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PINO TEA - Gagging and eating difficulty

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

gagging
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I have just finished my 30 sessions (radiotherapy only) last Thursday. My problem all through this has been the taste of food/gagging. My throat is sore but not as bad as the horrible mucus in my mouth. Doctor said just to keep spitting it out. The salt/bi-carb (in warm water) does help slightly and I believe this can be a deterrant against Thrush. I can only manage about 500 calories a day by drinking one ensure and the odd bottle of Lucozade. The skin on my neck is quite sore with scabs but isn't unbearable. I have lost 16lbs and now weigh 124lbs so don't really want to lose much more. However, I have no desire to eat, and I know as soon as I try to eat the taste will just be the same yet. How long will it be before I can start to eat anything?
PT

Hi Pino,
Thought it best to start a new thread as there will be some good information for you.

The fact that you are still eating right through is pretty good already. Many of us were on PEGs for sometime during and after treatment. I had my PEG nearly 3 months post treatment and only took food through it till nearly 6 weeks out. Unfortunately with the food, you just have to force yourself and find the foods you can eat. You will find stuff you can taste though your taste is messed up right now, it should start to improve within a couple of weeks, but slowly.

You need to target 2000 Calories a day. If your weight drops too much, see you Doc and you may need help or a PEG.

I started back with eggs done like Junket, and soups, soups and more soups. Another good one is those baby cereals in the sachets, mainly fine oatmeal.Get one that has at least 200 Cals a serve. I took those with hot Rice Milk and you get about 400 cals each one (200 +200). I took L-Glutamine Powder in water to stop the terrible pain and burning in my mouth from most foods and liquids, and it also helps your mucosa heal.

About 3-4 weeks out I moved to soft vegetables and soft rice with more soups. I am 7 months out now and still have taste issues and struggle with my favorites namely Pasta. Its pretty much off the menu these day. I start the day with papaya or banana and cereal dosed with a Nutrition shake i get from Sunrider. Gives you loads of essential nutrients in one hit and Papaya is a great healing fruit. I have lots of salads with dressings or just plenty of cold pressed olive Oil and salt. Having a selection of foods to pick at is good i.e. in a chinese restaurant with a bunch of people.

Much of the difficulty now is related to the lack of saliva. It will get better Pino so don't worry about it but you still have a little way to go. The mucus will also subside and become a very minor annoyance within a month or so.

You will have to force yourself in a routine to eat even though you have low or non-existent appetite.

Keep up the fight and get nutrition however you can, whether it be with supplements, health shakes, and good raw foods or better - all of them.

Take care bud. You'll be OK.

Scambuster

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Lets see 5 th week out of radiation and still phleming every 5 minutes, I'm still waiting for the faucet to turn off, I'm sorry..I feel for ya, I'm there as well as others. The sore throat is bad enough, but at least when i get my pain pills down i can eat something beside soup, even though its like stretching my throat an hurting, the weight thing, i was lucky, i bit the bullet, by passed the tube, and struggled, i lost 40lbs, and have yet gained any of it back, i was told i would possible still lose more weight, At night when i lay on my left side, it does stop, but seems to thicken to where in the morning, i hack it out before i attempt to eat breakfast, I know we come here to relate our stories, and without hearing others, I would think I was the only problem child, this is a big pain in the you know what, and my heart goes out to everyone of you people here. A person that never will see the day of livng with this, will never know what pain a person goes threw, God Bless everone to stand tall, tell whats on your mind, and help each other emotionally. It's a daily struggle. I truly Hate cancer, and my mind has taken a total different look at everything in life. Dennis
I long for the day i can eat chocolate, and drink coffee, and have it not taste like you know what!!!!.....

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I know many people have made it through without a PEG, but it's stories like Pino Tea's that make me realize what a good idea the PEG is. I had the PEG, 30 rads like Pino, and still lost close to 40 pounds. I'm so glad my docs insisted that I get it before treatment and not after.
That said, Pino, I was able to get some protein and minimal calories by eating soft-boiled eggs. Cream of Wheat also went down well, though I think dairy maybe contributes to the phlegm.
I also found a very high-calorie powdered protein supplement at my local GNC store (I forget what it's called) that helped me put some pounds on.
Either way, hang in there. Things will get better.

--Jim in Delaware

CajunEagle
Posts: 353
Joined: Oct 2009

Hey Jim. After having this tube for 14 months, I get it removed this Friday. Are there any "surprises" about going through this procedure?? Is it the reverse process of when they put it in ??

Thanks,
Larry

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Got my PEG installed in Jan/09- 14 months for me, also. Heard they just yank it out and either let the body mend itself, or put-in a stitch. Larry and I probably got the same question, and concern- a PEG in place for as long as we've had our's- with our innards in place for so many months around the tube between the skin and stomach, it would seems it might not be as simple as everything collapsing shut in the space where the tube was, including the stomach wall after the button collapses with it's evacuation, and with the only Dr. advice being to not eat or drink anything for 4 hours. There's a freaking hole in my stomach that leads to a bored path out to my shirt! Any and all advice on the extraction of the PEG is welcome. Hope to get mine out in April- after my 4/8 Pet Scan, so this is an issue with me, now, too, Larry.

Scambuster- my PEG use was down to supplemental by a couple weeks after my last rad. Crawled, at first, with Ensure and a multi-vitamin, then slowly eased myself into pancakes and Ensure. Just takes time, and trial and error, to forge your path back to the eating thing. 16-months, Scam, and I had regained all the weight I lost before the end of the 12th month. Just takes time and a gradual return, Scambuster.

kcass

kcass

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Guys, we had a good thread late last year on the PEG removal.

Basically 2 options 1) Grit yer teeth and yank it out. Stings for a few minutes and then all is OK. 2) Go under with a GA or light Anaesthetic and they pull it out and usually treat you to a stitch or two.

Your stomach heals very fast apparently ... like in a few hours, hence the 4 hours no drink or food. Your external bits will take longer and they either tape it up or as said give you stitch. I had option two and have a very small scar. I gather from Jim and few others, no stitch may mean you have a bigger scar and in some - resembling a second navel.

While I will still tell my grandkids "that's where I got shot", my scar is now very small indeed so if your cosmetic side is of concern, ask for a stitch.

On my personal side i just counted back and I am only 5 1/2 months out from last Rads. I saw my ENT doc yesterday and he was very happy after a poke and prod with his mirrors, with the scar tissue from the left tonsil surgery. I was happy too.

I am holding off on seeing Chemical Ali as he will try and thrust a PET/CT on me (Every week if he had the chance) but i think I will wait till 6 months as I got an all clear in mid December and I am of the view that Scans are not that good for you. Trade off I know but I feel pretty confident I've smash this piece of trash of a cancer. I just finished my first bowl of Spaghetti with nice mushroom sauce. I thought Pasta was gone for ever as the dry mouth makes it tough. This hopefully means I am still getting better and better.

I also restarted some Acupuncture yesterday to try and reactivate the saliva after I had 2 treatments over Christmas. I think I am getting a tiny bit back but only if I keep my mouth shut and focus, I can wet my teeth. Being an Australian though, my mouth is rarely closed.

Did you hear the one about the Japanese Canon R&D people have invented a new SLR camera ? The shutter is so fast that it can photograph an Australian with his mouth closed ?? Boom Boom !

So guys - 'Congratulations' on getting your PEGs out and I don't really think you have much to worry about. I certainly don't miss mine.

Glad you have your weight back Kent. I am actually enjoying my new 75kgs (165LB). Same weight as when i was 34. I lost 44lbs. I looked pretty damn sick when I finished. I think my new healthy diet is also stopping much new weight gain. I have just bought a new bunch of clothes so if I regain weight now I will have go shopping 'again'.

Cheers
Scambuster

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

One good yank and the damn thing is out. It would take you longer to register for an internal nuclear medicine appointment and go through all that nonsense. Don't even need a doctor. Nurse just yanked mine out while I bit on a silver bullet and looked away. Really it hurts like crap for a second. Then the real pain begins as they should caterize the wound to get rid of that little flap of skin and bump that has formed around the tube. That will then fall off in a couple of days. The cauterization hurts more than the removal, take a pain pill along in your pocket. The wound closes almost immediately.

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Hey guys, don't sweat the PEG removal. After what you have just been through and finished this is nothing. I got myself more worked up than I needed to and in the end it was nothing. I had the "grit and pull" model. Same surgeon who put it in pulled it out. Few minutes in his office and done. He said it would sting for a bit and he didn't lie there. I layed down on the table, he asked if I was ready, put one hand on my belly and with the other firmly pulled it out. Did sting for a couple of minutes but it was out in 3 seconds. He held a gauze pad over it for a minute or so and then taped a pressure bandage over it. No eating for 4 hours. He said the stomach would close in about an hour and then it took a couple days for the skin to heal. Just a round red depression about the size of a pencil eraser now. Just for the record, 5 months post from 33 rads and 3 chemos's for BOT SCC with matastisis to one node. I have to say I feel great. I can eat anything I want, dry mouth diminishing and weight coming back. (20 lbs. of 35 gone) Still have the port and have to get it flushed every 4-6 weeks, appt. with surgeon tomorrow and 2nd PET next month. Take care all, get back to being you.

Mike

CajunEagle
Posts: 353
Joined: Oct 2009

Thanks guys. Sounds like it won't be too bad. I'll bring along a tongue depressor and bite down on it during the process. Might ask for a stitch or two for good measure. I sure will be glad to get rid of this thing.

Thanks alot for the feedback.

Larry

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

CajunEagle: I went for the just yank it option. As a matter of fact, I wasn't given a choice. Heck, it wasn't even a doc that did it. My radiation oncologist's nurse did it, and it didn't hurt a bit. (Warning: I have a high tolerance for pain, and some people on this board have said it hurt. Mine didn't.)
I was just a little peeved that I couldn't immediately go out for lunch afterward. I was only going to have some soup or something, but I had to wait a bunch of hours before I could have anything to eat.

-Jim in Delaware

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

it's tough. i still have my tube in and i am 10 months out of treatment. having a tough time swallowing and with food and beverages burning my mouth. i had two dilations after radiation and i need one more. i could not eat or drink for 5 months my mouth was so bad after radiation.

yesterday, i managed to eat something i consider substantial for the first time. i had 90% of a tortilla wrap. had tortilla shell, tbs cream cheese, slice of ham, and a tsp of cole slaw rolled up. closest thing to a sandwich or bread i have had in a year. i had one today too. :)

tomorrow i have to change my mickey button. has to be done every 3 months. hurts like he$# when they yank it out. i have been bleeding around it, i think they said they will perscribe me a steroid cream for it. i hate changing this thing, wish i could get rid of it. but i cannot eat enough calories by mouth yet. i gained almost two more pounds. i am just under 96lbs! yay. i want to be 120 to 125 again.

just have to keep trying to eat things pino tea. it is a harder road for some. wish this were something no one had to endure. but you have to think positive and keep trying different things. when i get frustrated i think back to the time i could not eat or drink anything. it is tough when you have no appetite and everything tastes awful. it will get better month by month.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I had mine in for more than four years. Actually, I had three of them over that stretch, and each of them FELL out, for those wondering how to remove them (I think it could be considered a sort of planned obsolence, for those not in a big hurry to lose the thing: they DO fall out!). Only this last time, nearly five weeks ago, did I decide to forego the obligatory trip to the ER for a temporary replacement (to keep the wound open) followed by a trip to see GI Joe for a new 'permanent' tube.

During that time I tried a lot of different things to eat orally, some with success, some without. Five weeks into this 'experiment', sweetblood, I can tell you that you should be cautious about removal of the tube as you do not want to remove it before its time. I would make sure that I could sustain myself reasonably without ANY tube intake before doing so.

What I have found is that dilations are helping a lot, but that for at least the first four weeks of this deal I lived in a state of perpetual hunger, it seems. And even now I am mildly dehydrated. In addition, I discovered a couple of days ago that I have lost about 15 pounds over this past four or five weeks.

Something to consider before we opt for removal, even if the tube seems to be a pain.

In any event, congratulations on the breakthrough! Others might have a hard time after awhile, perhaps, understanding our excitement at being able to eat something seemingly as mundane as a taco wrap, at gaining a couple of pounds -- but we get it.

Take care,

Joe

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

first, i have to say, i accidently clicked on your picture on that banner they put up, and ended up reading your blog, and got NO sleep last night!! you reall write well. great sense of humour. i read about yours falling out and i thought that was pretty scarey. i was whining about my tube a few months ago, and my ro was like, then take it out. huh? this was when i was 88lbs. i ma definitely going to wait to remove it when i can eat/drink 2400 cals a day by mouth. i am no where near that. thanks for the words of wisdom, i am with ya.

CajunEagle
Posts: 353
Joined: Oct 2009

Well, It's gone. Man, that was simple. Removal felt like somebody pinched me and stung for about 45 seconds. The doctor said I am to have no restrictions. I asked if he would tell my wife "no dishwashing for a month", but to no avail. So, we are going out for a good dinner tonight cause another element of this road is over with. I'll have the second 6 month Pet-Scan next Friday (26th).......and we'll go from there.

Thanks again Jim. (BTW...My son-in-law is a Blue Hen Grad. Darn good kid.)

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Told you it wouldn't be bad. Congratulations!
Hey, my wife and I both are UD grads.
Go Hens!

--Jim in Delaware

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