I am about 8 weeks out after my last radiation. The good news is that the tumors appear to be gone. The terrible thick mucous has been replaced by a more tolerable "foam". Taste is beginning to come back (a relief) but I am still having difficulty eating regular foods because I essentially have no saliva. Taking swigs of water as I chew helps, as does choosing foods with high moisture content of their own.
Also, I cannot eat some items because they burn my tongue, e.g. carbonated beverages, tomato sauces, mayonnaise, and even a few things that are not carbonated or acidic. It seems to affect the edges of my tongue more than the center.
I am wondering when the saliva began to come back for others, and when the burning began to go away? Thanks.
Recovery from OC treatments can take a long time. It can take a full 2 years to fully recover.
My sense of taste began returning about 2 months post rads. It gradually improved over time. If I remember correctly, I was doing pretty good around 6 month post rads.
Your sense of taste will fluctuate quite alot over the next year. Something might taste great today and tomorrow it will taste terrible. Same goes for what burns your mouth. For me, chocolate milk helped soothe my mouth when eating something that burned. I would always have it on hand ready whenever I would try new foods.
Hang in there, it will get easier in time.
As mentioned, It takes time, and basically hit or miss with the taste buds to some extent. I still have problems with spice, even three years later, due to several treatments, but have come a long way. Currently no taste from last treatment, but I try different things to help along since taste has memory, and try many foods, and others. Maybe even try a buffet to see what you like...saves money.
Here are somethings that may be helpful also. Try to stay away from acids, spices that burn the mouth. Eat foods at room temperature or cold, since too hot destroys the taste buds. Drink lemon water or smell lemons, chew gum prior to eating to produce saliva, which involves taste.
Taste is more than just eating. It involves the 5 taste senses...salt, sweet, sour, bitter, and umami. Try to reach all these areas, which are thought to be separate, maybe not, and umami crosses over into others. Taste also involves memory, seeing, smelling, hearing, and texture, and try to utilize them all.
There are taste buds on the tongue, which continuously die off in everyone, and new ones are made, and have a 10-14 day life cycle. In our case, our treatments kill than can be replaced, and saliva glands compromised.
There is a test you can do to see how many taste buds you have. You take a round paper sticker, the type for loose lief books, and place blue food coloring in the hole on your tongue, and the taste bud will turn a turquoise color, and count them. The higher he taste buds, the better. Over 40 or so, and you are a super taster! Good luck.
Thanks everyone; I guess I am just impatient, wishing this recovery would move along a little faster. My appetite is coming back so I am "jones'ing" for some of my favorite foods, like chili, pizza, pasta and salsa, but find the stinging/burning sensation is just too much to be able to eat them now. Will keep trying at intervals. Thanks for your feedback and suggestions.
How about the dry mouth--does that get better with time? I had 36 rad treatments and was fortunate to rarely have pain or sores, and the exterior burns healed completely with aquaphor, so I am hoping I will get lucky and get some saliva back, too!
Radiation continues to work up to 6 weeks after treatment. For me, significant improvements were at three months, although after two weeks, the rope mucus improved. It gets better, but probably not 100 percent. I'm three years from my first treatment, and still have dry mouth. There are things to help dry mouth, which you probably did for your treatment, and need to continue doing like hydrating, rinsing. Take care.
I noticed my first imporovement in my saliva (and taste as I believe they go hand n hand) at 4 months, then more at 5 months, then status quo until a huge improvement at 14 months and finally a tad more at 24 months. I estimate I am back to 90% pre Tx but there is no way to really tell as you quickly forget what 100% was like. I can eat or drink ANYTHING so just be patient and give yourself those 2 years and see where you end up.
Hi, Ed
my husband has found that spices containing capcasin (hot peppers) are the hardest to tolerate. I make chili without hot pepper/red pepper, using the spices cumin, coriander, oregano, and thyme, using red and green bell peppers. I also use a mild kielbasi as the meat - it is fatty, soft and easy to swallow. I know it doesn't sound like chili - but it tastes good!
Maria
I'm almost 19 mos out of treatment today... Carbonated drinks still unfriendly, and tomato sauce is hit or miss. I avoid all spicy foods. But that fine everything else is ok.
Thanks everyone. Sounds like I will just have to wait and see where fortune takes me. I look forward to the day when we can treat these cancers without having to burn or poison ourselves in the process, or at least when we can spare the innocent organs nearby! Happy holidays all!