Thank you so much ChristineB for the links and for all the information provided! And thank you PaulB for sharing your experience and your thoughts, I'm so grateful for your responses and so happy to hear about your successful fights with this devastating disease! I think you are right, and I will try to get the opinions from top medical centers that you named. NYC one has an option of providing the second opinion by email, so I'm going to try it. And I will send the medical records that I have to other centers as well to get the process started, maybe they at least can tell me if it's worth it to come for an appointment. He's not in best shape for flying to other states, he's still adjusting to painkiller's effects and last couple days has been pretty sleepy. I hope it will go away. I will still try to get the other opinions. Whether late or not, it's worth a try. It's also a bit hard since I have to translate everything.

Do you guys think they can offer some other options that CCC here didn't offer? A lot of people say it's a very good CCC but yet no treatment options for us. I talked to the surgeon again yesterday and he said he thinks the surgery would not be in my brother's best interest and he said the cancer board of about 12 doctors agree with him, saying that most likely after the surgery the cancer would still be there or appear while he's healing from the surgery and it will be difficult to treat any microscopic one since it wasn't responding to radiation or chemo initially. He was saying we would be in the same situation as we were in the beginning just after such a complicated surgery and that he doesn't want to take this time that he spends with the family and have him spend it in the hospital. But I'm also a bit skeptical of the conclusion drawn on radiation and chemo not working. As PaulB was asking me questions about type of radiation given and that number of greys was odd, the doctors didn't ask me here anything about that, besides how many greys he was given. Maybe there are other types of radiation or chemo they could try post-surgery or even now, I don't know. He didn't even get normal chemo treatment just chemoembolization and who knows if radiation was done correctly. Surgeon said that even if it wasn't done correctly, the fact that his tumor grew through the radiation treatments is a bad sign and I understand but still wonder if re-radiation in some other forms could help. I looked his medical records regarding radiation and it says IMRT on it on both courses that were done.

Also, as an update, he was approved for Keytruda compassionate use. I'm going to let the oncologist know tomorrow. I wonder if there is anything else he can take or try in combination with Keytruda to make it more effective if we go that route. I'm going to talk to oncologist, but if anyone has any information, please let me know. I've read a story of the rock star who was cancer free after taking Keytruda and another immunotherapy drug, epacadostat, for his tongue cancer. He actually was treated here in San Diego. Not sure how much epacadostat contributed to his cure. Let me know if I can post the link here to the article or maybe it was already posted somewhere. Also, do you guys think getting opinion from top three medical centers you mentioned is better than from the one in Los Angeles? It probably is, just wish I could avoid travel given he is not at his strongest and we also have been travelling before coming to U.S. for quite a while but will do it if necessary or if some treatment options are offered.

Thank you for all your advice. It is very much appreciated.

Last edited by Slava; 12-05-2017 07:28 PM.

My brother was diagnosed in April'17 with SCC of the floor of the mouth, stage III, rads in June and August, didn't help, cancer spread to the lower jaw, chemoembolization with Docetaxel Oct 31'17, didn't help, cancer keeps spreading