Hi,

My sister has been told she will need a feeding tube thruout her treatments-it was inserted 2 days prior to her first dose of chemo( she has just had one so far of paclitaxel and carboplatin- radiation to start soon-) anyway- she is only 119 lbs and quite tall- what can be done to keep her weight on-I read one post where a woman lost 70 lbs!! with the tube??? Is there a hope she will not lose if she has the tube? She is now getting 5 feedings a day thru the tube. Thanks for any response.

Sarah

Sarah,
I assume that your sister is working with a speech pathologist or nutritionist...someone who was in charge of instructing her on the use of the PEG tube and is conscious of how many calories she is getting from the 5 feedings. I did 4 feedings per day for a total of approx. 2000 calories and I lost about 20 lbs. I was slender to begin with and got pretty skinny there for a while. However I was able to get all of the nutrition that I needed from the tube feedings when I was unable to swallow.

I hope that this is helpful.

Danny G.

Hi Sarah,

I think losing the weight depends upon how much you have to lose. I lost close to 80 lbs. I had at least 60 to lose. Look at the calories on the bottles. make sure she gets what she needs. I took 9 boosts a day. Three in the morning, three at luch and three for dinner. She may need more. I found Boost High Protien and the Walmart brand to be the best for protien content.

She will lose, but it does not have to be life altering.

Steve

Steve and Danny G-
Right now all I know is she has someone come in to do the feedings. She had to swallow the tube and it comes out her stomach- I don't know if that is a PEG tube. Tomorrow she meets with her Dr. to get the results from the MRI, CT, and PET tests-lets hope it is does not have any more drastic news than the tonsil cancer we know about. I also am trying SO SO SO hard for her to gather these results and get a team opinion from Dana Farber rather than just from U MASS Medical. She trusts her Dr. however and says she doesn't want to interrupt however I keep stressing the importance of 2nd or 3rd opinions!

THANK YOU FOR THE REPLIES! BE WELL TO YOU BOTH!

Sarah

I'm really surprised someone at U Mass Medical said she shouldn't go to Dana Farber for a second opinion. Until now, I've heard nothing but really good things about U Mass Medical.

What your sister has sounds like a PEG tube (and , if so, actually she didn't swallow the tube, she swallowed an endoscope with a light at the end that they would have used, when it got to the stomach to locate where they should cut to insert the tube. She was probably semi-conscious for this and it isn't fun, I can see why she might have thought she swallowed the tube itself). If she hasn't done so (but I have a hard time believing they wouldn't do this at U Mass Medical), she should meet with a nutritionist about using the tube and what sort of food to pour down it. Her insurance may cover prescription tube food, such as Jevity 2.0, which has more fiber (which will help her stay regular) and if so a hospital nutritionist can get that ball rolling.

I had some extra cushioning so I lost about 65 pounds altogether and about 40 of that I needed to lose and some of that was before the chemo and radiation and some was after. I think I lost about 20-25 pounds during chemo/rad. Since your sister has no cushioning, once she starts treatment she needs to be SURE she gets an adequate amount of calories down (either by swallowing or the tube) right from the start. The nutritionsit may know of some higher calorie stuff she can mix in with ehr regular tube food if calories really become an issue. Losing too much weight will interfere with her healing so it's really important.

Nelie

Nelie,

Thank you!

I am now finding out about the Dana Farber comment- it seems that they say there wasn't time because they wanted to insert the feeding tube immediately to try to fatten her up asap. So it may have been my sister's choice to go with the immediate admittance to Umass and I guess stay with them-I am going up there this weekend to get straight to the source instead of he said/she said etc...I know they want her on more than 2000 cal a day but the exact number I'm not sure.

So much too learn!!!

Be Well

Sarah

Hi, Sarah, I'm trying to keep up with all your posts, but you've got them scatterd out. As to the peg tube. Tell us if she does have a peg, with the feeding tube inserted through her stomach. My husband has been on 2CAL-HN for almost 2 years. 475 calories per can and the Ins. co pays for it. He suppliments those calories with additonal feedings of Welches Concord grape juice,beer, Clamato juice, shakes, any high calorie liquids or pureed soups-all through his tube. He is currently getting 3000 to 4000 calories a day. PLUS we add weight gain powders and Benefiber to some of the tube feedings. The 2 Cal HN @ 475 cals. per can provides 1900 cals if you use it 4 times a day. That was a base for us. John had to train his stomach to accept more volumn and she might too, so start with the best product out there. Ask the questions that you know need factual answers and go from there. Amy

HI Amy- Thanks- First I'm not sure how to use this board- which is the best format to ask questions-under general? I guess I'm so eager to gather info and may be a bit over zealous- Yes my sister is with the PEG tube- this weekend I'll be able to get much more information after I visit her and perhaps will be more specific with my inquiries- again thank you and I hope all is well.

Sarah


Sarah

Sarah, there is a list of topics to choose to post under- ie- "Currently in Treatment" "Meds, Treatments,Procedures" "Caregivers", "Insurance", "General"[ I counted 15 in all] You can post on more than one at a time, but it will be easier for us to answer you if you choose a couple of forums that best represents what is happening with your sister now. If something unexpected pops up-say like an Insurance issue- then post your question or comments on the Insurance forum. And if you have not had time to read the "Getting through it" forum, please do. It will help you. Glad you are going to spend time with her this weekend. Amy

Sarah,

She certainly has a PEG tube. I have not read the other responses. I handled my own feedings. If your sister is strong enough, I suggest she do the same. I laughed when my wife tried and the nurses were just as useless and fumbly. It was easier for me to just do it myself. I knew how much to take and how I felt. It also gave me a sense of caring for myself.

She will bve glad she has the tube as teatment goes along. But I suggest she feed herself.

Steve

Yes, if she can feed herself she should do so. She'll know to stop if she's feling nauseated or is about to sneeze or cough (which can give you an interesting and messy lesson in fluid dynamics if you do that with a full syringe of food). When I had my first PEG put in, the nurse at the hosptial that showed me how to use it was great. She said "think of it like a bath toy you're playing with and it makes it not seem so horrible". I don't know, maybe that advice seems wierd to other people but it made me much less tense about using the syringes to feed myself when I eventually had to (which wasn't until several weeks later)...

PEGS can be fun, and amuse the occasional onlooker. I had mine inserted a couple weeks prior to starting treatment and from day one was pouring in as much as I could stand. I am not positive, but I think it was removed about a month or so post treatment.

I modified the input process a bit. I got some large 60cc syringes. I removed the piston/plunger, attached an adaptor to the PEG to handle the two different sizes, inserted the tip of the syringe into the adaptor and then free poured my Ensure into the syringe. When finished "eating" I flushed it with as much water as I could then handle to clean it.

As stated above, she will need to be acutely aware of the potential lessen in fluid dynamics should a need to hurl, a cough or even the hicups should occur. It only takes one time to realize the amount of force the abdomenal muscles can exert on the fluid in ones stomach.

Please tell her to eat, eat, eat and when she is full eat come more now while she is feeling reasonably well. She will not regret it in the least.

Bill

My family has put me on a 3000 minimum calorie in take. I try to do most of it by mouth while I can. I use in Jevity 1.5 fiber in the tube also water. I have to keep the tummy stretched. But while I can eat every so slowly and yes painfully I try to get the good stuff down. Alot of chewing (mushing) with the front teeth. I have atleast 5 Nutrition drinks a day and the rest comes eggs, mashed potatoes with lots of butter and sour cream. and these chocolate covered cherries that are definatly to "live" for. The cherries are slightly tart and sting but I am willing to over look the burning. So to go on with my nasty list. Milk shakes and smoothies clam chowder and lobster bisque, baked haddock w/lots of butter saute squash w/lots of butter. I am having fun discovering what wicked things I can eat. Of course I am probably opening the door for heart disease now. Oh well. The doctor is pleased that I am holding solid at 120 lbs. I just had my 2nd chemo treatment yesterday and all went well. So extremely fortunate no vomiting and no nausea. I believe I will start my radiation in 3 to 4 weeks. I meet with him tomorrow and find out his plans for me. Please advise me on any deliciously wicked foods and treatment tips. Thank you for here. Penny

Hi Penny, for deliously wicked I would go with ice cream added to the blender with your smoothies, baked crab imperial (or lobster up your way)melted cheese on everything, loaded baked potatoes, and that soft moist chocolate mouse cake that has about 1000 calories per slice from the good bakery -don't forget to put ice cream on top of that.

Lots of Boston chowder, soft moist cookies of any kind, and chocolate truffles. I think you can get bags of Lindt at the grocery stores now. Harry and David have nothing low calorie so they're good. Have a box of those chocolate covered cheeries for me - do you put them in the freezer to get them cold?

Also you can take the Jevity and add chocolate syrup, ice cream and ice to make it a shake that you can drink. Jack still continues to do that even though his PEG tube is now out. Blended Dinty Moore beef stew, chicken or beef pot pies, and pasta with alfredo sauce. There's a frozen one from Barillo? that has about 600 calories per serving that you heat up on the stove.

Make sure that you have good anti nasuea drugs on hand in case you have problems down the road. You don't want to have to start calling for that when you're not feeling well.

Sounds like you're off to a great start.
Regards JoAnne

Gee Whiz Penny and JoAnne- I just finished dinner and you've got me starving again! Good for you Penny and good for your "bossy" family [bossy sisters?]
Keep it up. Amy