I just end week number three of a six week radiation only treatment for base of Tongue cancer. It has become almost - no lets say it has become impossible to swallow anything solid. I have not had solid food now for about 5 days. I am living on either McDonalds milkshakes or DQ milkshakes with Protein added.
I have not lost more than about 6 lbs so far but expect the weight loss will begin to happen faster over the next two weeks unless I can get more of these shakes down.
The pain in my mouth is not that great, just the swelling from the throat makes it difficult. I don't know if this is because I have been having acupuncture through this process two to three times a week since the beginning of my treatments. I went on Saturday to have a acupuncture session, she seemed to have stopped the discomfort at the roof of my mouth, and gave me two pressure points in my ears to squeeze 4 times a day for relief.
So what is the worst part of this at the end of week three , the thick saliva. It is gross and difficult to deal with. I can not swallow the large mucinex pills anymore, now I am using Wal-Tussin from Wall Greens. It has seemed to work except not as well this morning.
I have heard different stories on how long it takes for the throat to heal and extra thick Saliva to stop. I would not mind hearing how others have dealt this this and how long after treatment it will begin to subside.
My husband is 8 weeks out now, has just now started trying to eat, gets choked, can't swallow large pills at all uses Robtussin DM. His tongue is still very swallowed. Lots of fatigue. Thick saliva has slowed greatly. Mucostis came back this week horribly. Now jaws and teeth hurt. Blurry vision and hearing problems. We are at MD Anderson now for our first check up.
Eight weeks out ? Did he have chemo and Radiation or Radiation only and for how long. I was hoping for two to three weeks out. I was told when this all started the first two weeks you don't notice much of a change, you pay for it on the back end, feels like you are still having treatments for two more weeks.
Overall I would say you're doing well, and kept the weight loss to a minimum of 6 pounds. Doctors do get concerned with 5% unintentional weight loss from your pretreatment weight during a 6 month period, which is the biggest cause of treatment stoppage, and poorer outcome, and if continued, and may require intervention such as a peg or nasal tube, and others. Many factors influence the weight loss due to pain, swallowing difficulty, dry mouth, infections, cancer itself, physiological, etc, including cancer cachexia, which is difficult reverse, gain back, even with increased nutrition due to metabolic changes, is mostly skeletal muscle, and each need to be treated accordingly. I lost significant weight several times, over 120 my first round with chemo, 40 just with radiation, 10 here and there during other treatments, and took several years to gain back 50lbs.
Radiation effects start becoming more difficult from the 3rd week, and more difficult as time goes on, even up to 3 weeks post treatment being the worst.
As far as thick mucus, that's a result of the radiation to the major salivary glands, more so in the parotid, which basically kill thin mucus, so you're left more with the thick. Usually thick mucus starts subsisting two to three weeks at the end of your treatment when the other glands start producing more and or glands start recovering depending if spared, the radiation dose, and areas. Overall, it can take up to 2-3 years to recover, if not longer, plus radiation has acute toxicities, lasting up to 3 months, and long term, longer than three months that can occur months, years later.
To help thick mucus you can sleep on an incline, use a humidifier, keep hydrated, brush/rinse out mouth, a steam shower, usual salt water baking soda rinse, rinsing with seltzer, pineapple or papaya juice, even used diluted meat tenderizer.
I don't see mentioning working with a registered dietician, a Speech and Swallow Therapist, SLP, which I recommend. When I did radiation I had my mouth sprayed out daily in radiology, which helped mucocitus,and thrush, which are sometimes difficult to differentiate and occur concurrently, along with other conditions, including bacterial or viral infections, which need to be treated appropriately, and had extra hydration in radiology, in addition to being prescribed NeutraSal for Mucocitus & Dry Mouth, Nyststin for thrush, Magic mouthwash for pain in order to swallow, opioids.
OCF has a nice page to help you through the treatment process, and recovery, and recommend reading that, and if you have time, through the various blogs. http://www.oralcancerfoundation.org/treatment/
Good luck, and if you have any questions, ask.
Thank You for the reply. I am working with a Speech and Swallow Therapist at FoxChase Cancer Center. I see her again next week although I went to her last week when I found speaking to be a little more difficult. Again, i don't know if it is the acupuncture helping with this, but the speech problem seems to have subsided a bit for now. I am rinsing frequently with Baking Soda and salt, doing the stretching exercises and yes taking long showers with plenty of steam. I have the humidifier and a bed with the feature that keeps my head raised. Also sleeping allot more now. Not real thrilled the discomfort is expected to get worse from this week forward, but I guess it is to be expected. I only have had to take pain medication once so far. Monday begins week 4 of 6.
I'm glad you're at a top cancer center, that helps a lot, and seem to be doing everything you can be doing. If the salt burns, you can cut it out, with your healthcare teams approval. Everyone is different with side effects, as are treatments, which chemo can compound, but see you're not doing any.
Good luck with week 4.
Thank you again, also thought it might be helpful to share what I am doing and how I am feeling week by week to help others. Again, realizing everyone is different. I just know I am going hate Vanilla after this is all done.
Why do I say hate vanilla, not big on liking very sweet items, chocolate is too sweet for me. I have been sticking with Vanilla.
When my husband finished with his 35 sessions of radiation, his epiglottis was swollen even att the 12th week mark. We were told that if he had forced down a box of Ensure, he would have drowned. In fact, what happened was that whatever he tried to get down (in teaspoonfuls) would come back up after a couple of days. The RO prescribed gabapantin which helped a bit with the swelling. The most important thing, I would say, is patience and wait for the swelling to subside.
For the thick mucous, you can use a waterpik with warm water, a bit of magic mouthwash, the tongue scraper supplied, and put it on the lowest setting. It gets rid of the thick mucous quite effectively and makes your mouth feel fresh. It's a technique I picked up from this forum way back.
Hang in there, you will get through it. It can be frustrating at times but the discomfort does end.
I forgot about the pills. Not all pills come in liquid form. You might consider using a mortar and pestle to pound the pills into powder and put it in some applesauce. It is a nice way of getting it down. Of course, always check with the doctor to see if the med comes in liquid form. Doctors tend to forget your needs, so you MUST remind them of it.
I made my own applesauce once a week. I kept it in the fridge and it kept well. I sometimes mixed apples with pears, just to vary the taste.
There are also pill splitters available at your pharmacy or even on Amazon. I got mine at GNC health foods.
Hope this helps.
Twelve weeks after radiation the swelling was still there ?
Leonard, the RO said my husband John was sensitive to radiation.i think that's why the swelling took a long time to subside. It also depends on how much radiation one has been given.
[quote=OES]I just know I am going hate Vanilla after this is all done.
Why do I say hate vanilla, not big on liking very sweet items, chocolate is too sweet for me. I have been sticking with Vanilla. [/quote]
Haha, I hear you on feeling like you'll hate certain things after this phase of your recovery is over. I had the luxury of owning a blender and a masticating juicer, so I was able to prepare myself a fairly wide variety of drinks to help me through it.
I don't have much of a sweet tooth either, but didn't find chocolate objectionable, so I added things like peanut butter, coffee, malt powder & cherries to change it up. Maybe it's because I prefer the darker chocolate, which has some more bitterness to balance out the sweetness. I'd make vanilla based shakes with vanilla ice cream and milk, adding various things to "shake it up" as well. Coconut milk, various fruits, peppermint extract. Also added a scoop of whey protein in most of them, in an attempt to make sure I'm getting some protein in my diet.
I'd get sick of the very dairy-heavy diet, so then I'd break out the juicer, which also let me feel as if I was able to get some veggies in my system & cut the sweetness down quite a bit. A simple green juice with celery, cucumber, some kale or spinach & an apple, really hit the spot for me.
Thank You I see all different times of how long for the radiation to wear off and things to get back to normal. This has been hard to accept. I have this date that people keep cheering me on to, you are at half time, only three more weeks to go. - It does not mean I am magically going to feel better or be able to drink a glass of water without being in discomfort.
I have the juicer and blender here, just not sure what to put in it. So hard to swallow. I will take some of your suggestions.
Ask about the magic mouthwash if they haven't already offered it up as an option.
Hmm, what to put in a juicer and a blender. For juicing, I really like a basic green juice. So 4-6 stalks of celery, a cucumber, 2-3 leaves of kale, an apple (remove the core & seeds), half of a lemon (I don't use the entire half of the lemon peel, but put a little bit of it in there). You can tweak it based on what you might find in your fridge or what looks good to you at the veggie stand. Sometimes I'll throw some carrots, half a beet, spinach, a thumbnail sized chunk of ginger, or a pear in there. To me, this is to be used as a supplement to improve your diet. Even though I can eat almost everything again as I did before cancer, I still have the homemade green juice several times per week to make sure I'm getting enough fruit & veggies in my diet.
With the blender, you can make smoothies and milkshakes. For a smoothie, just use frozen fruit & add some liquid of choice (even more fruit juice, or water). Something like a frozen banana (just peel them & put the bananas in a bag in the freezer), a cup of other frozen fruit (blueberries, peaches, strawberries, mango, pineapple, or whatever you like), and some water or orange juice to thin it out. I'd also throw in a scoop of vanilla protein powder.
For milkshakes, I just kept a big 4 liter pail of vanilla ice cream in the freezer. When I wanted one, I'd add a few scoops into the blender, add a cup of milk and then whatever floated my boat. A couple of tablespoons of dark cocoa powder & a few tablespoons of peanut butter. Or a can of coconut milk. Or cocoa + malt powder. A cup of blueberries. Some cherry juice. Cocoa powder + some coffee I brewed in the Aeropress. There was no real recipe being followed - I just did what I wanted on a whim. I'd also add the whey protein powder if I felt I wasn't getting enough protein that day, but there's only so much your body can absorb & make use of.
Obviously these blender drinks are fairly high in calories, so don't overdo it if you can actually eat "regular" food! But for someone having difficulty eating & stuck with a liquid diet, it's an efficient way to keep your calories up while reducing the amount of food you have to try to force down.
Hi Leonard, I just looked back at your initial post. Three or four weeks into treatment is still early days. You may find that as you move forward, it gets even harder to swallow. Have you been fitted with a PEG tube for nutrition? John was eating and drinking until about the third week into treatment, then it just got too difficult to even swallow a couple of sips of coffee.
The effects of radiation are cumulative, so you will notice the effects much more as you get more treatment. Can you at this point manage a poached egg, some yoghurt or some soup?
Do you have the support of a dietitian at the hospital? He/she will be able to help you decide what's best for you in your circumstances so that you can stay hydrated and receive the amount o\f nutrition you need.
Sounds like you're currently in the same boat I was in 4 months ago.
I finished my 42 radiation treatments at the end of August. By the time I was done, I couldn't eat and I could hardly drink water. You know the routine. I was seriously starting to lose weight.
I took a couple Tylenol to try to stop the pain long enough to eat and I choked on 1 and tore my epiglottis. The next day, I went to the ER and was admitted for gross dehydration and difficulty due to the torn epiglottis.
While there, we decided to put in the feeding tube. It was the best decision we made and I wish I had done it at about Week 4 of my radiation to be prepared for when the worst hit.
With my tube in place, I could easily get 2300 calories a day of protein-rich liquid food. Protein is very necessary to rebuild cells and tissue killed by the radiation.
Now...taste and salivation. The good thing about the feeding tube, is I could get all the calories I needed while experimenting with different foods and drinks. To be honest, for 2 months after radiation, EVERYTHING sucked. It either hurt my throat, tasted awful or gagged me because of lack of saliva. I was discouraged, but my wife kept pushing me to try new things.
Slowly, things became edible again. Scrambled eggs were good again, but milk was bad. Oddly enough, steak was good, but chicken was not. In other words...lots of experimentation. Salt was a big issue. Anything with salt was VERY salty, so I had to learn to adjust.
By December, I had gained back weight and more and more was edible. I started reducing the number of cans of liquid food (Jevity 1.5) I drank through the tube as I was able to eat more regular food. By the end of December, I had gone an entire week without using the tube as I was able to find more food I could eat...and actually enjoy again!
I went ahead and got the tube out on Jan 4, about 4.5 months after my final radiation. In the past month, my taste and saliva have improved exponentially. I'm not just EATING food again, I'm ENJOYING food again! The issue with salt is mostly gone. I still struggle with pizza and spaghetti sauce, but I'm not sure why. The saliva is still a slight issue, but hugely improved.
My advice...get the feeding tube. Then you can recover your taste and saliva and not sweat the calories. It's a little inconvenient, sure. Yeah...I even peed on it a few times! It IS in the way sometimes. But it saved me and I believe that all the protein I was able to get while recovering helped me recover more quickly.
My PET scan says I don't have cancer anymore and things are good. My throat still does get sore but not like it used to. It'll get better.
I really think you should get the PEG tube. Hang in there.
Thank You everyone, I am really trying to avoid the feeding tube. I have 15 treatments left at this point of a 6 week process. Today while driving I expectorated ( I prefer this word over the one that begins with V) mucous most of the day in large quantities. Then did the same with water I drank. I am not getting the calories I need and my throat is getting worse. I guess starting to feel much better at three weeks after treatment may not happen.
Do you mind if I ask why you're trying to avoid the feeding tube? I ask because this was my original thought too. When I was at Week 4 like you, I felt OK. By my last treatment, I was in bad shape, wishing I had the tube. A few days later, I got one and my improvement was remarkable. My worst time was actually the two weeks after treatment ended. I slept all the time, the little bit of food I tried was awful, my neck skin was scorched and my throat hurt. But due to the feeding tube, I at least started gaining weight. Plus, I got that absolutely essential protein.
True story... About seven months prior to my diagnosis, a buddy of mine got the same diagnosis as I did. When I was diagnosed, one of the first things I did was call his wife for advice. The FIRST thing she said was, "get the tube." She watched her husband go from 210 to 140 lbs.
I know this is a difficult time and it's tough to know which decisions to make because you get so many different opinions. That's how I felt. I only had to have my tube in for a little over 4 months and I'm convinced I've healed so well because I got lots of calories and protein early on. If I had to do it over again, I'd get the tube at about Week 4-5 of my treatment. Things went downhill quickly after that.
Regardless of what you decide, I wish you the best. You can beat this!
You are correct the thought of the tube has me uncomfortable, freaked out in fact. But then again so does most of this process. The hospital would prefer I do not get the tube. They actually threaten you with it if you lose too much weight. I have been doing ok at maintaining the weight so far but you are correct. I am getting more uncomfortable and I am in the middle of week 4. I can not imagine how week 5 will be. I keep thinking I am almost there, almost done. The frustration is and I have said this before , each time I adapt the problems change. I will keep an open mind and I know how important the nutrition and hydration is. My wife is a nurse and she is trying to help keeps trying to introduce new options. I was doing ok with a few milkshakes a day, today was just not a good one.
My ENT was against the tube, too, at first. He's in favor of avoiding surgery if possible, plus he was afraid that if I got the tube, I'd neglect my swallowing muscles. AFTER I was hospitalized for dehydration he decided the tube was a good idea. But I DID go to a speech therapist and work on swallowing exercises while on the tube. I still do PT at home on my neck to prevent permanent stiffening and my neck muscles continue to be tender.
I don't understand the hesitancy by doctors and hospitals about the tube. Maybe unless you've experienced it, you just can't comprehend the difficulties patients in our shoes go through with eating.
Feel free to IM me with any questions. Eat and rest when you can!
If you are not taking in enough calories and hydration by mouth then you may have no choice about getting a feeding tube. This downward spiral quickly becomes a cycle. You dont feel well enough to eat or drink so you dont which only makes you feel even worse. A patient who refuses a feeding tube and isnt able to maintain the daily minimums will have a more difficult time with everything. Every single day you need a bare minimum of 2500 calories and 48-64 oz of water. If you can push to take in more that will help you make this easier. Those patients who think its ok to skimp on their intake will eventually get admitted to the hospital for malnutrition and dehydration. PLEASE, be honest with yourself and accept the help of a feeding tube. Its a temporary tube, you may even only need a nasal tube for a few weeks.
As far as helping with your intake, ask your doc for an open prescription to get extra hydration in the chemo lab a few times per week. This will help you feel a little better right away after a couple bags of fluids.
The weight loss goals for OC patients is not to lose any weight during treatment and recovery. This is nearly impossible considering how much the cancer cells burn up energy requiring higher caloric intake. Your body is also trying to rebuild itself at the same time which takes even more energy. This cycle is one Ive fallen into myself. Im speaking to you with experience and explaining it in detail so you wont suffer like I did. I felt so horrible at one point I actually felt like I was dying due to malnutrition and dehydration. My son practically carried me and pushed me into the doctors office in a wheel chair. My doc took one look at me and saw how bad my condition was and I was admitted to the hospital on the spot. You do NOT want to go thru that!!!
As treatments continue the get progressively more difficult. Your days will be spent more and more trying to rest. If taking pain meds you probably arent safe to be behind the wheel of a vehicle. Most OC patients have someone drive them to their treatments. If you dont have help like that, call the American Cancer Society and ask for a volunteer driver to help take you back and forth. Your doc fills out a form and you can get help as quickly as next week if you follow along and do the paperwork right away.
Another tip is to not think too far ahead. Take it day by day. Nobody can predict how the future will be. Try to avoid worrying about things you have no control over and focus on what is within your grasp... your intake. By constantly thinking ahead, you are only creating more unneeded stress making everything harder than it has to be.
Ok, thats enough of my rambling on about intake. Its up to you on this one. In this situation you cant fool yourself into thinking skimping will help you get thru this. The balls in your court to stand up and fight with having the fuel and energy to get thru this rough part of your life.
Wishing you all the very best with everything!!!PS....
Here is a recipe for something I used to make and drink when I went thru treatments. The shake has anywhere from 1200-2000 calories depending on how you make it. The list of foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate. Easy to Eat Food List
(All measurements are estimates)Giant High Calorie Choc-Peanut Butter Milkshake3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder
(check with doc if this is ok)
Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.
Christine has given you great advice. I'm adding a few things from our experience.
Before starting treatment, my husband sought out a second opinion at a CCC. The team brought up the PEG issue. They emphasized that some patients are physically unable to safely swallow at some point during treatment. They emphasized that it is not always a matter of will. I don't understand threatening a patient about this.
My husband had PEG placed before tx. He started using it after week three. He lost zero pounds because of it and I believe that helped him recover. He is able to eat all foods with liquid.
Hope you are able to get this resolved,
Got a patch for Nausea behind my ear yesterday, helped with the constant throwing up the mucous which is making a little difference already. I have heard the advise loud and clear. I will watch for the continued signs of needing a tube, I say continued because they have already begun. Yesterday I got just about 1000 calories. I am up to 800 today at just noon. I have 14 treatments left including today, including today I have 12 more times I need to go to Fox Chase Cancer center for treatments.
I have not begun any pain meds as of yet. Once I begin I will have someone take me. I have a great support system and as much as I call my wife a nagging pain, I know she means well. I have lost a total of just under 10 pounds which I know I should not lose any, but I am overweight to begin with.
Coming up on the last week of Radiation 5 more treatments to go. As I understand these are reduced treatments. They say the the radiation will only be focused on the tumor now, I wont receive the one that is head on. Not sure I completely understand this, I only know as of my second treatment on last Friday I now have a shorter exposure to the radiation treatment. I have lost weight, as expected. probably about 13 lbs in total. I just need this thick saliva to stop, the Mucous is driving me crazy. I can deal with almost everything else so far but this.
Leonard, when you go for treatments ask the nurse if they can suction out the thick gunk. This will be a huge help in keeping it at bay for a short time. Your doc can also write a prescription for a portable suction machine for you to use at home. A water pik on its lowest setting helps remove the mucous as does gargling with seltzer water. I couldnt tolerate the bubbles so I didnt use the seltzer but many here have. Try rinsing your mouth a few times a day with 1 cup warm water, 1 tsp baking soda and 1 tsp salt. If it burns too much cut back on the salt or eliminate it if you have to, but do try to keep some salt in the mixture. Swish this around in your mouth for at least 30 seconds, 4 times a day.
I know its really hard to take in enough but it really is the most important thing you can do. By taking in at least 2500 calories and 48-64 oz of water every single day it will help you to recover. If you are able to push and take in more like 3000 calories or even more, that will only help to make this whole thing easier on you. Try the choc-peanut butter shake I mentioned above. It has almost all your daily caloric intake right there in one big shake.
Hang in there, almost finished
Thank You Christine, first I am not getting enough calories, I am getting about half of what I should get. I am doing the baking soda and salt rinse several times each day , maybe as many as 15. It does not bother me, no burning or pain with it. I never heard of the suction machine, looking on line to see what this actually is. I am curious how long after the treatments end the thick saliva will fade away.
I am getting more water down now since I switched to drinking warm water.
From your summary it looks like you have endured some difficult times, I can't imagine what it must have been like.
I forgot to mention if you are struggling with your water intake ask your doc for a prescription to get extra hydration a few times per week. This will help you to feel instantly better by getting extra fluids.
To me it sounds like you are doing very well. No pain meds is practically unheard of for OC patients.
Anywhere from 3 - 6 weeks post rads the thick gunky mucous will suddenly stop. I actually thought I was magically better but oh no... the gunk turned into the dry mouth phase. The dry mouth will be bothersome and last for a very long time. Some patients have improvements up to about the 2 year post rads point and others will become lifelong water bottle carriers, toting a bottle with them everywhere they go.
Hang in there, soon better days are coming
Thank You again Christine, the Dry mouth will be unpleasant, I experienced it occasionally with some meds I had taken in the past. I don't know that anything can prepare you for this as you call it gunky mucous. I can't wait till it is gone, that day can not come soon enough. That will be a day for celebration.
For discomfort I started with liquid Advil the children formula. A little magic mouthwash followed by the liquid childrens Advil and a little children Mucinex is what I started using recently. The pain is not that significant compared to the gunk. I don't know if I attribute the reduced discomfort to Acupuncture which I had been getting two to three times a week since the beginning of the treatments. Interestingly I started on the Advil when I did not have access to the acupuncture, the person left for Chinese New Year and the backup person is also not available since last Wednesday.
I was having a problem with water until I shifted to warm water. Seems to go down much easier. My wife is also a dialysis nurse or I guess I should say now she manages the acute dialysis program for about 30 hospitals. The nutritionist gave her some samples of an item called Liqua Cel. I have the peach Mango flavor. The package includes about 1 ounce of liquid you mix it with a small amount of water and it provides 90 calories and 16 grams of protein. http://www.amazon.com/LIQUACEL-CONC...5523771&sr=8-4&keywords=liquacel
Thanks for the tip about the liquid protein!!! Im going to order some. Ive searched for an alternative to the whey protein powder. When ordering thru Amazon, please go thru the our link on the upper right of any forum page. This helps OCF by giving a small kickback (to a small non-profit like OCF, its a big help).
I use Amazon frequently, I can use the link in the future. After I sent this last night, I found the web site for the company, for $4.00 they will send samples also. Looks like you get a variety of items you probably do not want. http://globalhp.com/index.php/shop/supplement-sample-kit/
Here we are - Two more treatments to go and I am finished. The burning question is how do I know it worked. Maybe no one should answer that question my first follow up is scheduled for a month from now when they will place a scope in my nose and take a closer look. It just would have been nice to have some assurances the tumor was going away. Two more treatments and the healing begins.
Just a quick thought about the quick saliva issue ... I have found that dairy products was a cause of this problem in me. I also use a generic form of Mucinex, but at this point it is a crushed tablet put through my feeding tube. By adding more citrus to my blended diet and by switching to almond or cashew milk, I have found a great deal of relief. Also increasing my water intake helps me too. Just personal experience that might bring you some relief too.
Just remember, everyone is different. Any patient who is going thru rads or even months post rads probably would not be able to tolerate citrus of any type. Most OC radiation patients have extensive mouth sores during rads and the first month or 2 afterwards. Citrus foods would burn like crazy! Dairy products tend to cool anything acidic making the dairy foods easier to tolerate.
Also remember that the thick sticky mucous produced with radiation therapy is a result of the effects of the radiation on the salivary glands.
Kris still can't tolerate any citrus and he is 5 years out of radiation treatment.
Staying hydrated is always a good plan.
Final Radiation Treatment completed yesterday 2-19-16 . To my surprise several friends and family were waiting for me as I came out including what seemed to be the entire radiation team including nurses and people that work the machines. It was an emotional day, finally being done. At the same time it was sad, as my cousin who was an ENT and got me to the care that I needed, passed away suddenly while on vacation in Hawaii with his family. What a great Dr. he was Dr. Jeffrey Cooper. He wrote me a note just before his sudden passing. The note said "My joy i really helming my Patients and Family, I am honored that you asked me to help you"
@ Kimberly I will share the information regarding the Almond Milk with my wife. I always thought the milk and ice cream I was adding would make the mucous issue worse. Then she told me a dietician at work said this is not true. Who knows what to believe any more.
@ Christine I have found the Shandy Shakes have been soothing, don't like the way they taste but they do the job. Through this I lost about 16 pounds so far. I am still getting the protein I need just not enough calories, I really did need to lose the weight and I understand this is not the best way.
@tamyonk I may be setting my self up for depression, I am hopeful the gunk in my mouth goes away soon and the swelling is reduced in my throat to allow for eating normal food again. Time will tell, today is day 1 post radiation treatment.
I Switched to Soy Milk, I was told it has more protein and cut out all Dairy products, increased water intake. Been without any dairy for two days, today is day three, the mucous is actually worse, I assume it takes a few days for the change to have an impact. This is really causing a problem for me, can't sleep, can't get my throat or mouth clear of this. I just need it to end.
Leonard, this thick sticky mucous is actually the last hurrah of your salivary glands. It is the result of the radiation on them and nothing to do with dairy products. Once this stage finishes it is replaced with dry mouth.
Kris found that a personal face humidifier worked the best for the thick mucous. This had a facial mask type area that fitted to his face. He leant into it and breathed in the steam the humidifier produced. You can buy this from your Pharmacy. Hope this helps,
All of the Dr's and Nurses suggested cool mist humidifiers. Looking at the face masks they all seem to be warm mist. Regarding the dairy, it was suggested by a few people on the boards here that Dairy could be making the situation worse and thicker, trying anything I can to minimize this problem. I also added the motion sickness patch back in now I can dry out easier but obviously the problem is still there. Just waiting for it to go away. Day 4 no radiation.
Leonard, I'm sorry you are having these problems. All I can say is that you are in the worst part of treatment - they say the two weeks after rads are the worst. Things can only get better in a week or two - sooner I hope. I remember feeling better on Day 6 after treatment but my rads were milder.
Lots of people are suspicious of dairy but I have found it helpful. Anything mixed with milk seems to soothe my sore mouth. I used to mix Ensure or Fortisip powder with milk, ice cream and tinned peaches. Anything slightly acidic like a banana would burn my mouth. I don't think dairy makes mucous worse unless you are allergic to it.
I wish you well as you go through this tough time. You are not alone.
Thank You Alpaca
I took Morphine tonight at 11Pm and woke up at 2 it had no impact on my pain. My throat has now changed to being even more closed and sore than it ever has been. This first week after Rads is really getting the best of me.
You can ask your doctor for another kind of painkiller. People respond to pain killers in different ways. Sometimes Tylenol works better for some people, believe it or not. It is important to get on top of the pain. There will be other side effects to contend with, such as fatigue, skin breakdown in the area where you have been radiated. So, deal with the pain first, it will help make life a little easier.
Gloria are you saying the skin breakdown continues to occur after radiation has ended ? My neck is sore but never showed more than redness. I traded emails with the Dr. this morning. He wants to prescribe a fentanyl patch. After reading the challenges with it, I am going to try to stick with children Advil, I learned this week it goes down with out magic mouthwash. Plus it has an inflammatory element to it which may help with the swelling. If that does not work I guess the patch will be the solution.
Radiation continues to keep working even after treatments have ended. Im sorry but I cant remember how much longer it continues. This is why most patients will continue to decline and see more side effects during the first days/few weeks after rads ended.
Many OC patients would use some type of cream or lotion on their "sunburned" skin. I used a prescription called beta-val cream. Make sure whatever you put on your sensitive skin that you pat it on and never rub it in. Allow it to soak in on its own, reapplying several times per day. If your skin begins to have weeping sores thats completely normal, I had them too. At that point continue gently patting on the ointment and place a nonstick piece of gauze on the wound. Dont tape it on as it will only make things worse when it has to be removed.
The fentanyl patch is for pain. Its the strongest pain medication their is. Its very simple to use since you only have to put a new patch on every 3 days. Just be sure to always follow the directions by never bending, folding, cutting, tearing, ripping or otherwise damaging the patch. Avoid long hot baths or showers while wearing the patch too. But that should also be done if your neck has the open weeping sores from rads.
If you have only just started to need pain meds then you have done very well with your treatments. Most of us have been on pain meds from about the 4th week on. One thing that helps patients with how easily they get thru treatments is how well they can meet their daily minimums of 2500+ calories and 48-64 oz of water. If you have been able to comply with this then thats probably why you were able to do so well. Continue to keep up the minimums for at least the first year post rads to help your body recover.
Hang in there, very soon you will begin to feel better.
Christine has given you very good advice. The only thing I can add is that when you put moisturizing cream on your neck, pay special attention to the folds in the skin. Those areas will likely develop worse sores. For relief in between applications of skin cream, do a saline soak. Put saline solution on gauze and cover it with a clean tea towel. Leave it on for five, ten minutes. The saline helps with healing.
I have not been getting the needed calories and I know this is not good news, my weight was holding steady until today I had a surprise drop. My skin has not broken down at all I only am a little sensitive in the face and neck area. I have been using a creem called Miaderm radiation relief. Developed specifially for radiation patients. I decided to hold off on the fentanyl patch, I did not like the warnings that come with it. I am still using children Advil and Acupuncture.
I am giving myself till next Wednesday to see if I can continue to manage the pain the way I have, if not then I will go for the patch. The biggest area of pain for me at this moment is when I am doing the yawn stretch exercise. My number one overall problem is still the Mucous build up, this is what gets me down every day.
By not getting enough daily calories, it will make recovery much harder. After rads, your body has been thru so much it needs significant fuel to rebuild itself. Im a broken record about intake. Ive spent many days and nights lying in a hospital bed due to my own laziness and denial about what I was taking in. At one point, my son pushed me into the doctors office in a wheelchair. My doc looked at me and admitted me into the hospital for dehydration and malnutrition. I felt so terrible, I actually thought I was in the first stages of dying. Ever since I recovered, I turned into a nag about intake so others wont suffer like I did.
The thick gunky mucous is horrible! Its can make you gag. Have you looked into getting suctioned at the doctors appointments or asking your doc for a prescription to get a portable suction machine to use at home? It really does make a huge difference when you get all the thick mucous suctioned. Soon enough this phase will be over and the dry mouth phase will begin. Most patients switched from the heavy mucous to a dry as the desert mouth seemingly overnight around the 3rd or 4th week post rads. I know its a horrible side effect. Hang in there, soon you will be past this phase.
I asked about the suction machine last time this was suggested. The Dr. Had never heard of doing this. Happy to say I gained some of my weight back tonight. Even though I am not getting enough calories my wife is trying to make sure I get the protein. I am hopeful once this mucous problem ends I can begin taking in more calories. I spent a man nimum of an hour just trying to get clear before I go for the Scandi shake
Frankly I am looking forward to real food again.
I wish your doctor had been able to help you with this! Ive had the mucous suctioned out several times by the nurse. Its not pleasant but the relief I felt afterwards was priceless! Im surprised the doctor is not aware of how helpful it is to patients to use a portable suction machine. Which of your doctors said they never heard of this? Maybe try asking your radiation doc or their nurse.
Check out page 4 of the following document. Its titled Managing Copious Mouth/Throat Secretions
Stratagies for managing Radiation Induced Mucositis
Here is one of many threads on managing the thick mucous. Excessive phlegm thread
Oh my This thread depressed me even more. There are people that have this problem years later.
I need this gone.
Leonard, have you tried using the Waterpik? My husband used to say it was the best purchase I had made for his treatment.
Sounds like you could use a good dose of hope.
3 years and 3 months ago, I was in the same place you are. I got a peg tube with 1 week of rads left. I reached the point I could no longer get anything down orally. Every day was a struggle, every hour was a struggle. 1 week after rads, whenever I had the energy, I hobbled into the kitchen to push liquid food into my peg tube. Knowing that it was probably that I would throw it up. Let me tell you if felt like razor blades coming up. Then, knowing I had to try it all over again.
My weight was down 30 lbs off my 150 lbs frame. I stopped talking completely. It got so bad the doctors forced me onto a feed pump system. I started using it week two. By the third week I noticed is stopped getting worse. It did not get better, but finally stopped getting worse. That was huge.
By week 4 I got off the feed pump and I was able to go back to manual feeling the peg tube. Week 5 I made an appointment to see a speech therapist. She did the swallow test. Hurt like hell. That was really the first swallow I had in 4 weeks. However, the Tech said "you have some leakage but it time to start relearning to eat. Over the next 3 weeks, she made me eat with electrical pads on my next that showed the muscle strain. My goal was to swallow hard enough to reach 50 units. I started around 20 but by week 3 I got up to 50. Still hurt but I was eating food. By week 7 I wanted the peg tube out. Once I started eating things were getting better.
Fast forward 2 months and I was able to eliminate the liquid supplements.
You are now entering the toughest faze. But things will get better. Focus only on getting through the next feeding. It suck, I know, been there. Feeding turn into days, days turn into weeks. I promise you by week 4 things will start to turn, And that is "HUGE".
I am now 3 years out, and I am sure you would not know what I went through.
Don't worry about tomorrow, just get through the next feeding.
Thank you again to everyone. I am still swallowing liquids. It takes time but I am getting it down. Yesterday I went back to the hospital they gave me IV fluids due to dehydration. Going back Monday to get checked again.
Hi. You can't really judge from old threads because people might have had more than one round of treatment. I'm sure your mucous stage will be of shorter duration. I'm no expert but maybe better pain meds will reduce the discomfort from thick mucous. In my experience discomfort can be as bad as pain and some pain meds (for me Oxycodone) reduce the sensation of discomfort. Just an idea. Remember, you are going through an acute stage ... it won't last forever.
Thought I would add an update, now 12 days post radiation. The disgusting mucous is still in my mouth. I went back to the hospital on Monday to get checked out, no fluids needed. Weight has stayed pretty much steady overall down 20lbs would not mind dropping another 5. (yes I know this is not a weight loss program) I am not in allot of pain. Just this awful mucous.
You are in the toughest part of the journey but won't be long before things stabilize and you'll slowly start feeling better. I was with you on the "free" weight loss program. I had planned to try to hold my target but lost an additional 5 or so before things stabilized. It is tough to keep eating but no matter what keep fluids going. I slipped once and ended up in ER needing some IV fluids.
Mucous is variable - some get none, some get a lot. I did not get it that bad so not much advice on that front.
Hang in there; brighter days ahead soon!
Just wanted to say that my mucous stopped suddenly three weeks after treatment. I was desperate for relief. Even had a hospital suction machine it was so bad. Someone else had posted it took them three weeks for improvement and I held on to that. It happened. I know no two people are the same. Have hope. Now I have a dry mouth which isnt the best but its way better than that mucous which was actually saliva the doctor said.
you are the second person that said it stopped after three weeks and said dry mouth quickly followed. I can not wait, I am so looking for some relief from this. I have no significant pain other than the muscle tightening which I do the jaw stretch exercise to work out. This damn mucous keeps me up at night, I sleep best sitting in a chair. I also asked about the suction machine more than once, they have not offered it. Was going to purchase my own and they said I need a prescription. I go back to the hospital to get checked again on Friday, I will ask again although if I follow the same path I may have one more week of being absolutely miserable.
One question I have not asked, once the mucous stopped how was eating real food afterwards. I have not had solid food in over a month.
Leonard, when dry mouth sets in, you may find that swallowing gets a bit difficult because there's not enough saliva to lubricate the food and help move it to the back of the throat. You may have to eat food that is moist with lots of sauce, of have a glass of liquid on the table. Some people have a bit of food followed by a sip of water. Have small mouthfuls at the beginning until you are sure you don't have any problems with swallowing. You may also find that some food now taste different. You will eventually figure it all out. Good luck.
Regarding the waterpik, how did he use it, how did it help ? I have a small one I use battery powered to clean between my teeth. When the mucous is in the roof of your mouth and down your throat it seems impossible to get rid of it. This week I was so frustrated I place the house with the sprayer in my mouth. It actually cleared things out a little but caused pain because of the muscle tightening. It seems the water pic stream would be too narrow and too much pressure.
Thought I would share an update. Today was two full weeks post radiation. I am Not had solid food in over a month. Until the mucous in my mouth goes away I do not even want to try. I am having great success with large amounts of water taking big gulps, the shakes and instant breakfast no problem going down. Pain is not a big deal just discomfort. Weight loss has stableized it seems, have not lost too much recently. Tightness in my jaw near where the tumor was/is I continue to stretch interesting how uncomfortable when I yawn, it pulls on my throat, Jaw mouth. I continue to stretch but it goes back to the tightness. I have not seen much about this topic if it is remains this way forever or you just get used to it. Of course the mucous is the biggest problem today. Entering three weeks post radiation, I hope I am one of the lucky ones that this ends for soon.
Leonard, fortunately I did not have the problem with the mucous so I don't have any first hand knowledge of what to do, however, some OCF members recommended seltzer water. I found a post from June 2012 by Charm2017 talking about this. Charm was a very knowledgeable and helpful OCF member who passed away a few years ago, but his posts contain a lot of valuable information. Hope this helps. Wishing you the best!
As discussed, the thick mucus or rope mucus mainly goes away 2-4 weeks after radiation treatment ceases, when the saliva glands, mainly Parotid, starts producing more thin saliva, which radiation mostly effects, and the two other major salivary glands, and hundreds of minor salivary glands in the mouth and throat compensate for the loss, and a reason why we have more thick mucus until then. IMRT is designed to be salivary gland sparing, and the radiation dosage, less than 30Gy, Volume, less than 50%, is usually planned so they may recover, and in some trials, are not radiated or only one side of the head and neck instead of bilaterally depending on varying factors.
Treatments, including chemo, have acute, less than 3 months, and long term toxicities, longer than 3 months, and It may take up to 2 years to fully recover from some, like salivary glands, although now at 6 years with various treatments I still have some that are on going, dry mouth, others new or being newly addressed, but can say it does get better, and most things will be a blur as more time goes bye, and felt differences at 3 months, 6 months, 1 year intervals maybe that coincided with my doctor visits/scans.
As far as thick mucous, I have tried a number of things, through several of my treatments and after treatments. Milk does not cause thick mucous. Its enzymes replicates saliva, coats the mouth, gives a feeling of such. I couldn't drink milk, ice cream, even yogurt, for years, since the lactic acid burned my mouth, plus having altered sweet taste.
Sleeping on an Incline
A humidifier as mentioned
A warm shower
Rinsing with or drinking pineapple, papaya juice, now I drink beer occasionally!
Rinsing with brewed tea
NeuraSal, a prescription rinse which helps with mucocitus and dry mouth
Having the radiation center spray my mouth out with saline solution
Brushing often, tongue, gums too, gently with bristles softened with warm water
I've only used a suction machine in the hospital
Oral sponge brushes to get in the mouth, get out thick mucus, brush teeth with
As always thank you for the updates, I hope they help others as well. There are some new ideas here to try to get my mouth clear. This morning I had another challenge I decided to eat a prune to help and had some fiber added to my morning shake. The prune was the first solid item I had eaten in over a month. My stomach was making some very odd noises and bubbling. Actually for the first time in a week, I am not feeling so wonderful. If Paul and others are correct this mucous will magically disappear in one to two more weeks. That will be wonderful.
Leonard, the tightness in your jaw could be a sign of trismus. There are varying degrees of trismus. Do you have a dental department in your hospital? The doctors there can advise you about trismus (if indeed that's what is happening). There is a contraption called Therabite that can help stretch those muscles.
Thank You Gloria, never heard that term before, reading up on it now. The the exercise the speech therapist has me doing since before treatments began including the jaw stretching and three finger stretch as mention on the page with information about this condition. Just never heard it called that, Learn something new every day, almost.
Unfortunately, you cant rush the healing process. I thought as one of the younger patients (38yo at the time) I would breeze through my treatment. It was a solid 6-8 weeks post treatment I think before I could start working half days at a desk job.
It takes a loooong time for your saliva to thin out a bit, the radiation continues to do damage for a number of weeks after the actual treatment stops. Then finally you start to heal.
I would say 2 years post treatment I can eat some small amount of dry foods before needing a drink. I can sit at my desk without a drink no problem for hours on end. Flying is a bit different. I need a bottle of water. Also at night I wake 1-3 times depending on relative humidity and need a drink.
I would say the jump/timeframes in differences between functionality of the salivary glands are around 3 months out, 6 months out, a year out then 2 years out.
Thank You Brian, here is hoping you are wrong on the time table for the mucous to go away. I expect there will be some other challenges with the dry mouth, I just need you to be wrong in my situation on the mucous. This is week three so I guess we will see how it goes by the end of this week. It is beautiful out this week on the east coast. Looking forward to getting some fresh air this week outside.
I know everyone is different, I am back at my desk working more about half a day but i have the luxury of working from home. I admit there are somedays I can't stay at my desk and night times are uncomfortable.
I wouldn't like for you to set yourself up for any disappointment, but there are no right or wrong answers as far as each persons recovery time nor are there any guarantees, and reason I said, it "mainly" goes away, as far as the ropey mucus. I'm 5 years out from my first radiation, although 6 years from my first chemo, which was worse, and still have thick mucus, but it's not the ropey mucus it was right after radiation, even chemo, that needed rolls of paper towels, suctioning, medication, trial and error as far as what worked for me. Besides the time frames, there are many other factors that influence ones recovery, at least ones I know about, that may need to be looked into, some with your medical team, to help maximize.
Try to take one day at a time, each accomplishment as a giant step, at least I try to do, sometimes lol, even though at times it seems like I take a step backwards, but it does get better, and been through this many times before to know.
Good luck with everything, and keep up the good work, and posting. It probably helps more people than each of us know.
I think I am going to be disappointed and frustrated if this does not clear soon, I need to get back to work full time and have several projects that I need to travel outside the country for. I want to get back to eating foods again. I have tried putting certain foods into my mouth, what a bad experience that was, I guess I tried too early, everything is so dry and sticks to your teeth. I will keep trying until I can get past this and some sort of normal.
For my treatments, I never had Chemo I had radiation as my only treatment.
Hi Leonard. Soft foods or more solid foods with tons of gravy are best until things settle down. I remember a young person who was just ahead of me in radiation treatment telling me she smothered everything in cream, sour cream and butter. She had lost a lot of weight so it killed two birds with one stone. If you have bread or toast you need to put a LOT of spread on it. She said she put butter on cake:)
There's a list of soft foods on this site somewhere.
During and after rads I survived on fortified milkshakes and smoothies. Gradually I found I could eat a few things here and there. I'm always calculating in my head: am I getting enough protein, vitamins etc? You have to be a little bit more organised when normal eating is compromised. Shouldn't be too much longer for you now.
I guess this thread should be updated to go to the post treatment thread. I thought I would throw another update in. Possibly to help someone else to have a timeline of how someone else is doing.
I have just entered week 4 post radiation, The biggest problem I have had seems to be changing, I do not have as much mucous but it is still there and more in my throat than in my mouth. Certainly there are times when it gets extra thick and I cough bunch up but now where as much as the past two weeks. Now it seems like I have more of a thick saliva that is string and accumulates fast, still going through many tissues.
By the end of the day my throat is really sore and difficult to swallow. I don't know if it is swollen or dry, have not figured that out yet. This started in the past week, after I drink the disgusting shake with protein and calories it seems to ease up a bit. I am also still drinking warm water to wash it down. This seems to work better than cold water and is more soothing. I have tried to eat a few solid foods, really a weird feeling and does not clear my mouth so easy. I really want Pizza. I am still wearing the patch for nausea, Have had this on for several weeks now, obviously switching it every three days. I am also still going for acupuncture but down to one day a week. I have no idea if this helps or not, I have not had any serious pain at all. I am now able to swallow smaller pills with a big gulp of water. I have been doing the recommended exercise with my tongue and jaw as recommended by the speech therapist. Discomfort seems to come more at night, throat gets really sore which is when I have been taking the one aleve. In the stretching exercise when I was first told begin it now before treatments were beginning I could not see the point. I did as was suggested and now I can understand why. even a serious yawn pulls as my throat. I have lost just over 20lbs and seem to be holding steady.
Last week I began fruit smoothies, Peach, Strawberry and Banana with Apple juice, the original impact was uncomfortable, I realized it was not because of the citrus it was the cold.
With all of this I realize from all the comments, suggestions and information everyone is different. Everyone moves at a different pace. I do have one other concern which I will wait to ask the Dr. about before adding anything here.
Thank you to everyone who has provided feedback, because this appears to be a cancer that several people are getting I hope the responses others have give me help new readers who are as scared and confused as I was in the beginning. Not that I am not still uncertain about how long before I get back to something close to normal and of course what the new normal will be. Here is hoping they got it all.
Watermelon juice works well for people with sore throats. It is quite soothing. Maybe you could give it a try. It is beyond reason what one can swallow or not swallow -- my husband had to give up chocolate as it gave him an itchy throat.
What the heck, I mentioned in my last post the Mucous was subsiding, now I have this Saliva which I mentioned previously, thick, ropy, foamy. It just flows and does not stop, how long is this phase going to last.
Boy Im sorry you are having this hit! Seems like its always something, isnt it Leonard?
For me, the thick ropey gunk phase was very short. I kinda remember it only being around a very short time before the dry mouth begins.
For this type of thick ropey stuff, the waterpik works the best to clear out your mouth. Some find gargling with seltzer water helpful.
Hope it moves on quickly. Best wishes!!!
Yes it is always something, I clear one challenge and get a new one. Between the sore throat and this new stuff it is frustrating. Glad it does not last long.
Here we are end of week 4 post radiation. Thought I would have stopped with the stuff in my mouth. As I posted on the 17th, it just changed and seems to have gotten worse very little actual mucous now.
The new items as I started to mention seems to be getting produced based on the roof of my mouth. I seem to have gone back to everything burning again there, someone how I must have damaged it. I am back to using Magic Mouthwash again after not needing it for almost two weeks. It seems as soon as the burn starts the white thick foamy saliva flows. Now it flows most of the time just much more when I irritate the roof of my mouth. Anyone have suggestions on how to make the roof of my mouth heal fast, trying the usual frequent rinses, trying Peroxyl a few times a day for the past three days.
Another note My neck is still sore and a little swollen where the I received the radiation. I guess this is to be expected for a while as well.
Alternate rinsing with your peroxyl and the salt/baking soda/water mixture. Its 1 cup of warm water, 1 tsp baking soda and 1 tsp salt. Swish gently for at least 30 seconds, 4-6 times a day plus doing the peroxyl several times as well. The salt could burn your sensitive mouth. If so, cut back on the salt to 1/2 tsp or omit it completely. But, try your very best to tolerate the salt in the rinse as it will help with healing.
Watching your protein intake and pushing to make your daily intake higher will also help with healing. Unfortunately, recovery from OC and its brutal treatments takes a very long time. Im sure you are like me and most patients who think a full recovery should have been completed as of yesterday. I found the recovery phase to be frustrating with making slow progress and then having set backs it seemed whenever I got ahead. Many here have found success with using high protein whey powder added to their liquids (or tube feeds). Protein helps healing from Livestrong
Hang in there
As always thank you Christine, my wife tries to get as much protein into me as possible. Somedays more somedays less. I thought I would be healed last week, did not work out that way. Today I ate half an omelet, needed water to wash it down, that was a big step.
Glutamine powder also helps in tissue repair. I was given Juven by my cancer center, which is a targeted therapeutic nutrition drink, OTC I think, with glutamine powder, to support tissue building and to help build and maintain lean body mass. It's made by Abbott, same makers as Ensure, and have different flavors, not bad, taste like Gatorade at least the fruit punch.
Some report good results with manuka honey in healing, but it's expensive. I just swished and swallowed organic virgin coconut oil, and or distilled aloe juice instead.
Virgin coconut oil with salt and baking soda rinse is also being used, and may be a little more beneficial than salt and soda alone, to help with mucocitis.
My last treatment I was given prescriptive NeutraSal, supersaturated calcium phosphate rinse, to help with dry mouth and mucocitis. I found it better than salt and baking soda rinse as far as taste. It's a dissolving powder in individual packets you mix with water, can be used 2-10 times a day.
Avoid foods that are too hot, spicy, acidic, sharp textured to help prevent irritation, and ulcers.
Hope this helps, and check with your doctors first.
gargling with club soda really helps clearing up that thick as hell mucus... I must have gone thru a 55 gallon drum of the stuff in the first 3 months post treatment.
Brian- 3 months- I hope it is gone much sooner than that. I already passed the 3 week mark that many said it stopped for. Tomorrow will be 5 weeks post radiation. Paul B I have a bottle of Juven mixed up and waiting for me in the other room. Hope it does not taste awful and does the job.
Baby steps today I ate half a pancake, yesterday it was 1/4 a Quesadilla. What I found interesting , while eating the pancake this morning and the Quesadilla yesterday no foamy stuff was being produced in my mouth. When I stopped 5 minutes later it was back. Yesterday I went to see the Dr. and the Speech therapist. I wanted the Dr. to look at the roof of my mouth, no real explanation as to what it happened. Just reminded me I was only 4 weeks out and base of tongue cancer recovery takes time.
More next week.
Everyone is different, learned it the hard way. Some people coasted thru others not so much. It really has to do with how the dosage is delivered and your physiology.
I'm looking back at my posts, and it was around the 4th week post treatment that things turned for me regarding the mucus.I contracted a flu around week 4 that could have delayed other progress a bit. Got off the pain meds and started back to work around week 5 for half days, and back full time around week 7 or 8.
@Brian- it was around week 4 the mucous went away and now I have this other stuff that seems to be a mix between mucous and thick saliva. Not really sure what the heck it is. Interesting, I woke up this morning, no dry mouth, no foam or whatever I am calling this gunk. Took about an hour and it started and has not stopped since.
I have travels scheduled for the end of April, lets see if I make it or not.
Hi Leonard! We are all so very different with this. I am a year out and have the same thing you are describing at this point in your journey. My last battle the tumor got into my soft palate nerves and I lost that function so now some of this issue I believe is attributed to sinuses as well. I use the salt and baking soda mix very frequently. Keep containers stashed in all the bathrooms at home as it draws it out, at least for me. When in a work environment I use water or keep an "Extra water bottle" with mix in it and excuse myself to a restroom to expectorate (I also carry four or five sheets of paper towels folded in my pocket). I get it though, what a pain in the rear but hey, we're on the green side of the grass. Good luck to you with traveling, just be strategic and planned out, you will be fine! Prayers and all my best!
@ Steve F. Wow what a journey you have had. I went to see the Dr. He said he just shows irritation in the soft pallet area. For me I will not travel till this is over.
Although it should be obvious I never realized how much dry mouth would be a problem for your throat. I am now getting serious dry mouth through the night and day sometimes. When I clear it with water it is not long before the gunk begins again. Hope this means I am on my way to another change although the soft pallet in the roof of my mouth has become more sensitive. Had swallow test yesterday and was told I am doing remarkablle, better than most at this stage. Watched the recording of before and after was like watching a monster movie, very weird to see how all this works in your mouth and throat.
That is Great Leonard! Sounds like you are in the right direction! That "Junk" can build up quickly, I sure know that (As many on here know). Stay the course my Friend, further breakthroughs are on the horizon!
It has been several weeks since my last update. It was getting depressing saying the same thing, having the same problems and side effects. I just passed 12 weeks post radiation, I know I have a ways to go and a few more weeks till the follow up Pet Scan. I am although Happy - Very Happy to report I have turned the corner !!!
The green mucous as others stated would be gone in 4 to 5 weeks is gone and it took about 5 to 6 weeks. The thick saliva is still there but comes and goes and gets better all the time. I use water and other items like mucinex to thin it out.
I had not eaten anything other than trying a few foods here and there until recently. Today I a in Germany for work, I needed to go to Poland, Germany and Switzerland. I was Concerned the thick salvia, not eating getting somewhat week, how would it work for me.
I decided to take a short trip to a customer and many friends in the Nashville area, short flight and one night in a hotel. How would I do, what I learned is the hotel room dried out my throat, it was really bad, could not open the window, it was the first night without the three humidifiers I have around me in my room. I even at a little bit of brisket in one of the local restaurants. (really want to go to Austin for great brisket soon)
I came back home and had one new concern, I had headaches , sensitivity in my head and earaches that were more painful than anything else I had been through during the treatments. My wonderful Dr. at Fox Chase Cancer Center, responded to a text over the weekend, he frequently will do this and said come in Monday morning, I am concerned you have a Sinus infection. Turns out I was having a reaction to allergies, which I never really had before. Some allergy medicine a little sedated and flownase, I was in great shape except for making the dry mouth worse.
It was now off to Europe, day one I had something to eat in the airport lounge, Chicken Satay. The balance of the week was exactly like this ,eating more each day, having less gunk in my mouth and less incidences of dry mouth. Now I am still having some challenges but I am really pushing it, I even at pickles again, small pieces. (Side note, I tried a piece of Jalapeño popcorn last week, that was a big mistake) There were a few things I had problems swallowing or burned my mouth but I keep trying. If I push to hard I pay for it at night, my biggest challenge is still the dry mouth and how it impacts my throat. I do not have the process for how best to manage this down and hope it does ease up as I recover. The next big milestone is May 19th, petscan day.
For all that have responded, for all that have shared, it has helped, thank You !!! I hope to be able to repay the support by sharing my experience and story with others who are going through this journey.
I know there will be some typos or errors in this post, I wanted to write it and did not have much time. I wanted to share my success her at week 12 and thank everyone. I wanted to thank the Dr.s, Nurses and support team at Fox Chase. Next step to hopefully be told I am cancer free.
You are doing amazingly well. I want to say don't push so hard but you seem to have good sense of your limits. Except for the hot stuff. LOL
If you were one who could really take the heat, it may take time. All my taste and senses got back to normal in the first year or so. The one think that took nearly three years was the ability to take hot. I mean really hot, habanero and Thai, birdseye chili hot. i can take the heat but the only annoying side effect is my head sweats like crazy. Such a pain as a napkin gets really soaked and my hair gets all messed up. LOL
I wish you well on your journey back to your old self. Seems like you are doing great. don
This will be my last post in this category and maybe for a long time. This Thursday I had my PetScan and was pronounced free of Cancer.
I am 13 weeks post radiation. I am back to eating food as long as there are no serious spices or heat in them. I have been surprised a few times by the spices. My throat is still sore, I have not taken pain meds in over a week but know I will need to from time to time over the next several months. Dry mouth sucks wakes me every two hours, adapting and trying different solutions. I still get the gunk in my mouth and throat but think it is exasperated by Allergies. I am taking Allegra and Mucinex tablets each day, using considerably less tissues to spit into these days :-) My voice has gotten a little worse like I have too much gunk in my throat and can not clear it, I think this will get better over time. All in all I am on a good path.
I know my recovery still has some time to go, they say it is one year or so before you know what your new normal will be. last week I learned about lymphedema as my neck swelled up. This is the next challenge I need to get under control. I kept thinking my swelling in my neck was still from radiation, I had no idea it was lymphedema.
The feedback, advise and timelines from those on this site and off have been a great help to me. I thank all of you, I hope my postings and information gives comfort and information to others as they go through this process.
Leonard, it sounds like you are doing incredibly well only being 13 weeks post rads. CONGRATS!!!!!
Im sure it will help others who are just finishing to know in a few weeks everything will be much better. It takes the body a full 2 years for a complete recovery so expect to see changes in your sense of taste thru that point. You will need to still focus on your intake to help with your recovery. Until at the very least you hit the first year mark, every day shoot for a minimum of 2500 calories daily and 48-64 oz of water. Dont be surprised to see some setbacks and ups and downs with your recovery phase. Many of us faced significant fatigue which made recovery seem to go so slowly.
Talk with your doc about using Allegra and Mucinex to help with the thick gunk. Those meds can make dry mouth worse so you may need to take something different.
Best wishes with your continued recovery!!!
Thank You Christine, you have been very helpful with the process, I very much appreciate the support you and several others on this site have provided.
Once the allergy season slows down I should be able to be done with the Alegra. My wife has been on me about the intake, I am really tired of the scanda shakes at this point. I think more of my fatigue comes from waking up every two hours to deal with dry mouth and use the bathroom from all the water I drink. I get up early and can not stay up too late although I try .
I just spent two weeks in Poland, Germany and Switzerland, next week will be California and Vancouver. Early July will be back to Italy and Germany and August will be the UK with several domestic trips. Just happy to be getting back to work.
You're welcome, Leonard! I try to help as much as I can. Im glad I was able to help you with useful info and support.
Some patients have found success with the nighttime dry mouth with a type of lozenge that sticks to the inside of your mouth and slowly releases its medicine overnight making dry mouth less of an issue. Ive tried it and didnt care for it but many other have said it works great so maybe its worth looking into? Sorry, I cant remember the name of it but here in the US, its over the counter. Maybe ask a pharmacist, they would probably know the name of it.
Getting back to work is a huge accomplishment. Congrats on reaching the point in your recovery where you can assume some of your life's normalcy. You must do something very interesting for it to involve so much traveling. On the countries you named, Ive been to only California, Vancouver and Italy and enjoyed every one of them. Hope you do as well. Dont be too hard on yourself, you still have a long way to go until you are completely recovered. You will still see many more improvements.
Best wishes and safe travels
The tablet Christine mentions is XyliMelts
. I've only been able to find them at Amazon. They're not a panacea, but help me a bit. I use them on the main treatment side where the salivary glands were most damaged, at time when dry mouth is not letting me sleep well. During the day I get the same results with Trident gum with xylitol.
Sleeping with a humidifier helps too.
I'm Still here.
It has been fourteen months since my last treatment. One year from now that I was just getting past the worst of the impact from the treatments. The gunk in my mouth was just subsiding. How am I now ? I have dry mouth and I hate it, it is all the way in the back of my throat.
Today I had another three month follow up visit, I am cancer free. I am traveling for work again, since the treatments have been done I have been to the UK 3 times, Italy 4 times, Germany and Switzerland 5 times, Poland 2 times, Canada twice, Japan, China, Hong Kong, Philippines. California, Tennessee, South and North Carolina, Florida and Arizona. I know there are varying degrees of Cancer and not all will be as fortunate as I have been. What was my secrete, I had a great support system and I was not going to let this get the best of me. I focused on wanting to get back to normal which I now I understand is the new normal. During my treatments I had acupuncture 3 times a week, I only took Children's Tylenol and a liquid version of Mucinex. I also had the Scopolamine patch which helped with the mucous buildup. We are all different in the severity and treatments we go through, it wont be easy, get the calories in using milkshakes with protein, another trick I used, I wold mix it up and drink warm water to wash the taste of what I began to hate in those milkshakes, it was soothing to my throat. I used honey from new Zealand when my throat got raw. I never needed a feeding tube although it was threatened a couple of times. Again your process will most likely be different than mine, I was told yesterday I came through this better than anyone they had ever seen come through it so early. I hope my post and information as i went through all of it helps someone else, it gets rough but I am proof it gets better.
Thank you to all who have shared their stories and advice in these forums you helped me also I hope I can do the same for others.
Thank you for sharing what worked for you. Glad you are doing well!
Thanks for coming back to give us an update! Its great news to see you are so active at one year post rads and chemo. You must be doing very well to be able to travel so extensively for work. I always love to see patients who have been thru this come back and post updates. It gives those just starting out hope they too can get thru it. I know its not easy but it sounds to me like you were motivated and pushed your self with your intake. Thats what helped get you thru it easier than many others.
Hang in there with the dry mouth. It does improve slightly here and there right up until around the 2 year mark. A few patients mentioned their dry mouth got better even 2.5 years post rads so you still should see some improvement with it.
Best wishes for many, many more happy and healthy anniversaries ahead.
Thank You Christine, good to know the dry mouth can still improve. You get so many conflicting reports, I was told recently at the one year mark you are at your new norm. I came back exactly for the reason you stated, I wanted others to know it can get better. I have also been sharing my story of early discovery and perseverance to a proper diagnoses. One ENT told me I had post nasal drip. It is so surreal to sit here and think just 14 months ago I was suffering and wondering when the gunk in my mouth was ever going to end.
Thank You again.
I can say that dry mouth, at least in my case, can improve after 2 years, even 5 and longer! My parotid on the left side is atrophied as seen on scan, but there is another on the right, although I was radiated bilaterally, the right was a lesser amount. Plus there are pairs of the two other major salivary glands on each side of the throat, plus hundreds of minor salivary glands in the mouth and throat. Lately, they're trying to avoid or limit the dose so they can recover, usually 26-30Gy, and volume to around 49%, if I recall correctly, to the parotid gland, which has more thin saliva, and reason for the thick mucus after treatment until it recovers or the others start producing more to compensate for the loss. The two others have a mixture of thick and thin, although more is thin.
IMRT was developed to help with the salivary gland dysfunction, so IMRT can can be dose sparing, and dose paint areas to be radiated to limit toxicities.
Btw, my first induction chemo, which I had alone, had just as worse side effects as radiation did, so chemo effects dry mouth too, but in my case, it may be difficult to give more of an exact timeline being I had more that one treatment, and medications, temperature/weather, foods, sleep habit, and medical medical conditions can effect dry mouth, especually st night from sleeping with the mouth open, and when the salivary glands basically shut down from what I understand. As Christine often says, correct what's within your control.
Can you explain a little more what you describe in the 3rd response of this thread. Is this something that you would recommend my mom ask for from the get go of radiation.? What is the difference between having them spray your mouth out daily and you rinsing after radiation? In another reply I read they sprayed out your mouth with saline. Did they spray your mouth after radiation? Did they use just a regular spray bottle? Just more of what you you wrote would be appreciated. Which of these items would you suggest someone request in their first meeting with their Radiologist? It would be the radiologist not the oncologist? Which one prescribes the meds and the monstor mouthwash? I expect my mom will see a radiologist next. Thank you for further clarification., Lynn
I don't see mentioning working with a registered dietician, a Speech and Swallow Therapist, SLP, which I recommend. When I did radiation I had my mouth sprayed out daily in radiology, which helped mucocitus,and thrush, which are sometimes difficult to differentiate and occur concurrently, along with other conditions, including bacterial or viral infections, which need to be treated appropriately, and had extra hydration in radiology, in addition to being prescribed NeutraSal for Mucocitus & Dry Mouth, Nyststin for thrush, Magic mouthwash for pain in order to swallow, opioids.
I'm not sure of the name of the machine to debride the mouth out with, but it was a small air compressor with a long nozzle sprayer that they attached a small brown glass vial or put in, saline solution, in its absence several times, which was done in the radiation center exam room by the nurse. I assume not all centers do this as my first IMRT didn't, but they weren't geared toward head and neck cancer patients. My second round, at a different facility highly experienced with head and neck cancer, did it every day, either before or after the radiation session. So did the Proton Cenrer at another location.
I also was prescribed nystatin then, and used the NeutraSal rinse instead of the salt water baking soda. NeutrSal is not available anymore, but heard of SalivaMax, that has pretty much the same igediants.
I previously used magic mouth wash, which there are about 25 different concoctions and various names, but all have about 3-5 ingredients to numb the mouth. Besides that, I've used oxycodone, fetynal....and plenty of other medications to deal with whatever arised.
I hope this helps
Thank you so much Paul I hope it helps her tooo, lynn
wow, i looked up the term medical debriefment and that one is not going on my list!.That one is definitely a doctor's
evaluation of the specific circumstances...not for a list maker. Outside of reading about how people dealt with symptoms at home,
which was helpful as I'm oblivious at times. I don't have natural empathy, I have to work hard at it.
there isn't much for a list maker here. I'm disappointed, I thought the daily mouth spray in Radiology
was an Ace in the hole, like Lorenzo Oil or something. I'm sorry the conditions did exist for you that daily oral debriefments
were indicated. And thank you for sharing your experiences. I'm prepared for multiple ways to deal with symptoms at home.
btw I have a chronic condition that requires I see a neurologist every 6 month and pay way too much for prescription drugs.
I find if I respect a doc's time, they actually like it when I say this is what I'm reading on the internet how are you addressing these issue?
They don't like it when I say I want you to do THIS. And I don't, I just want to know their plan for the issues i read on the internet.
I hate thinking of things after the fact.
Bailey, those of us who have been thru things like the medical debriefment tend to take these things in stride as just another thing we must go thru. Ive had it done more times than I can count and Im sure many others here have as well. Its not to say we dont mind it (Im sure we all hate it) its just we have learned to adapt and do what we must do to eliminate the cancer and recover as much as is possible. Ive had so many biopsies that Im ok to have it done without numbing my mouth or being put to sleep. Its amazing on what you can get used to when you dont have a choice.
If it's related to my post, it's daily debride, not debriefment, meaning to clean the mouth out?
There are many other OTC, natural products, and prescription drugs to help with mucocitis, dry mouth, mucus, and infections that may occur, and tailored to the patient.
I am approaching three year mark of when I began my treatments, it has been a year and 7 months since my last post. Not much has changed for me, dry mouth is still uncomfortable, wish they would have better solutions and sometimes when you take medication for a cold it gets much worse. I wish someone would invent a fix for dry mouth, I miss the flavor of Colgate toothpaste but I am eating Jalapeños and other hot spicy items again. They dry mouth also does a number on your teeth, brush, floss and well make sure you keep up with your personal dental hygiene. Travel in the plane also takes its toll as I write this while in Switzerland. The one topic I am proud of is sharing my information with others to help them through this as others have helped me. Someone come to me year ago they wanted to start him off with a feeding tube and other drastic measures, I shared my experience and introduce my team, he got through the treatments lost some weight and is a survivor. I will update again after the three year all clear mark.
Happy Holidays to all !!!
Glad to hear that all has been well in these past years for you, with the exception of dry mouth. Cancer, I'm learning, is quite unfair to us head and neck cancer patients. I am currently in radiation and I'm still adjusting to the fact that my new normal in life will include a LOT more work on my part in the dental arena and that dry mouth will also be a part of my life forever. And a speech impediment, even if it's slight. Here's to hoping for more clear scans from here to eternity for you!