Team Meetings

           Monday - The oncologist's office called to see what we had decided about the Cetuximab, an immunological drug that is used in conjunction with radiation to augment the effectiveness; Cindy has decided to have this treatment.  There will be three or four doses which take about an hour each to infuse.  It has its own set of side effects but seems a good choice.

            Cindy had an appointment with Anneke, an oncology social worker basically concerned with the patient's physical, social and psychic support during the treatment.  She seemed satisfied that, for the moment, Cindy was not stressed by the upcoming treatment nor lacking in support.  As befits a social worker, she was chatty and we talked about her Dutch first name and Boer Dutch last name, results of her birth during her parent's assignment in the Netherlands and her husband's South African heritage.  Her kids have not been similarly blessed.

            We were asked to stop down to the radiation shop after the appointment with Anneke to see Elaine, who seems to be the patient support nurse there.  She wanted to talk about nutrition and eating problems, and referred Cindy to Swati, a nutritionist.

            Thursday - When we called Swati, she seemed slightly puzzled about what she could do for Cindy now but gamely made an appointment.  We were again confused in finding our way about the three sections of the Reston Hospital, but managed to find Registration.  Unlike the appointments with such weighty and ominous groups like radiation and oncology, registering for a nutrition session took a 15 minute paperwork drill complete with creating the ID wristlet (which Cindy declined wearing).

            Anyway, we talked with Swati about nutrition matters and she gave Cindy a couple of high protein drink sample bottles (she had a surplus anyway).  She seemed impressed with Cindy's recent healthful meals (your humble correspondent was appropriately modest).  She encouraged Cindy to return if she had trouble eating.

            Friday - The caller (Cindy/Cynthia) said she was a "case manager" and wanted to talk with Lucinda.  One worried about a scam,  carefully answered and waited for the request for the SSN and bank account number.  She was from Blue Cross and wanted to help (suspicion not abated).  However, she seemed genuine and had been prompted by the oncologist's request for approval of Cetuximab.  She was knowledgeable and went through her list of questions,including whether there were plans for a "GT" (gastrostomy tube) to feed Cindy.  We hoped not.  She's sending some material on coping with radiation treatment, gave us her direct line and asked that we call if we had any concerns.  We were stunned that Blue Cross was so proactive and are uneasy with implications of all these separate health entities contacting Cindy with concerns about the side effects of the treatment.

            The theme this week is that everyone involved is concerned that someone like Cindy, borderline underweight, will be challenged to maintain her health and psyche when suffering with the effects of this treatment.  We're hoping that this is an assumption about age-related decrepitude rather than the norm for this treatment, but it certainly focuses one's attention on getting food into the patient. 
   

The News So Far

           

           Last November, Cindy noticed a swelling on the left side of her neck and was referred to the head and neck center at the Baltimore Medical Center and was examined in December.  Cancer in the lymph node was tentatively diagnosed; a CAT scan, PET scan and other tests confirmed it.

            A surgeon operated on January 23rd removing the swollen lymph node from the neck and four spots under the left side of the chin which showed on the PET scan.  Samples taken from the tongue and throat were, thankfully, negative but the resulting soreness made for slow eating.  The surgeon subsequently recommended radiation treatment; she also recommended chemotherapy if Cindy could stand it.  The chemotherapy would have a 6 to 8 percent benefit beyond the radiation.  She referred Cindy to Arlington & Reston Radiation Oncology.   

            We saw the radiologist on Friday, February 15th.  Cindy is scheduled for 30 radiation sessions over six weeks starting March 18th.  Still a question on chemo, which is done simultaneously with radiation to add 6 to 12 percent benefit to the areas addressed by the radiation.  When we asked about chemo, the radiologist demurred on a direct answer but said he wouldn't recommend chemo for his mother under the same circumstances; we'll await an appointment with an oncologist for more insight.  (The chemo would be done by a different doctor/practice.)  The potential side-effects from radiation alone are daunting (including a stomach tube if the patient can't get enough food down).  Going to see if we can fatten Cindy up a bit in the next couple of weeks.

            Cindy saw the oncologist on March 1^st.  He explained the diagnosis and recommended either chemotherapy or an alternative immunological drug.  The latter isn’t chemo per se, but side effects are similar if not as severe. 

            We’re impressed with the collection of specialties involved in this.  On the 4^th, Cindy sees the “oncology social worker” and next week the speech and swallowing practitioner.