Hi again --

Thought folks would like an update -- I am now one week out from treatment. My throat is still very sore and mouth also, though this last has eased some in the last day or so. Still on the patch and taking Tylenol if I need to before eating (with med onc's permission, as long as I check my temp beforehand). Today however was the first day that it didn't feel worse than the day before, but a tiny bit better. Hope this is real -- my dental onc whom we saw Tuesday said that one week out is when tissue healing starts but that it might be a couple weeks after that before I actually am aware of any change. He has just written a paper for Lancet on side-effects of head/neck cancer radiation so has been studtying this a lot.

Still eating soft foods -- I am getting tired of soups and shakes but taking in about the number of calories they want me to eat (at least 1800/day) so maybe I will regain some weight. I was losing very gradually through the first 6 weeks of radiation, only 1-2 pounds/week, but when I got the staph infection and then the serious mouth soreness from last three conventional rad treatments, I lost almost 5 pounds in a week! My energy levels are not bad and have never dropped as low as I expected -- we took the dogs for a walk in the woods yesterday (although only 1/2 the distance I would have gone pre-treatment) and I am starting to exercise a bit with light weights for my upper body which is looking pretty thin!

Still taking Mucinex as I get occasional bouts of deep chest phelgm which looks like the stuff I had when the infection was active. They did another blood culture Tuesday but results not in yet; hope the staph is gone! Haven't been sleeping too well (which might be due to the patch, when I first used it it made me a bit agitated and I had weird dreams!) so am taking 1/2 Ativan before bed-time and that has helped (MO suggested this).

Had good consult with my medical onc Tuesday as well. She says they are getting really excellent results from the IMRT and now, the tomo-IMRT re control of HNC cancer -- significant improvement on older machines -- and that the tomo seems to give much fewer side effects though she is not sure there's any long-term clinical advantage (too soon to tell). She encouraged me to go into the HPV-16 vaccine trial but that will be 4 months from now.

Our RO nurse called yesterday and said my WBC was now in normal range and RBC/hemoglobin almost there so I am not as concerned about catching some illness from other people . Other than the blood count depression my chemotherapy was really a non-event; very happy I opted for the carbo as opposed to the cisplatin.

Will meet with RO in one month to look at recovery from side effects, and then again in 2 months for exam for response of the cancer to treatment. After that I will meet again with the surgeon and he will decide whether he needs to do a PET scan or a biopsy; it is unlikely I will need further surgery (per my MO and RO) but it is too soon to address this. The dental onc did check BOT area and also felt the lymph nodes on right side and said everything looked/felt very small which is encouraging.

We are starting to plan a bird-watching trip to Brazil in March so I have something to look forward to!

Cheers,
Barry

Dx 6/21/05 Stage IV SCC right tonsil, base of tongue & 2 lymph nodes, HPV-16 + tumor, tonsillectomy + 33 days radiation (30 on tomo-therapy machine) and 7 weekly doses carboplatin, finished treatment 9/29 at Johns Hopkins