PEG timing

OneFrazzledMom
OneFrazzledMom Member Posts: 4
in Head and Neck Cancer #1

At what point did you get your PEG? My husband only has 9 treatments left. He stated yesterday that maybe he should get a PEG because it is so hard to eat. He did great with just EnsuRe today. How long after radiation is over before you can eat again?

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    welcome & Happy 4th

    OFM,

    Welcome to the H&N forum, where PEG is sometimes a dirty word, but I do not care.

    For myself I had 2 PEG’s, 1 very bad and 1 very good. I got 1 before treatments started and the 2nd one around week 3.  I had it removed at 2 weeks post and was mainly drinking my meals for 7 months.  I am now fully “new” normal with eating.

    There have been a few members who did not start using their PEG until the end of treatment. 

    Generally, it is a simple procedure and you can hook up for filling shortly afterward.

    Matt.

  • Bill_Litchfield
    Bill_Litchfield Member Posts: 19
    #3
    Never too soon

    OFM,

    I got my peg before starting treatment. I needed to start using it at about the 3 week mark in treatment. I am now 8 weeks out from my last radiation and still need it for all nutrition although I am able to tolerate some liquids by mouth. Every persons recovery road is different so it is difficult to say. The key things to remember in early recovery is to maintain as much rest, nutrition and hydration as possible by tube and/or mouth, keep swallowing activity happening and do the exercises to keep the neck, mouth and jaw flexible.  There will always be improvement - patience and a positive attitude are critical.

    Bill

  • RottiesMom
    RottiesMom Member Posts: 167
    edited July 2016 #4
    Peg

    I got my peg before starting treatment.  (First Chemo was 6/21 and radiation started 6/28.  The reason it was put in before I started - I can't afford to lose any weight (109 lbs) and drs were afraid that if I starting losing weight, by the time the tube was put in I would have lost too much.

    Joanne

  • OneFrazzledMom
    OneFrazzledMom Member Posts: 4
    #5
    Bill_Litchfield said:

    Never too soon

    OFM,

    I got my peg before starting treatment. I needed to start using it at about the 3 week mark in treatment. I am now 8 weeks out from my last radiation and still need it for all nutrition although I am able to tolerate some liquids by mouth. Every persons recovery road is different so it is difficult to say. The key things to remember in early recovery is to maintain as much rest, nutrition and hydration as possible by tube and/or mouth, keep swallowing activity happening and do the exercises to keep the neck, mouth and jaw flexible.  There will always be improvement - patience and a positive attitude are critical.

    Bill

    Too late

    i was worried it would be too late with only 9 treatments left. But I guess it takes awhile to be able to swallow. He is saying eating is a chore, not only the pain to swallow but also the taste of everything is gagging. 

  • OneFrazzledMom
    OneFrazzledMom Member Posts: 4
    #6
    CivilMatt said:

    welcome & Happy 4th

    OFM,

    Welcome to the H&N forum, where PEG is sometimes a dirty word, but I do not care.

    For myself I had 2 PEG’s, 1 very bad and 1 very good. I got 1 before treatments started and the 2nd one around week 3.  I had it removed at 2 weeks post and was mainly drinking my meals for 7 months.  I am now fully “new” normal with eating.

    There have been a few members who did not start using their PEG until the end of treatment. 

    Generally, it is a simple procedure and you can hook up for filling shortly afterward.

    Matt.

    Why is it a dirty word?

    Why is it a dirty word?

  • Bill_Litchfield
    Bill_Litchfield Member Posts: 19
    edited July 2016 #7
    OneFrazzledMom said:

    Too late

    i was worried it would be too late with only 9 treatments left. But I guess it takes awhile to be able to swallow. He is saying eating is a chore, not only the pain to swallow but also the taste of everything is gagging. 

    I think never too late

    OFM,

    You should have a disussion with your husbands team about a PEG as soon as you can. You haven't said how you husbands weight is doing or how your team are feeling about it. If they aren't saying anything you should ask.

    Also, if you haven't had a good browse through the SuperThread at the top I recommend that you and your husband spend some time there as well.

    Bill

  • Bill_Litchfield
    Bill_Litchfield Member Posts: 19
    edited July 2016 #8
    OneFrazzledMom said:

    Why is it a dirty word?

    Why is it a dirty word?

    Dirty Word

    OFM,

    I think it is around personal preferences about image. The PEG is something hanging on the outstide of the body and I guess for some it is too much. My oncologist said when we were discussing the pros and cons that some patients just can't bring themselves to have one and some of them (not all) end up in trouble and in hospital with issues because of nutrition. I don't regret my decision to get one.

    Bill

  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    OneFrazzledMom said:

    Too late

    i was worried it would be too late with only 9 treatments left. But I guess it takes awhile to be able to swallow. He is saying eating is a chore, not only the pain to swallow but also the taste of everything is gagging. 

    One of our members

    got his tube the last day of rads.  It's never too late. 

    p

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #10
    OneFrazzledMom said:

    Why is it a dirty word?

    Why is it a dirty word?

    PEG

    OFM,

    Some take a firm stance on not getting a PEG (at all), while others could not do without.

    If you need one, it is godsend, if you don’t, lucky you.

    Most of us struggled with something to do with treatment side effects both mental or physical.

    You have to consume 2 to 3k calories a day, that simple.  How you get them is up to you.  A lack of calories or dehydration will put you in the hospital.  You need to fight the cancer on ALL fronts, not just the physical cancer.

    I use to hang my Jevity high, relax in my recliner and know that portion of the day was done.

    I wish you all the H&N luck in the world

    Matt

     

  • thennies61
    thennies61 Member Posts: 285
    #11
    Had mine put in during the

    Had mine put in during the operation.Dr wanted to be I could get what I needed during treatments.Even after I had it but didn't need it but had to gain at least 10 pounds before he would pull it.Helped alot when it was hard to swallow anything.

  • OneFrazzledMom
    OneFrazzledMom Member Posts: 4
    #12
    Bill_Litchfield said:

    I think never too late

    OFM,

    You should have a disussion with your husbands team about a PEG as soon as you can. You haven't said how you husbands weight is doing or how your team are feeling about it. If they aren't saying anything you should ask.

    Also, if you haven't had a good browse through the SuperThread at the top I recommend that you and your husband spend some time there as well.

    Bill

    His team has told him he has

    His team has told him he has to stop losing weight. He has lost 8lbs in 3 weeks. But the last few days has been the worst. He said it is a chore to eat. Today he had only has 1200 calories so far. Oh and he ended up in the ER with a fever and his neck opened up. If he is admitted I think he will discuss the tube, if not he will discuss it tomorrow with the chemo dR. 

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #13
    Our oncologist said

    It can be too late for a PEG if your health is otherwise compromised.  Healing is more difficult later in treatment.

    Talk to your doctor for guidance at this point.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #14
    PEG

     

    I was able to go through both my radiation treatments with no PEG but that was very very hard and I lost over 50 lbs, not good. I have a PEG now because I lost the ability to swallow. Sit down with your doctor and let him or her know what your problems are then go from there.

     

    Tim

     

  • Bill_Litchfield
    Bill_Litchfield Member Posts: 19
    #15
    OneFrazzledMom said:

    His team has told him he has

    His team has told him he has to stop losing weight. He has lost 8lbs in 3 weeks. But the last few days has been the worst. He said it is a chore to eat. Today he had only has 1200 calories so far. Oh and he ended up in the ER with a fever and his neck opened up. If he is admitted I think he will discuss the tube, if not he will discuss it tomorrow with the chemo dR. 

    Nutritionist

    OFM,

    If your hubbie goes with a PEG make sure that you get hooked up with a nutrtitionist to make sure he has the best advice and targets. My nurtritionist set my intake at 2550cal a day and I maintained weight between 150lb and 155lb while under treatment. After treatment I was at my low of 150lb after hospitalisation for pneumonia and CDiff infection. After treatment my weight came back to160lb and seemed to plateau, so I have now added an additional 1440cal a day by taking an extra 4 Boost Plus a day. I feed five times a day, two containers per session for a total of 3550cal per day. My weight is coming back, I am now 167lbs from 159lbs a week ago. My start weight back in Feb this year was 178lb (I was probably about 5lb overweight then) so I will be happy to get to just over 170lbs. I had all my teeth removed prior to commencing treatment so some of my early weight loss was caused by the change to the soft diet. Once I start eating again I am going to have to get very creative to ensure I maintain the cal/protein intake. Dentures are likely to be 3 to 4 months away. I hope that my story will help your husband in tackling the weight/nutrition issue which is a critical part of the whole fight. I hope your husband doesn't need to be hospitalised. I always felt better at home than in the hospital.

    Bill

    p.s. If he goes with a tube I recommend looking at a G Tube Bag (See the Superthread). 

  • donfoo
    donfoo Member Posts: 1,773 Member
    edited July 2016 #16
    medical consideration

    Swallowing is a reflex that forgets how to work if not used. Many doctors believe a PEG increases the potential for that reflex to be compromised. Eating during treatment is a chore and work. No joy, very painful, and takes forever. But if the greatest efforts fail to slow the weight loss to an endurable level then the doctors will recommend a PEG.

    There is no free ride, it is finding the right balance for your specific circumstances. Talk with your doctor about the best course of action for you. Good luck

  • SusanUES
    SusanUES Member Posts: 125
    edited July 2016 #17
    MSK seems to be anti-PEG unless really necessary...

    My oncologist never once opened up the matter for discussion and his nurse only mentioned it once.  I think MSK goes the route of "keep swallowing, keep eating, keep drinking and you only get the PEG if absolutely necessary."  I was fairly ignorant about this option so it did not become an issue.  However, eating was pure torture for a month after rads...even though it was all liquid shakes...and even water was painful.  My weight plummeted to 106, that was scary.  All good wishes for your husband...whatever decision he and his doctors make, just make sure he gets his daily caloric quota.  It will be tough for awhile but better days are coming soon.

  • Kari2007
    Kari2007 Member Posts: 108
    #18
    PEG before treatment

    I opted to get a PEG put in before treatment, which my medical team was very happy about. I knew that maintaining my current weight as much as possible would be key to feeling better and healing and I wanted to get it done while I was still feeling well, and not dealing with whatever I was feeling from treatment. Having said that, once I got the tube it was a major psychological adjustment. It in no way feels natural, but I am starting to get used to it. I haven't started using it, but the doctor said I might want to start supplementing my diet now as I've lost a bit of weight already. I'm still able to swallow without difficulty, but things (two weeks in) just don't taste the same and I've lost the desire to eat all that much. Hard to get excited about food when it doesn't taste all that great. I've got all my formula ready to go. Just haven't pulled the trigger yet. I'm such a foodie that this has been one of the harder things psychologically for me. But, it's temporary!

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #19
    Kari2007 said:

    PEG before treatment

    I opted to get a PEG put in before treatment, which my medical team was very happy about. I knew that maintaining my current weight as much as possible would be key to feeling better and healing and I wanted to get it done while I was still feeling well, and not dealing with whatever I was feeling from treatment. Having said that, once I got the tube it was a major psychological adjustment. It in no way feels natural, but I am starting to get used to it. I haven't started using it, but the doctor said I might want to start supplementing my diet now as I've lost a bit of weight already. I'm still able to swallow without difficulty, but things (two weeks in) just don't taste the same and I've lost the desire to eat all that much. Hard to get excited about food when it doesn't taste all that great. I've got all my formula ready to go. Just haven't pulled the trigger yet. I'm such a foodie that this has been one of the harder things psychologically for me. But, it's temporary!

    PEG

    Kari,

    Remember to flush the PEG daily even if you are not using it.

    Matt

  • MrsBD
    MrsBD Member Posts: 617 Member
    #20
    PEG less

    As donfoo mentioned, my oncologists felt that patients tend to use the tube at the first sign of pain and run the risk of losing the ability to swallow. It wasn't easy, but I never had a PEG. I drank Ensure or home made bone broth, ate green beans and tried lots of different foods. There was about a week where I know my calorie intake was too low and the nutritionist was panicking a bit, but I didn't beat myself up over it. It hurt to eat and my appetite was gone, but I figured out when to use the pain meds and Magic Mouthwash and slowly got back to a normal diet. It was tough, but it can be done.

  • SylMarie
    SylMarie Member Posts: 91 Member
    edited July 2016 #21
    SusanUES said:

    MSK seems to be anti-PEG unless really necessary...

    My oncologist never once opened up the matter for discussion and his nurse only mentioned it once.  I think MSK goes the route of "keep swallowing, keep eating, keep drinking and you only get the PEG if absolutely necessary."  I was fairly ignorant about this option so it did not become an issue.  However, eating was pure torture for a month after rads...even though it was all liquid shakes...and even water was painful.  My weight plummeted to 106, that was scary.  All good wishes for your husband...whatever decision he and his doctors make, just make sure he gets his daily caloric quota.  It will be tough for awhile but better days are coming soon.

    SusanUES, I, too got the same message from JH about using a PEG

    It's interesting that MSK gave you the same message that I got from JH. Thanks to the good folks on this board, I knew to ask about a PEG when I saw my surgeon at JH for my post-op appointment, in case the tumor board recommended RADs. He shook his head and said, "I don't do that." When I explained the posts I had read on this board, he just told me the problems were more common with FOM or tongue cancer than with upper jaw gingival cancer. I find this approach scary, because why endure unneeded suffering if we don't have to? If shakes and even water can cause so much pain to swallow, it makes no sense to force someone to endure it. Since I will be getting my RADS locally, I guess there is time to find the right doc who may be more open-minded. I will promise to practice swallowing as much as possible.  

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