Hello,

I am 5+ months out of treatment and I am still on a mostly liquid diet. I am maintaining my weight by drinking 5 cups of Ensure Plus a day (1750 calories.) I still have practically zero saliva which makes it almost impossible to eat anything, speak 100%, or sleep through the night. I saw my radiologist last week and he assured me that I will eventually get some of my saliva back. There's still time he said, but I'm getting very nervous that I might be one of the victims that never gets my salivary glands back. Does anyone know of a OC patient that was never able to eat get off of a liquid diet? My doctor did tell me to not expect to ever eat pizza, most meats and breads again. Damn!! I don't know why I was thinking I would have a full recovery. At least I know now not to look forward to normal eating again. Although that depresses me quite a bit, I know I have SO much to be thankful for. If anyone has any encouraging stories to tell me about eventually eating, I would LOVE to read them.

~Thankful Girl

Welcome to OCF! Im sorry you hear you are struggling at 5 months post rads. It sure is a very long road to get back on your feet after going thru so much. Please dont lose hope, you should still see many more improvements. Unfortunately there's not a single one of us here who ever recovered within the timeframe we imagined for ourselves. The recovery phase can be frustrating with ups and downs plus a few setbacks on top of everything else. At 5 months post rads, you still have alot more recovering to do. It takes 2 full years after finishing rads until patients are considered "healed". Some patients have reported even at 26 or 27 months post rads they noticed advances in their sense of taste and saliva. Protein is what is needed to rebuild your body after what cancer and its treatments did to eliminate the cancer.

As far as oral cancer (OC) patients who have returned to eating their regular foods, that is actually how most patients do. Almost every single one I have met at different OCF events has returned to eating like they had been doing before their diagnosis and treatments, or at the very least they are eating better than they had while they were in rads.. There are soooo many variables when it comes to eating, swallowing, sense of taste, tumor location, stage, etc that comparing patients to each other doesnt really make for an equal comparison. Out of the hundreds of OC patients Ive met, Id guesstimate 90% have returned to 50-75% of their pre-cancer eating capabilities by the time they hit their 2 year post rads mark. By the 3rd cancerversary post rads, its more like 95% are eating at 80%of their pre-cancer diet. Im not a fan of going by statistics as theres always an exception to every rule.

Yes, Im sorry to say but bread is something many struggle with so do yourself a favor and for now avoid bread, rolls, biscuits, crackers, etc. Rice is another food thats difficult to eat, I wouldnt suggest even trying it until you are able to do much better with your eating. Rice is sticky, difficult to swallow and causes recovering OC patients to choke. Below are a couple links Im sure you will find helpful. The easy to eat food list includes items that are a softer/smoother texture that are a bit bland but after rads, most patients are not able to tolerate spicy food so find these foods to be a good starting point. Recovery cant be rushed, your body needs to heal and healing unfortunately does take a long time. To rebuild your body, ask your doc if its ok to up your protein intake with things like whey powder. Buffet style restaurants are a good place to go when relearning to eat allowing baby sized portions of many different foods. Dairy works great when trying new foods that normally would be mild but now are very spicy and burning your sensitive mouth. I used to have a glass of chocolate milk just in case my mouth was on fire which happened to me the first time I went to a buffet to try eating. I had lo-mein noodles which I had always loved but now they were horrible and I had to run for the milk my mouth was burning so bad. Another pointer is be prepared for foods will not taste as you remembered. This can change after taking the first bite or two. What you discovered tasted great one day, could be one of the worst things you ever tasted a couple days later. Extra butter, sour cream, mayo, gravy, sauce, etc are helpful in trying to relearn to eat. Avoid anything with spices, even salt. Try everything on the following list and when you finish the list go back and retry everything again. This will get easier the further out you are.

Hang in there!!! The worst is already far behind you. As the days turn into weeks and months you will notice improvements with saliva, swallowing and sense of taste.

Good luck with everything!!!

List of Easy to Eat Foods

Main OCF Site, Understanding

Thank you, thank you, thank you Christine! Your input is very encouraging, and the food list is very helpful too! Even though we are all so different in our healing processes, we are also so similar in our experiences. It's nice to know I'm not alone in this life change and challenge.

~ Thankful Girl

You're welcome! We are all in this together and share the knowledge we have learned with each other. You're NOT alone at all, not anymore . Now you have a new online family of people who have been there and understand what you are going thru and what can help make it easier.

You really will improve with your current levels of swallowing ability, saliva production and sense of taste, it just takes time.

Best wishes with everything!!!

Hi there

I had dry mouth 5+ months after treatment. I now have a little bit of salivary after 18 months

5 months after treatment, I was just able to sleep due to breathing issues. in the first 5 months, I had very little sleep.

Hope you have steady recovery

Cheers

Michael