Hi all --

We had a first check-up with Barry's ENT surgeon yesterday afternoon. (Recall she's the one who had HNC and radiation herself, so knows what it's like personally).

First, she told us that she had been getting regular updates from Hopkins during Barry's treatment, so knew about his blood infection and pneumonia hospitalizations, HPV+ status, blood work, etc. She joked that in the past sending someone to Hopkins was like sending them into a "black hole" but that they'd finally wised up and now kept referring doctors in the loop. Anyway, this cut down on a lot of our explanations, Barry only needed to bring her up to date on his swallowing test last week and his RO's exam.

She did an external exam and felt his nodes and looked into his mouth -- said the nodes on right side were "very small" but there might be a bit of remaining inflammation. Mouth looked good, no sores, some inflammation, good moisture. She then did an endoscopic exam, as she wanted to see his base of tongue (where the remaining tumor was after his tonsillectomy) and also, how his epiglottis was functioning since the swallowing test had shown some issues. She positioned the monitor so that he could see what was happening when he spoke, coughed and swallowed. As he spoke sometimes bits of saliva would start to go past the epiglottis into his larynx; it seemed like he was unaware of this. She told him to lightly "cough" to clear it out when he heard his voice get "gravelly" or "bubbly." We could see when he did that, the saliva would get forced back into his pharynx and not get aspirated. However it was not an "automatic" thing like it might be for someone who had not had radiation. She did say that this will improve as the inflammtion resolves and any "numbed" nerve endings heal -- in the meantime to be careful and to practice swallowing, Again she invoked some referrals she is monitoring who stopped swallowing during treatment & lost the ability though now responding to swallowing therapy.

She then looked at the base of his tongue and it is apparent that the right side is now symmetrical with the left (unaffected) side. However she also said that a "formal" assssment of treatment success should be delayed for a few weeks to be sure all inflammation is gone. (That will be done at Hopkins, probably with PET scan and perhaps biopsy).

She then had Barry gone to the audiologist for a hearing test to see if there was any radiation damage to his inner ear. Happily this showed no real change, just a decline of ~10% at 8000 Hz in his right ear which may not even be due to radiation, and in any case, well above pitch of human speech .

We then got back with the ENT to discuss next steps. She agreed with Hopkins that any additional surgery should be done only if there was evidence that Barry had not responded to the chemoradiation. We will consult with her after he gets reviewed by his RO in 3 weeks and the Hopkins surgeon (who would do biopsies if any were ordered) in a month's time.

We then discussed side-effects that might crop up in near future -- she advised Barry to continue to use Thera-bite or do other anti-trismus exercises for at least a year. (She has some trismus herself now, mostly due to letting it creep up on her after treatment.) She wanted him to get a Doppler blood-flow evaluation in his right carotid, since one cancerous node had been next to that artery and had actually caused some narrowing. This would be a base-line and then this would need to be re-checked at intervals. She was less concerned over dental or necrosis issues as he had the tomo radiation which avoided a lot of the front of his mouth and his salivary function is good. We also discussed diet and excercise, weight gain, etc.

All in all, a pretty good visit -- we will see her again in about 6 weeks and hope at that time to have good news on the results of his treatment!

It is wonderful to have a very supportive doctor when you are gong through all this -- Barry has been very fortunate that all of his doctors and nurses have been really great, it has made a difficult 3 months much more bearable...

Gail and Barry


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!