I finished radiation last Friday (27th). If you haven't read my treatment thread, radiation went very smoothly for me, very few side effects. Since then the mucositis has worsened to sores on both sides of the tongue. Thank goodness the VA sent me an extra 300ml bottle of oral lidocaine. Swishing that around in my mouth is what gets me through the day, particularly before eating.
I'm still pretty much on an Ensure Plus diet. Every once in awhile and if my mouth is sufficiently numbed I'll do one of the big cans of chicken noodle soup, or I can do scrambled eggs pretty regularly. I got brave stupid the other night and opened a can of gumbo, which about set me on fire, so down the drain it went. But, the Ensure has way more calories and nutrients, so I don't bother with the soup until I can't stand drinking another Ensure.
Other than that, rope mucous is pretty heavy. I hack and hack to get it out, thank goodness my throat isn't raw and I can swallow normally.
My energy level is good and I sleep well at night. So, I will definitely go to our dance clubs New Years Eve party tomorrow night.
Tony
On your doctor visits you can ask the nurse to use the suction machine to get the thick ropey mucous out of your throat. You will feel so much better with that stuff out of there! Your doc can write you a prescription to get one to use at home from a medical supply company. The thick ropey mucous phase lasts anywhere from 3-5 weeks post rads. One day it will just stop and you will feel great but then overnight the gunk will be replaced with dry mouth.
Chicken and stars soup goes down a little easier than the chicken noodle. Less chewing. Its still very important to get the daily minimums of 2500 calories and 48 oz of water. It will help you to get thru the recovery phase as easily as you did the rads.
You are one tough guy!!! Being without a caregiver I cant believe how well you did. Keep up the good work
Finiashed rad Dec 27th and off to a News Years Eve Party 3 days later.....there's alwys one wise guy in the group!!!!
Seriously though, Congrats.
My first post induction chemo New Year's Eve was celebrated in ICU, I vaguely remember. Have fun!
Hey Guys:
Dancing, bridge and flying model airplanes are what kept me sane during treatment. If I had just sat around the house waiting for treatment to be over I would have gone stark, raving looney.
Well, that is only partially correct. This forum family is really what kept me sane during this ordeal. I owe a lot of people a big thanks for that.
So, now it's time to pay it back three times over by helping the new guys that come behind me.
Thank you all ... Happy New Years
Tony
Tony, I hope you have a great time tonight, you deserve it! Your attitude is fantastic and I know you're going to be of enormous help to many other members of our family over the years.
Success and happiness in the new year.
Hey, dancing was great, though I tired by about 11pm. The real bummer was the buffet line was full of everything I like to eat and I couldn't have any of it.
We had bought some raffle tickets and the prizes weren't awarded until 11:30, so we had to stick around until then. Should've left, didn't win anything.
Oh well, that bed sure did feel good to crawl into.
I'm still fighting this mucositis, am now in week two of it. It seems I'm having to use the lidocaine swish and spits about every hour now, more frequently than before. I'm not swallowing it as my throat is not sore.
Happy New Years
Tony
Tony,
I know you are well read here but what about a suction machine for the mucous? For many who get the "ropey" version it seems to work really well.
Hi Don:
I suppose if I had difficulty getting it out of my throat via warm water gargles and a bunch of hack and spit then I would go for the suction machine.
But, right now it's not really difficult to handle the old fashioned way. But, if it gets harder then I'll probably go for one.
Thanks for the suggestion.
Tony
Tony-it is so great to read your posts! Hope you can rally for a good barbeque sandwich or ribs in the near future. I'll shamelessly recommend my sister's joint in Little Rock (unless Bryant is closer :-)
Keep healing!
Best,
Mary
End of week 1 - I finished radiation 7 days ago. Here is an update of what's going on. One reason for doing these weekly posts is to help others gauge where they are in post treatment.
Mucositis - have had it for two weeks, it isn't really getting any better. I have to use lidocaine about every hour and before all meals. Tonight I had to use it again during the meal, as the chicken and rice soup just seemed to wash it away. Someone mentioned something that made me think my dental hygiene needs to be raised up a notch, so I doubled my efforts about teeth brushing after every meal & snack and just in case the toothbrush is a source of reinfection, I now soak it in a bleach water solution between uses. I also use the chlorhexidine gluconate more often.
Neck sunburn - it's getting better every day, though I still use the Aquaphor frequently. I will continue to use it until skin color returns to normal. I credit Aquaphor with helping me avoid any serious burns or skin sores during radiation.
Rope mucous - I have it pretty good every morning when I get up. Gargling with warm water (no salt, it burns the tongue) loosens it up enough that I can hack and spit a dozen or so times and clear my throat enough to make it through the day. Fortunately I have no throat burn, so hacking and spitting is not painful and I have no problem swallowing.
Diet - I am still pretty much on Ensure only. It's creamy and smooth and it goes down easily. That soup tonight wasn't really worth the effort, and it probably didn't have the nutrition that Ensure does anyway. But, sometimes you just want something different.
Weight - lost a couple of pounds during the week, so I bought a digital scale to monitor my daily weight. Energy level is still good enough to continue dancing regularly, though I do need one good nap every afternoon. Am sleeping well at night.
All sounds good, Tony. Be careful with too much chlorahexdine gluconate, also called Peridex. It can cause mouth issues, black tongue and teeth staining, ulcers, others, but maybe not.
http://www.rxlist.com/peridex-side-effects-drug-center.htm
Tony, you must be so happy to be done, and it sounds like you are doing fantastic! The worst is almost behind you!
Hey Tony, glad you got through the rads. you have reached the peak and its all downhill from here. You should start seeing improvement almost everyday till new normal. I am sure its different for eveybody, but adaptable and doable. good luck.
Tony,
You are doing well to try a variety of tactics to overcome the side effects. Here are a few new ideas.
Ensure is nearly 100% sugar and since that is your primary oral intake, your oral cavity is a breeding ground for bacteria and such. So you use Peridex to overcome that issue. Then that causes staining and other issues. Ounce of ounce whey protein powder offers the same caloric value but far better nutrition to aid your body in cellular growth, giving your body fuel to fight and rebuild damage done by things like mucositis as well as all the other muscles lost due to treatments.
Try a few bottles of Essentia or other high pH water. The high alkalinity offsets the acidic condition in your mouth, the kind of condition bacteria love to grow. It is also highly buffered so it actually feels much smoother and easier to drink.
Try using a diluted solution of hydrogen peroxide and water to swish now and then rather than the Peridex. You can also put it on Q-tip and directly apply to sores. i used raw salt too. Hurt like hell temporarily but was quite effective. If anything you would want to use less Peridex rather than more.
Liquid lidocaine is to be used no more than three times a day. My oncology staff were quite vociferous about overdoing this. It has limited effectiveness, maybe 10 minutes or less. I used it just before eating to help get food down. Magic mouthwash often includes lidocaine as well.
Not sure if you subscribed to my blog but I recorded things I tried and reported their effectiveness every day for the duration. Feel free to join if you have not already. link in the sig.
Don
Hi Don:
Thanks for the suggestions; I will look further into them.
Yes I subscribed to your blog, but have been remisce in staying up with reading it, will redouble that effort also.
As for the lidocaine use, since all my symptoms are in the mouth I use it only as a swish type treatment, then spit it out. And to make it a little easier to swish it's diluted about 2 parts lidocaine to 1 part water. I don't think I've ever swallowed it, though it says it can be.
take care
Tony
Two Weeks Post Treatment - Here's an update so other's can track my progress and newbies can get an idea of what to expect in post treatment.
It's not a lot of change since a week ago, but some of it is noticeable. The suntan on side of neck is improving quickly. The dark splotches continue to decrease in size, half or more are gone now, that skin has already returned to normal skin color. I have reasonably dark skin anyway, it looks like I keep a tan even through the winter months. So that means my "suntan" was really dark.
I still use Aquaphor, but now it's usually just once a day and I use less of it than I did during treatment. Yesterday is the first day I wore a shirt with a collar since radiation began.
Rope mucous is getting better. Throat doesn't feel completely glued every morning. I don't usually need to gargle warm water to soften it so I can clear it. And the number of hacks and spits to clear it have also decreased. It has gotten noticeably better.
The mucositis seems to be improving. I still have it, but it doesn't hurt as much as a week ago, and I don't have to use the lidocaine swish as often as before. For awhile there it hurt so bad I suspended use of the floride trays, but was able to start up again this week.
None of my taste has returned yet, BUT I'm beginning to have a hot meal pretty much once a day now. I still try to do 6 cans of Ensure per day.
My dry mouth is on again off again. Sometimes mouth feels normal, like I have normal saliva production. Other times it feels as dry as a desert. Chewing Trident gum helps, but that stimulates saliva which washes away the Lidocaine.
I did go dancing last night and didn't get tired at all, unlike the fatigue that I had at New Years Eve party about two weeks ago.
I did lose a few pounds after treatment ended, but have lost no weight over last 4 days. I love the skinny belly I have now and strongly desire to keep it. I haven't been this skinny in 25 years. I'll probably catch some grief from forum members about this.
Life is good ... and getting better every day.
Tony
Glad your doing well tony
Sounds like your recovery and treatment is similar to mine I started getting my taste back in third week and actually have good saliva now at ten or so months post treatment. Hope you get your taste back soon that was the worst part of treatment I found.....that and the darn mask lol
Ken
Tony, I'm with you on the skinny. I am 129 pounds now, which I have never been as an adult. All told I lost 45 pounds. I have been holding steady at this weight with a fluctuation between 133 and 129 for the past 6 months, so this is probably where I'll stay. I consider this my silver lining.... Hello size 6!
Just curious. Did you have both sides radiated, bilaterally or one side, ipsilaterally? Either way, sounds like you are doing well in recovery.
Paul - I was radiated both sides, more on tumor side of course, as right side basically got no sunburn. And all my mucositis is left side, adjacent to where the largest tooth fillings are, even though I used double dental rolls between teeth and tongue everyday.
That's fantastic! Maybe the dental rolls helped? I did radiation alone, bilaterally, my first go, and after the 2nd week, relied on the tube after mucocitis, thrush kicked in, and used the tube for about 7 months, although I think, well was, already compromised from chemo, a year prior. My burns weren't that bad, and used Aquaphor. Currently using Cetaphil. .
How long have you guys seen mucositis last after treatment? I got it one week before treatment ended and still have it going on 3 weeks post treatment.
It's only in one area, left side of tongue toward the back of mouth, beside my molars.
thanks
Three Weeks Post Treatment - Things continue to improve slowly.
Neck sunburn - on left side of neck is for all intents gone. Sometimes I forget to use Aquaphor, but I seldom miss more than one day. The skin feels normal to the touch.
Hair loss on back of neck - still there. It doesn't look like it's started to come back yet.
Weight - after losing several more pounds in first two weeks post treatment the weight loss stopped this week and I actually came back up a pound or two. That's probably because I'm eating two meals of regular food a day now and Ensure pretty much only at lunch. It helps that I bought a good digital scale, weigh daily and keep a written log.
Taste - another cancer survivor told me taste will return like this; you can taste the first bite, but after that it goes away again. Sure enough she was right, but ohhh, that first bite of dessert tasted SO good.
Mucositis - I think the mucositis is going away, but it's been replaced with another case of that viral cheek infection that I had at beginning of treatment, the one that makes your mouth taste like your sucking on a copper penny. Before, it wasn't bacterial as nothing grew on the culture. It is a little painful, but not as bad as the mucositis was. I still use lidocaine as a swish (no swallow), but I don't have to use it as often now.
Rope mucous - still got that too. I thought it was getting better, but it came back. It feels like my sinuses drain into throat and then dry into a hard lump. Gargling with warm water helps soften it some so I can hack and spit, but it takes LOT of hacking to get it all out. I've gone back to using Mucinex daily to help with that.
Things are getting better slowly, I suppose the big change this week was going back to eating regular food, though most of it I still can't taste. I guess I just got tired of so much Ensure.
Tony,
Try swapping the Ensure for whey protein powder. It has as much calories and much better for your body to repair itself. Proteins are the building blocks of your body. Look at the Ensure, most of it is carbs but some are somewhat balanced.
Just like any bodybuilder gains mass and muscle with protein, carbs provide fuel but protein are the building materials.
All through treatment your body is under assault and extra protein is what it needs the most.
Glad things are progressing well for you.
Don
Keep up the good work!
For at least the next full year you should take in the daily minimums to help your body with recovery. The sense of taste is a funny thing, it will come and go. One day you will discover a new food that you can actually taste and the next day that same food is the worst thing you ever tasted. In time you will gradually regain your ability to taste more than a couple bites.
Hows your energy level?
Hi Christine:
My energy level is as good, it was also good all throughout treatment. I still take a nap every day, but only one.
I'll try switching to the whey protein powder some.
thanks
Tony
Hang in there! Tim is saying that his taste buds are back at about 50%. He is trying EVERYTHING and the wonderful look of surprise on his face when he actually can taste it is priceless!! Looks like you too have had similar treatment experiences so I thought this would be of encouragement. Around December 19th he decided to load up his plate with bites of many different food, and much to his surprise he could taste many! Each week it seems just a little better! Still has an ensure shake once a day to keep healthy! He still has the dry mouth problem but it too is getting better!
Four Weeks Post Treatment- Tomorrow is 4 weeks since last treatment. It will be a busy day so I'm writing this the night before. Everything continues to improve.
Skin burns on neck - are gone, back to normal appearance, been wearing shirts with collars now for 2 weeks.
Mucositis - hasn't been bad this week, much improved over last week; haven't needed any lidocaine in maybe 3-4 days.
Still have that copper penny taste in the mouth, particularly after eating, but a tooth brushing takes care of it.
Rope Mucous - still have some of that, but it's not as bad as it was. I think that Mucinex tablet every morning is helping with it nicely.
Taste - I think some taste is coming back, enough to make me want to eat normal food all meals now. Haven't had an Ensure in maybe 3 days. And with eating normal food the weight is coming back, have gained maybe 3 pounds since last Friday.
Things are improving nicely, have my 30 day checkup with the RO on Monday.
I hope all of you have a great weekend, temp is going down to 11 tonight, so it will be cold tomorrow, but I won't miss opportunities to go to dance club.
Tony
Five Weeks Post Treatment - Everything just continues to improve.
Taste is beginning to come back nicely. I estimate I have 25% of my taste back. I can taste everything, it just doesn't last throughout the meal. Spicy foods do irritate the mouth/throat, not enough mind you to stop eating. A sip of milk does a good job of calming the spicy.
Mucositis is gone I think. The tongue is where it was worst and that's gone now.
Rope mucous - is still here, but it's not too bad. I notice it mostly in the morning after waking up. Still use the warm salty baking soda gargle to soften it up so I can get it out.
Weight is returning nicely since I eat regular food now. I've switched back to 2% milk from whole milk to start watching the calories and fat a little more. I'd like to maintain an average weight of 200, which is a very good weight for me.
Dry mouth is very infrequent, almost a non-event.
Hair loss on back of neck - someone at bridge said they thought it's beginning to come back.
Other than that metallic taste in mouth about 1/3 of the time I have no adverse symptoms.
Tony
Excellent report, Tony! Thanks for keeping the wonderful reports coming. It is nice to read about folks who do escape many of the side effects and it gives hope they may get off easier as well.
Don
Nice to hear you got thru it with little complication! I'm hoping to follow in your tracks in not too long.
Six Weeks Post Treatment - Another week of improvement. It will again be a busy day tomorrow, so this is written the night before.
Taste - pretty much returned. I can taste everything and now all throughout the meal. This is wonderful as eating is again enjoyable. I haven't tried that cheeseburger yet, but will likely do so next week.
Mucositis - is gone, at least for now. Will it ever return, who knows, but for now it's not a concern.
Rope mucous - I don't know if that's what I have. The symptom is my uvula and area going up into nasal cavity feels like it's coated in glue and allowed to dry every morning when I get up. A salt water baking soda gargle and a shot of nasal saline up each nostril and it starts to clear. Horrible, nasty looking snot starts to release and exit via hack and spit. In 30 minutes or so it's pretty much all out for the day. If it persists a Mucinex tablet gets used. This problem has never blocked my sinuses making breathing through my nose a problem. Breathing has alays been normal.
Weight - is stable at 200; I'm having to watch my intake to keep weight off. So I concentrate on what I do eat being healthy, veggies, protein, avoid too many sweets and empty carbs.
Dry mouth - half dozen times a day, a sip of water takes care of it. I keep a gatorade bottle of water on my desk and in my car, always available.
Saliva production - is back to normal. I know that kinda contradicts my dry mouth remark, but I have no problem with dry mouth while eating.
Hair loss - no improvement over last week. What I did notice is the neck skin adjacent to where tonsil was (and radiation was at max) is baby smooth and all whiskers gone. I never have to shave that area anymore.
Guys, I'm way luckier than I deserve for recovery to be going this well. I only hope it could be this way for everyone.
Going dancing on Saturday, see you all next week.
Tony
Fantastic update. You are the new "best" case for getting through this whole process. Now, you just need to bottle it and you will be a billionaire. Then you can be like Bill Gates and spend it all on cancer research!
And I would gladly do just that - after buying a new aerobatics airplane of course. On second thought it wouldn't even have to be aerobatic, a used Cessna might be enough, just something to "slip the surly bonds of earth and dance the skies on laughter silvered wings" in.
Seven Weeks Post Treatment - Okay, one more week complete.
Head neck CT - had first post treatment follow up with ENT and a head neck CT before that. ENT looked down the throat, at the surgery site (left tonsil), but what impressed me most was he did a full oral cancer screening. And believe me I know now how one should look. He did the gauze around the tongue thing, and felt everything inside my mouth as well as lymph nodes both sides of neck. He made me gag at least 10 different times. He commented to his intern that throat constrictor muscles 9 and 10 work real well. Of course I asked him what those were, and he said, the ones that are making you gag.
Edit - I was rereading some of my medical file info (yes I have a printed copy of everything, and it's organized by date, and indexed for easy searching). The post surgery report said tumor had invaded the constrictor muscle fossa, that's why all the tumor wasn't removed in surgery. I don't remember reading that before, but since the ENT apparently did read it before my office visit, I now know why he made it a point to check the constrictors.
Mouth tenderness - we talked about it quite a bit, he looked in there real well and said he can't see any evidence of infection or inflammation, just a bunch of healthy looking pink mouth tissue, so he expects it's just residual damage from the recent radiation that hasn't healed completely yet. the tenderness isn't bad, it's only noticeable when I eat and absent between meals.
Sharp foods like potato chips are still uncomfortable to eat as are highly spiced foods. Other than that the taste continues to improve nicely. I still have instances of dry mouth, but a sip of water resolves that.
In past weeks chocolate in any form tasted horrible, that's gone now, it's back to tasting great.
Weight is staying constant at 197, right where I want it to be.
But maybe the best item to report is I met someone new, and had a very nice Valentine's dinner with her last night. Best of all, she is HPV-16 positive too. We're going hiking this afternoon.
Life is good.
Eight Weeks Post Treatment - Another ho-hum week.
The big changes week to week have virtually stopped. Weight remains stabile in desired range. Hair on back of neck continues to grow, but very slowly.
Mouth soreness is still here - most noticeable when eating anything sharp (potato chips) or spicy. Mouth is also very sensitive to heat. I have to let things cool some before eating them. The mouth only hurts when eating. Every time I see a doctor I ask, and they all say it's normal.
Most things I can taste now, though a few things still don't taste as good as I remember. But, I'm seeing signs of improvment, so that's a positive.
Mouth dryness hasn't changed. I need a glass or bottle of water nearby most of the time because I never know when my mouth will just go dry. When it happens, it's really noticeable. Chewing a piece of Trident gum helps keep the mouth wet.
Since my improvements are changing so slowly I think I will go to a two week update schedule in the future.
Ten Weeks Post Treatment - Healing continues, but that tender mouth and tender tonsil area continues. Mouth is still sensitive to hot or spicy foods. I had a margarita with mexican food last night and both the drink and food stung throughout the meal. Once eating is over the tenderness goes away. I have a dentist appointment tomorrow for a full set of dental x-rays to see what/if I have any treatment induced teeth damage. I need to be more disciplined in my use of fluoride trays.
That and a pretty good case of dry mouth are my only remaining symptom, the new girlfriend says the hair on back of my neck is coming back in, will likely be back to normal in 30 days or so.
The weight is remaining constant at 193 plus or minus 1 pound. I almost never eat lunch anymore as a way to maintain weight and brekfast and supper are small but nutritious. Energy level is good, but I don't yet have the endurance I had prior to surgery and treatment. That will come back in time.
It seems like improvement has slowed, but maybe that's because the bulk of healing has already occured.
take care
Tony
Edit: Dentist decided that the last thing my mouth needed was more radiation, so she has put x-rays off for awhile. So we just did a teeth cleaning and polish.
Twelve weeks post treatment - About the same, mouth and throat still sore, still sensitive to heat and spicy. Still have dry mouth, particularly so when sleeping. Started putting in a piece of Trident in my jaw while sleeping, that kept my mouth moist, but didn't help the dry throat.
Hair continues to return on back of neck.
All in all I have nothing to complain about.
Tony
Fourteen weeks - Little change, mouth and throat still sensitive to hot and spicy. Doctor thinks the sensitive spot at surgery site is scar tissue. That it doesn't stretch when eating is what he thinks is causing my eating related discomfort.
I started using a humidifier at night when sleeping, that seems to help with the really dry throat during the night.
I also started using a NeilMed Sinus Rinse bottle, that has really helped with the dry, sticky sinus drainage. And I can breath a lot better.
Bald spot at base of neck is almost completely filled in now.
Weight remains constant.
Since little change is occuring, I will move to a once monthly update.
Tony
Four months - Improvement continues, albeit at a slow pace.
Weight has remained steady at about 190 (42 lb weight loss). It's nice to have a flat belly.
Hair has completely returned on back of neck.
Roughly half my taste has returned. I can taste everything at some level, but many things taste only about half as good as they did pre-treatment. Mouth is still a little sensitive to hot foods or liquids and to spicy food.
Sinus drainage that dries in my throat is the most noticeable remaining side effect. The NeilMed sinus irrigator gets used anytime I feel that crud in my throat; it works great though it took awhile to get used to it. At first it was gross, choking, coughing, spitting, in general it just made a mess. Now I know how much water to squirt each time such that I get the cleansing without all the other.
Nightly use of a humidifier by the bed helps a lot towards preventing the formation of said throat crud.
What I've written here today sounds so much like what I've written the last two or three times. I'm sure it sounds like no improvement is occuring. That's not true, the improvement has just slowed down, which I expect is how it is for many.
Thanks for sharing this Tony, mapping out your last 4 months is very helpful to others. Is yours a typical progression over this period?
Five months - Thanks Ozmojo for your interest. I have no idea if my recovery is what you would call typical. We are all so different in every aspect of this disease; diagnosis, treatment, I'm sure recovery is the same.
At 195 I'm about 5 pounds heavier than a month ago, and all that is due to more food and drink over the last month. I will get that back under control over the next month; as in small, nutritious meals and lots of exercise. I know it wasn't good to lose 42 pounds during treatment and early recovery, but now that it's gone the last thing I want is for it to return.
The throat crud problem of before persists though it has improved. Initially, I was using the sinus irrigator 3-5 times a day for relief; now it's down to once in the morning after a nights sleep and maybe one more use during the day. The volume of throat crud also seems to have decreased though what does stick around is really sticky and hard to hack.
I still use the humidifier most nights when I sleep; it seems to help.
Food taste has pretty much returned. A month ago I reported 50% return; I think it's higher than that now, maybe 80%. I taste everything (sweets, sour, savory) it's just that nothing tastes as good as I remember before treatment. But, it's way better than it was 5 months ago when I could taste basically nothing. My mouth is still sensitive to hot or spicy foods; I have to watch the spices as they can create some real discomfort if ignored.
Lately I've noticed my mouth develops a bad taste once or twice a day. Brushing my teeth helps and will keep it at bay for several hours, but it returns later. Chewing Trident gum (xylitol) helps too.
Everything continues to get better, as other's say, it's just real slow progress.
Tony
Hi Tony. I've just found this. Very helpful to have some data on how the mouth and throat recover.
Thanks Tony. I expected it to take a while after treatment but the recovery is taking longer than I expected. Its good to know there is light at the end of the tunnel.
Glad things are going well!
Six Months - nothing new to report. Food taste comes and goes. I'm talking about quality food taste. Some days food tastes good, other days it tastes rather bland. But, I can taste everything.
One example, I always loved animal crackers (kind of a cookie). Yesterday I bought first bag in several months. They tasted horrible, almost bitter. They never tasted that way before. I'll throw the rest of them away as I shouldn't be eating them anyway.
Some foods I just shouldn't eat. Chicken breast is often kinda dry. Chewing it and trying to swallow it is like swallowing sawdust. It will actually stick in my throat. Without a glass of water available that could result in choking. Now, the dark meat portions, legs and thighs are moist enough they chew and swallow normally.
I eat a bowl of cereal most mornings for brekfast; cheerios and raisin bran with extra raisins, peanuts and a banana. Last two weeks I have a horrible taste in mouth after eating; that wasn't there before. All I'm trying to say is recovery comes and goes, some days and weeks are better than others. I thought all this would be a linear process; everything would just get a little better every day until all symptoms gone. That just isn't the way it happens, at least not for me.
Still have sinus drying in the back of my throat, particularly after sleeping at night. Feels like someone coated the area with Elmer's glue and it dried. Using the sinus irrigator really helps break it up and allows me to hack and spit it out. Some mornings you can see what comes up, yellow-green, you all know what snot looks like. Other days, it's clear.
Weight remains pretty constant; I'm trying not to gain the weight back; love the new slender look.
take care
Tony
You're on track and sound just like me. I remember finding a bag of shelled peanuts in my MIL's backyard about this time of recovery and I love peanuts so I popped one in my mouth and thought I was going to choke until I could run to the front yard and take a swallow of water. DO NOT TRY PEANUTS yet.
Ive been wondering how you were making out. Glad to hear you are doing so well.
A pressure cooker is a great tool to cook meats and veggies in. They not only cook very quickly but the juices are sealed in making it much easier for OC survivors to eat. Your animal crackers might taste better next week or next month, never know how that will go. until you hit your 2 year post rads mark, dont rule out any foods you dont like anymore. Your sense of taste will still improve quite alot for the next year and a half.
Watch out for rice too. That tends to stick for almost all OC patients. Ive tried it several times (guess I never learn) and almost choked to death on it.
Best wishes with your continued recovery.
Actually I can eat peanuts, I have them every morning on my cereal. I suppose with the milk and banana and raisins and all the other stuff in the bowl that the peanuts don't have a negative effect on swallowing.
I can eat potato chips (I love potato chips and really missed them). I've bought a bag or two of peppered potato chips. First time it was a little tough on the mouth, I'm still sensitive to hot spicy. I kinda have to fight my way through the sensitivity because the stronger taste registers nicely and makes the pain worth it.
I suppose the savory taste is slowest to return. I really like this Ranchero Special dish at the local mexican restaurant that is chicken, shrimp, rice, veggies and cheese sauce on top. It's the cheese sauce that tasted the best, but is noticeably absent or reduced in quality even now seven months post treatment. That and a good cheeseburger still doesn't taste really good yet. Now, steak is beginning to again register as good, so I can't complain.
It's all coming back, it's just turtle slow in doing so.
I'm a couple weeks behind you and my progress is very close. Still missing saliva. Mornings are the worst. Steak and burgers are now ok, but not loving them like I used too. Dark Meat chicken is my go to.
Seven Months - Recovery continues though not at anything resembling a constant rate. Some weeks are better than others.
Weight has stabilized at about 194 (38 lbs lighter than pre-cancer). To maintain that weight I eat two small meals and run about two miles a day. I'm slow but getting a little better.
Food taste is about the same as at 6 months. I can taste everything, but nothing tastes as good as it did prior to treatment. A good cheeseburger is what I desired most upon completion of treatment; I'm still waiting for that good tasting cheeseburger. French fries have saved the day, I can taste them pretty good. Sadly, ice cream has almost no taste for me, even good ice cream. But the cold and the texture are still enjoyable. Most nuts of any kind don't have much flavor. I still add peanuts to my bowl of cereal every day for the crunch, but they don't add much if any to the taste. I tried mashed potatoes for the first time since treatment the other night and they were a big disappointment. Sweet potatoes on the other hand taste fairly decent. Potato chips of all flavors taste pretty good, but tortilla chips have little flavor.
The gunky dried sinus and mucous is beginning to get better. Previously, I used the sinus irrigator 3 to 5 times a day to evacuate the crud out of my sinuses and throat. I'm down to maybe once a day now. If I drink a LOT of water every day I can pretty much keep the sinuses and throat clear without the irrigator.
All in all, things are doing pretty well. The ENT did a good oral screening at last checkup a couple of weeks ago. He was happy with all he saw.
I'm planning on doing the Houston OCF walk in October, hope to see some of you there.
Keeping my fingers crossed,
Tony
Hi Tony , thanks for the up date I always take particular interest in your post and am eternally grateful for the tip re chewing gum. Our diagnosis are very similar and treatment times so I always look how your doing. I'm 8 months finishing treatment , my taste doesn't seem quite as good as yours yet, but experiencing similar things . Sweet things not good anymore still have massive cravings and keep testing them but feel disappointed afterwards and wonder why I keep insisting on trying! Savoury , getting there veg and salad taste the best almost as good as they use to , and milk based things , rice pud egg custard okay now. Fresh salmon taste good .Struggle with the taste of meat the texture ropy manageable in a stew or sauce. Actually had a mild chilli con carne tonight , tried 2 months ago and cried but did well tonight, not a grate test but the point being I managed with the mild spices. Still relying on water to get most meals/ snacks down but the pilocarpine is a god send for me and has improved my saliva flow and quality of life a great deal. Reading what you have for breakfast you could be sat at my table sharing mine , Cheerios or fruit and fibre with nuts and a banana! Most other fruit pretty grim tasting. My weight has been stable for 4 months now not gained any of the 2 stone 4 pound lost but a healthy 9'2 for my 5'6.5 height. No mucous at all thankfully .... That's pure misery ! Back to work full time , moved house 5 weeks ago and moving on with life. Bad days still there but no where near as often as before, not dwelling on the what ifs , enjoying life each day . Wishing everyone here love , positive thoughts and hugs for anyone who may need one.
Di x
Hello Di - good to hear from you. Also good to hear your post treatment symptoms are pretty close to mine. I guess misery loves company, though it looks like neither of us are anywhere near miserable.
Keep on fighting, I'll look to see if you have a post treatment thread.
Tony
Morning Tony , ashamed to say I haven't posted a treatment thread I'm really not confident at posting but trying to be, I always feel that I cannot articulate as good as other people so shy away from it and not always sure where to post things, not that computer savvy!
Going to have my hair trimmed again today that's the second cut post treatment grown back really thick with a curl not sure where that's decided to come from! But it's the little normal things once very much taken for granted that make you feel good.
Hope your having a good week , keep up the fight too. Really does help to know that there are other people experiencing similar doesn't it , this site a god send.
Love Di
Di, my extremely straight hair only came out in the radiated area and it all came back curly, too. I was shocked until I got used to it. The strange thing is it sometimes grows straight and sometimes curly.
Don't worry about "articulating". You're doing great! Post away, Di.
Eight months - Not a lot of change in 8th month post radiation.
Taste for food remains the disappointment. Many foods taste pretty bland, but I can eat most anything. Sadly, ice cream is still bland to bad, even good ice cream. I keep trying it, hoping it will come back as I really love ice cream.
Beer tastes pretty good, but can't drink too much of that as I want my weight to stay down.
Dry and gunky sinuses seem to be improving some. Now, at most I use the sinus irrigator once a day.
Something maybe a little new, I seem to feel like I have a bad taste in my mouth a lot of the time, so brush my teeth easily 4 to 5 times per day.
All in all, it's really about the same it was 30 days ago.
take care,
You may be battling candida/yeast from the beer.
Ten Month Report - Well I missed the nine month report, so here is an update.
It's not a lot different from two months ago. Food taste is still the disappointment. I can eat everything, and I can taste everything, it's just a lot of it doesn't taste very good. I suppose there's a silver lining in that black cloud because when food tastes bad, you don't eat much of it, so it's easy to keep the weight off.
The dry, gunky sinuses are still a problem, but not a big problem. It wasn't all that long ago I had to use the sinus irrigator multiple times per day; now it's once a day at most. We're just getting our first really cold spell of the season and it's pretty dry outside, so I'm thinking it's making the sinuses a little drier than normal; maybe I'll go back to using the humidifier at night when sleeping.
The bad taste in the mouth is pretty much all gone.
I did get to attend the OCF walk in Houston in October and meet both Christine and Uptown and one other survivor who I don't see on the forum much. One of the dental hygiene schools brought a lot of students to give oral cancer screenings and I'm proud to report they have learned how to give an excellent screening; wish everybody screened that well.
take care,
Tony
If stuff doesn't taste very good, doesn't that mean that there isstill more time needed for the taste buds to get back to near normal? I can taste most stuff but savoury foods taste a bit too salty which shows there is still a lack of function there somewhere. My biggest problem is that sweet things taste delicious and I'm putting on weight. That's both good and bad, I guess.
Twelve month report - Wow, it's been a year since treatment ended. Where has the time gone.
Food taste and dry sinuses are about the only remaining symptoms of ever having cancer. I can taste all foods some, but some of them (like chicken) still taste blah to bad. Fruits, sweets (even chocolate), vegetables, beer all taste pretty good.
Dry sinuses still persist but have improved over last six months. Now that we are in winter I realize the dry air makes the dry sinuses worse. But, sinus irrigation with a mild solution of saline and baking soda work wonders.
The weight has stayed off, so I love the new, slimmer look. To make that happen I don't eat lunch most days.
Life is back to being good.
Tony
Thats a great update, Tony! You have done remarkably well! Im so glad you posted. It gives others hope that they can return to their old lives too.
Keep up the good work.
PS... Happy New Year and please say hello to your daughter for me. She is such a nice girl!
Fifteen Month Report - Well I wish I had lots of good news to report, but all is about the same as it was at 12 months.
Food taste comes and goes, about the same as before. I feel like I have a bad taste in my mouth a lot of the time and want to brush my teeth, but brushing doesn't help. So, I keep some old forumla Biotene around and wash out with that occasionally. It seems to help.
Weight has been slowly coming back, but that's not a good thing as I wanted to stay at my fighting weight. Two meals a day and I stay constant, but lately there have been too many three meal days. I gotta double down on this again.
Other than that, life is good. I had a CT and ENT visit last Friday, the doc is happy with scan results and what he saw on that through the nose down into the throat torture device they use to inspect things.
Oh well, life goes on.
T
Sounds like you are doing very well, Tony. You must be really doing great to be able to gain weight already. Keep up the good work!
PS... Say hello to your lovely daughter for me
Tony,
It's great to hear all looks good at the 15 mo mark. I know recovery takes a long time. The good news is I saw a lot of improvements in QOL between 15 and 24 mo. You might not notice them when it happens, but when you look back, they happened.
I think that's great news Tony.
Marvellous to have a clean scan and scope.
Tammy
Great news, keep up the good fight in this WAR!!! Semper-Fi Bob
Thanks guys for the comments
Weight gain has never been a problem since treatment ended... I have to be careful I don't gain too much weight back. That's why most days I only eat two meals. I've even had to go from a large cereal bowl to a small one.
Weight gain and fatigue is enough concern for a quick thryoid test if it hasn't been done.