CSN Login
Members Online: 5

Consider not getting the peg

shergias
Posts: 1
Joined: Apr 2009

I just wanted to let people know that my husband Stage 2 base of tongue and tonsil, went through his treatment without the peg after being encouraged to do so by the radiation nurse.

This is a good option in you are overweight and can afford to lose 40 -50 lbs.

When you rely on the peg it saves you from the discomfort of eating but in the long run you become too dependent on it and have to learn how to swallow again.

It is tought to do, but the recovery time is so much better. I know of some cases where people have the peg months after treatment is over.

Just something to consider, I realize it is not for everyone.

God Bless everyone going through this curable but very tough treatment.

RoseEm's picture
RoseEm
Posts: 32
Joined: Apr 2009

My j-peg saved me life. As I've said in other threads here about the subject, I am dumbfounded that anyone would use cancer as a weight loss method. Yes, I had it for several months, because I could not swallow anything - including water. Yes, I had therapy, but got enough of the muscles back that I can deal with soft foods. I would have died without it. Literally.

I once had a nurse in the hospital tell me one of my CT scans showed emphysema. When I asked my radiologist and oncologist, they hit the roof. What she was seeing was pneumonia. Please, please encourage patients to trust their doctors. If they don't, they need to find a new one.

I am very passionate about trusting and believing your doctors because a friend of mine did not want to follow some of her doctors' recommendations and she died within 6 months of being diagnosed.

Fireman
Posts: 28
Joined: Feb 2009

I considered "not" having the PEG tube until I lost 50 pounds, could not eat or drink anything, became dehydrated and hospitalized. It became my life line. I used it for 4 months until I healed up enough to start eating and drinking by mouth again. My doctors told me to keep it in for a while even though I wasn't using it anymore in case I caught cold or got sick because my throat might swell. It was actually just pulled this week which was a breeze for me. I tried the tough guy routine and paid the price. I know some people were able to manage without it, but I don't know their treatment regime. Had I took my doctors advice gotten the PEG tube at the beginning of treatment, I could have recovered a lot faster. Everyone has to make their own personal decisions. Practice swallowing even if you have the Tube to keep the muscles working. As I said before, the PEG tube is an insurance policy, if you don't need it, great, but if you need it and don't have it, you could have big problems.

Bobert
Posts: 4
Joined: Mar 2009

I finished 7 weeks of radiation & chemo almost 6 weeks ago. I lost 47 lbs mainly because lost of taste made everything taste so bad. I had one bad week (5th week) which I lost 11 lbs. The following week I had a chemo session and took IV for deyhdration for 4 days after that I was fine and finished my last week of radiation. I've put 10 lbs back on and feel great. If you can't deal with pain get the peg tube. My doctors have told me I tolerated this treatment better then anyone else they have treated. I would base the decision on your past history on how fast you have bounced back from other illness or surgeries. No right or wrong here just what works for you.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

1) I remember my Rad Oncol telling me on the very first visit (Aug. 2007) that it would be very difficult for me to talk him out of the PEG requirement. I am so glad I listened to him. Like he said, it was solid insurance to have it in place because by the time I really "needed" it my health and the way I felt might have deteriorated significantly and made it much rougher to install. And, if by chance I never used/needed it, all the better. But, I did need it.

2) The PEG enabled me to control nutrition and hydration at proper levels both of which have a huge impact on treatment and recovery. Like most of us I did 35 IMRT and 7 concurrent Cisplatin treatments. I had the PEG installed at the end of week 3. By week 5 I was using it part-time. By week 7, using it 90% of the time. The amazing thing was that I learned the hard way (as many of you probably did) that the side-effects continue and may even intensify AFTER treatments end.

All that to say I used my PEG for about 4 weeks post treatment and then had it removed after a 2 week transition period, closely tracking adequate nutrition and hydration levels without use of the PEG.

I just had my 18mo. PET/CT full body scan and it was cancer free. I think the PEG greatly contributed to my health and well-being during and especially after treatments.

JMHO.................JK

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

I WILL START MY 5 WEEKS RAD NEXT MONDAY FOR MY SMALL LOW GRADE TUMOR ALREADY REMOVE A MONTH AND 3 WEEKS AGO, I MANAGE SOME GOOD LEVELS OF PAIN AFTER MY SURGERY WERE THEY REMOVE SMALL PORTION OF MY SOFT PALATE ,LOST 10 POUNDS AND RECOVERED, IAM A WELL BUILD AND LG FRAME 47 LADY ,I AM WITH YOU AND WILL TRY VERY HARD NOT TO DEPEND ON THE PEG ,EVEN I CAN AFORD TO LOSE SOME WEIGHT ,,,,IT HAVE TO BE THE WORSE FOR ME SO I CAN DECIDE AND ALSO MY FAMILY AND DOCTOR WILL DECIDE TOO , SO FAR MY RAD AND ENT NEVER ASK ME FOR THAT .

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

I respect your decision and support you. Please, however, do not underestimate the importance of nutrition and hydration during and especially AFTER treatments. If you are confident you can maintain those at adequate levels without the PEG, fantastic.

God Bless and I pray for your successful progress. JK

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

God Bless you too.

abdulrauf_hafeez
Posts: 11
Joined: May 2009

I just finished the 4th week of stage 2 nasopharyngeal cancer treatment. My tumor was about an inch in size without nodal involvement. My docs didn't give me a peg tube. They told me they'll watch my progress and install it if needed. Since treatment began, I have lost about 7 lbs. I was 5'7'', 153 lbs at the start. At this point, I don't have much trouble swallowing. The main problems I face are feeling full (not able to eat much in one sitting) and loss of taste. The sores in the mouth and throat hurt but I can handle that. My point is that the intensity / coverage of radiation is likely determined by the size, stage of your tumour. If the docs think that the radiation may not be strong enough to close up your throat, they may opt for a wait and see approach. I am still waiting...

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

THEY ARE HOUNDING MY HUSBAND ABOUT THIS DARN FEEDING TUBE I THINK IT IS AN UNNECESSARY PROCEEDURE UNTIL OR IF REALLY NEEDED THERE SEEMS TO BE ALOT OF THINGS THAT CAN GO WRONG WITH THESE STUPIUD THINGS. HE HAS ALREADY HAD 2 SURGERYS AND I THINK THERE ARE TO MANY RISK FACTORS UNTIL ABSOLUTLY NEEDED HE HAS 17 TEATMENTS LEFT HE IS COUNTING DOWN HE HAS A LITTLE SORE THROAT AND WE KNOW IT WILL GET WORSE BFORE BETTER HE HAS NO SORES IN HIS MOUTH OR THROAT

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

Hi "heschie", keep holding the peg procedure and let your husband eat for himself using his oral muscle and mind strengh.I think the Peg tube is the easy way to go for some people if they have a very bad case of cancer invasion to treat for a long period or even with quemo.
I myself was freek by a nurse in the Rad office the first visit i have months ago, till my rad told me that i will not need that. My plan is 7 weeks x 5 weekly total of 35 rads directly into my left soft palate, after 4 weeks i have a superficial sore in my back palate and one on my inside left cheek ,,the rad don't think it will get more worse and i have 2 more weeks to finish.
It is a lot of food that he can eat nomatter if hurts a little, i myself love the taste of cesar salad even my taste buds are 90% gone i can taste the bitter and it hurst little bit but i rink milk after every fork full ,,UMMMM delicioouseee.,, so hang in there husband and try till you cant anymore and then ,,,,,you sit with the doc to discussed the Peg .
Good Luck.
Roxie

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

my husband has decided to have the tube he's tired of the doctors hounding him
I am so scared and all I do is cry what if I do something wrong to cause him to ge an infection or cause the tube to clog I am just very lost today it is a bad day all I seem to do is cry and trying to hide it from is very hard

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

First, having a procedure done so that the doctors stop hounding you is probably the worst possible reason to have a procedure done.

Second, considering that your doctors are hounding you in urging that you take some action or have some action performed generally indicates a lack of trust in the doctors. If your husband does not trust them, he should get doctors that he does trust. (If he is looking simply for doctors that agree with him or with you, than he is not really looking for quality care but for people who agree with him or with you, by the way.)

Third, I have had a JPEG tube since October of 2005. Twice it has fallen out, twice I have had a new one installed while I watched. It is true that the entry point for the tube is a wound, and it is true that this wound can become infected, it does not take an unreasonably burdening effort to keep the wound infection-free. I do most of the cleansing of mine myself and do not have any qualms about it.

It is true, too, that the tube can become clogged, even if you stick strictly to the protein-laden products designed for it, like Jevity, because those liquids tend to gel, harden. This too, can be overcome easily, at least in my case. I always pour warm water down the tube after every feeding. And if and as I forget on occasion, and I do, and there is a bit of clogging, a plunger is provided, making it easy to clear the congestion.

In other words, while we certainly should not WANT a tube, and should certainly not RELY on a tube if we can avoid it, if our doctors think it in our best interest to get one, we should get one, and not worry too much about it afterward in terms of possible dramatic trauma. Proper care will resolve those issues before they can arise.

As for you, it sounds as though you need a caregiver break! My advice to caregivers is that to be a good caregiver you must take good care of the giver! Go out with some friends, see a movie, have a nice meal, whatever it is that gives some calm, some serenity, some enjoyment, to YOU. It is not betrayal. It is you recharging your own batteries, and it is an absolute requirement if you are to be the best you can be for him!

Best wishes to both of you and to your family.

Take care,

Joe

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

thanks soccerfreak

we are taking 1 day at a time thats all we can do I am concerned that something I do can add to his pain it is VERY hard for the care giver. I think as a woman who always tries to make things better this is out of my reach it is hard to watch someone you love go thru this and not be able to do any thing to make it better for him

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

he is eating very well he eats 3 meals a day 5 ensure a day plus puddings and ice cream and milk shakes I have to stay on him but he does it with some grumbling when we first discovered he had cancer he weighed 189 by the time his surgery was over and treatments started he was down to 166 pounds we have managed to put 11 pounds back on him and still trying

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Hello
I was not wild about having the G-Tube installed, but was glad I did. I had 16 weeks of radiation with a total of 7000 rads. I was unable to swallow even liquid and did not feel like eating. Without the G-Tube I would have dehydrated and probably starved. I was able to maintain my weight through tx, I lost about 35 lbs. But I really began to loose weight as I finished tx and my body required A LOT of nourishment to heal itself. I was doing 4000 calories a day and lost another 30 lbs before I leveled off and began to put weight back on. It was mostly due to my G-tube and meatloaf. My wife makes the best meatloaf there is. The earlier he has it put in the quicker he will feel better and comfortable with using it. I also needed to take some meds that I could not swallow. But, I was able to break them up and mix them with water and put them in my G-Tube. They were Antibiotics and much needed. Your immune system really takes a hit from cancer tx and he may need medicine that he cannot swallow. Have him put the G-Tube in the sooner the better. I am 6 years out from squamous cell cancer and weigh a nice 193 lbs and eating solid food again. Good luck and get well.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I respectfully disagree. I was hardheaded and decided against having the PEG installed even after my oncologist suggested it. I didn't last long. After a couple weeks of treatment, I had to have one installed and spent a week in the hospital due to my deteriorating condition.

That was 5 years ago. I had the tube taken out in December of 2004. Everything was going great until two years ago. I started having trouble swallowing. I just had a swallow study done and it has been suggested I have a tube put back in. The effects of radiation can be felt years after the treatment. My throat was as hard as a rock. So far, I have had 77 hyperbaric oxygen chamber treatments which has actually softened the tissue but has not helped the swallowing mechanism of the throat.

When I developed the cancer in the base of the tongue, I weighed 220 pounds. I now weigh 145. The weight loss aspect is great but there are better ways to do it.

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

I just kept sipping water and my swallowing is fine . The more food and water i got in me the better i felt. You dont have to use the tube if you dont need it. When things got bad after the 2nd week of radiation the feeding pump with the peg tube was great .

abdulrauf_hafeez
Posts: 11
Joined: May 2009

Hello,

Just an update to my post earlier in this thread. I have made it thru the treatment without a peg tube. It's been 2 weeks since treatment ended. At the last weigh-in I came out at 138 lbs (14 lbs lighter since treatment started). I drank plenty of nutritional suppliments: 4-5 8.5 oz cans a day. In weeks 4-8, that's all I could eat. I took some psyllium husk (ispagol) to help with constipation. Now I am eating solid foods as well. The only difficult part of eating is that I can't taste much of the food and spicy foods hurt. I have dreams of tasting mouth-watering foods. I wonder when the taste buds will come back.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network