Linda & Todd --

You need o meet with your oncology nurse and doctor and get !- adequate anti-nausea relief (what is Todd taking?) and 2) adequate pain relief (what are they giving him?)

Re te nti-nausea, he should be getting a serotonin-uptake-type drug by IV before chemo infusion (probably Anzemet, which lasts for 14 hours) and then, afterwards eiher Anzmet tabs, Zofran (8 hours) or Kytril. (Compazine may be given as well -- both drugs can be taken at same time -- but Compazine is NOT good enough on its own in almost all patients to stave off nausea from Cis- or Carboplatin.) Anzemet, Zofran and Kytril are expensive drugs but they can completely control nausea in *most* patients. Barry told me "they were worth every penny and then some!" Our chemo nurse at Hopkins (in the "chemo class" they give before treatment) said -- "there is no excuse for acute nausea anymore with chemotherapy - we have the ability to control it, please talk to us immediately if we are not doing our job." That having been said, a few patients are not responsiive or are allergic to these drugs and for these they try acupuncture, so this might be investigated if Todd doesn't respond to the usual drugs.

Re pain -- first, make sure Todd does not have thrush (yeast infection) which often crops up at tis stage. It can cause immediate burning pain upon eating, well before the onset of radiation-induced mouth sores. Thrush can be controlled by both oral and topical meds, but usually not eliminated until after end of radiation. You just try to keep it under control...

Mucositis can be helped by GelCare -- or in its over-the-counter form -- Rincinol; a mouth rinse of salt/soda repeated many times a day; a rinse of 5% l-glutamine (get powder at GNC). Wtahc the mouth-numbing solutions, they can numb too much, leading to food aspiration (which happened to my husband).

The main thing is ADEQUATE PAIN CONTROL. Some doctors are really bad on this (here's your bullet, just bite on it...) It is almost certain Todd will need to go onto opiate drugs, either Oxycodone or its timed-release form, Oxycontine. My husband didn't do too well on the former (constipation, sleepiness) and did much better on fentynal patch (Duragesic) -- but folks vary in their reaction. You as care-giver may have to be very vigorous and insistant that Todd get the pain relief that he is due under patient's rights.

This treatment is hard enough without making it worse by inadequate nausea and pain medication. If someone has to stop treatment because of this, then it is (in most cases) a failure of the medical team.

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!