"Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | When my husband was being treated up at Hopkins, there were two other folks who were being treated at same time who had unknown primaries. The treatment plans were more-or-less the same for them as for Barry -- and included bilateral neck radiation as well as radiation to oropharynx, using tomoTherapy or conventional IMRT (latter for an ongoing trial with Tarceva, a new drug), plus concurrent chemo with carbo- or cisplatin (Tarceva trial).
We ran into one of these folks last month when up for Barry's check-up and she had just had her 3-month PET/CT and all looked good. She was eating soft foods and was about to stop using her PEG. She said that at the beginning she had been terrified of the treatment and her future but now saw that there was, in truth, life ahead of her and she was very happy she had elected to go through with the "full court press." (She too had had several surgeries at another facility which had failed to find the primary tumor, thus the referral to Hopkins).
So you guys have to not only focus on your "job" for the next two months -- and believe me, it is your JOB and a tough one at that -- but on the better times to come afterwards.
Best of luck, be strong, Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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