I am 3 month post treatment and I can eat very little because I have zero saliva, zero appetite and nothing tastes good. I also cannot brush my teeth with normal paste because it burns like acid. It's also very difficult to sleep because of my dry mouth. I'm going to try some of those xymelts you mentioned. Can anyone tell me if you think you have more saliva being 10+ months out from treatments than you did when you were only 3 months out of treatment?

Thanks!

Welcome to OCF, Charly!

We have all been where you currently are. Its not easy to see any significant amount of progress when thinking about your recovery on a day by day basis. Most patients are surprised to hear it takes oral cancer (OC) patients 2 full years for a complete recovery after finishing radiation treatments. Being 3 months post rads, you have most of your recovery ahead of where you currently are. You should have had some slight improvements in your sense of taste and saliva than haw things were when you first finished rads. Recovery can be a very frustrating time. We all can not ever get well as quickly as we think we should. Most patients will be in pretty decent shape around the time they're 8-12 months post rads. The second year of recovery they notice fewer major changes but they do still have some improvements here and there.

Keep up a higher intake of calories during your recovery and it will help you to rebuild your body after fighting cancer and the results of treatment for it. During rads its advised patients would take in at the very least 2500 calories and 48-64 oz of water daily. Ask your doc about adding high protein whey powder to your diet to help boost your protein intake. Protein is what helps the body to heal. Most OC patients/survivors that are in their recovery phase still need extra calories. One good thing with taking in a higher amount of calories on a daily basis is most of us do not gain weight for quite a while. It took me over 3 years after my 3rd round of OC before I began to gain any of the significant weight I had lost. Everybodys different and Im probably not the best example since I had some major complications that slowed down my recovery. The thousands of OC patients Ive seen over the years have all done much better when comparing their recovery several months later to their 3 month post rads.

Hang in there!!! You have been thru alot already. It takes time but you will get there and in time you will notice your saliva and sense of taste have both improved significantly.

PS... Heres a link from our main OCF site, where you can read page after page of info about OC.


Main OCF Site, Understanding Oral Cancer

You're awesome Christine! Thank you so much for you encouraging and reassuring words. Yes, my main concern is my nutrition. I still have the PEG tube in. My doctor told me on my last visit that if I can maintain my weight for two weeks without using the tube, then he'll take it out. I decided to challenge myself two weeks ago and not use the tube, which I have succeeded at, and maintained my weight by drinking Ensure Plus. I have an appt. with him this Thursday, June 20th. I would LOVE to have this tube gone, but I'm afraid I might get sick of Ensure and not be able to eat enough normal food to keep myself sustained. I've lost 20 lbs. and I wasn't a big girl to begin with. Not sure what I should do. If only I knew I'd be eating fairly normally within a couple of months, but we don't, do we.

Take Care

You sure have a nice doc!!! When I begged to get rid of my feeding tube, my doc said I must go without using it 1-2 months without losing even a pound before he would consider removing it. Oh how I detested that tube!!!! But boy did I struggle when I finally convinced my doc I would be ok. For me, being tube free was a temporary freedom due to having a recurrence where I required getting the feeding tube put back. It took me a very long time to fully understand the tube Id been hating, was just another tool to get me thru some rough times.

I was just like you at 3 months post rads. I couldnt wait to be back to my old routines and life. I even went back to work part time way before I was ready to help get back into my familiar routines where I was productive instead of being a patient. OC isnt just difficult to get thru those horrible treatments, I downplayed the mental impact everything was having on me. I was determined to put those days of sickness, treatments and sleeping all day away and move on. Only problem was I couldnt move on until I was 100% as well, as close to my old self as was possible. I dont often discuss the mental anguish OC caused in my life. Thinking back I should have been better at taking my own advice to other OC patients and finding a professional to talk to.

In the whole scheme of things, having that tube another month or 2 really isnt very long. With your being on the slim side and already losing 20 pounds, to me that says it all... unfortunately for now, you should hang onto your feeding tube. I know how much being rid of the feeding tube means you really are finally better. Getting your feeding tube removed is a major accomplishment. Its an achievable goal every OC patient that has a tube dreams of. Do yourself a big favor and just hang onto it a little longer until you are doing better with your eating and saliva. Staying positive helps too, Im a firm believer in positive thinking! Avoid anyone thats overly negative to help you to remain positive. It just all takes time, more time than any of us like but in time you definitely will improve.

Hang in there!!!

When my husband wanted to get rid of his feeding tube, we had the advice and support of and dietitian who worked out the daily calorie intake and fluids for us. If you are worried about getting tired of Ensure, now is the time to explore what kind of soft food, puréed if need be, and calorie-boosting smoothies you can use to substitute for the Ensure. You can also put in fruit, ice cream into your Enusre to make a smoothie. Mind you, it’s not easy to replace Ensure completely because it has got such a high calorie count but you need to start somewhere. You might also want to keep a record of how many calories you’re consuming every meal, that way, you’ll know if you’ve hit your target. It is do-able but you need to get organized to make it work. Good luck!

Hi I am 10 month out last rads on 31 August answer yes I have more saliva than I did, not perfect still have dry mouth in the night. I too use xymelts just 1/2 of one when I wake in the night now I am getting on average 8 hours sleep ,a far cry from the early days.
I use duraphat toothpaste which is prescribed to me in the uk by my dentist it’s a high fluoride toothpaste along with a very soft tooth brush which I got from the big online retailer not sure If i can give the name ?
There is light at the end of the tunnel , and life can begin to get back to a type of normality we all just get there at differing rates some take longer than other. Do you have a warm drink with you when eating to help the food go down it helped especially in the early day s.
Good luck
Hazel

Thank you Hazel. Your post is very reassuring. I appreciate you taking the time to share your experience with me. Had a good doctors visit today. PET scan was clear. Yay!

Charly

Great to hear PET was clear!

CONGRATS on the great test results!!! The 3 month check up can be a nightmare for many patients just finishing rads. It can feel like the weight of the world is off your shoulders when test results and the check up confirm you are right on track and cancer free.

Time to celebrate

Brill news that gives you a great lift
Onwards and upwards

Improvements will follow just remember baby steps all the way.

Hazel x

I’m about 11 months post treatment now and I’m starting to think I’m doing pretty good! I don’t have a lot of saliva still and I hate how dry and awful my mouth is in the morning, but I can eat pretty good actually, I just need a lot of gravies and sauces to help with swallowing. I mostly stay with ground meats, pastas, mashed potatoes, gravies, well done veggies, soggy cereal, soups - easier stuff to eat. Every couple of months I seem to notice a bit of an improvement, and I do now believe that it will still get better for another year or so. And - I actually ate pizza tonight!!! I ate it with 3/4 of a jar of marinara sauce, but I didn’t think I’d ever eat pizza again so I was thrilled.

For toothbrushing it was only about a month ago that I went back to regular toothpaste, prior to that it was too ‘spicy’ for me. I found Biotene toothpaste to be okay though (at $11 a tube compared to $1 for the usual kind!) I do still use high fluoride toothpaste 3x a week, plus fluoride gel once a week. I also use Biotene mouthwash in the middle of the night when I get up to go to the washroom.

Anyway, just wanted to wish you well, and like others let you know that it does get better for quite some time after treatment ends.

Take care

Hi there,

Thanks for the positive post. I'm just at the begining. I'll find out on 1st July what date my treatment starts (I'm on a clinical trial so need extra tests completed this week before the randomisation happens on Monday)

It's great to hear you've eaten pizza. Definately something to look forward to once my treatment is done.