My wife completed 35 XRT radiation and 4 Cisplatin treatments in July 2005 for left oral tongue cancer, T2N1M0, after partial glossectomy to remove the tumor.

She underwent additional tongue surgery at the tumor site in December 2006 to remove "hard tissue" at the original tumor site which turned out to be, to our great relief, scar tissue.

Because the tongue had already been irradiated, the tongue has never really healed fully post the second surgery. As a result our ENT wants to see her monthly.

Currently she is in pain at all time. She remains on Fentynal, 12 microgram dosage, although we got this down from the 100 microgram dosage post radiation in 2005.

Because of the pain she has difficulty eating and she takes morphine, 15 mg dose, before eating, twice daily. Swallowing is still so so and sometimes she chokes on food even though she had eight dilations of the esophagus in 2005-2006 while she had a peg tube.

About a year ago she was experiencing wild swings in body temperature and very severe leg cramps.

We went to go see an internist who did blood work and checked TSH levels. The thyroid gland had been affected by the radiation treatments and she was prescribed, Levothyroxine, which was adjusted to 100 mg per current daily dosage. Symptoms improved for a while as the TSH level according to follow up visits with our internist had been brought back to within normal limits.

For the last two months however she has been complaining of extreme tiredness, wild swings in body temperature and again leg cramps.

Because of the radiation, the soft tissue in her mouth and lips are changing and the lips have severe blistering that will not heal. During our last visit our RO was intrigued, because of the unusual conditions, and he proceeded to take pictures of the inside of the mouth and recommended hyperbaric treatment to improve healing.

Our pain management doctor referred us to a specialist for oralfacial pain at the school of dentistry associated with our cancer treatment center. We will be seeing him soon.

I would appreciate hearing from other members who may have experienced similar issues.

For the last three years all CTs and PET/CT have been clear. No sign of cancer anywhere.

Irrespective of all difficulties, she is here and life is good. We are lucky.