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.

Welcome to the forum. I’m so sorry that you have to join our group of friends and to hear that you’re worried about your brother’s treatment.

It’s not clear from your post how much radiation your brother got — was It just two sessions, or two courses of treatment. If it is the latter, then I do wonder what the dosage of radiation was (expressed as a gray — my husband, for example, received 70 grays initially, then 25 grays two more times in his lungs when the cancer had metastasized). My understanding is that after radiation, many patients have difficulty with healing. You hear about people getting surgery first, then radiation after; I have not myself heard of the two treatments being done the other way round.

Have you spoken to your brother about his own personal preference? What does he want to see in terms of his own treatments? Is your brother being treated at a comprehensive cancer center where the team approach is used and he will have access to a network of specialists? At this point, I would suggest getting a second opinion or even a third opinion, if you can. There may be other forms of treatment that the doctors may have to offer, for example clinical trials. Keytruda, as far as I know, is more palliative than curative in nature. This is important to know.

Thank you for your response, gmcraft. He received two courses, one for 46 grays from 5/31/17 - 6/26/17 and second one for 66 grays from 8/1/17 - 8/21/17. They just started him on radiation as the main treatment as surgery was not even considered. I think it was mainly because they don't have skilled surgeons that know how to do oral surgeries or they thought surgery would be too aggressive. They could however refer him to other medical centers with skilled surgeons, but it wasn't done. And I told him to go get a second opinion, but he unfortunately didn't.

I did speak to my brother and he wants treatments and wants to get better. The thought of removing the whole tongue does scare him and it is not something he wants to do. But given only the surgery gives us a chance, however small (surgeon said less than 20%), at the cure, I don't know if we really have many other options. I believe it is a comprehensive cancer center, ranked about 40th in the country. The head and neck surgeon did discuss it with medical oncologist, but didn't really present any treatment options saying that surgeon is leaning away from the surgery due to risks and the oncologist doesn't think there are any other good treatment options given his advanced stage. I don't know what other specialists he needs to see. And yes, agreed, Keytruda is more palliative, which is what the oncologist said, she doesn't think it would be very helpful in his case. We also talked about clinical trials, and she said she doesn't think he would qualify because of his liver problems. I'm assuming we could still try to apply but that will take time and at the end he might not even qualify and his cancer keeps growing and spreading. Maybe you are right and we should try to get a second and even third opinion. I'm thinking to try another large center in Los Angeles who ranks much higher that one in San Diego. If they tell us the same thing, that surgery is not recommended, maybe we just accept it then and try Keytruda as palliative measure. Or if we're lucky, maybe they will do the surgery. It's just hard to hear that there are no treatment options for someone as young as he is. His heart is strong, he does have liver problems which creates risks for the surgery, but no other health problems. I guess the surgeons don't want to deal with someone who may die at the operating table even if it can offer the chance at cure. I also understand the surgery is risky but so is doing nothing. Ultimately it will be my brother's decision if he wants to go through the surgery if we are lucky enough to find a surgeon who will agree to do it. I'm in no way going to force him to do something he doesn't want. I just want him to have a chance to live and find a doctor who can give him that chance.

Thank you.

Welcome to OCF! Im very sorry to read about everything your brother is going thru. I wish he had agreed to go for the second opinion. If he can get to one of our countries top comprehensive cancer centers (CCC), that would be his best choice. The facilities Im talking about are the best of the best ... MD Anderson, Sloan Kettering, Johns Hopkins to name the top ones. There are places to help with transportation and lodging too. Other members have reported they were able to send all the medical records to get examined by the CCC without even needing to go in person. It certainly cant hurt to give it a try. Check out the links below and I hope he will at least hear what they have to say.

Best wishes!!!

NCI CCC list

Financial Resources from main OCF site

Slava,

I'm very sorry to hear this, and don't know what to say, other than grasp for ideas, and saying what were some of my experiences.

Chemoradiation is often the preferred treatment, which was mine too, for certain cancers, its location, size, other reasons, including the patients condition and wishes.

I had heard of chemo being directly injected into tumors, but never came across anyone who did this nor was it ever suggested to me. Now I see it's with nanoparticles. Chemo by itself is not curative. It may shrink the tumor or sensitize it for radiation. If it does eliminate it, like my case with Induction chemo, it most likely will return, and did.

The radiation given seems kind of odd not knowing the type of radiation. It could have been something like Brachtherapy (internal rads) and then boost dose with IMRT (external rads) , which is similar to what I had twice, but with IORT, Intraoperative during surgery and IMRT a month later, and the next year IORT during surgery again and then Proton Radiation a month later. Usually with Squamous cell carcinoma, it takes above 50Gy to kill it, maybe more like 70Gy.

As far as jaw reconstruction with a free flap, which I had, it does need vascularization, and I was vessel depleted from prior surgeries. You can be considered vessel depleted due to the condition of nearby vessels from radiation too. They used my internal mammary artery and vein used from my chest, which they have to break, to attach supply blood to the fibula on my jaw. There are others that can be used too.

The liver may be an issue, but was never mine. Mine is stage 4 chronic kidney disease, but they still did surgeries. Many trials have reasons for exclusions, and I wouldn't qualify for most, if not all, but that never prevented me from receiving treatment, maybe some types of chemo's though.

Keytruda and Opdivo are not curative, works in about 14-18% head and neck cases, but some do have durable responses. Their being used with other chemo's and combinations in some trials, but that may mean more toxicities.

I also say to confer with the top cancer centers who are very experienced in recurrences and complicated surgeries. In NYC, if that's an option, as is time, and your brothers condition is permitted. They have doctors that are very experienced with complicated cases, some of the best in my opinion, and you have about a half dozen top places one can go to that are close in proximity. Maybe even seeing all in one or a few days for the best options.

I wish your brother the best, and hope this helps.

I know you can only do so much being the sister of the patient. Even though I hate to admit it, most patients (myself included) can be stubborn and when given a choice often will not make the best choices. I thought of another idea... maybe print and give the posts to your brother or you can email the posts you made along with the replies received directly to him Sometimes patients will not make the best choices when facing very serious medical situations. I was there myself and almost chose not to seek treatment when my cancer returned for a third time. I was facing a huge surgery and had a very slim chance of survival. I was thinking of what would be best for my 2 teenaged children who needed their only parent to be here with them. It was the kind and very knowledgeable members of this forum that eventually got me to see the light and understand I couldnt just quit, especially without even trying for a cure. Im one of the very few who can come back and say Ive beat the odds and Im still here 8 years later. I really think hearing what other fellow patients like Paul and myself say carries some weight. Gloria is a caregiver who was by her husbands side thru some very difficult days, sadly he didnt make it. She knows all too well how horrible this disease can be. I try to avoid putting too much faith in the numbers as Ive beat the odds. Hopefully your brother will get the ball rolling and get to a CCC so he will have a better chance of survival. Time really is of the essence in his situation.

Best wishes!!!

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.

Slava,

All of your suggestions sound like options. That's good a NYC hospital can give you a consultation via e-mail, instead of traveling, which can be different than what was already suggested or maybe the same, but at least you tried! It's possible you can see 5 doctors, and get 5 different opinions sometimes! A tumor board of 12 sounds kinda small compared to others where I hear it may be 30 or more multidisciplinary health care professionals, but that doesn't mean they were wrong. One member here went to a tumor board meeting himself!

I'm in agreement that if the tumor spread during treatment, it may be chemo or radio resistant, which doesn't sound good. What was given and done is in the past, so try not to occupy your time with too much if it was the right or not, but it doesn't sound like any treatment plan I've seen used. I may have read about a of split course radiation with chemo in between somewhere, but not sure if its part of any current recommened guidelines in the US.

Radiation can be used in palliative care for pain, like bone. There are other types of radiation, like IORT, Intraoperative radiation, that is done during surgery, and usually followed by external beam radiation, but not sure if your brother would be a candidate. Brachytherapy is similar. Then there is Proton Radiation, which is very precise, which eventually killed my cancer after the 5th time with radiation, but there are only about 28 locations in the US. Usually it's 6 months minimum between the last radiation for re-irridation.

Keytruda is an option. I'm not sure how long it takes to effect the tumor. They are now being given in some trials with other chemo's or immunotherapy, but that equals more toxicities. An effective course of chemo for shrinking tumors is TPF Induction Chemo with Taxotere, Cisplatin and 5-FU or similar type chemo treatments, but the toxicities can be high, and should only be used in select patients. There are palliative care chemo's like erbitux, which is really a type of targeted therapy that can be given long term, sometimes years. The good thing about chemo, targeted therapy or immunotherapy is that it can start quickly, which sounds like the need here.

These are just some of my thoughts, and by no means are correct, and this situation is way out of my experience, but just wanted to mention something. Not saying my situation was similar, but I was turned down for further treatment in April 2012 after my 4th cancer by my then current doctors, and then a major cancer center who is usually #2 I consulted with, but I found a top doctor that agreed to treat me, and several more times at that, and wouldn't be here if I didn't.

I hope you find the appropriate care and comfort for your brother.