Hello all,

Yesterday I completed my last treatment of radiation. I am very excited not to have to go to that everyday now. The gave me a list of instruction of things to do post treatment, one was to begin eating and drinking as soon as I can tolerate it. My mouth is still pretty sore, plus been very sick to my stomach the last few days. I am hoping to start to drink some liquids within the next few days. I was just wondering if anyone had some suggestions on what liquids to try first? Also, if I should try to drink with a straw or by spoonful. I am pretty nervous about throwing up what I take down if I just try to drink it, as I have been spitting mucous for the past couple weeks, and haven't really drank anything by mouth.

Also before I attempt drinking by mouth, I was wondering if there are any restrictions on what I put through my PEG tube. Was hoping to get some extra hydration for the next few days, and was planning on attempting (at room temperature). Some juices, possibly Sprite or Gingerale, and was hoping to get some Gatorade in for the extra electrolytes. Any suggestions would be greatly appreciated.

Thanks in advance!

Paul

Paul,

I started out eating cream soups for lunch, like cream of asparagus/broccoli/celery. I also tried to drink my carnation vhc drinks. It was a slow process that took me a month to move up to more solid foods loaded with gravey or sauces. I drank water with every bite because of no saliva. Also, pastas with sauces were easy to eat. I stayed away from soda pop because it had no nutritional value. My suggestion is to try one meal a day with something like a cream soup and pudding, and then later add mashed potatoes or pasta with sauce.

Hey Paul

Congrats on being finished with the rad tx.

I would suggest water at first, just to see how you're handling things. While all of us have different reactions partially because of the various locations of our zapping, you may or may not have trouble swallowing. Just take it easy at first, then work your way up the viscosity scale.

Now on to the PEG. I put anything and everything down it that would flow. Gatorade was definitely on my list, as well as V8 and many other water down blended recipes.

Kevin

First off Congrats on getting through your treatment..

I agree with whats been said start with water work your way up it can take a good month or more to start to see changes and it will get depressing (thats what we are here for) but it really does get better, i couldnt tolerate drinking from a cup or glass i used a straw at first i had a lot of mouth sores, i was told not to put anything other than the prescribed food and drink into my peg but looks like it's different for everyone. wishing you loads of luck and a speedy recovery..

Debz

Hi Paul! Congratulations on finishing your treatments! now you can heal...The next few weeks will probably be a little rough. The cumulative effects of the radiation are intense- but once you get over the hump. I had the exact same symptoms you are having.I finihed in May 07 It will take some time for the swelling to go down so be patient. Everyone's healing time is a bit different. Carbonation is just now getting better for me and citrus drinks took some time and still burn a little bit but just slightly.

You can put anything liquid down the peg tube- I htink you coudl put gaterade down there. I put a little bit of carbonated water in or sprit efmr time to time to clear the line. Just make sure you flush the line thoroughly with water. You can put anything you want in. I put in warm herbal teas and honey with lemon. That was my fa-- for somereason- even though I wasn't drinkig it it felt comforting. Herbal tea is my fav. Also I think having some of the real things you used to enjoy preps your body for eating and digesting real food again.

Its going to tak esome time to get off the Peg. AS soo as I was done with radiation at the end of May I wanted the thing out but I had to have it for several months afterwards and gradually transitioned back to liquids (ensure smoothies) and then solids.

I got my Peg out 3 months after the end of radiation. One thing I did that was helpfula nd helped me feel less tied to feedings was to take a can of formla and a syrnge and a cup out with me. If I felt fatigued or hungry I would jst go into any bathroooma nd syringe in food. It helepd me be more on the go and enjoy htings.

Also I've heard that a joey pump is great for feeding at night. Remember that your body is blowing through calroies with healing- so load up. It will help yu to heal up faster.

Hang in there Paul!

miss Kate

Paul:

Congrats on finishing your treatments!

For liquids what worked for me early post treatment was yoo-hoo, water, chocolate milk, and McDonalds sweet tea. Be careful with sodas, it will probably burn your mouth like crazy. Im 6 months out and still cant drink soda. I couldnt handle a straw and drank right from a cup.

As far as early foods, try creamed soups. It will take a while for your mucous to settle down and your mouth to heal to enable you to eat. Also scrambled eggs, puddings, and yogurt work very well. Dont get discouraged if you try something and it tastes bad, wait a couple weeks and try it again.

Hi Paul, I had a very sore and blistered mouth after radiation. The only thing I could tolerate for a couple of months was white tea sweetened with sugar or non-acidic fruit juice (such as peach or pear). Actually tea worked better for me then than it does now. As long as I had problems with that thick mucous, the tea cut through it and I could actually taste the sweet fruit juice--when that went away and I had more problems with dry mouth, I found tea dried out my mouth worse. Once a little more of my tatse came back, chicken or beef broth and creamy soups also worked.

Nelie

Paul,

I drank room temp water and VHC for many many months post Tx. As soon as I was downing 3000+ calories a day I started to feel like eating other foods. I didn't have a Peg but I tried anything and soon found things that "tasted" better than others and were easier to eat. Explore for yourself.

Thanks for all the suggestions. Today, my pleghm seems to be a little less than yesterday. My mouth still feels warm, so trying to keep up with the Prevention solution that they RO gave me, as well as the miracle mouthwash. So far I have tried to drink a few things by mouth. Yesterday and today I was able to get down about half a glass of cocoa. Also have found flat room temperature Gingerale is acceptible, but have only had about a dixie cup at a time. Orange Gatorade must have too much citric acid in it as that burned on the tongue, so I stick to just putting that through my peg tube to get the electrolytes. The Gingerale also does a good job of cleaning out the peg tube. Hopefully I'll continue to see more improvement in my mouth as the week progresses. Looking forward to trying some of the other suggestions.

Paul

Paul,

IMO you are doing great at this juncture so just keep plugging away and just because something burns your mouth or doesn't taste good today don't write that off forever. It took all of 16 months but everything is just about back to pre Tx normal.

Well today seems to be a little better than yesterday. I think the cold I caught a couple weeks ago is starting to end. Don't have the nasal congestion, and have been coughing up less. Today I did worked on stacking some wood in our basement, that my inlaws were kind enough to drop off, hopefully will stop the furnace from running as much. Took my mind off things for a bit, and actually worked up a sweat. So been putting a lot of Gatorade through my peg tube to stay extra hydrated. Today I even tried some Rootbeer that had gone flat, and was able to drink it by mouth probably only had 4 ozs--but even that feels like an accomplishment. The progress over the past few days is encouraging. Hoping I will be in much better shape by the time I have to go to my follow up appointment with Dana Farber on April 15th.

Paul

David,
I sure hope I will be able to say everything is just about back to normal when I'm 16 mos out! It's so good to hear that you are almost back to pre Tx normal!!!

007,

I hope so to. Sixteen months doesn't sound like a long time when you type it or look back on it but man it sure felt like when I was going thru it. Since it does seem to drag on, and you recover in tiny bits and pieces you get to these stages where you think that you have finished recovering. But now, even if I don't recover any further, I'm way pleased with how much I did recover. I won't win any cooking contests but I do enjoy everything I eat without limitation. I hope this fall you will be posting as a happy eater again.

Christine,

Thanks for the suggestion of Yoo-hoo, I haven't had it since I was a kid, but picked up some today on my way back from a Chemo follow up appointment, and am able to drink it. It felt good drinking something cold, and it didn't burn my tongue. My bloodwork came back good from the Chemo appointment, and they said it looked like I was doing well. Hopefully the progress continues. It's amazing how much it boosts the spirits to be able to drink something.

Paul

Paul:

Im glad that the yoo-hoo works for you. Thats one thing I drank throughout my treatments even with a sore mouth. Ive since moved up to chocolate milk which is thicker and more calories.

It sounds like you are making some amazing progress. With just finishing treatments last week, you must have alot of energy to be stacking wood. Be careful of exerting yourself too much. Right now your body needs extra calories and rest to heal from the ordeal of treatment. For me, I was in bed for 3 weeks after treatment and even ended up in the hospital.

Have you tried eating food? The easiest food for me was yogurt. Dannon banana is very creamy without the chunks most yogurts have.

Hi Christine,

I haven't attempted food yet. I am not able to drink large amounts by mouth yet. Usually about 2 ozs or so at a time, but at least it is a start. Still coughing up a thick and slight green mucous. Hoping that will go away soon. My throat is pretty sore, so being able to drink the Yoo-hoo cold feels good on it even for the few seconds that it is happening. The suprising thing is I can taste the chocolate, although I haven't had a Yoo-hoo in at least 20 years, so I am not sure if it tastes the same as I remember it. The most taste comes fromt he initial sip, I loose most of the taste after that. My mother-in-law picked me up a couple packs of Boost Plus, which I believe has 360 calories, so I have been putting 1 of those in my feeding tube each day, and along with the jevity it brings me to about 2100 calories per day, plus I take in at least another 20 ozs of fluids during the day--a few by mouth most by the peg tube.

My pain isn't too bad, but I am wearing two 25 mcg Fentanyl patches, althought I think when my wife changes them in a day or so, I will just have her put on one.

Paul

Paul,

Be careful when you ween yourself off of the pain meds. I stopped using them cold turkey and broke out into sweats and chills. I had to go back on them and I eventually went down to 12.5 fentanyl patches and gradually reduced my dose of Oxycodone. That seemed to work.

As far as attempting food, I started out having cream soups for lunch and pudding. It took a lot of practice swallowing to get those muscles working again. I eventually worked my way up to frozen dinners that had mashed potatoes and gravey.

Paul:

The patches need to be monitored by your doctor. It should be decreased very gradually. You feel ok now with using the two 25 patches. If you decrease to just one right now you may unfortunately feel pretty bad. Its the worst right when treatment ends.

Your calories are pretty good at 2100 per day. Even more would be good, right now your body is burning calories so fast trying to heal. My doc told be try for 2500-3000 calories per day so healing would be easier. Your liquid intake is very good.

Im glad the yoo-hoo works for you. That was one of the few things I could drink and taste throughout my treatments. Its as thin as water but has more calories and vitamins.

Have you tried any over the counter meds for your mucous? The peg tube sure comes in hand when its time to take yucky medicine!!!!

Paul,

Get more calories into your body right now. I was told and I did drink 3000 + cals a day post Tx and I know it helped my body recover quicker and better. Try the Carnation VHC with 560 cals in the same 8 ox can.

Re taste being stronger the first sip or mouthful. You will find that to be the case for many more months to come. It's as if your taste buds get overwhelmed after the first pass. Anyway that's a normal part of your recovery process so don't be discouraged if you continue to experience that for a long time.

Well I am going on 4 weeks now. Last Tuesday I met with my Dr. at Dana-Farber and he said I seemed to be healing well since my treatments. It was encouraging, as he seemed very positive about where I am at so soon after finishing my treatments.

I am still getting the majority of calories through my feeding tube, by pump at night. I have been able to drink Yoohoo, cocoa at room temp, was able to drink coffee at room temp--but it didn't taste good as it once did. Have been able to eat Jello as well, am considering trying some scrambled eggs tonight, hopefully I will be able to eat them.

Unfortunately, I still have very thick saliva, and over the past 4 days or so I have found it intolerable to swallow-as it makes me gag. I believe is due to the swelling in my throat and at the back of my mouth. Still have some green mucous, so I think I still haven't completely gotten over the cold I had.

I have been trying more foods, found fresh watermelon and cantaloupe burn my tongue a little, hoping to try some scrambled eggs tonight, and possibly some pancakes or french toast covered in syrup.

Paul

Paul,

Hang in there. You are on your way and the curve is mostly straight up now. Things will slowly improve. You will start to have a good day and then 2 bad days and slowly your good days will outnumber your bad days until the bad days disappear for good. Taste will improve; your dry mouth will improve; your weakness will improve and your mental outlook will improve. It just takes time but you made it so congrats.

Good job Paul.
I only put formula and water down my tube. Never saw the need to do anything else. I sipped water and some diet soda through my treatment. Anything with sugar caused a weird foaming saliva to form. Milk or any other drink was too think. I wasn't able to take more until a month after my treatment finished.

I'm now three months out and am taking the bulk of my meals orally. My throat still gets sore from eating so I use the tube every other day.