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How long before I can eat?

KristynRuth86's picture
KristynRuth86
Posts: 140
Joined: Aug 2010

I literally can barely swallow anything, this is so depressing. I only have 2 weeks to go until I'm done with radiation. How long did it take everyone to swallow and be able to taste again? My throat is in so much pain :(

SASH's picture
SASH
Posts: 298
Joined: Apr 2006

I tried to keep swallowing all through treatment, but by the end I was only getting 1 glass of Gatorade a day. After I completed radiation and chemo it took several weeks before I could swallow much of anything. I was looking for high fat, high calorie options that were low in sodium because of the sores in my mouth. I found the easiest thing to eat was the Graham crackers dunked in milk to soften them.

I didn't really start eating until after I had my surgery and then that was between 3 1/2 and 4 weeks after surgery. It was gradual but every day was better than the day before. I had my peg removed about 2 1/2 months after surgery.

Everyone is different so you will progress at your own level.

micktissue's picture
micktissue
Posts: 430
Joined: Dec 2009

I'm 6+ months post-treatment and cannot swallow or burp - esophagus is completely closed. I stopped swallowing because of the pain and it contributed to the closing. My suggestion is to try and keep swallowing to keep your esophagus from closing while it heals. Do you have a g tube?

Best,

Mick

timreichhart
Posts: 194
Joined: Aug 2010

Well I am about 7 to 8 weeks post treatments and I just started to eating small for the past 3 weeks. Today way back from getting my PET results me and the wife stopped at dairy queen got some food only thing I had was a plain hog dog with bun and it took me about 15mins to get it all down with sip's of water. My advice start out small bits and also do you have any taste? because my taste did come back about 5 weeks of post treatments. FYI you better eat or your chemo will jump you about weight lost. Because my chemo doctor did that to me and he told me if I didn't start eating to maintain the weight he was going order a feeding tube.

Skiffin16's picture
Skiffin16
Posts: 8219
Joined: Sep 2009

Like SASH says, you'll find everyone is different (to some degree). You'll find that most here will agree, that the last three weeks of radiation, and the next three to four will be your worse. So saying that upfront, try and not get discouraged, sounds like you are right on track with the norm.

It's rough, but you have to keep swallowing to keep the muscles working. I didn't have the PEG so keeping them working for me was essential. I had a routine that worked for me. I'd get everything prepared in advance to taking in nutrients. I'd take a teaspoon of the numbing solution, drink a half glass of water, drink one to two cans of Ensure Plus, eat a few sliced jarred peaches, drink the rest of the water or a glass if I could tolerate it, then chase it all with a ground up percocet in a little water.

I'd do this routine 3 - 4 times a day...

As for taste, I'm sixteen months out and still have gains, but over all I'm about 80% plus of what I once had.

The first several months consisted with constant sipping of water. Each bite of food, a sip of water, any talking more than a few sentences, a sip of water...I'm long gone from those days, but I do still need a sip a few times during the night. Other than that, saliva is close to being how it always was.

I know it's not the best for news you were hoping for, but it's my honest assessment an experience.

You can do it, we all have...it's a long slow process for most..that's where the everyone is different comes in, some have had minimal effects.

Hoping for a speedy recovery for you, but realize that progress is measured in months at times.

Best,
John

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Make sure you are swallowing and not just letting things slide down. I remember coaching Mark around this. I made him a shake with Ensure, Carnation Instant Breakfast, L-Glutamine, fresh berries and sherbet. It was the only thing he would swallow for a while. But he never lost the ability, and he recovered nicely. "Essence" of food is what his first taste was...and it motivated him to eat. Eating with no taste became very tiresome. He would eat based on memory...eventually the memories faded and he ate for nutrition. Now at 2.5 months out, he has 75% taste back.
And if you drink, drink calories, like Sash said, gatorade, vitamin water, smoothies...just get those calories in there.
In hindsight Mark realizes how important it was to keep his fluid intake up. But boy did he fight it in the beginning.
Fluids
Calories
Swallow
Stay the course...the end is in sight...keep pushing...when you feel like you can't go any more...push harder...you will make it.
Go girl!
(Is that picture you with your wig? Awesome either way!)
Kim

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

Kristyn, what are your Doc's giving you for pain? I wear a 150 Mic fentanyl patch and also have liquid Concentrated Oxy Codon to be used as needed for acute pain. The reason I finally had to give in and have the PEG inserted was that all of this Medicine did not work well enough to try to swallow down my recommended 2,500 calories / day.

I will have the PEG in one week tomorrow night, and am 100% dependent on it to reach my nutrition goals. I do still swallow a variety of liquids by mouth and will do a Boost or to a day by mouth also.

Proper nutrition = proper and quick healing of the inside of your mouth. Get your calories in, and just as important, you must practice/excercise your throat muscles as they will atrophy quickly and then be of no use to you at all.

Sounds like we are fairly close in treatments. I have 7 more Bi Lateral Neck Rads. left and 1 more Cisplatin. I expect to ring out on 10-20

Hang in there, you will do this. We all have your back!!

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

Kristyn, what are your Doc's giving you for pain? I wear a 150 Mic fentanyl patch and also have liquid Concentrated Oxy Codon to be used as needed for acute pain. The reason I finally had to give in and have the PEG inserted was that all of this Medicine did not work well enough to try to swallow down my recommended 2,500 calories / day.

I will have the PEG in one week tomorrow night, and am 100% dependent on it to reach my nutrition goals. I do still swallow a variety of liquids by mouth and will do a Boost or to a day by mouth also.

Proper nutrition = proper and quick healing of the inside of your mouth. Get your calories in, and just as important, you must practice/excercise your throat muscles as they will atrophy quickly and then be of no use to you at all.

Sounds like we are fairly close in treatments. I have 7 more Bi Lateral Neck Rads. left and 1 more Cisplatin. I expect to ring out on 10-20

Hang in there, you will do this. We all have your back!!

D Lewis's picture
D Lewis
Posts: 1565
Joined: Jan 2010

I'm now just about 4 1/2 months out. Eating is going well, but I'm still at that stage that Skiffin mentioned. Eat, sip water. Talk, sip water. Cat nap, sip water... Sip water and then sip water again. I am really looking forward to moving beyond this point. No pain at all, and taste is just about at 75%. Weight is just fine. Beer tastes good again. Meat, bread, pasta, not so much.

Deb

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

I too couldn't swallow food. I had a peg. My esophogus was damaged with radiation. I have had two stretchings since radiation and only recently have made good improvement. I still choke on foods tho. My mouth and tongue are still in pain daily. Foods still burn. I didn't eat food for over five maybe six months. I had my peg for 18 months. Just got it removed three weeks ago. Keep trying to swallow for as long as you can. I know it's hard and painful. Hang in there.

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

KR,

It is a tough period and may get a little worse before it gets better, but you should get alot of it back and be able to eat, just not right now. I did the 'rice in slurry' thing for a while as it was a good 'slider' food and got some grits in but I was on the tube for 2-3 months post treatment so as I increased the food by mouth, I reduced the PEG feeds until I was 100% OK with 'normal eating'.

Googel 'Green Smoothies'. These are a breatr way to get some excellent nutrients in and in liquid form. You might sufer some burning as foods will react differently, but that will pass too. THis is the time The L-Glutamine became a godsend because it acts to neutralize the burning when you try new foods and ..well get it wrong, and need a quick 'stop the burn' fix. Just mix a heaped spoon in water and swish n swallow.

It will take a while KR, so you have to be patient (don;t you hate to hear that...) You have taken a beating and need time to recover.

Keep us briefed.
Scam

Jimbo55's picture
Jimbo55
Posts: 573
Joined: Jun 2010

Kristyn, Yes it is depressing, but the 2 weeks which seems like a long time now, will go by quicker than you think, especially that final week. Like Scam, I also did the rice porridge, which went down easier than most other things. I called it the watery gruel and haven't had it since. My taste started to come back after about 1 week and has slowly but surely been improving since then. Same time line with the swallowing, gradual improvements after the 1st week. Stay strong Kristyn, you're almost there. Cheers

Jimbo

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I know it is difficult - but keep trying. It will get better.

Greend's picture
Greend
Posts: 678
Joined: Feb 2010

I lived on it for weeks.....keep trying so you don't lose the ability to swallow.

abbimom's picture
abbimom
Posts: 82
Joined: Sep 2010

It gets better but it takes time. I lived off of milkshakes which is not really healthy, but it tasted good. Everyone is different but just try to keep swallowing, I think it took me 5 months after radiation to be able to just drink ensure. I was on a peg tube. But my treatments were 10 years ago and now I think radiation is better then when I had it. Good luck to you and congrats that you are almost finished. Not being able to eat is so frustrating and something "normal eaters" will never understand. Best wishes,
Linda

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

Kristyn, sorry to hear you too are going through this. I made it through 10-12 Rads with absolutely no side effects.I did contract a very nasty bout of thrush after my surgery that I am still battling with. Literally overnight the flood of mucous came on and 3 of the worst looking open sores on the right side of my tongue that I had ever seen. These felt like someone was cutting my tongue with razor blades. I had a PEG inserted a week ago tonight as after my 15th - 18th Radiation treatment as I then knew there was no way I was going to swallow down up to 2,500 calories /day. with the tube in, the best day i had was yesterday and I managed to get about 1,700 calories in. The problems I am having with the bag are some cramping once i take a can and a water wash, too much residual feeding left in me to start another one. My wife was talking with my RD from my team and she is going to swith out my nutrition to a higher calorie / serving product to help reduce the amount of liquid I have sitting in my gut an any one time. Allot of my nausea comes from swallowing allot of the mucous as I am also trying to keep my muscles worked out as best I can. I probably spit out 40% of my mucous and swallow more of it at night as rolling over to a cup erery 3-5 minutes is a pain in the ass. I also just got back on my OXYCODON Concentrate tonight as the pain is getting worse as my treatment comes to fruition. My RD says she sees allot of her patients pain and other side effects actually peak at about this time and will stay severe even once treatment ends. She says as far as how the pain and side effects will last after treatment is again based on the individual. I have been told I will heal much faster if I focus on keeping he protien and calories at my goal, and to also never stop swallowing. (EASIER SAID THAN DONE, BUT YOU MUST TRY)

Kristyn, I hope this lends you some support, as I did not paint a very rosey picture, but I do not think it will be.

HANG TOUGH MY FRIEND!!

MIKE

Hondo's picture
Hondo
Posts: 6238
Joined: Apr 2009

Hard to say as the affect of treatment are different on everyone, do your best use the PEG tube but try and swallow just water if you can to keep things moving

staceya's picture
staceya
Posts: 707
Joined: Jan 2010

The next 3-4 weeks are the hardest. My best bet was Jello and boost (not together).
Can you take some pain meds 20-30 minutes before attempting to eat?
Do you have a peg? I did not and had to do IV hydration as I could not take enough orally.
Things got better gradually at the beginning and then in spurts.
I know it is hard, I was so upset at that time, but you will come out the other side. We have all been there and are virtually walking with you through this. The slideryish the food the better, jello, custard (cozy shak makes a really slippy one) boost, thinned down milk shakes and before you know it, you will be trying a french fry again.
You are in my prayers.
Hugs
Stacey

CajunEagle's picture
CajunEagle
Posts: 366
Joined: Oct 2009

During the last couple of weeks of treatment, I was a wreck. I suppose that I just got lazy and totally dependent on the Peg Tube for calories. No swallowing at all, and a tremendous bout of thrush. I know now that it was a huge mistake which led to months of therapy in re-learning to eat and speak. I endured 35 rads and 6 rounds of Cisplatin, two weeks of 5-FU, and 2 rounds of Taxtera. Rest all you can, Krystan, but please don't give up and get lazy.

Larry

bchapman
Posts: 4
Joined: Oct 2010

I had to use a feeding tube for 3 months along with fentonyl patches and lortab elixr. Seems like a distant memory since I was so doped up. I slowly started with very small bites of soft food along with lots of water. Overall, it took about 4-5 months after treatment to eat regularly. I, like most people, tote a bottle of water everywhere. My saliva is still thick after 3-1/2 years. I still can't fully taste sweet things. As you will find out, everyone is different. I have met people that have it easier and people that have it harder. You have to keep in mind that you survived...everything else is an adventure. The one thing good about not tasting sweets is you don't gain as much weight LOL. Never give up.

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

And it was depressing, even though I knew it was coming, and worked to prepare myself. I was very glad I was not one of the "bad" cases, but still sad for myself that I couldn't taste or swallow food. I could drink water the entire time. I don't remember when I started eating again, seems it was a few weeks after rads ended (more than two, less than eight). My taste returned very quickly - I could taste lots of things when I started eating. A couple months out, I could taste most things. Seven months out, there are only a few things I can't taste "correctly" (chocolate ice cream and Big Red soft drinks), and a handful of things I can't eat (I can eat most things, but some things are so difficult, it's not worth the effort and frustration or discomfort - some meats, pastries, some spicy foods). I'm sitting here with a very mild sore throat (seasonal, I hope) feeling sorry for you, but knowing that there's still a good chance lots of folks here will be jealous of your quick recovery later. Do well.

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