Unfortunately, I don't have much good news to share with all of you. Katie's tumor continues to grow, despite the chemo she's been on for the last 4-6 weeks (Erbitux, Cisplatin, Taxitere). Scans show that it's progressed into other parts of her tongue and is pushing against her larynx quite a bit. You can actually feel the tumor when you put your finger on her throat.

There's also quite a bit of fluid collection in the lower neck area and that's also growing larger and may eventually burst.

Surgery continues to not be an option for Katie. Surgery would involve a total glossectomy, loss of the larynx, and a good portion of her jaw. With only a 5% chance of getting all the cancer, it's not worth it. The rest of her life would be irrevocably changed -- loss of voice, loss of swallowing; facial disfigurement; endless pain. Quality of life is an important factor in this decision. We are in agreement with the surgeon that it's just not an option for us.

I'm growing alarmed that we appear to be running out of options. The chemo and radiation aren't working. Her first rounds of chemo and radiation in the Spring appears to work very well, and then the cancer came roaring back over the summer months, and now we're dealing with this aggressive recurrence. More radiation was thought to be mostly not possible by us, but our RO at MSKCC in NYC is recommending something called "Quad-Shot" radiation--four intense bursts of radiation over two days, as a palliative measure to try to arrest the growth of the tumor.

All the literature I've read on this indicates it's mostly used on patients who are at the *end* of their cancer care and that scares me more than anything. This is the first time I've actually been able to admit to myself that this cancer is more serious than I was allowing myself to believe. I don't like to be pessimistic or negative, but things have not been going well for us. Trying to stay cheery every day is becoming harder and harder with every downturn.

Have any of you here gone through Quad-Shot radiation therapy? Has it helped? What do you know about it?

Cyberknife therapy has not yet been recommended to us, but I'll be asking the doctor about it the next time we meet.

I know that most of you are not doctors, but I want to ask anyway. Are there any other therapies that you know about that I can ask our doctors about? I have well-meaning friends suggesting holistic and alternative treatments and normally I wouldn't even consider these kinds of things, but I'm worried, and that worry is making me susceptible to such things.

Nobody's been willing to talk to me about a prognosis and I've been reluctant to ask. But maybe now's the time. Do you feel that it's better to hear a prognosis from a medical professional, or continue "not knowing"?


Caregiver/spouse to Katie B (age 39), non-smoker, casual drinker, HPV-
09/12 - Diagnosed SCC on right side of tongue. Stage IVb
10/12 - Partial glossectomy
11/12 - 2nd partial glossectomy, MND (3/28 nodes positive for SCC)
01/13 - RO and Chemo
04/13 - 2nd round of Chemo
08/13 - CAT/PET scans show mass at BOT
09/13 - Biopsy confirms SCC in tumor at BOT
10/13 - Erbitux, Cisplatin, Taxitere
11/13 - Tumor continues to progress
11/13 - "Quad-Shot" radiation therapy