Dec 24, 2012 - 12:20 pm
I have found the ongoing "lists" on this website (that everyone contributes to, sort of like a wikipedia work in progress) very useful. I am 7 months out from radiation (33) and erbitux (8 weeks) treatment. These are the main things I'd wish they had told me (but they didn't). This list is probably only relevant to those who have (or will have) the combination of radiation and chemotherapy treatments, and, like everything else on this website, varies alot across individuals.
1. Mucus production, mouth sores, pain, fatigue can get much worse in the 2-3 weeks following radiation ending. Mucus machine should be ordered as soon as possible when needed (health insurance paid mine).
2. Fatigue continues for 6 months, at least. As in daily naps.
3. Some time after radiation ends, after the major mouth sores clear up, small white pearly sores sometimes pop up on tongue. These are sometimes painful, they expand, then disappear. They can continue for 2-3 years according to my radiologist. At 7 months out, I currently have them nearly constantly. Radiologist informed me they are from recovery of salivary glands. These sores can affect one's ability and motivation for eating, resulting in unexpected weight loss. Nothing can be done about them, other than the usual baking soda/salt mouth wash for temporary relief.
4. For those with metastisized tumors: discoloration on the sides of the neck receiving the most radiation often becomes red and inflamed, itching, and uncomfortable, necessitating visit to cancer dermatologist. Labeled radiation dermatitis. Can become chronic. Some cortisone creams (which can be done only temporarily, due to the side effects) relieve itching and redness.
5. Relief from dry mouth can be unexpectedly slow (7 months' out, still carrying water bottles for 5 minute shopping trips). Biotene sprays are a necessity.
6. Neck pain, stiffness, and other symptoms associated with late-radiation fibrosis can show up 6-12 months following last radiation. My physical therapist prescribed moist heat treatment and exercises. My recent experience with thermalon neck wrap (moist heat neck and shoulder wrap) created brown burn marks and dermatitis, despite following directions to microwave wrap precisely. Be forewarned. Physical therapist exercises seem useful,but they are not easily available online. Another pain in the neck.
7. For erbitux patients & radiation treatment patients: overall skin condition needs daily (up to 3 times daily, actually) moisturizing all over the body. Healing of small scrapes/inadvertent burns, etc., is slower than expected.
Looking forward to having you all add to my list! Happy holidays (submitted on December 24, 2012). Best to you all, Sunshine.