Mom was to start IMRT Tues..Tmrw-Mon,was to be a trial run..with the mask & a check that everything was on point. Sat nite she started having stomach pain, didn't tell us. This morning went to feed her...terrible pain & was still in bed. Got her to the hsptl & ER Dr couldn't understand the term of "Muscle Pain"...she got angry with him & he finally ordered a CT scan...sure enough..she was right, the PEG tube had dislocated itself. We have a different oncologist who has cancelled the Erbitux..it was doing nothing. And then saw a radiologist & seems that the radiation is a "must" for her. She commented she can't believe how fast the papilloma has spread in her mouth. She had a hole in her palate..the tumor now in her sinus cavity. Now..I guess the HPV has grown so much it's "closed" the palate hole. She can take fluids by mouth since the PEG tube is not functioning. Everyday is something new--something different. So tomorrow we cancel the radiation setup & see the surgeon. He wants to wait a couple of days to operate since the detachment site appears "angry". Feel sure radiation Dr won't start things now. Each day is different, so full of uncertainty...for a step forward it seems like two back. I come her almost everyday to learn more from all of you...Thanks SO much for being here......Jane

The best advice anyone can give is to get to a Comprehensive Cancer Center in your area immediately. It seems like your team either doesn't know what they are doing or really aren't all on the same page which they'll need to be in order to get her through this.

Keep your chin up Schue

Having a feeding tube become displaced is unfortunately not that unusual. Its happened to me and the pain is horrendous! Thats how I ended up with a J/G tube so the G side could filter out any fluids that went into my abdomen. My PEG tube had become embedded in the wall of my abdomen and whenever they tried a feeding or medications it hurt cuz they were forcing it into the wrong place. Never forget the stupid student nurse who had a full syringe saying its only a tiny bit to put in there and she had to do it. I yelled at her to not even try it, go away and not come back.

I would think in her medical condition this would be something they would take care of immediately. Since she cant take in anything by mouth this is mandatory! By postponing the radiation one day it wont change anything. My concern is that for one day she is not taking in anything at all, no nutrition. She should be on an IV so she wont get dehydrated.

Speak up and be her advocate! She really needs someone to be the sqeaky wheel so she gets better care.

What a nightmare. As Christine noted,a PEG tube being displaced and/or embedded is all too common. Most hospitals have a "Patient Advocate"'s office or something similar. No matter how forceful an advocate you are, these bureaucracies are difficult to deal with unless you can get someone inside the power structure on your side. Even I have had to resort to using the Patient Advocate's office despite going to a CCC over PEG tube issues. The staff in the Ombudsmen or patient advocate or whatever the title are good listeners and know where to complain to get results.
Charm

Thank you all for your input...each day is a new challenge of some sort. Dr pulled out her tube..says Fri will put in a new one. Says it's infected! NOOOO clue how as we have followed instructions to a T...clean hands, clean equipment...Just don't understand. The palate has "closed" full of the HPV I presume. So she is putting in as much water as she can stand..& 6 Ensure's a day. Also on an antibiotic. We have changed Drs in her cancer care & yes...they are on the same page...we had problems with the oncologist....since mom didn't do the radiation he seemed to be busy w/others...so, we found new Drs & closer to home...and at another cancer center. I thank GOD that you folks are here...that there is somewhere to turn to get good info. We are in a small town & there is no cancer support here. And truely..unless its breast or prostate cancer oral cancer isn't even heard of....small town...I couldn't name another person with it....and my mom, like many many others in here...seems like one of the most unlikely persons to be dealing with it! Prayers with all of you.......Jane

Your post caught my eye when you said you didnt know another person in your whole area that had oral cancer. You also mentioned the new doc was closer to home. Im concerned that these physicians do not have the experience a large cancer center would have with treating many oral cancer patients. There really is a very big difference in being seen at a NCI top rated cancer center vs a small town hospital. Im not saying there arent top notch doctors in small towns. Im saying at a NCI rated cancer center, they treat many oral cancer patients so they are more familiar with current methods and guidelines.

NCI Cancer Centers

What Christine said

Mom had trouble w/her PEG tube....put in a Foley catheter...& that did not work...now a larger diam tube was put in & everything seems much better. If this didn't work Dr wanted to put in the GJ tube...but I don't think we'll have to do this...It was good to read from you that have had this type as to what to expect, so we know what to ask. (Her PEG tube displaced itself....she has a terrible infection between the stomach & the wall of the stomach...almost 4inches in width...we couldnt discern if it was infection, formula, both....but this 3rd tube and a day at the hsptl getting IV fluids seem to have put mom back on top of things & in more control. What an experience....and to see how quickly dehydration/malnutrition can set in) Jane

Im so glad your mother is feeling a little better. Im unsure what a Foley catheter has to do with a new PEG tube. Your mother should have been given a J/G tube. If formula was given to her when the peg tube was dislodged then the J/G tube would be used to get the formula out of where it doesnt belong. Your mother should have what looks kinda like a colostomty bag attached to the "G" side of the J/G tube. That is the marked 'gastric' on the J/G tube. This bag will suck all the bad fluid out from where it doesnt belong. They cant just leave it there, it needs to be removed.

You may not think I know what Im talking about since I am not a medical professional. This topic is one I am very familiar with, it happened to me and I was in agony. I knew something was wrong, I was getting so annoyed that the nurses wouldnt listen to me. I finally said "I am NOT like other patients you have, I actually do know quite alot about my medical condition and this is NOT normal so I want tests done NOW!" I told them I wanted an MRI and a CT scan which they actually did and found I was right. They could see the PEG tube had become embedded in my abdominal wall and when they tried to put formula in it would go where it wasnt supposed to go.

Having a J/G tube, it wears out rather quickly and I end up getting it replaced about every other month. This is done on an outpatient basis in the radiology dept. I am awake while the doc does this minor surgery. He will use dye to see where the tube is and make sure its placed correctly. I cant count the number of times I have had this done, its not a big deal to me anymore.

Its not easy being a caregiver and have your mother in the hospital. Sometimes the staff is not as prompt and on the ball as they should be. All too often Ive seen too many caregivers end up staying almost round the clock with the patient so they can advocate for them. Im concerned about your mothers intake. Now that she finally has a feeding tube have they set her up with a feeding pump? This should be running 24 hours a day while she is in there. She needs to be built up before beginning chemo/rads. What troubles me about her situation is the delay to get the feeding tube situation taken care of. That should have been fixed immediately and she should have the J/G type so any 'lost' fluids can be removed from her abdomen. It should not have taken days for them to finally get her set up with enough fluids so she isnt dehydrated. A cancer center would have much more experience handling situations like what your mother has been thru. It just seems like this place bungles things a little too much for the patients well being.

Best wishes with everything!

I dint use the right terms...OK, mom's tube became displaced..a Foley catheter was put in...that didn't work--tube is very small & a balloon is in her belly to block the hole so food doesn't come out. The ballon deflated...so, the ballon was filled again & a larger feeding tube was put in...fed her last week, 1/2 the feeding & waited 30 min..fed her the rest & rinsed tube. She's to lay on her right side now w/head elevated...thought it was all good...she stayed put for a while & I left...my sister came back for the next feeding...it had partially leaked...she gave mom the feeding & that stayed in....then late at night she got up w/terrible diahrea...and the feeding came out earlier that night, but she didn't call us. Next morning..took her back to the hospital & they admitted her...dehydration and the diahrea. Her fluid can cause that...but a couple of days later the hsptlist says no...it's the Erbitux..for 8 wks no side effects like that from the chemo...so was it the Jevity or the Erbitux. So much bloodwork has been done, waiting for the results. And still leakage around the tube. Anything in by mouth or tube, comes out. She CAN eat by mouth...the HPV has gone wild in her mouth..Erbitux did nothing....she wants NO more tube feedings or tube...wants her stomach then her belly sewed shut. The are of infection did clear up. I thinks God's making decisions for us that we couldn't or didn't know ho to make. Her mouth does not hurt....she's just so very tired & fragile. And disgusted with the tube that doesn't function. Dr felt it was a faulty ballon....he has never had the kind of problems mom's dealing with. He said it is so rare....He's not a really young person or inexperienced...so not a lot of answers. It is truly one day at a time...and even then....things can change. And Christine, don't know how you dealt with your deal w/ no caregiver....there are 3 of us...and all on the same page! God help all of us......Jane