Hi everyone, my name is Mike and I am into my 4th week of chemo (cisplatin)and radition treatment for base of tongue cancer. So far I've been doing this living on my own, with some help from friends and family. The treatment im getting is 3 chemo infusions with radiation 5 days a week. First 2 weeks of chemo was bad...Very nausius..threw my guts up. some ajustments to meds help a bit. Radiation was no problem. Now here's where it gets good,UGH. I took the advice of the docs and had a peg tube put in. Thur. 11/15 couldn't eat of drink from midnite for tube placement the next day. after the procedure and just before they were going to release me they discovered that they forgot the put the outside flange on the tube. By that time stomach fluid was all over the place. Doc finished the job (no anesthesia at this point) I was in terrible pain the next day. Sat. Doc said come in to make adjustments to it. he told me not to eat or drink for another day and then liquid diet after that. Then Mon 11/19 had my 2nd dose of chemo. This time doc gave me Zyprexa for nausia for three days after chemo. It seemed to work, but after that, by thur nite I started to get very sick again, couldnt hold anything down. Called Doc Sat morning and was told to go to ER. They admitted me for dehydration. Was released today 11/27 and they told me the tube was ok. After 2 1/2 week the tube still leaks around the gause and cannot even sleep on my side because it hurts. Was told leakage was normal !?!? Does this sound right to those or you who went threw this. Any opinions are appreciated. Sorry for being long winded.

Hi Mike,and welcome.

It's been 7 years since my husband had rad & chemo and the peg tube, but I don't remember his ever leaking except when I left the little close thing open and I know his never hurt. Uncomfortable at times yes but never pain. There are many on here with lots of peg tube experience. Just be patient they will come along and post.

Good Luck

Mike, welcome to OCF! So sorry you have gone thru so much with the tube! They can be uncomfortable and inconvenient but also they are a very helpful tube when used properly.

Yes, some leakage is very common. Ive used a tube both regular peg tube and a J/G tube for the most part of 5 years. I was only free from it for about 6 months between one of my recurrences. Do you use a feeding pump? If so you must sleep propped up on a few pillows while it runs. Some patients find sleeping in a recliner during their feedings easier. If you dont have a pump ask for a prescription for one. You can get that along with your supplies at a medical supply company.

Do you use whats called a drain sponge? This is a 4" x 4" piece of multi layer gauze which has a slit in it so it will be able to be placed around the base of the feeding tube. I use one of these all the time and change it daily when I take my morning shower. I also use a tiny bit of silver sulfadine cream around the site to help avoid granulation.

As far as your pain level goes it should ease in a couple days. If its been a few days (3+ ) and you still are in significant pain then you need to go back to the gastro doc right away. After what you went thru with the tube I would expect you to be in some discomfort and yes its possible for this to be hurting. But there shouldnt be a reason you cant sleep due to too much pain. This is NOT helpful at all to have a patient in that much pain. There is a very small chance the tube could have gotten dislodged. Ive gone thru this and was in excruciating pain. Mine became embedded in my abdominal wall due to an over zealous doctor examining my stomach by pushing hard on my stomach.

If you are not able to take in a minimum of 48 oz of water every single day you can ask for hydration at the chemo lab. This will help you to avoid hospitalization for dehydration. It takes a doctors prescription to get hydrated.

Best wishes!!!!

Hi there and welcome... Christine has answered the peg question so I will pass a little extra information onto you. Radiation the first few weeks is usually okay... thank god - its cumulative though so as the weeks pass it gets worse and more painful. At the end of your sessions, you will likely be fatigued and sore and have a few other things going on. It will likely be worse the two weeks following treatment. then slowly (and I mean VERY SLOWLY) you will start to crawl out of that hole. Your taste will be affected, and you will definitely have difficulty swallowing... please continue to swallow throughout even if it's just small sips of fluid, and food. This is to prevent permanent loss of swallow. I ended up not being able to use my peg at all and had to suck up the pain and chug my nutrition ( ensure etc...) through the entire treatment. Also if you haven't been told to get a bottle of water mix it with 1 spoon of baking soda, and one spoon of salt and mix. This mix you can use to rinse your mouth and it helps heal. Carry it with you at all times if you can. Do not drink it though. If you want to drink something the equivalent to that mixture (as recommended by my hospital) is flattened club soda... luke warm this you can drink and it soothes your throat as well.

After chemo you should generally go home with three or 4 meds. They may have to tweek the dosages. Three are usually done within the first three days then you will have one for breakthrough nausea... It's unfortunate about the peg. Knowing you are in the middle of treatment and need all the fluids and nutrition you can get I am suprised they let you go so long without... particularly since were vomiting.

That's in the past now though. If you do continue to have issues witht the peg I would have the placement checked.

Where are you being treated?

Best of luck... going it alone is hard. You may need more help towards the end. Hugs... it's a long haul but it's doable. Just requires some majoy hootspa!
take care.

Hi Mike. I had a lot of pain for the first few days after the tube was put in, which I wasn't expecting. It did ease off though. I had a bit of leakage, and used the 4" x 4" piece of multi layer gauze mentioned by Christine. Do keep on getting it checked though just incase an infection develops. Especially as it sounds like they made a bit of a mess of putting it in!

I can't imagine what it must be like to go through this on your own. I was so lucky to have a great partner helping me though it. Please make good use of this forum to help you through it. Oh and please add a signature so we can see at a glance what is going on with you. It saves having to repeat it! Best wishes for the rest of your treatment. Sally

Thank you all so much for your responses. First I'd like to ask, what is a signature? I'm not too familiar with these sites. I�m doing pretty good today. My rad doc looked at me today and said he�s amazed at how well my throat and mouth are. He said typically it should be MUCH worse. He also felt around my neck and said I�m responding very well to the treatment. I asked if I was getting enough radiation and he said yes, it�s a standard dose for my condition. So that good news was refreshing! As far as the mouth rinse goes, I do rinse with a Rx rinse (I won�t mention the name if that�s against the board rules) and regular water. the saliva that I�m producing is HORRIBLE! If I don�t spit it out (especially after sleeping through the night) I vomit it up, which doesn�t help the throat or peg tube. I stopped eating solid food because its so nauseating it makes me gag, so Im trying to get at least 6 ensure by mouth and tube. The doc said I can use that salt/baking soda mix but I forgot the recipe for that. What is it, 1 tsp salt, 1 tsp baking soda, in 1 qt of water? I really work hard to keep my mouth clear, I cant stand that saliva. I HOPE it goes away after treatment. My chemo doc prescribed some type of psychotic medication that�s been known to reduce nausea, and its seems to be helping. I don�t care what I take as long as it works. I would mention the drugs I�m taking, but I don�t think that�s allowed on this board. If someone can tell me what a signature is, and how to post it, I�ll try to don�t that. At any rate, I�m not the greatest typist, and have only so much �good� time to get things done around the house, if you don�t here from me too much its not because Im not interested. Thanks again for all your help!

Here is a link that will explain the signature.
Forum Etiquette Post

2 tsp baking soda
16 oz warm water
2 tsp salt

If it burns too much cut the salt to 1 tsp. You can omit the salt if you have to but salt will greatly help so try to leave it in there even if its only the 1 tsp.

The baking/salt water ratio is correct. For Mucus, try using a humidifier at night, sleeping in an incline to prevent mucus, fluids from coming up. Seltzer or soda helps cut the mucus, as does papaya or pineapple juice to rinse with. I even heard of some using meat tenderizer, Adolf's Brand, to cut the mucus, but if mouth sores bother the you, maybe not with the salt. Mucinex, and robitussim helps mucus too. I had a mouth suction machine in the hospital, and medicated yellow or green oral sponges on sticks to clean out the mouth that I found helpful in hard to reach places. You can get the sponges OTC, but suction machine needs a precription, and get from a durable medical supplier. Otherwise, Keep hydrated, brush, rinse mouth often.

I know how it is being in your own, and going to all treatments, diagnosis, tests by yourself, is not easy. Best of luck.

Dear Mike,

Various posters have mentioned using flat club soda. You can swallow it and may help your throat. I have checked with both our RO and the nurses, and they all said club soda works exactly the same as the baking soda mixture. If you are on your own, it may make things a bit simpler for you.

Mike

I found using the single cans of Seltzer water worked the best to cut thru the thick saliva and phlegm. I used it as a rinse and spit and the tiny bubbles really scoured my mouth. I can see why Gloria mentioned flat Club soda as an alternative to mixing up baking soda since unlike Seltzer water, club soda has Sodium bicarbonate (baking soda), sodium chloride, sodium phosphate and sodium citrate added already although some brands of club soda use potassium bicarbonate.

I'm concerned about the "leakage" of the Peg tube. While I know that many doctors say that's normal, in reality a properly fitted PEG should have very little "leakage", although a little ring of formula can pool around it. The usual reason for excessive leakage is that the doctor put in a PEG tube too small for the stoma or opening. Take a look at your PEG, it will have some numbers on it telling you what "French" size it is. a 14FR is standard, a 12FR is probably too small. I have a 16FR which has worked well. It never hurts to ask your doctor about these things.
Hang in there
Charm