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
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
Im not sure if I am understanding you correctly. Are you saying that when your mothers tube became displaced that it fell out and they attempted to put a Foley catheter in its place? A catheter is not even half the size a feeding tube is.
I still dont understand if there was a problem with her feeding tube and the formula not going into her stomach like it was supposed to that the doctor didnt order a J/G tube for her. Im not a doctor but have gone thru this and know how it should be handled.
Formulas can cause diarrhea. I went thru several different ones before I found one I could tolerate that didnt cause either diarrhea or me to be sick to my stomach with nausea and stomach cramps. There are hundreds on the market that she could be changed to. Since you said she can eat try giving her fiber to help stop the diarrhea. Add benefiber to her formula and also feed her things high in fiber like oatmeal. It really will help.
If she is able to eat then she should be encouraged to drink Ensure or Boost to build herself up. If she can take in at least 2500 calories daily by mouth then she wouldtnt need the tube at all. I would suggest getting at least 4 cans per day in her on top of what she is already taking in. The Carnation very High Calorie has been changed to something else. I will look for the thread and post a link for you. It can be ordered thru Amazon and will arrive within a few days. Try your very best to push to get her intake closer to 2500 calories per day every single day.
When I went thru everything I wasnt alone. Im a single mother. My kids were teenagers at the time. They tried but they didnt know what to do for me or how to take care of someone that was sick. I was their only parent so it was very scary for them to see me so sick. One of my worst days was when I was too weak to even walk into the hospital and my 17 year old son had to practically carry me to a wheel chair and push me into the hospital. My doc took one look at me and admitted me just by how bad I looked. All that was 5 years ago which now seems like a lifetime ago.
Best wishes to you and your mother. She is very lucky to have 3 caregivers!
Jane
Unfortunately, the standard procedure at most hospitals is to use a Foley catheter when a feeding tube falls out if it's an "emergency" , even though as Christine points out its diameter is too small for enteral feeding. While there is some tiny leakage from the stoma (hole in the stomach), it should be barely noticeable. Like Christine, my knowledge of feeding tubes was earned the hard way. The doctor's guess that the balloon and tube were defective is probably right. I had terrible problems with my balloons breaking or not fitting snugly.
If her doctor cannot get a properly fitting G or J/G tube in, ask him about parental infusion. In parenteral, or PN, nutrients are delivered intravenously and the GI tract is bypassed entirely. PN is given through a catheter which carries the liquid directly into the bloodstream, where it is absorbed by the body. Your doctor may know it by its the older terms TPN (total parenteral nutrition) or HA (hyperalimentation). This would let your mother avoid these stomach issues.
Sorry to hear about all this
Charm
Mom has been in the hsptl 8 days now...the infection's gone from her belly--that cleared up quickly...she had no food by mouth & has been on IV's...a port was put in on Wed because her veins were wearing out. She mostly just sleeps now...she is able with effort to be helped to the bathroom and back to bed. She's very short of breath because she can't breathe thru her nose...her cheek--the sinus area stays a "hot pink" color on the skin. She has no pain in her mouth or face....so I think maybe this is one gift that God has given to her. A Dr told her to set a "goal"..he was very kind and compasionate...and I think she has set her goal to "get this over with"....She's in a "swing bed" at the hospital..this allows her to stay longer...the tube feedings started back up yesterday--only 1/2 a can & 2 feedings...they've stayed in her...so each day a little more will be added. The Erbitux was the probable cause for the diarhea. Things do have seem to have physically calmed down for her...of course the HPV continues to have it's way with her. She doesn't want the GJ tube...so praying the tube/balloon she has will work better this go round. So glad for the help and info & support here...I still feel very inadequate tho in helping her thru this but I am doing my best.
Being a caregiver is a very difficult task! You are doing a good job so dont sell yourself short. Think of everything you have learned and been able to help her with since you found this site. Your mother is lucky you are in her corner. So glad she is doing a little better! The J/G tube is not a big deal at all, its just a different version of the regular feeding tube.
Jane - you are doing a great job. Being a caregiver is one of those learn-on-the-job things. You learn as you go and believe me you will get the very best help here with all kinds of experienced advice and suggestions. Just keep on going one day at a time - or moment to moment if need be. When I became a CG to my son, I was a basket case of emotions and without everyone's help here at OCF, I don't know what would have happened to us. You are in a good place for lots of support.
My sisters and I have learned a lot....I am so very grateful to have found this site and the wonderful people in here...We had to place mom in a nursing facility after 3 wks in the hsptl...so very weak...she runs fever at evening/nite time despite being on antibiotics...seems to be subsiding now tho..it's been a few evenings of no fever. She mostly sleeps now...feeding issues finally straightened out..so again being tube fed. We have Hospice now with us...each day still has it's "surprises"...Many thanks to all of you who have helped me help my mom & sisters on this journey. I pray for all of you every day. Jane
Hang in there, it isn't easy being a caregiver but I know you couldn't imagine being anywhere else. Hospice is a godsend, I hope they are able to help you keep your mom comfortable.
Jane: although I'm registered here as an OC patient, I have also been on the other side of cancer 3 times since 2007. In July 2007, I lost my little sister to breast cancer; lost my Dad to bladder cancer in May, 2009; and my bro-in-law to pancreatic cancer in April, 2010. Hospice was truly angels. I will forever donate to Community Hospice.
They are there to aid the patient AND the caregivers/family. It is certainly a hard time, but it is one you will cherish forever. Being there to assist your loved one onto the next step in life's journey. Being with my sister up to the very end, holding her hand, changed who I am as a person.
Being on the caregiver side, my own diagnoses was excruciating for me - knowing how it would be for my family. I was so angry we had to hear that word again! And so soon.
And so upset that my daughters, my sister, and my mom, etc., had to watch another family member go thru this.
But we are lucky. On both sides. Patient and caregiver. What could be better than leaving this world surrounded by your most loved people. And, though heart wrenching, you will be so glad to have been there. And I can't say enough wonderful things about Hospice.
Let me know if I can help/advise/support you as you go thru this with your mother and family.
-Wendy
Thank you all, and Wendy I do remember from your posts all you have been thru...this stuff is just crazy & no matter what you learn about OC..seems more times than not...there is no rhyme or reason for it. Cannot understand how HPV hit my mom..makes no sense at all. She says she has no pain...but her mouth, lips, sinus's...her face...is awful to see...she doesn't know her looks because she's lost her eyesight to macular degeneration & the Erbitux. It's gone wild in her mouth...can barely sip water, but doing the tube feedings. Asking God to be gentle & to please hurry. Perhaps if she had not been so old treatments may have gone better, who knows. God bless & keep each one of you.
Mom died Fri nite..8/24...us 4 kids were with her. We have asked that donations be made to OCF...So many thanks to all of you who participate, inform,support all who come here. I cannot thank you enough...and I continue to keep all who participate here in my prayers....thank you from the bottom of my heart. Jane
So sorry for your loss Jane. I pray that you and your siblings can be at peace now, knowing she is not suffering anymore. She sounds as if she was an awesome warrior and a wonderful mom.
Blessings,
Kathy
Hi Jane
so sorry for your loss. Mom is smiling down on you now from a much better place, and of course no longer in any pain. You were a loving caregiver and I hope that your memories will help to comfort you and your family.
I am so very sorry to hear of your Mom's passing. No matter how prepared we think we are, we soon find out that we were no where ready to release a loved one. My condolences to all of your wonderful family. Hugs
Donna
Jane I am so very sorry to read of your loss. You were a great help to your mother and Im sure you provided much comfort to her along the way. Im sure that by you coming here it greatly helped both you and your mother. Thank you for remembering OCF as a non-profit charity and giving donations. That is a very kind way to give back and help other oral cancer patients and caregivers.
I hope you will remember the happier, healthier times and take comfort in those memories. May your mother rest in peace.
(((HUGS)))
I'm so sorry to hear of the loss of your mom
I just lost mine 4 months ago, I know how hard it is. I'm so glad you and your siblings were with her. She was surrounded by all the love in the world, and that is a priceless gift.
Thinking of you and your family in this tough time.
(((((Thank you friends)))) I have a lot of blessings I am so very grateful for...and I will continue to stay connected to this site and especially to this cause. Oral cancer knows NO bounderies...it is an insidiouse and cruel disease. And you that know first hand the courage it takes to fight this disease are the most amazing people I have ever had contact with and I continue to keep you all close to my heart and prayers. (I'm not sure where this post should be placed...so ((Christine)))! feel free to put it where it belongs.
