Hi, I posted on here back in 2013 after my husband David had undergone chemoradiation for cancer of the tongue. He was diagnosed in September 2012, completed treatment January 2013, NED March 2013, and had adjuvant chemo in June/July 2013.

In 2014 David's MO retired and he got a new doctor fresh out of residency. She's been seeing him through his followups up to now.

Fast forward to spring 2017. David noticed a spot on his tongue again. He had a biospy in June and it was positive for SCC. His RO mentioned the possibility of brachytherapy + possibly additional tomotherapy but thought a glossectomy was the best option. His new MO mentioned other modalities such as more cisplatin, or carbo+taxotere, or the cisplatin+docetaxel+5FU, or immunotherapy. My husband opted for immunotherapy, and started Keytruda in July. Well, by the end of the year it was apparent it wasn't working because a PET scan in Dec. showed growth and my husband started getting the facial pain he had just before he started treatment the first time around.

I wasn't going with David to his appointments and have no idea why the RO didn't get back with David about the brachytherapy or other radiation.

At the first of the year we looked into proton therapy as we have a proton center in Hampton, VA. We saw Dr. Thornton, the main RO there, and he suggested brachytherapy + proton or other external to the surrounding structures. He made a referral to Dr. Harrison at Moffitt and we had a March appt. He saw David's PET and noticed growth down toward the floor of the mouth, ordered another CT scan and advised David should still see a head and neck surgeon before starting treatment so he saw one at our local medical school, EVMS. He of course recommended surgery, and was concerned about the imaging showing growth into the floor of the mouth.


We wanted to get Dr. Harrison's opinion at Moffitt, but a couple of weeks before David's appt., the whole end of his tongue turned black and had to be finished off in the ER. When that happened we knew surgery was David's only option, so we made the requisite appointments with the surgeon and today, I am waiting while David is in surgery at Norfolk General Hopsital having a total glossectomy + neck dissection by Dr. Matthew Bak from EVMS. He is very highly regarded, as is his senior partner, Dr. Karakla, in this area. They are *the* oncological head and neck surgeons in our area.

Anyway, I just came back on here after several years of occasional lurking because I needed to get this off my chest. David won't be out of surgery until late tonight and they won't wake him up until in the morning. I've got a couple of small whiteboards, dry erase pens and his iPhone ready to help him communicate, and we've got our church family and our kids' school community all praying and rooting for him as well as offering help at the house for us - meals, rides for the kids to/from school, keeping my elderly mom company, etc.

-Melodie