new to group
hi, I'm new to this group. I was diagnosed with this cancer last year and completed treatment (radiation and chemo) in June of this year. I'm apparently cured according to my doctors but I have some lingering symptoms that I'm wondering about. The most annoying/painful one is the skin on my head is incredibly sensitive like I had a sunburn or something on my head. My radiation ended in June and I keep getting bouts of incredibly sensitive to the touch/painful skin on my head. It last for about 2 weeks then goes away. You think you're done with the pain on the top of your head but it inevitably comes back. Is this common? Does it go away eventually? Is this an after effect of the radiation or something else? I always forget to ask one of my doctors when I go in to see them. Also, my salivary glands in my mouth are not functioning fully. When I eat, I have to wash each mouthful down with a gulp of water. Will that go away? Also my jaw hurts like heck when I eat or yawn, I always assumed that was because I can't eat so fast anymore and have to chew much more. Is that why my jaw hurts or is there another reason for this? Anybody have any thoughts on this? Thanks for your help. This support group is totally new to me, I have no idea how this works and hope I can contribute in some way to someone else's questions.
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While I can’t share any insight as to the head burning issue, I can share that pain I had in my jaws did eventually get a lot better with time. a few weeks after ending treatment, I had to start forcing my mouth to open wide several times a day… every day. My goal was to stretch to fit the width of three fingers side by side. Then, one day I just yawned unexpectedly.. and my mouth opened really wide all by itself. Was a great day! Chewing anything for a long period of time was also painful… that also went away for the most part. It took a few (maybe like 4-5 for me). While I am sure your situation will improve as mine did.. with time, you may want to check with your oncologist / ENT to make sure.
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Hello, Henry and welcome to the CSN H&N discussion group.
Praise God you are cured and you are because of the treatment regimen you endured.
I would say most or all of the things you describe are from the treatments and the leftover effects of radiation and chemo.
Probably from nerves that were affected and if you had the normal amounts of radiation that H&N patients usually receive you probably had to deal with very reddened skin in the radiation area like a bad sunburn.
As you say it goes away and comes back but it will most likely stop sooner or later.
Some of these effects we deal with can take a year or more to work out.
I still remember my Radiation nurse telling me very seriously that till I got through this it would take a year of my life.
Some of this will take time to work out or see where you end up with all of it.
Recovery progress from H&N cancer is measured in weeks and months it is a process that requires patience and reaching out to your care team to address any problems you may have, believe me, they want to know and want to help.
Your effects are mostly from radiation but could be chemo also if you had it.
It will be some time till you see how much saliva you get back and everyone is different. I would estimate I got forty to fifty percent of my saliva back, some people get much more some even less. My best wishes are with you in this respect.
When you eat you will need to sip some liquid, for now, to make up for the missing saliva that the radiation has affected. Try taking smaller bites for now mixing with liquid in small amounts so you don’t detract from the food so much. Radiation damages our saliva glands and the flow is less and it will be a period of time till you see how much your saliva glands recover.
I also have to chew my food much more but that is also due to the need to make it smaller to be able to swallow it since the radiation has made my throat smaller. It could be that radiation has affected your throat. Check with your ENT or your care team or a Gastro doctor.
After radiation, I started getting things stuck while swallowing.
I had 4 dilations of the throat where they stretch your throat a little bit at a time and it cannot be done all at once because there is a risk of tearing the esophagus and after radiation tissue is less flexible.
This may be something to consider, ask your care team.
Your jaw may hurt or be sore from more chewing and or an effect from the radiation. Can you open your mouth as wide as you used to or is it diminished? You may have trismus from the radiation. Which affects how wide you can open your mouth and may be causing you pain.
Trismus
Trismus is a disorder in which it becomes difficult, painful, or impossible to fully open your mouth due to a decrease in the range of motion of the muscles or joints of the jaw. It is one of many possible long-term side effects of treatment for head and neck cancer. Trismus is diagnosed by measuring how wide the mouth opens or by the degree of pain with attempted mouth opening.
The link below covering this subject from Head and Neck .org--
Check with your care team, you should be seeing a Speech Therapist which helps you with all things Head & Neck, swallowing, speech, mouth opening, breathing, and anything to do with that area. They will monitor your swallowing, saliva, sore jaw, and other things while you recover from this and will give you swallowing exercises, jaw exercises, and maybe even have you get a swallow test so they can see what is exactly going on in your case. It will help you greatly. It has helped me very much. There are a couple of links below one for swallowing and speech rehab for us H&N patients and one covering a swallow test. Please get on top of these problems, trust me there is room for improvement working through your care team and getting the right assistance.
Going forward Wishing You the Best.
Take Care God Bless-Russ
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Thanks for the best wishes and the comments. I'm surprised at how many things I have that I wasn't aware of with regards to aftereffects.
Regarding my jaw and opening, I don't think it opens as much as it used to at least not without pain, and what you described on how you eat is the same for myself - slowly and having to swallow some water with each bite. That's something that I hope will eventually go away. I used to really enjoy eating and now, it's become more of a job and you have to plan more so as to make sure if you eat that there is something handy to drink to help wash it down.
I will say this, I had no idea that there would be so many things that show up during and after radiation that add some sort of pain or discomfort to your life. You always he noar about how chemo can be devastating but seldom hear what radiation can do. It certainly is an eye opener. For myself, I had always hoped that my life would go back to what it was before but I'm seeing that it might get close to what it was but not what I was expecting, and I have to accept that and get on with it.
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Eating normal meals with family/friends can be a challenge. Before sitting down to eat, I usually blend up a smoothie with almond milk, olive oil/avocado, some nuts and fruit, and drink that down before the actual meal. That way, I can get by with smaller portions of the real meal.. but, still sit and enjoy the same foods everyone else is eating, and enjoy the company at the table. Even with cutting food into much smaller pieces, and having smaller portions overall... I still manage to be the last one to finish said meal. Just have to get used to eating while everyone else around the table is staring at empty plates in front of them. Also, every time I swallow something solid... wondering whether, or not, this is going to be the mouthful that gets lodged in my throat can add some excitement to the meal. Every once and a while.. I will push it, get close to it getting stuck.. and go back to cutting things up really small. It just becomes the it-is-what-it-is situation... and I just appreciate being there in the moment.
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Hello, again Henry.
I hope you are definitely more aware of the possible side effects of H&N treatment with my previous post. I would say the effects of chemo are relatively short-lived as compared with radiation which can make possible issues years later.
Also, one of the main things I wanted you to take away from the info was that you are still early out of treatment and there is still time for your many issues to work themselves out and improve a lot in the process of normal recovery for H&N treatment. And to stay on top of things get with your care team and take along a list of things that are issues for you and they will work with you and they know what is normal recovery and what you should have help with now, such as probably a speech therapist to get your jaw and mouth, and your swallowing back to a good range again.
Also with H&N radiation and less saliva, you will need to be extremely vigilant with your dental care and if you need any extractions tell your dentist or oral surgeon about the radiation you had and they most likely will want to talk to your radiation doctor about the area and strength of the radiation received.
When we get H&N treatment there is so much involved up front that it is a lot to process as well as once we had the treatment and go into recovery through the months ahead. There are many things involved but I think the providers don't tell us everything as it is too much to process at once. It is enough of a load just to get through the treatment. And besides, we don't have much on our minds except ("I just want the cancer out of there")
So please be mindful of mouth and dental care because once we go through this it is much more important for the rest of our life.
I see the dentist every 6 months for a cleaning and fluoride treatment.
The dentist has me gargle every morning after brushing with Act Dry Mouth mouthwash for at least 30 seconds and
at night before I go to bed I brush and follow up with a higher dose fluoride paste called Denta 5000.
The toothpaste I use was recommended by an oral care specialist called Squiggle Fluoride.
I also brush after every meal.
I also floss once a day and use the small dental brushes between my teeth after meals.
Sounds like a lot but once you get it in your routine it's not too bad.
Check with your dentist and see if he is up on dealing with H&N Cancer folks.
The gal that cleans my teeth and my dentist are very aware of it and my situation.
I have been referred also to an oral surgeon for some things and they are really up on it and work closely when necessary with my radiation doctor to be sure of radiation fields and strength of radiation applied.
I am sure you will do well.
Wishing You the Best
Take Care God Bless-Russ
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thanks very much. I've booked an appointment with my dentist for a cleaning and check up this coming Friday, as it's way overdue. The dentist is aware of my situation, as my wife spoke to him before the treatment began but I will get back on the same page with him regarding my cleaning regimen. While I was sick, my teeth cleaning became about last on my list, but I do use toothpicks all day long so I'm hoping I may have helped myself in that regard.
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wow, I'm truly amazed at your situation and what you do ahead of time when it's time to eat. Thank you for sharing this with me. It certainly provides some ideas for me. I'm trying to gain back my weight, I lost 30 lbs thru this treatment, it ended back in June and I haven't gained back anything. I've weighed myself regularly, and while the day to day number fluctuates, the overall weight really hasn't changed in this time. I try to eat as much high fat food as possible but it doesn't seem to be sticking to my ribs yet. Any suggestions on how to gain weight? I used to enjoy having a beer with my dinner but don't really enjoy the taste of beer much anymore. My sweet tooth seems to have been awakened but despite eating more cookies than before, the weight simply hasn't come back.
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First off, I am just sharing what I did.. without any actual study or doctor advice to back it up. I think one of the best things we can do post treatment is start to build muscle by incorporating weights and strength training with regular exercise. Muscle weighs more than fat... and, I think we lose more muscle than we realize when we go through this treatment/post-treatment process from all of the laying around. I was in really good shape prior to surgery.. and lost approx. 30 lbs total after all said and done. I have several kettle bells (20 lbs up to 35 lbs). Before this all started, I was walking regularly with the 35 lb weight and building muscle. After a break from this that lasted post-surgery to 5-6 weeks post treatment... I decided to get it going again. I had to start back at the 20 lb weight, and that was tough. When you can build muscle, your weight will increase, and your body will crave more calories and carbs. At that point, you can consume more and more carbs with the fats, because they will get converted to energy vs the negative side-effects. It seemed like the more strength I gained, the more permanent was the weight gain. I started playing tennis again. My arms and shoulders got stronger, my hands and forearms got stronger, my legs gained some muscle, and even some of my MIA, flat butt started to come back.
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I didn't have the issue with skin on top of my head, but did have the jaw pain. I would recommend if you can going to a speech therapist who is trained in head and neck cancer. Mine was amazing and has helped pretty much end all of my jaw issues. At times it will still be a little "tight" to open my mouth, but exercises help and usually works it out pretty well. I'm about 10 months out from end of therapy and my mouth is still dry. Pilocarpine has helped, and there are times when it seems like it has returned to normal, but when I start eating food, the saliva is absorbed pretty quickly and I need water to help out. I think it will probably be like this or similar the rest of my life, but a small price to pay for being cancer free.
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Thank you for your comments. I appreciate hearing about the dry mouth issue and the PILOCARPINE. I tried it also but didn't do anything for me. My mouth is still pretty dry, especially at night and in the morning. As for the skin on top of my head, it's fine right now, I'm just waiting to see if this comes back. As for my jaw, I'm doing the 3 finger in my mouth vertically and increasing the height a tiny bit and holding it. Thanks again for your comments and good luck to you.
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Hello, Henry, as for your dry mouth you may want to try Xylimelts they are the best thing I have found. Although I use them mainly at night to keep my mouth moist while sleeping, you can use them anytime you feel the need.
Also as far as mouth opening many H&N people use tongue depressors and stack them one on top of another and put it in your mouth between your teeth as many as you can comfortably fit opening your mouth as far as possible. Then add one at a time to open your mouth a little more till you are at your limit for now. Then put them in your mouth between your front teeth for about 30 seconds. Do this several times a day 3-5 times each time. When your mouth opening gets used to that limit add one more tongue depressor to get a little bit more opening, thus slowly increasing mouth opening. This helps many who suffer trismus after radiation treatment to the H&N.
The image shows someone using 2 stacks which is good but one in the center would be ok. Below is a video of the procedure for this presented by a doctor.
I hope this info helps you and others.
Take Care God Bless-Russ
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