Hello,

Its been a while since I've posted. I've been present on the board by keeping up with everyone's posts, but haven't had the strength to post myself - being a caretaker is emotionally and physically draining.

As a recap, my dad was diagnosed with stage III SCC on his gums. He had surgery in May, went through 33x rads as they found one encapsulated node. At his follow up scan, they found what they referred to as a second primary in his right BOT. He also had a positive node in his neck. He had surgery again in November for a partial glossectomy with neck dissection and pec flap. Upon exploration of the neck, they discovered disease around the carotid artery, but luckily they were able to tease it off and litigate a branch of the artery.

Fast forward 6 weeks and my dad comes down with an infection for which he was put on IV antibiotics. He starts to develop little pimples around his neck dissection incision and trache site. A biopsy reveals dermal metastasis of the SCC.

Since January my dad has gone through a few different chemotherapy options. The first didn't work at all and made him feel lousy. The second was well tolerated and provided stable scans for 4 months, but our latest scan showed that we had "interval growth." Our MO recommended a PD-1 immunotherapy clinical trial called MK3475. We do have the option to try a standard chemotherapy treatment, but the success rate for the trial seems to be better.

I apologize for the novel, but was hoping someone out there might have heard about this trial or currently be in it. What should I ask? What are the side effects? What should we talk about before starting? It seems so overwhelming! A challenging part through this has been the rarity of dermal metastasis - if you know anyone you could connect me with that has been through this, I would appreciate it.

We're still holding out hope that there is a promising treatment for my dad!!


Caregiver to father
DX:4/14 Surgery:5/14 resection, ND
TX: 33 IMRT complete 9/14
Scan: 10/14, suspicious area tongue & neck.
Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue.
11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND
12/14: debridement surgery, small area removed for clear margins
12/14: biopsy positive for SCC dermal metastasis
1/15: chemo: erbitux, taxol and carboplatin
3/15: 5FU, Erbitux
8/15: enrolled in PD-1 Immunotherapy
9/15: Heaven got a new angel <3