OP Supporting Member (50+ posts) Joined: Feb 2013 Posts: 78 | Thanks for the responses and ideas. I went to an appt with the MO. Looking in my mouth she said it looks like radiation recall. However, she said radiation recall usually happens shortly after treatment or when chemotherapy is used post treatment. She thinks the pain I'm feeling in the jaw and ear is due to referred pain as the location of the largest sore (1cm diameter) is near the tonsil which can cause pain in other areas. She swabbed my mouth to test for HSV, which can cause mouth sores and can be often activated in asymptomatic individuals post radiation. However, post treatment we tested some slow to heal mouth sores for the same reason for HSV and they were negative. I'm going to see her in 1-2wks if the sores haven't healed. I was also referred to a neurological pain doc to have him have a look at symptoms as well. I'm also experiencing Lhermitte's sign (although its not too strong) and it will be useful to get a neurological doc's perspective on it.
I'm feeling better the past day or so; it seems the sore is healing. So hopefully just a fluke. Most of the symptoms have subsided to some degree. If it just referred pain, its pretty crazy how many different areas of the face a simple large sore in the right place in the mouth can impact.
Andrew age 25
early 10/12 - enlarged lymph node area 01/13 SCC of L tonsil, L BOT, 2 L lymph nodes stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT 4/13 TX finished 7/13 PET/CT - NED!
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