PEG site became incredibly sore over night, running a low grade fever, and I generally just have not felt well for several days. My mother spoke with my gastroenterologist today (I still have no voice so I have to text my Mom and she makes my phone calls lol)and the nutritionist is meeting me at my RO follow up tomorrow to look at the PEG. He told my Mother that if it is infected I should prob go ahead and pull it, that frightened me, I am still getting 90% of my nutrition through my PEG. So that makes me wonder am I progressing to slow?
Which brings me to my 2nd question. Is there anyway to increase my appetite? I have a few problems with eating, one is swallowing, sometimes it just doesn't go down wrong and ends up in my throat and I cough it up, that doesn't happen that often and it started happening after my surgery and I think its just because my throat was used to an over sized tonsil back there, now that its gone I am just having to figure out how to eat different. The other is a little pain with some food but its not bad. My main issue is I have no appetite, things sound good but as soon as I put them in my mouth I am not hungry and its all I can do to force a few bites down. Is this normal? Anything I can do to help it along? I haven't really forced myself to eat, it seems like such a hassle and I would just rather use the PEG which is very strange for someone like me who used to love food.
And is there any nutritional shakes I can start making to maybe help me get off the PEG? i went to the health store yesterday but the 2nd ingredient in all their meal replacement shakes was fructose, I am not crazy about that, I am not a diabetic but I have noticed anytime I drink these shakes with high sugar a few hours later I am shaky and irritable, I have been that way all my life and it happened with food when I ate. Does anyone know where I can go to maybe order some shake and protein powder online where I may be able to find some variety?

Thanks!

Hi RosyM,

Sore PEG site and a fever....Yes, it does sound as if the PEG may be infected. Can't hurt to do double duty cleaning with hydrogen peroxide and if it's not too painful, a flush or two as well. Good thing the docs are seeing you tomorrow.

As far as progressing too slow? You finished treatments two weeks ago. It took me close to four weeks to start eating again! No, if you're getting some food by mouth that's a good thing. When they did the tonsillectomy did they do biopsies too? The reason I ask is I have "divots" in the back of my throat from where they did biopsies (pretty big hunks of flesh too!) and food gets caught in them as they haven't filled in yet. It's "chew, chew, chew, chew, sip and swallow, sip and swallow" That could be a reason food is getting caught up in your throat.

Nutritional shakes definitely can help you shake the PEG. If you want to avoid the sugars, there are whey protein powders that are void of sweeteners. You can make your own meal replacement shakes. Protein powder, milk, fruit (vanilla ice cream) makes a pretty good shake. Just be sure to clear any supplements with your docs. My team was fine with me doing that. I order my supps from Nutrition Express www.nutritionexpress.com. They have a great variety at good prices and their service is excellent. I've been purchasing from them for over 10 years.

It's not unusual to have a lack of appetite. You're probably still on narcs right? They have a tendency to suppress appetite. Also, eating is different now. Something we did without really thinking has become in many cases a "job". You have to focus and concentrate as to chew enough and not choke. Taste or lack of is an issue too.

Hang in there! You're doing well with the eating. Hope that PEG issue is resolved quickly for you.

Positive thoughts and prayers

"T"

Hi Rosy:

Type Protein Shakes in the Search box (top right) and you will get a bunch of recipes from other members.

I also had problems with my feeding tube which ended up with a horrible pseudomonas infection. I was supposed to go to ER and have it replaced, but the spot where infection was (where it went into my stomach) was so sore, I wouldn't let the nurse replace it. Then had to cover it with gauze until it finally closed, plus take a bunch of antibiotics. I also depended on the tube for my feedings, so it was super hard to swallow anything but liquids. I found one drink that has 530 calories for a small box-type container. It has to be ordered but my local CVS Pharmacy got it for me the next day (by the carton). Later, I ordered from the Amazon link on OCF. It just comes in a vanilla flavor, and you may find it too sweet although there's no fructose in it. I just "chug-a-lug" it down just to get my calories. I, too, hated the taste of food and it was a chore just to try to eat, but since I didn't have the PEG tube, I had to force myself. I found watching TV while eating made me not "think" so much about getting the food down (baby bites). Everything had to have a sauce in order to be able to swallow. Believe it or not, today, after over 5 years, I still can eat only certain things, but that's just me, everyone's different. I do understand your feelings, and know that it can be done, so I wish you luck.

Julieann

Everything you describe sounds about right for where you are at right now. Sometimes lack of activity can contribute to loss of appetite but I suspect it is more indicative of feeling the effects of treatment. Keep eating no matter what. There are a couple drugs they can try but it is always good to try and reintroduce food to your body. Try and eat those things you like the most. Sometimes just cooking something can stimulate the appetite.

As far as shakes there are lots of choices. I make my own and then I now what goes into them.

Ed

As T mentioned, you're still early in the recovery stage, at two weeks or so. Radiation keeps working just as long as your radiation treatment last, and from the damage to the from the radiation and chemo, so you will still experience treatments symptoms. It also depends if you received radiation ipsilateral instead if bilaterally, If so, you will still have salivary function on the unradiated side,mind depends on the type of chemo, and Cisplatin and taxol are strong. The rope mucus starts to resolve around the 3rd week, tasting, eating around on the 3rd month, but other issue can take 12 months, or longer.

They may take the peg out to avoid sepsis, treat with bacterial or anti fungal meds, whichever type infection it is. They can put in a nasal tube if for short duration, usually less than 6 weeks, and then a G-tube, if needed.

As far as eating, taste, it takes time, but also what is preventing eating, swallowing and taste should be treated also. That goes from dry mouth, which involves taste, throat inflammation, mucocitus, pain, fungal, bacterial or viral infections, like thrush, nausea, vomiting, spicy and sharp textured foods, foods to hot, cold, otherwise it will delay your ability, need, and want to eat, and can be psychological too.

There are ways to increase your appetite, as Ed mentioned. Some medications are Marinol, Megace. Also caffeine, wine, melatonin, corticosteroid like decadron (prednisone) you had during treatment, amino acids, omega 3 fish oil, sugar increases appetite, so does fat, and that combination is best. Ever wonder why no one can stop eating kettle corn, candy, sugar and oil! So those canned protein drinks are good in some sense for now or add your own. Fat increases appetite, and eat most proteins that have higher fat, which also easier to swallow, even adding a health oil in a sprat mister, I have Misto brand, helps in swallowing, taste, and extra calories. Smelling food also increases saliva, and appetite. Seeing food, also increase saliva, hunger, and happens to me be just watching the food channel. Smelling lemons, citric candy, chewing gum increases saliva. After treatment, one should eat what they are accustomed to, so the memory helps. Nothing new or daring yet. I went to a buffet a few times it see what foods I liked, can eat, tolerate, all which I've eaten before, and doubt there are many oops I haven't. Some textures bothered me, like potatoes, bread. Cheap food, ones with too many chemicals, preservative just could not tolerate or want to.

Tasting also involves more than eating. It invokes all your senses from your memory just visualizing a favorite meal or how you remember it tasting, and do that when eating that food, seeing, food must be appealing, hearing the food cooking, smelling helps increase appetite, and how the food tastes,and involves smelling. From treatment it's rare for your sense of smell, unless receiving radiation further up in the head. Also to taste,myths 5 taste senses, salt, sweet, sour, bitter, umami. I still have a problem with salt, sweet, but manage somehow. Even the ambience, pleasantly of the room makes one want to eat. The nerve in the tongue, effected by radiation, which transmits taste receptors to the brain has to heal, and taste buds, which are killed off after than they can be replaced from the chemo and radiation.

From radiation and chemo, many have conditioned, and acquired food aversions by associated it with the ill feeling, metallic taste, from both, and connect it with the last meal they ate, and or from the nausea and vomiting. To help prevent this something strong candy is eaten to avert this is used, like a string candy before treatment.

ChristineB made a post with easy to eat foods, that is helpful, and other links if you go to search. Lastly, see a speech and swallow therapist.

I hope this helps, but probably forgot something

My concern is about your feeding tube being infected. Is the site red and inflamed? Try cleaning it real good with soap and water, rise it off and pat it dry then apply some antibiotic cream like bacitracin ointment and top it with a drain sponge. Do this at least once a day to ensure it is kept sure clean. Change the drain sponge if there is any blood or leaking formula on it. Did the doc put you on antibiotics? An infection at the peg site can lead to big problems if its not taken care of.

Some patients will drink boost or other over the counter nutritional supplement drinks instead of using a feeding tube. Since you just finished treatments it may be quite a major undertaking to drink 2500 calories and 48 oz of water daily. Try to use the peg tube or get the gastro doc to replace it. If you can not take in 2500 calories and 48 oz of water daily then you need something to help you. Maybe the peg tube could be replaced with a nasal tube for a couple weeks until you are able to do better with your swallowing.

Best wishes with everything!!!

edible marijuana products are known to increase appetite. brownies and other concentrated forms make it easy to get into your system. Not advised to smoke it now.

Marinol is a synthetic derivative of marihuana's actuve compound, THC, which needs a prescription, and is in pill form.

Here a few other key active chemicals in play. In fact the the CBa is a better indicator of efficacy toward stimulating appetite desire. The THC factors tend to indicate the type and intensity of the "high". Good MJ for cancer patients have lower thc and higher cba. Unless you want the free high ride. LOL

Details

THC1.16%

THCa17.72%

CBD0.00%

CBDa0.60%

CBN0.11%

Moisture6.42%

Thanks to all the replies. Special thanks to "T", what you said rang true and helped the most. I did not have any biopsy, the surgeon said there was nothing to biopsy, but what you are saying about the swallowing sounds exactly like what I am going thru. Also the comment about the narcs, I forgot that before my first surgery I lost some weight just because I was on narcs for the cancer pain and I had no appetite. I bought some protein powder, ice cream, fruit, whole milk today. I will try smoothies and shakes and start walking on my treadmill tomorrow. I will also check out the foods on that list Paul.

The nutritionist said it MAY be trying to get infected, the doc said no antibiotics and I was told to clean with hibiclens, keep dry, and half strength hydrogen peroxide twice a week and keep an eye on it. Very thank full they do not want to pull it, I have inserted many nasal tubes and it is not something I want to go thru, on top of that I am not sure how I could get to work and work with it in place. The nutritionist also told me what I am experiencing is not uncommon and assured me my desire for food would come back so I decided to try my best and stop stressing about it. I was very stressed about my progress and I am sure that wasn't helping with the appetite at all. My RO is really tough on me about eating and not loosing weight and had me upset about it. I have finally stopped loosing weight and I am sure the eating will come along soon. I think it is kind of funny how upset I used to get over not being able to loose weight and now I am twice as upset that I might loose more weight. I can still stand to loose 20-30 pounds but I know this is not the time to do it, the thing is I am not in any danger of being under weight.
Thanks again!

Here is the list of easy to eat foods. They are of a smoother and usually softer texture which hopefully will help you to eat.

Good luck!!!

Easy to eat foods list

Glad you are seeing someone but I would go t emerge - you do not want to have an infection and wait to have it treated it will only get worse! :)hugs!