Do you guys have deep cracks in your tongue? My Dad does. He said the main thing that's keeping him from eating is his tongue. The doctor told him today it will probably be a year before his tongue is back to normal. Seriously??? Geez. I told him it's not a problem for him to be on a "drinks only" diet. I can make plenty of soups and shakes, but as of now he is so limited. Says certain things hurt his mouth and obviously his taste buds aren't the same. I'm just praying he can eat solid foods sooner than later. He is a big guy and loves to eat, so this really sucks.
Shanette, recovery takes forever in the eyes of the OC patient and the caregiver. In reality most patients are doing much better about 6-8 months post rads. The sense of taste usually begins to return at about 6-10 weeks post rads. But a complete recovery can take a full 2 years. His body has been cut, poisoned and burned and weakened so it will take a long time to get over that and to rebuild itself. Using high protein whey powder added to drinks can help to speed up the heeling process. Keep up at least 2500 calories and 48 oz of water for at least the first year after rads. Maybe he is a little dehydrated and thats what is making the tongue appear worse with the deep cracks. You can always ask to have him hydrated by calling the doc for a prescription too.
Ask the doc for a prescription for magic mouthwash. Im sure you can call that in and the doc can call it into the pharmacy. It will help your father by numbing his mouth for a few minutes so he is able to eat easier.
Your father has been able to keep swallowing so he is ahead of the game. Recovery can be very frustrating. Its one step forward and 2 back for the first couple months. One day foods will begin to taste ok then the same food the next day tastes like salted burnt charcoal. In time this will all be a distant memory.
Hang in there, the worst is over. Its all downhill from here.
Hi Brandi,
I agree - it does suck!! My tongue also developed deep cracks from treatment that made me think they might split or open (which they never did). I seemed to notice it right after treatment ended and it is gradually getting better and still healing. They don't appear so deep now (7 weeks from treatment) but my tongue surface is still not as smooth as it was before all this. I did use the Magic Mouthwash which helped with some of the discomfort. As your father just finished treatment a few short weeks ago; his tongue should gradually heal as well.
I am still using my PEG for most of my nutrition. I am able to eat soft foods (poached eggs, cream of wheat, puddings) by mouth but even those hurt quite a bit at times. I find it takes so long to eat by mouth and my selection is still very limited. Hoping the pain subsides even further so I can try other foods that have enough nutrition so I can get off the PEG soon.
Best,
Nancy
My tongue didn't do that during treatment but 10 years later it does that off and on every week. I never know what is causing it and can't attribute it to anything special other than maybe dry mouth.
Ed
His doctor looked in his mouth yesterday and there was no mention of thrush. I don't think he has that.
I had Thrush 3 or 4 times post Tx and each time it looked like my tongue was splitting down the middle. The pain was sharp but Diflucan cures it.
The river or cobblestone type tongue cracks may be from constant dry mouth, and repeated thrush, a candida infection,causing a depapillated lobulated tongue, is also found in sjgrogens syndrome.
I too developed deep cracks in my tongue mid treatment, also associated with thrush and mucositis. I had an extremely sore mouth which made eating very difficult. But after treamant it is a gradual process of healing. So tell him to hang on in there it does get better. I have just been to check my tongue and yes there are still some deep fissures. I don't think they were necessarily the cause of the pain, it was all the other things going on. Sally