Hi all,

Just let me start by saying thank you for all you do on this forum and for sharing your knowledge and experience. I wish I used it more actively when my brother was diagnosed, but I decided to rely on doctor's professionalism. I am along with husband and my mom are caregivers for my brother who was diagnosed with SCC of the floor of the mouth on April 30th, 2017. He is 38 years old. He is from a city outside of U.S. where he underwent his treatments. Surgery was not offered to him at all and he had received two rads, one in June and one in August. It didn't help and potentially made things worse as at the end of June his chin got swollen and in August the cancer started actively spreading to his lower jaw. I and my husband went over there in September and took my brother to two bigger cities with bigger hospitals, but the only treatment we got out of it was the chemoembolization procedure where they injected Docetaxel (chemo drug) directly into his tumor and besides stopping his blood supply to the tumor, it didn't do much for him, his cancer continued spreading. It doesn't seem that procedure like this is done here in U.S. so not sure why they thought it was a good idea, seems like it was done just to stop the bleeding. In November we brought him with us to U.S as we all live here and we saw the oncologists here at the largest cancer center in our city. We saw the surgeon and medical oncologist last two weeks. Surgeon is not recommending the surgery for the following reasons:

1) The whole tongue and lower jaw would need to be removed. Because the arteries are damaged from radiation and chemoembolization procedure, he doesn't think the new jaw will be able to be attached or will heal well. He says he will never be able to talk or swallow on his own and says that the surgery will be "devastating" and overall doesn't think it's a good option. However, I read somewhere here that arteries from the chest were attached to the part of new jaw and wonder if it would be possible in our case. Surgeon didn't discuss it with us. And also read some more on the internet about full glossectomy and it seem that people are able to gain some speaking, swallowing and even eating abilities after full glossectomy. As devastating as this surgery would be, my thoughts are that without surgery there is only one finale.

2) He is concerned about my brother's liver function - his liver tests are not terrible, but not within norm due to prior use of alcohol. He quit a while ago and hist tests got a lot better. But it is not like in a healthy individual. So there is a chance there will be complications and even death during surgery. I understand the liver concern but think we could see the liver specialist to see how much risk is there for the surgery.

Oncologist is saying that because of how advanced his cancer is, she doesn't see any good treatment options for him. Chemo is not going to cure and will have more side effect than help and she doesn't believe Keytruda will cure it and cites that it only works in 15-20% of patients and even then it will only shrinks the tumor, not cure it and even if it prolongs his life, it would only be for couple months. We applied for Keytruda compassionate use anyway and are awaiting for decision from Merck.

I mean, is this the end of the road for us? Do we listen to what they tell us and give up on surgery and any treatments? Or do we continue fighting for the surgery, look for second opinions, etc.? He is very advanced, and doesn't seem like got the correct treatments from the beginning, maybe they were trying to save his tongue, but it seems like the surgery should have been done back in May for him to have a chance at cure. Now it's all over his tongue, floor of the mouth and his lower jaw is pretty much gone, I change his bandages a few times a day and it's terrible. You can see the hole in his ching, the fractured bone and it just keep spreading on his face. My mom can't even change his bandage or look at it, it's only me and my husband that are able to do it. Even doctors told us that they rarely see something this advanced. The crazy thing is he doesn't have mets in his lungs or anywhere yet, it's all just very locally advanced. But yet no treatment options. He now has PEG tube, but we still are struggling with his weight, he keeps loosing it. Cancer just eating it all.

Just wanted to hear advice from you and how healthy were you or your loved ones when you have gone through the surgeries.Did you have to deal with doctors saying surgery is not a good option? How did you know when to stop looking for treatments? Do you know of anyone who went through full glossectomy as well as had the full jaw removed and possible not reconstructed? I fought for my brother's life for last three months, trying to find a surgeon or a doctor that would offer a meaningful treatment but so far got nowhere.


Sorry for the long post and thank you all for your responses. Just feels good to share it with people who have been and are going through the similar experience.