Yay! After 33 Radiations (they added one the last week because of close margins) and 7 chemo treatments, I am DONE with treatment! My neck is blistered and oozing and sore, my tongue is burning and covered in ulcers, I'm coughing up more mucus than I ever thought my body was capable of producing, but I never have to get strapped down on the Tomotherapy Machine again! My body held up wonderfully until the end of week six and that's when the mucus showed up, along with the ulcers, and you could no longer differentiate my neck dissection scar from the rest of my neck because of the redness and blisters.
A couple questions, mainly because I'm impatient and want to be better yesterday. How long will the mouth ulcers / mucositis stick around (the whole side of my tongue and part of the top are white and ulcerated)? I am using nystatin as well for thrush because that flared up again (but it burns like crazy!), but basically the only thing I can put in my mouth right now is salt water, everything else burns, even plain water. Im swallowing as much as I can - I basically take a sip of water and swish with salt water until I can't stand it any more, a few times a day. It's horrible, because before the ulcers showed up, I was eating pretty normally. Also, how long before I notice a reduction in the mucus in my throat. I grossed my tech out yesterday with the huge loogie I coughed up after treatment - seriously they fill up washcloths! I'm taking Robitussin, but that basically just seems to make it easier for me to cough everything up. I guess if the inside of my throat looks anything like the outside of my throat, I'm going to be really good at hocking up loogies by the end of this! HA!
Ah, it just feels so good to be done! There is a light at the end of the tunnel - I was beginning to think mine was burned out! Best of luck to everyone still in treatment, I've still got a long way to go before I'm better, but let the healing begin!!!
Stephanie
Baking soda solutions with or without salt may be even better tolerated.
You could consider getting diflucan for the yeast infection (tablets).
The mucus lasted for a bit longer than a week and then suddenly stopped. I was also amazed that I could produce buckets of it! In my case it started after the rad tx, these things are individual anyway.
M
Hi Stephanie
I would just like to concur with Markus.Add a teaspoon of bicarbonate of soda to the salt.this cuts through the mucous and stops it being quite so stringy and sticky.Its good you can expectorate,because a lot of people have such a terrible job getting the mucous plugs up that they get exhausted and even choke.It is wonderful to hear your youthful,optomistic attitude Stephanie and i am sure this will make your recovery quicker and less stressful.Just a little word of caution.Dont expect miracles.This will take a little time to get over.
Well done so far
love liz
Stephanie
really great!
and I hope you have a swift recovery.
Keep us posted
Hi Stephanie,
Well done! If only you could celebrate properly!! I finished treatment on the 25th July and am still waiting to turn that damned corner. My neck finished up in a simnilar state to what you have described and in the last two days I have started to see some improvement to the point that at least half of the open weeping areas appear to have smooth shiny skin covering them. It certainly doesn't hurt as much now.
The inside of my mouth has been slower to respond to the point that I was in tears of frustration yesterday. I don't have a peg or a naso-gastric tube so I still have to force myself to eat - but everything still tastes crappy and eating is a slow, slow, painful process. I think that I have had some improvement today with my mouth. I was waking up constantly due to coughing up mucous (and sometimes vomiting) but that settled a few days ago.
Everyone at the Cancer Centre I went to(and on this site) told me that things may in fact get worse for the first two weeks following treatment. I was a bit sceptical and hoped for immediate relief but at least for the first week things did get slightly worse. Nine days out I think that they are finally starting to improve!
Being less than half my age you may improve much quicker. I hope so.
Best Wishes for a quick recovery!
Sue
Congrats Stephanie on finishing your treatment. I finished mine August 23rd of last year, so I am sneaking up on my 1 year anniversary. I agree with what Markus said about the mouth rinse and diflucan. I was constantly rinsing my mouth out with a baking soda/salt/water solution throughout the day and during the night. (1 tablespoon baking soda, 1 tablespoon salt, 1 quart/liter of water) I usually went throught 2 quarts a day. It was the only thing that didn't burn my mouth and this keeps your mouth clean. My doctor also switched me over from nystatin to diflucan (pill) for the thrush. I crushed it up and put it down my peg tube. The nurse in the radiation department gave me a lotion to put on my neck for the blisters and redness.
Stephanie:
Congrats on getting thru radiation. Hang in there, now is probably the worst time you will go thru. Its only going to get better from this point. Try the water/baking soda (salt if you can tolorate it) rinse as many times per day as possible. That will help cut the mucous.
Dont forget to keep drinking water no matter how bad it burns or tastes. Try also doing some jaw exercises like opening your mouth wide and holding it for a few seconds several reps. That will help prevent trismus, which trust me you do not want to get.
Be ready for what comes next. The mucous hangs around for about 2 weeks then comes dry mouth. Keep up the rinses and it wont be so bad. Hang in there, you are almost to the point where you will start feeling better.
Three weeks from now, maybe 2 and a half you will walk out of that tunnel and you will know that your recovery phase has begun. You will have more bad days at first but over time they will be replaced by more good days until good days win over completely. But hold on as I was 16 months post Tx before I felt I was probably thru my recovery.
But hey congrats on finishing Tx but you will feel a void in your days for weeks to come.
Congrats Steph!
Still a ways to go before you really start to notice that you're feeling better. Hang in there for the next 2-3 weeks or so and keep your chin up.
Kevin
Wow congrads! I now how great my last radiation felt because I cried during the procedure I was so happy that was Jan 08. But it took me at least 4 weeks for my mouth to heal up. I had sore in my mouth and throat. I did have a peg tube so that was very helpful. Your mouth will go through many changes and like everyone will tell you everyone is different. I still wake up with dry mouth and carry water with me everywhere. The mucus is no fun I still have some issues with mucus in the morning but nothing like it was before. Just hang in there it will get better it just takes time.
It's still a long, slow climb -- Like the microwaved food, we keep on cooking for a while -- Coming in out of the sun is good, but that sunburn is still working -- It's a surprisingly long process, but one day you realize you've felt better for the last couple of days than in a long time and realize you really have crested the darn hill!
Don't expect miracles, slow and steady is how the course goes!
Since my recent surgery I'm back on a PEG with instructions not to swallow (barium swallow test this week, so hopefully that will change), so I don't carry water with me -- I feel kind of naked without it because I've had at least one water bottle with me for the last couple of years.
congrats!!! Like others have said...it will be a couple of weeks before you start to feel better, hang in there..it will happen.
Keep your fluid intake and nutrition up..if you can get pills down, I doubled up on my vitamins and zinc to help get things normal again. But, it will take time...best wishes.
Dear Stephanie,
Try Honey in water, say a lot of it about 4-5 tablespoonful in a glass of water. I bet youll be able to drink it without any problem and also it will give you the needed calories and energy and clear the mouth from all the stuff and refresh you.
And yes! although it will take a while to clear everything, you'll recover preety fast (u'll feel better each passing day and feel the diff too)
Just Cheer Up dear !!!!
Best Wishes
Rohit
I am officially one week out of treatment!!!!
I will have to try the honey in water (I can't taste sweet though so I don't know how it will taste). My ulcers are getting better slowly. I was able to drink a glass of tea today - and taste it (I didn't put sugar in it). It just loosens up everything in my throat so then I have to go spit mucus out in the sink for a little while after! I had about three days this week that I spent mostly in bed, but I have been up and about the past two. Apparently my blood work Monday showed I was slightly anemic and my white blood cell count had gone a little further down from the week before. I will have more blood work this next week to check my counts again. But I'm feeling good now and I'm noticing a few slight changes for the better. I'm hoping by the weekend I'll be able to down some soup and smoothies or something but I'm taking it slow! I want my ulcers gone and my throat healed up before I try too much. Also, my skin from the radiation is almost healed up! I have a couple spots left, but that's about it! So I'm definitely on the mend!!! Thank you all for the advice and encouragement!!!
Stephanie,
This is so good to read! I have 7 rads, and 1 chemo infusion left - yes! the end is in sight, or as my mother says, I can smell the hay in the barn.
I'm so glad you're on the mend.
- Margaret
Stephanie:
You are doing great!!!! Its so good to hear that you are making such fast progress in recovering. Have you tried chocolate milk? I found that wouldnt burn my mouth and was high in calories. Keep up the good work
Also try Carnation IB VHC which packs plenty of calories in a small can so more bang for the effort.
Margaret- it's probably just the burning from the radiation your smelling, not the hay in the barn! Just kidding! It's so exciting that you are almost done! Hang in there!
Christine- I bought some chocolate soy milk today, I'm lactose intolerant, so it's soy for me, which is fine, because I really like it.
David- I have been doing the 2calHN down the PEG, I only have to do 4 of those a day for my calories so it won't take much effort when I start drinking them. I tried the 2cal before I had my surgery and my only complaint was how thick it was so I guess I'll be thinning it down some with soy milk so it may not matter much that there are so many calories in a small can!
I bought some different teas today, one with honey, and it is sooo good! Does anyone have any suggestions for juices? Apple juice is a little rough on my throat, even cut with water, but I know it is kind of acidic. Any other suggestions? Juice is the one thing I have been craving.
Stephanie:
I use the 2cal also. Never have tasted one drop, only put it down my tube. To me, it has a bit of an odor like any other of the feeding formulas. I thin it out with water.
The fruits that arent so acidy are pear, peaches, apricot, and banana. When I started treatment somebody recommended the FUZE drinks to me. That might work for you. I think there is a mango peach one that should be ok.
It does smell bad doesn't it! I had to switch to the butter pecan flavor because I threw up the vanilla too many times early on that I could not stand the smell of it anymore! Thank you for the juice ideas! I'll have to get to the store and see if I can find any of them!
Stephanie,
I have found some really nice organic juices at Whole Foods, if you're into that sort of thing. I do try to get some real food down my PEG - just because.
The hay in the barn comment is sort of a joke - I have pet rabbits that eat timothy hay, so there's always a certain amount of hay on the floor. Not to mention, a slight 'barn' smell
Stephanie
you might also be able to tolerate white grape juice (not red). In addition to the flavored soy milk (I like mocca) you could also try almond based drinks (Almond Breeze). At this point I prefer them to milk.
M
Stephanie,
How many Cals are you getting a day. They told me 2000 but I wish I had tried to get 3000 per day so if you can do more, I would go for it.
I eat anything I can make soupy in my Blender. Some of it burns like hell, but I get it down, Even hot chili a night ago and man was it spicy. I wish it would put some weight on my bones. LOL I get my thick shake every day like the Dr said also.
Jim,
How many calories are you downing a day?
Stephanie:
I just wanted to say thank you on so many levels. Your words, your encouragement and your strength. I also wanted to tell you how proud I am with you for being such a trooper as well as everyone else who has gone through this. You are and inspiration and well I have great respect for you. Keep it up you will reach the top and then we will "do the dance"
Dianne
I finally managed to find pear and peach juices but man, they were a pain to find!
David-
I get a little over 2000 in my PEG with the formula and then whatever else I eat or drink during the day. I don't know that I have enough room in my belly for 3000 calories!I'm hoping in the next few days to be completely off the PEG and drinking my formula and some soup.
Jim-
I'm impressed that you can eat spicy foods. I'm watering down juice like crazy - but I still have a couple mouth sores.
Dianne-
No Problem, I'm here to help. Gotta keep my mind occupied!
I saw one of the agonizing "take outs" on one of the Olympians last night and it said that Michael Phelps, the swimmer, eats 10,000 calories a day!! He eats more at one breakfast than I eat in 3 days!!
David,
I'm like Stephanie, no room for 3000 calories.
Post surgery and thru RT week-three, they got me so fattened up (added over 6 pounds) that getting the mask buckled down was reminiscent of Guantanamo Water-board torture! I had got so fat they had to leave a buckle unlatched!
I had to go buy some bigger clothes!
Once I moved to the PEG they backed off to 1750 for a week and now this week upped it to 2000.
At 1750, I managed to lose a couple pounds and now I can squeeze in the mask again.
I guess I haven't yet hit that point where I need a lot of extra calories. For one thing, I am not exercising anymore (no jogging, hiking or gym).
I'm a couch potato!
I saw that about Phelps! CRAZY! I couldn't even imagine!
Don-
My mask started to get really tight toward the end of treatment, combine that with a sore neck, that last week was brutal getting buckled down!
Congrats Stephanie . . . awesome to finish tx! Took me several weeks to get past all the "stuff" in throat and foaming in the mouth. People don't realize that while it's a joy to be done with tx your body is now at its maximum level of radiation and it takes a good amount of time to work its way out. I am now 7 months out and feeling really good. Best to you in your recovery and healing.
Anybody that doesn't loose serious weight during this Tx is doing a lot in the "Right" column so hats off to you.
Boy, you newbies sure have it easy!!