Hi, I am new to this forum, so trying search engine and it is confusing. My brother underwent surgery, chemo, and radiation for an oral cancer in the roof of his mouth. All teeth removed. This happened starting last April. His radiation treatments really crushed him. He is going to physio therapist to try and get more movement back in his jaw. His biggest problem right now are headaches that do not respond to any treatments to alleviate the pain. Can someone more experienced with this forum guide me to any pre-existing knowledge that may be helpful to him? Thanks!

There can be SO many reasons. What doctors and specialists is he seeing, and are they aware of the situation? I've had to see a neurologist to help with strange jaw pain, but that was prior to my losing my teeth ... waiting to see if getting my dentures fit causes it to recur or not. We *think* in my case it's partly related to my migraines (which have triggers that can be related to the same nerves) and that it might be trigeminal neuralgia, but we're not sure. It took two neurologists to find a good listener instead of an idiot, and they have long waiting lists. My ENT (my cancer surgeon) gave me my first referral because it would go through faster than one from my primary physician. But I'm further out from my cancer. This close, your brother's cancer doctors are the ones to ask. Just plain tension can be a cause, as can TMJ. I have also found that holding my jaw in a new position while my teeth are out and awaiting replacement caused a lot of strange pain, more muscle pain though, because it is just new and weird. I can't imagine what it would have been like having it done at the same time as all the rest of the surgery and chemo and rads too, but that's a lot of pain to sort through. Too many potential reasons. Anyway, as the mods will point out, this forum can't diagnose, only strongly recommend that you have him speak to his doctors. And since he has a therapist, that person might have ideas too ... mine was good at helping sort things out, but again that was further out from treatment than your brother seems to be.

Welcome to OCF! Im sorry to read about your brothers situation! Going thru oral cancer (OC), treatments and recovery is difficult enough with all the side effects most patients go thru. His headaches may or may not have something to do with OC. Please understand our groups is made up of patients and caregivers... NOT medical professionals. We do not have years of medical school or clinical patient experience to be able to diagnose anyone, especially over the internet. Without being medical professionals we are not qualified to guess what (if any) pre-existing medical condition would be the cause of his headaches.

Theres so many variables that could be causing his headaches. If he has not discussed his headaches with his medical team, he should. His doctors know your brother and his medical history the best and hopefully will quickly figure out why he's having the headaches. Your brother could need further tests done to figure out the cause of his headaches. Since he was just diagnosed and went thru his treatments last year, he is still in his recovery phase. It takes OC patients after finishing radiation a full 2 years to be completely recovered. Being diagnosed almost a year ago, then surgery and rads Im guessing he would only be about 5 or 6 months into his recovery. He still has a whole lot of recovering yet to do! He must focus on his intake and hit his daily minimums of 48-64 oz of water and 2500 calories every single day. I suspect he had a really hard time with rads from what you wrote as many of us also have gone thru. The headaches could be something as simple as not getting enough water to drink and he's dehydrated but that is just a guess. This is why I suggest he talks openly and honestly with his medical team... sooner rather than later.

Best wishes!!!

[quote=KristenS]There can be SO many reasons. What doctors and specialists is he seeing, and are they aware of the situation? I've had to see a neurologist to help with strange jaw pain, but that was prior to my losing my teeth ... waiting to see if getting my dentures fit causes it to recur or not. We *think* in my case it's partly related to my migraines (which have triggers that can be related to the same nerves) and that it might be trigeminal neuralgia, but we're not sure. It took two neurologists to find a good listener instead of an idiot, and they have long waiting lists. My ENT (my cancer surgeon) gave me my first referral because it would go through faster than one from my primary physician. But I'm further out from my cancer. This close, your brother's cancer doctors are the ones to ask. Just plain tension can be a cause, as can TMJ. I have also found that holding my jaw in a new position while my teeth are out and awaiting replacement caused a lot of strange pain, more muscle pain though, because it is just new and weird. I can't imagine what it would have been like having it done at the same time as all the rest of the surgery and chemo and rads too, but that's a lot of pain to sort through. Too many potential reasons. Anyway, as the mods will point out, this forum can't diagnose, only strongly recommend that you have him speak to his doctors. And since he has a therapist, that person might have ideas too ... mine was good at helping sort things out, but again that was further out from treatment than your brother seems to be.[/quote]

Hi KristenS. He is seeing his ENT doctor mainly. The doctor is fully aware of his headache complaint and so far not able to resolve it. That is the knowledge I hope to gain from places like this. I tried American Cancer Society, but their forum seemed to be not well attended. I am hopeful this one gets more participation, and hopefully from someone that has had similar problems with solutions. Thanks!

[quote=ChristineB]Welcome to OCF! Im sorry to read about your brothers situation! Going thru oral cancer (OC), treatments and recovery is difficult enough with all the side effects most patients go thru. His headaches may or may not have something to do with OC. Please understand our groups is made up of patients and caregivers... NOT medical professionals. We do not have years of medical school or clinical patient experience to be able to diagnose anyone, especially over the internet. Without being medical professionals we are not qualified to guess what (if any) pre-existing medical condition would be the cause of his headaches.

Theres so many variables that could be causing his headaches. If he has not discussed his headaches with his medical team, he should. His doctors know your brother and his medical history the best and hopefully will quickly figure out why he's having the headaches. Your brother could need further tests done to figure out the cause of his headaches. Since he was just diagnosed and went thru his treatments last year, he is still in his recovery phase. It takes OC patients after finishing radiation a full 2 years to be completely recovered. Being diagnosed almost a year ago, then surgery and rads Im guessing he would only be about 5 or 6 months into his recovery. He still has a whole lot of recovering yet to do! He must focus on his intake and hit his daily minimums of 48-64 oz of water and 2500 calories every single day. I suspect he had a really hard time with rads from what you wrote as many of us also have gone thru. The headaches could be something as simple as not getting enough water to drink and he's dehydrated but that is just a guess. This is why I suggest he talks openly and honestly with his medical team... sooner rather than later.

Best wishes!!![/quote]

ChristineB. Thanks for the welcome! My brother has spoken openly and fully with his doctor. So far his doctor has not found a solution to his headaches, and he has been working on it for a few months now. No drugs give him any relief. I understand the patient, caregiver, medical professional differences. I have found that getting input from people that have went through something similar to be very valuable, and that is what I hope to find here. Your statement "He must focus on his intake and hit his daily minimums of 48-64 oz of water and 2500 calories every single day" is the kind of help that I need. It is hard for him, because he has not taken any real food for about a year now. Just the bagged stuff or whatever that they give him to push into his stomach through a feeding tube. He did loose about 30 pounds through the whole diagnosis and treatment period. His weight has stabilized, so I think he is doing OK but will ask him. Thanks!

If his medical team is not able to get to the bottom of his headaches, your brother should see someone that can help him. I suggest asking for a referral to someone who specializes in those types of things. I dont know if there is a specific type of specialist who helps patients who have chronic headaches. Im guessing a neurologist may be who he needs to see. I dont know if different specialists handle different types of headaches. For example a patient may need a different specialist for migraines than they would for another type of headache.

After I wrote to you this morning, I was thinking more about the info you gave us. Some patients who have been thru rads have problems with their blood pressure going from very very low to very high within seconds. Usually the low to high swings in blood pressure are when a patient stands up. It hasnt affected me but I have read and talked to a few people who have been dealing with it for months, maybe years. I also considered his vision could be off which can cause headaches. One side effect of OC treatments that still bothers me almost 11 years after I first got sick is chronic sinus congestion. Anytime someone is very congested they can also have other problems like post nasal drip, a scratchy throat, swelling/puffiness around their eyes and that could cause headaches too. Maybe I watch too much tv as now Im thinking of all those allergy medicine ads touting relief for sinus headaches. I also thought if your brother is taking medications, check them for headaches being a side effect. Anxiety or a patient who is experiencing alot of stress can cause headaches too. I did a quick search to see any posts or threads where headaches were discussed. Looks like there are quite a few but it didnt seem to have a definitive answer. Seems to me like this may fall into the "everybody's different" category. If you would like to do a search, type your keyword/s in the white box near the upper right of any page. We have many thousands of topics and hundreds of thousands of posts here so you may have to sort thru the posts to find something related.

The formula for feeding tubes usually is only around 250-375 calories per can/cardboard box. With it being so low he would need 6 - 9 cans a day to get his intake up to 2500 calories a day. Thats ALOT of liquid!!! Is he able to eat anything at all (yogurt, applesauce, soup broth) or can he drink things or take sips of water? Ive had a few friends who were not able to eat anything, not even a sip of water. One other thing about depending on a feeding tube for his intake, he is getting lots of fluid that will help to meet his daily minimums. Formula counts in calculating his water intake. I still suggest taking in a little extra water, he can flush his feeding tube extra thoroughly by doing 2 full syringes of water after feedings (2 syringes 120cc = 4 oz).

I completely understand how difficult rads can be!!! I had a heck of a time of it myself. Losing 30 pounds could be considered a huge amount if your brother is on the slim side. If he was slightly bigger than an average adult or considered overweight then it wouldnt be so much of a problem. But... (you know there always must be a but!) along with dropping 30 pounds, he also dropped muscle as well. This can be a big problem! Im a little too familiar with this myself. Especially when the patient is only a few months post rads. Rebuilding muscle is NOT easy, even more difficult during recovery. If your brother isnt taking any vitamins, that might help. Centrum makes a multivitamin in liquid for adults. Ive been using it for 6+ months and find it does help me to feel better, stronger. Your brother may benefit from adding high protein whey powder to his feeding formula. Protein helps to speed healing. Make sure when you tell your brother about this so he knows to first check with his doctor before adding anything new. Some nutrients arent good for some patients who have certain health conditions.

Hope this info helps your brother.

PS... The Oral Cancer Foundation is not only the biggest but also the very best online support group for oral cancer patients and their caregivers. OCF is heavily monitored to ensure only correct, up to date, and scientifically proven medical techniques are discussed. Unproven treatments, medicines, etc that could cause a patient to delay seeking conventional treatments is not tolerated on our site. Social media and other public forum sites for OC arent monitored to avoid unproven and false cures that can harm patients to remain posted on their sites. We do not allow advertising and have no behind the scenes affiliations which keeps admin and monitors completely neutral. OCF takes pride in being one of the few medical support themed websites that are qualified by Health on the Net which ensures only reliable medical info is given. Our public forum gets thousands of views each day by people from all over the world.