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Sore tongue for how long?

cic2
Posts: 12
Joined: Dec 2012

Finished radiation 4 weeks ago. Tongue has huge white patch and even apple juice burns. Still have a lot of pain. How long before things start to get better after radiation? All I can do is drink Boost Plus. Can't swallow anything else. Seems like things are worse now than when in treatment. What have others experienced?

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

cic2,

 

Everything (slowly) started getting better as treatments ended, maybe a week later.  I drank one meal a day during treatments the rest by PEG.  Two weeks after treatment ended I popped my PEG and moved on to smoothies for 7 months.  Even with a sore mouth, tongue and throat I swallowed.  I did not eat much food, but tried food constantly.  Drank Boost and Ensure during treatments and made my own smoothies after treatments.

 

 I would expect your soreness to diminish a little every day.  Some times we don’t even realize things are better.

 

Best of luck to you,

 

Matt

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

at the beginning of recovery.  This last month being probably the worst since you began treatment (the first 3 to 6 weeks after radiation is over usually is).  I'd think at this juncture, any friut juice would sting a lot, and any food would be hard to get down.  You will now begin to recover ever so slowly, getting better by degrees each week....at first you won't notice it so much, and then it will become apparent.  You're still vulnerable to thrush, so keep an eye on that white spot an keep your Dr.'s informed, as they can give you meds for that. 

For the time being all you can do is revel in the fact that you got thru the treatment, and KNOW that things will get better....I finished rads in June....I started eating real food in September....and haven't had a single Ensure since!! Laughing

p

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Have you ruled out thrush?  Seems like my husband keeps havin trouble with it.  It could be the mouth is just healing like everyone else has mentioned, but you talk about a white patch on his tongue.

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Cic2

Unfortunately, you are now at probably the worst possible time in all of treatment.  At least it was for me.  That's the bad news.

The good news is that it only gets better from here on out......so as others have said, rule out thrush (Need meds to clear that up).

Keep hydrated and get the calories in -- no matter what the taste -- this is most important.

You sound like you are right on schedule -- just keep hanging in there.

Hope it keeps getting better for you.

cic2
Posts: 12
Joined: Dec 2012

Thanks! Anyone know where you can buy Scanishakes retail? Figured I would give that a whirl. I've ordered online but it takes forever to get.

Thanks all

cureitall66's picture
cureitall66
Posts: 856
Joined: Aug 2012

Unfortunately, it does feel like the mouth still keeps taking a beating after radiation. My loved one is now 8 weeks out and the pain has let up for the most part. He has been swallowing water and now tea for the last 3 weeks. Started some simple soft foods about a week ago. He's now eating smashed up peaches, cinnamon applesauce, chicken noodle soup and of course he's drinking his 2.0 and Ensure throughout the day to keep up his calorie consumption. We are just testing different foods right now. Most have not gone over very well either because of consistency to hard to swallow, smell or the taste is just plain bad. But, we're trying to keep up his swallowing so that he can get to another level. His doc's want to see him swallow some "food substance" next week...think we have that conquered. PEG is still in, haven't used in about 3 weeks. It comes out at the end of this month.

I would say to be patient and don't be afraid to try something different and don't be discouraged if you can't tolerate it right now...things will come back. Just be sure to keep doing your Boost/Ensure to keep your cals up.

~Cureitall  

greg from pa
Posts: 86
Joined: Jun 2010

for me the worst part of treatment was the 4 or 5 weeks after radiation.I to had the white patch on the tounge (could be thrush) my doctor gave me meds for it. I lived on soft foods with gravy untilabout 5 months after treatment.  I drank alot of protein and fruit smoothies also.had a pegtube but only used it about 4 weeks. its probably tough right now with the pain and all the phlem.  hang in there you survivd the mask .things should be lookin alot better in 2 weeks or so if your experience is anything like mine  best wishes  greg

 

hwt's picture
hwt
Posts: 1882
Joined: Jun 2012

I would definitely ask about thrush, no point in suffering if it's something that can be treated. I had several bouts of thrush and the last time it was treated with wafers. They were easy and so I never missed a dose and the thrush never returned. 

cic2
Posts: 12
Joined: Dec 2012

Saw MD no thrush and the tongue is slowly starting to get better.Still mostly a Boost Plus and Scandi diet but slowly working way up to other soft foods. Thanks everyone

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