CancerCompass message board discussion started by winicki846233 on 5/23/2008 http://www.cancercompass.com/message-board/message/all,24324,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was diagnosed with SCC that was located in his right tonsil. They put in his PEG about a week ago, and after several days of no eating (because of the removal of the tonsil), his doctor told him to use the PEG when needed. It hasn't appeared to be very easy for him. Anyone have any pointers of how to use and live with this thing? My husband is only 45, and we have two very small children. So any advice would be greatly appreciated!! winicki846233 Fri, 23 May 2008 00:00:00 GMT Hello Winicki,          I'm not sure as to exactly what you would like to know, so I'll explain what I did when I was sent home after my surgery. I had 1/3 of the base of my tongue removed, a tracheotomy plus the PEG tube.          When I got home, I had a rack that had a bag which feed a can of Nutrin 1.5 into my PEG tube, which in turn took roughly 1 and a half hours to feed into my stomach. I needed roughly 8 cans a day which I figured would mean I would be sitting in a chair for 12 hours. Not going to happen in my opinion. I was given 2 syringes to flush the PEG tube after using the cans or to hydrate myself with water.          What I did was,  use the gravity method of feeding myself with the syringe. I put the syringe ( with the plunger removed )  into the PEG tube and elevated it enough to be above the tube and would pour the Nutrin slowly into the syringe, . I paced it so the I could do one can every 10 minutes. 2 per feeding was good for me. Then I could go about other things. If he goes too fast, it might upset his stomach. I made sure everything that went into my stomach was at room temperature.          As far as making sure the PEG tube stayed in place when it wasn't in use, I taped it to my chest. I shaved a good area around the PEG tube so that I wouldn't be pulling hair out each time I needed to use it. Keep the area around the PEG clean, clean at least twice a day. The cap on the end popped open once after a feeding and I lost some Nutrin. So after that, I would bend the tube at the end and wrap a rubber band around it so that even if the cap popped open again, it was kinked and I wouldn't leak out. The Doctor liked that idea.          I hope this is of some help, if not, please ask what you want to know, there are allot of knowledgeable people here to help with questions,  they have been down this road already.         My Best to everyone here Pop-Pop Fri, 23 May 2008 00:00:00 GMT My husband is 40 with 4 small children and had a PEG put in 2 and a half weeks ago. Other than the pain at the site it has been wonderful as he has not been able to consume any food by mouth since his surgery on 5/6. I do all of his feedings as he can't seem to grasp the idea of feeding himself through a tube. I completely understand how he feels as we were both cooks in the restaurant business at one point and time. He was diagnosed on March  17 2008 with Squamous Cell Carcinoma and they found the primary in the right tonsil and that was removed on the 18 of March and then it had spread to several of the lympnodes and was at a stage 4. He then had a neck dissection on the 6 of May and had 7 teeth extracted today. He recieved 2 weeks of treatments of chemo and radiation before surgery as well as radiation during surgery. The radiation killed all of hid taste buds and he has not been able to consume much by mouth. The PEG is a way for him to get his nutrition and have energy to function and with three small children living with us he needs all he can. Feel free to email me with any questions at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- HeatherA4 Fri, 23 May 2008 00:00:00 GMT I used the syringes like Pop-pop did. I had problems "eating" that way too, I couldnt do more than a can and a half, though. My tube made me feel like I was full all the time, it was a real struggle ot take nourishment through it.The hospital staff gave me an elastic and velcro "cummerbund" that I used to contain my tube when I wasnt using it...worked better than tape and I didnt have to shave my belly. See if you cant get one through your local pharmacy.Other than keeping the insertion site clean and dry and flushing the tube regularly, I cant think of anything elsa to pass along.Best wishes to you both.Mike micromisterphone Fri, 23 May 2008 00:00:00 GMT You have gotten some great advice from experienced people, but you and your husband should have been taught by hospital personel how to use the tube. There should have been Q&A plus demonstration and return demonstration. Typically the an ostomy nurse and or dietician do the teaching. It sounds like you guys feel through the cracks---shame on them! Call your doctor and complain!!DeniseB DeniseB Fri, 23 May 2008 00:00:00 GMT I have had a PEG tube in for 5 months now, and got used to it fairly quickly. It is kind of weird, though. I try to get 3 cans in during the day (room temp.), but like Mike, I felt full and bloated for some reason, so my surgeon arranged for a pump machine so I could get 3 more cans in overnight. So far that has worked out beautifully. I clean around the area religiously with hydrogen peroxide and then fit a slitted gauze pad around it secured with tape. I bought a pill crusher so my meds, mixed with a little water, go in there too. You must remember to flush with water before and after each feeding. Other than that, it just takes getting used to, but a lifesaver for those of us whose throat is too sore/swollen to swallow properly.    Best Wishes, Becky   wordweasel Sat, 24 May 2008 00:00:00 GMT we just got this cleaning tip from the nurse at radiation last week...my s.o. has sensitive skin and always had heat rash under the plastic disk that is close to the skin.  he was told to clean the area with maalox then apply a thin coating of the maalox and allow to dry completely- preferably in front of a fan.  the maalox provides a protective coating between the skin and the plastic...it did the trick!he also felt way too full from the nutrin..he cant do more than one can at a time but he also adds a cup of gatorade to every feeding to keep his electrolytes up and add a few extra calories without feeling bloated.~meesh meesh Sat, 24 May 2008 00:00:00 GMT I have had the peg from the beginning 4/14 did not need it till 3rd week when taste and appetite where gone i do not know if i feel full or just do not feel hungry with regards to food. I have no appetite at all and this is very frustrating to me. I lived to EAT now it is a drag and I just try to do it to survive. I thought after treatments where over that the PEG would go quick does not look that way now eating is HARD!! PEG:i too use the gravity method which works well I use the Jevity 1.2 and try to put in 6 cans a day to supplement the little food that I can take through the mouth.I wear a tee shirt now everyday and use a ladies hair clip to hold the peg tube to the shirt works very well and allows all the skin to breath.i have ganuliation around the Peg site and the skin is very sore and bleeds a little I clean it with peroxide and put neosporian on it and the gauze. I feel I caused this problem because I did not stay up on my cleanings!!!  mtkjohn1 Sat, 24 May 2008 00:00:00 GMT I use the gravity method, like Pop-Pop.  I'd lay back on the couch and just pour it in.  I'd do two cans of 1.5 followed by two cups of water.  The whole process didn't take more than 5 minutes. I never felt full or bloated.  I'd do this four times a day.When I was at home, I too used a "chip clip" and clipped the tube a tee shirt. When I went out, I'd wear a lanyard.  I fastened a rubber band to the end of it, then attached it to the end of the tube.  This held it in place and the rubber band let it give some if I accidentally pulled on it.  At first it's a real pain, but after a few days, using the PEG and dealing with it becomes second nature.  Sure, you'll get sick of it and want it out as soon as you can, but overall it's really not that bad.Tom  ThreePutt Sat, 24 May 2008 00:00:00 GMT My husband 50 – also with a young child –had the peg tube for throat / node cancer about a year ago all through his treatment.  First, I have to say that the PEG tube, and my hubbie’s hydration, nutrition and ability to make it through an intense treatment was never compromised, so we considered it a life saver, literally.  I will also note that my hubbie was so healthy when diagnosed – strong, in shape, good weight, athletic, etc., that he was told by almost every doc he saw that the chance of him have cancer was less than 1 %. When dx he was stage 3 b / 4.  He experienced trouble form the peg immediately. We were putting the liquid in to fast – we moved to gravity feed, too, but what really helped him was a hospital grade feeding pump, which we rented through the infusion center / oncology. No matter how much gravity feed we got done, it was never enough, so we’d pour three cans of nutrin with a cup of water into the bag / machine and it would pump over 10 hours while he slept at night. This was a lifesaver for us.  Other tips –  Get glutimine for your hubbie.Make sure the site is always clean – my hubbie used hydradenperoxide (sp!)We always covered the site w/ a bandage before going in for long chemo session due to staff and other nasty things that seems to live in hospital settings. Flush the tube with water after each feeding. Hope this helps – Julie21 Sat, 24 May 2008 00:00:00 GMT Using the EnteralLife Infinity pump on a stand for the past 5 months with Jevity as the nutrition supplement. Use it at about 7pm each evening running overnight and finishing up around 6am. Depends on the flow you set-but overnight works good. Just remember to have your husband/so stay reclined at least 30 degrees as not to aspirate. The PEG tube continues to be a lifesaver. Could not have managed without it! psiplex Sat, 24 May 2008 00:00:00 GMT Ps - we were totally in concert w/ wordweasel on the pill crushing via tube - just check on liquid meds and ibprofrin, as some meds shouldn't be ingested so quickly  / directly to stomach - I almost made the error of giving liquid morphine thru the tube - duh! Julie21 Sat, 24 May 2008 00:00:00 GMT Forgot to mention the settings on the overnight pump, like someone else posted. I set it at between 80 and 85, pour in 3 cans of Ensure or a similar store-brand (cheaper!) and it goes for about 8 or 9 hours. Also I put liquid ibuprofen right into the syringe and never had any problems. It's more effective by itself than when you add it in with your feeding. I just flush with water afterward to make sure all of it got in.  Becky   wordweasel Sat, 24 May 2008 00:00:00 GMT My husband had one of those shoe lace type strings ( I forget what they're called, the kind you find attached to a back-stage pass).  He would wear one of those to keep the tube from flopping around and also used a small little newborn baby sock over the plastic clip to keep it from rubbing on his skin.- Keep the tube clean with water (sitting down during feeding might work better than standing up but don't lay down during the feeding) BUT MAKE SURE HE KEEPS SWALLOWING LIQUIDS, NOT JUST USING THE PEG TUBE!  Too much water before the feeding can fill you up, so try to save a lot of the water for cleaning the tube after the feeding.- Take your time during the feeding.  Feeding too quickly can make the tummy upset. ( we had this problem).- Have someone show you how to work the peg tube.  No one showed us at the hospital my husband went to.  When I asked why no one told him how to work the peg tube, they told us our insurance covered the peg tube but not the nurse to give us instructions. (....HMO)  :)- Where the tube meets the skin, you might get a little blood/puss around the opening.  You can use a small facial pad to cover the area.  Just cut a little slit to the center of the pad and wrap the pad around the tube/skin area.- Kids and the peg tube...our kids were 3 and 6 at the time.  My husband didn't care if the kids sat on his lap during his treatment (infact I think it helped him a lot), but I made sure that both kids were aware that daddy had a peg tube and to be careful when playing with daddy (don't jump on daddy, no hitting him on the tummy area, and so on).Keeping his weight up won't be easy, but it's going to be one of the most important parts of his treament.  Before you know it he'll be done with treatments and have the peg tube removed.  My hubby had his tube removed about 2 months after treatment ended.  He was 47, SCC of the right tonsil.  He's now 1 1/2 years out of treatment and doing really well. - Amy Amynmiami Sat, 24 May 2008 00:00:00 GMT wow...thank everyone for their advice about this. it is so great to hear about all these people that have experienced the same thing that we are going through now. i really appreciate everyone taking the time to write up their experiences. He begins his treatments on June 3rd! winicki846233 Mon, 26 May 2008 00:00:00 GMT  Thanks so much for asking this!  I was actually just getting ready to ask the very same thing!  My husband is getting his PEG today.  We were diagnosed in March - SSC of the left tonsil - stage 4A, 33 Tomo-therapy sessions and 3 Cisplatin infusions.  Thursday and Friday of last week he started getting really dehydrated.  Ended up getting a bag of fluids at the cancer center both days.  By Monday afternoon, he was getting dizzy when he stood up.  Blood pressure was WAY down and we ended up in the ER.  He got through 22 radiation treatments without the tube, so I think we are pretty lucky.   Geez, babbling.  Anyway.  Thanks for asking this, and thanks to everyone that gave such great suggestions!!!  Take care all! Babzilla Wed, 28 May 2008 00:00:00 GMT Hi,  My husband has sinus cancer and had PEG tube inserted due to extreme nausea from Cisplatin and mouth sores from radiation.  The doctors had to switch it to a PEJ- another small tube that feeds throught the PEG down further into his intestine the juejunum, because he was still vomiting with the feedings going into the PEG. 1.  Be sure to flush the tube with enough water to keep it clear.  Room temp. works best.  If it does seem hard to flush- mix some "meat tenderizer" with water and flush with that.  Coca cola also works if it is hard to flush..  My husband had to go in twice to have a wire run in and " get it snaked it out like a drain cause it plugged." 2. If you are giving meds through it-be sure to crush them thoroughly and mix them with water.  You can get some meds in liquid form, but they are usually more expensive.  Be sure it can be crushed- some meds are extended release and cannot be crushed-check with pharmacist.  Again flush well before and after.  If anyone has a PEJ- remember-NO meds through that tube-  It is too small.3. We use the velcro binder to hold it in place.  Some Neosporin and one of the split gauze dressings around it.4. Cover with Saran wrap or tape other waterproof material over it when bathing or showering.5. We also tape the cap closed when not in use and tape the tubing from the feeding bag to the feeding tube when running just to be safe.  Be careful of "burps"-when flushing or having the cap off the tube- you may get a surprise shower!6. We also run the feeding on a rate controlled pump. Bolus or gravity feeding just did not work- he felt too full.   We run it overnight so he has more freedom during the day.  My husband sleeps in recliner, but if in bed- be sure to keep head elevated at least 45 degrees when feedings are running.  Never lay flat while they are running.7.  Bowels can be a problem even with tube feeding.  Diarrhea or constipation is common- he still needs enough water and needs to get up and move around- decreased activity along with pain meds can lead to constipation.  Check with your doctor to see about laxative or stool softener if this is a problem.Hopes this helps.Kathy   scootie45 Wed, 28 May 2008 00:00:00 GMT Hi, Y'all,I read with interest everyone's experiences, and wish I had before starting PEG feedings 14 months ago. Now I have some advice.First, sit whilst feeding. And remain in an upright position for at least 30 minutes following feeding. The very first feeding I took a nap following it, and was in the hospital that evening with pain and distended abdoman.Second, crush whatever pills you need, timed-release or not. You should not be denied proper prescriptions because of this situation. Just do it.Third, I attach the end of my tube to a small medallion on a string around my neck. Forget about taping it to your stomach. Use one of those small plastic ties and attach it to something hanging around your neck, make a small loop big enough to allow the small end of your tube, then just fold the tube below the top with your fingers, open the end, attach it, and let go with your fingers.Fourth, I used a gauze around the tube for awhile, then one day I forgot it and it was OK. A little ooze of tummy stuff comes out and hardens, but you just scrape it off with a finger nail and it's fine. Fifth, don't bother covering it when you shower, If you've got it attached to something around your neck, just gently lift it up and wash under it across your stomach and chest and up around your neck. A little water around it is good, and helps clean it. You won't get any water migrating into the hole.Sixth, organize your feedings. I do 4/day--8am, noon, 4pm, and 8pm. That's five cans aday--one and a half at 8a&p, and one at noon and 4p. I crush my meds and put them in the 8p feeding.Seventh, I started using just Nutren (a Nestle product available at CVS for about $35/24-can case) but had constipation problems. So I switched to Nutren 1.5 with Fiber, and that relieved the constipation problems--for awhile. I used that for a year, lost weight (about 50 lbs from a base of 247), but the Nutren provided literally all the nutrition I needed and then some. Much better by a country mile than Ensure.Then, when I got on Medicare last month, I found the local Enterel feeding resource for the liquid nutrition uses Isosource 1.5 by Novartis. This is even better, in terms of how much nutrition it contains.Eighth, regardless of when you start the PEG, remember to keep swallowing no matter how uncomfortable it is or how much it hurts. Ninth, begin swallow therapy as while you are in radiation or as soon after as possible. My radiation oncologist neglected to recommend this, and I just went on my merry way using the PEG tube because it was too uncomfortable to swallow--mucous, pain, sore throat, etc. I should have been having swallow therapy. Now, 14 months later and 7 months into swallow therapy, I still cannot swallow much more than the tiniest bit of liquid. In fact, yesterday I had a cup of coffee for the first time in a year. Lots of coughing and gagging, but I got it down. But I don't know when I'll be able to eat --nor do my Swallow Therapist, Otolaryngologist, or the chicken entrails I regularly consult in matters of questions about the future--but it better be soon. We sail on the Queen Mary 2 on July 8 for France where we will stay in our home there until October. I didn't go last summer because I couldn't eat. I couldn't imagine then that I still wouldn't be eating a year later. It will be tough to be in France--the holy of holies for food and drink--without being able to eat or drink, but at least we'll be back at our home in that wonderful country. If anyone wants to write me with questions do so to esripvw at AmericaOnLine, then a period, then the letters com. I say this so strangely 'cuz the managers of this site censor out email addresses. I hope to hear from anyone with similar concerns. Finally, I'm an expert at something.  Ripvanwinkle Thu, 29 May 2008 00:00:00 GMT Oooh, boy, I feel like I'm an expert at this because none of my doctors helped me very much. I have been living with a PEG tube since October 2005, and it looks like it will always be here. It was very, very difficult for my body to get used to it. I had a lot of vomiting and diarrhea when I first got it. The diarrhea continued until my doctor told me I could take 8 immodium a day. It was that bad. I went through a series of procedures to open my esophagus, months of speech therapy, but the final straw was when my esophagus got perforated during a "routine" procedure and I ended up on a ventilator for a week. I dropped to 99 pounds (I'm 5'5"). The doctors there urged me to consult a dietician. She really helped me. I am on TwoCal HN (has 475 calories a can so you don't have to take as much fluid in) and FiberStat (a fiber supplement which helps you with digestive problems--a clear liquid that you can mix with anything). Now I am on SupliMed (once a day because it is so expensive), my Two Cal 2-3 times a day and Juven 1 time a day (which is a supplement to prevent muscle loss-I buy it off ebay). I feel better than I have in quite some time, and I have gotten up to 106. I use a pump at night if I'm going to be particularly active during the day.I would encourage anyone who is looking at long-term PEG usage to ask their doctor about a button tube. This changed my life. It is almost invisible under clothes, you don't have to worry about a tube dragging around, and I no longer have the painful granulation tissue. The button tube simply allows you to insert a tube into the small opening in your stomach. No bulky tube to worry about. You have to be extra careful with your meds as the opening is much smaller. It is wonderful. No one would help me where I live so I took matters into my own hands. I drive 3 hours to get it replaced but it is so worth it. I'm 33 years old and have a 3-year-old daughter. The button tube is simply marvelous and completely changed my lifestyle. I was embarrassed to leave the house, had to wear larger clothing, but now no more! It's great.I would also encourage you to visit the site oley.org. It has lots of good info about living with a feeding tube. Gagirl Mon, 02 Jun 2008 00:00:00 GMT I do have to disagree with the comment to crush any pills you want-extended release or not.  I am a nurse, and there are some meds you simply should not crush, because they are meant to be released over a longer period of time, and depending on the med, can cause serious problems if released too quickly.  Most meds can be obtained in a form that can be crushed, if not, another similar med could be substituted.  Again, check with a pharmacist if you are unsure. scootie45 Thu, 05 Jun 2008 00:00:00 GMT hi ive had my g tube in for 15 months and its there to stay as i am unable to swallow safely. I made such a fuss getting it in but thank God i did because if the cancer had nt have killed me the lack of nutrition certainly would of. At first it was a bit hard to deal with emotionally but physically I was fine.  I feed over 12 hours in the night. I live in South Wales Great Britian. I have a pump and a bag of liquid feed 1500ml which is 1800 cals. When I first started I was given a few 100mls and my bloods checked each day to ensure my body chemistry was on track. they then increased it bit by bit. I shower every day and apply a CONTREET foam around it. it contains Silver Nitrate. We dont use hydrogan peroxide here. I suffer from granulation badly but im very active and this causes the peg to move in out too much. When its bad i use Fuciden H and as last resort silver nitrate pen!! yuck!! Next week they are fitting me with a button type to take care of this problem. I have to lie propped up at 30 degree angle or I suffer from reflux and can feel very sick. Thats a pain though and i dont sleep well at night. I rinse the tube out after adminstrating feed or medications. THAT IS A MUST or you ll clog up tube. but if that happens try carbonated water it will clear it.  As time goes by it becomes part of your life and it is definitly a life saver! on the down side Im a dance teacher and I cant hop or jump now!! but seemingly this wonder BUTTON type will cure that. Watch this space!! Good luck, hopefully yours wont be in for long. x BUTTERFLYDANCER Tue, 10 Jun 2008 00:00:00 GMT I had a peg tube for 6 months. Its took a little bit of getting used to but after awhile you really get used to it. Its kind of like when you have a new car, you clean it and polish it for a few years then you run it through the car wash. My personal experence was that you should be wary of who you get the supplies from. I had many problems with my feeding lines breaking in the middle of the night and making a mess. The tube itself was not a problem except the fact of self awairness. I was always trying to hide it under my shirts and very self conscience. Now that it is out I just tell everyone that dosent know me that I was born with two bellybuttons. But really, if you need it, GET IT. I could not of eaten thoughout my treatment for tonsil canser. Its been 2 years since and I still cant eat or taste like I used to but I am doing better. I lost 40#, and I know its because I dont eat alot of junk I used to. Chocolet dosent taste good so therir goes the bag of oreos every night. I have found that pasta is part of my eating alot more. Iced sweet tea helped alot when I eat now and I am eating everthing I used to even if I have to force myself. People dont realize how hard it is to watch food commercials when you cant eat!  I didnt have pizza for over a year but buy god I am eating it now. Keep the faith. Even if it dosent taste the same ever, everyday gets a little better and we are alive. I get the greatest thrill when I eat something I havent in awhile and taste it our not, damn it, its not going to beat me. God Bless joey p Fri, 29 Aug 2008 00:00:00 GMT