt that I will be able to do spicy foods or alcohol ever again - but I have had enough of both of those before, so not too big a deal. Lack of taste has eased up, but still bad enough that I eat by texture (no meat, and other things are on a case-by-case basis). My saliva level has improved, but I still shy away from sweets, bready foods, and sugar drinks, since my goal is to keep my teeth. I have some pain to the touch around the jaw that received most of the radiation, so I still don't hug people on that side, and have to cover my face up against extreme cold and hot weather. The hair that I lost on the left side of my head has just about all grown back, with the exception of a strip that follows the facial nerve to the skull base - that is still bare, and only serves to drive my hairdresser crazy when I get a haircut (she has a hard time getting both sides even now).

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