How long before I can eat?

Swallowing
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.

Swallowing, Taste and Pain
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

Skiffin16 said:

Swallowing, Taste and Pain
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

Sliding v. Swallowing
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

THROAT PAIN
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 said:

What everyone else said...
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

I too couldn't swallow food.
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.

Stay Strong
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

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

SWALLOWING
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 ****. 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 said:

Hi Kristy

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

Just a little bit more..
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

I had to use a feeding tube
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.