To Peg tube or not

edreddog
edreddog Member Posts: 19 Member
edited April 2015 in Head and Neck Cancer #1

Hi guys am about to start my journey with Rad and Chemo to kill the beast,Onc.gave me the choice to have it or not, I told him I would decide this weekend.

Guess I'm trying to get some input on this thing I plan on working as long as possible and sounds like this thing could get in my way alot,I do warehouse work so this does not sound very conforming to what I do.LOL

                                                              Thanks for your input ED

                                                        

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    it PEGs the question

    Ed,

    For some the PEG is life or death, for some it is a struggle with or without and for a few it is uncomfortable but doable without.

    For me, I had two, but looking back I may have been able to wing it, as I always managed to drink 1 meal a day.

    My first one was the PEG from h _ _ _ and the second was pleasant enough.

    You get used to tucking it away so it is unobtrusive, EXCEPT you can’t sleep on it very well.

    Whether you should PEG or not isn’t for me to say.  I did have my second one during treatments without incident, so who knows.

    Matt

  • edreddog
    edreddog Member Posts: 19 Member
    CivilMatt said:

    it PEGs the question

    Ed,

    For some the PEG is life or death, for some it is a struggle with or without and for a few it is uncomfortable but doable without.

    For me, I had two, but looking back I may have been able to wing it, as I always managed to drink 1 meal a day.

    My first one was the PEG from h _ _ _ and the second was pleasant enough.

    You get used to tucking it away so it is unobtrusive, EXCEPT you can’t sleep on it very well.

    Whether you should PEG or not isn’t for me to say.  I did have my second one during treatments without incident, so who knows.

    Matt

    Anythings Possible

    I guess I'm leaning real hard against it but at the same time dont want to be wondering round whining cause I cant choke down water! guess nobody said its gonna be easy but I wouldnt mind hearing that! I have been reading up on alot of these posts and man you guys have really helped alot it sure is good knowing others have an understanding of whats happening,maybe with that help and my wonderful wife of 36 yrs. I can tough through it.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    PEG

    When we found out that my husband had laryngeal cancer, our doctors wanted him to have a PEG before treatment started.  We were told easy to insert and easy to remove.  They also talked to him about having a port for the chemo.  He decided to go with the PEG tube but not the port. He had no problems with the PEG but half way thru chemo he needed the port because the chemo (Cisplatin) collapsed his veins.  He needed the PEG because the radiation did a job on his throat.  When he had surgery we found out that the radiation had closed off the back of his throat and it had to be reconstructed.  He was able to swallow again 6 weeks after surgery.

    A year later after a second primary was diagnosed at the cervical of his esophagus, at first they decided against the PEG but then changed their minds after learning of all the trouble from the first round of radiation (different doctors).  So another one was inserted and we were thankful they did.  Once again the radiation did a job on his throat but thankfully they were able to open his throat.  He is still on a PEG because he can't swallow at all now due to the second primary.  He had to have it changed last summer and it was done by hospice with him reclining in his chair.  He has had no problems with having a PEG tube, others do have problems.  Just remember everyone is different and many don't need them and many do.  Just like many have their opinions for and against them.  My advice would be to follow what your doctors say.  If you don't need it it can be removed and my husband always tapes his to his skin and has no problems with that. I have read where some use an ace bandage around their body and put the PEG in it and have no problems.

    Wishing you peace and comfort -- Sharon

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    and another thing

     

    Ed,

    Regardless, of PEG or no PEG you need to keep drinking lots of water (some type of liquid) and swallow, swallow, swallow.

    Practice swallowing was the best and easiest advice I received from the H&N forum.  I still drink around 10 glasses a day.

    Keep swallowing,

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    I wasn't given the choice....

    ...I was a feather weight when I went into treatment and so they just put one in like it was the standard thing to do.  I...having no experience in the cancer world, thought ok.  I managed all through radiation and the first three chemo's to avoid using the little bugger....I even asked my Onc to have it removed now that rads were over, and he said nope, let's wait.  Within 3 days of the first adjuvant chemo (Cisplatin and 5FU).....my mouth turned to bleeding hamberger and I found myself looking at my tube and loving it Laughing .  She was my best friend for the next three months.

    There are folks that made it all the way through without one....Skiffen and Don Foo come to mind....and a number who got them later in treatment when they realized it was getting too difficult to get enough nutrition and hydration....and one person on here who got his the last day of rads....

    Tube or no tube though.....you're going to have to swallow something every single day....it's going to be your mission.  You don't want to lose your swallowing abilities.....

    Not much help, huh?  There are ways to keep it contained during the times you aren't using it, tho....so it isn't too much in the way.

  • donfoo
    donfoo Member Posts: 1,771 Member
    to PEG or not PEG that is the question....

    I was a hardliner NO-PEGGER early on. My current stance get one if you really need it. This means it all depends on your specific case, simnilar to doing surgery or not. If you have plenty of weight to lose, then you can afford to shed some pounds. If you were like P, at 100 going in, you can't afford to lose any weight.

    Your team may have different views on the topic. Some say wait until you need it as you really want to do everything possible to retain your swallowing after treatment. A number of folks do have swallow issues post tx. Would they might have not had some of these issues if they forced food and water down their throat? Some doctors just make getting a PEG a checklist item. If the doctors are split on this issue, then there are definatelty two camps, and both have valid points.

    PEGS do come with far more issues than no PEG. Just getting one is a procedure with issues getting them in and "comfortable" having a tube stick out of your belly 24-7. There are reports of them causing all sort of other nuisance issues - smells and such. Then there is the issue of getting the right "food". Some report issues with unsettled tummies, feeding too fast/slow, etc.

    You can always get a PEG when you need it later. It is no more an issue later than earlier. It think you can not use it for maybe 48 hours but you are not going to starve any sooner from the wait.

    In hindsight, we all forget painful memories more than nice ones but in the totality of the suffering I went through, the actual pain associated with eating pales in comparison from the pain of mucositis, debilitating side effects of chemo (down on my back eight days straight once) and many other harsh memories. I got the pre-eating pain plan down pretty wekk and it was bad but pain from other effects are far more painful.

    I did lose aobut 30 pounds which was perfect - a free diet plan. Sweet/sour - I got it all back.

     

    Good luck,

    Don

     

     

     

  • MrsBD
    MrsBD Member Posts: 615 Member
    PEG

    There is no simple answer. I posted this on another thread, but will give you my thoughts again. Because of the location of the cancer, I had chemo (Erbitux ) and radiation, but no surgery. It was never suggested that a feeding tube be installed although they did put in a port for chemo. I lost 40 pounds over the 8 weeks of treatment and the month following. Being a little on the "fluffy" side, I was okay with it, but the dietician and doctor were not happy. Losing weight can indicate lack of nutrition. They gave me fluids several times when I just couldn't bring myself to swallow anything and really pushed for me to drink Ensure or a special protein broth I made at home. I'm glad they didn't put in a PEG, but I would have followed my doctor's advice on it. One can be put in later, but you will not feel very good or strong at that point. You'll be in my prayers as you start this chapter in your life. 

  • edreddog
    edreddog Member Posts: 19 Member
    Gonna go for it

    nothing ventured nothing gained! I just need to go forward and hope I get it right,we'll see in time. Doc says he thinks I could do it but I think he's wanting to just be safe. Thanks for your input guys your the best!

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    get it

    My husband never used his for more than irrigation but we were told that putting it in after problems start can be a nightmare.  Jim never regretted having it.

  • AndrewP16nose
    AndrewP16nose Member Posts: 23 Member
    PEG is my friend

    I didn't get my PEG inserted until I had ended up malnourished and dehydrated- this was 2 weeks into treatment. I'm now 12 weeks post treatment and have no saliva or smell or taste. I still use the PEG although more for top ups but am so glad it's there. Wish I'd had it done before I ended up in a sorry state

  • avisemi
    avisemi Member Posts: 172
    Hi,
    As you can see, this is

    Hi,

    As you can see, this is the right place to find answers and support. My husband's doc wanted the tube placed since the begining. My dad who is the chief of surgery at the oncology hospital he works for suggested we wait since we would not know how he would react and if he would need it. We almost went with what my dad said. Though at the end we decided to do it up front just in case. We are glad we did! By the time Dima started using it, he was already dealing with enough stuff as to want to have had one more thing to do. The procedure was not hard/bad/long. Rather, by then things just were hard all around. He has had the tube since early September. It only bothered him at night since he could not sleep on his stomach anymore. We are probably getting it off soon. He doesn't use it anymore but he is not gaining weight and the doc does not want to take it out until he gains some weight.

    I wish you the very best. I hope you journey through treatment is full of support, healing and blessings.

     

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    edreddog said:

    Gonna go for it

    nothing ventured nothing gained! I just need to go forward and hope I get it right,we'll see in time. Doc says he thinks I could do it but I think he's wanting to just be safe. Thanks for your input guys your the best!

    Good Idea

    I fought the tube and my doctor finaly said you are going to get a tube and was very firm.  Almost to the end I did not need it and cursed the doctor.  Then right towards the end boy did I need the tube.  Without it I would have been down to no weight and while I did not keep it too long after my last treatment, about a month.  It was a good choice for me, I know others got away withoug one.

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Ed

     

    I went through treatment twice with no PEG, but about 3 years ago I lost the ability to swallow and now live on a PEG tube every day. It is not all that bad, had I knew then back in treatment how easy it was I would have got a PEG each time

     

    Here is a PEG to you my friend

    Tim Hondo

  • Super-b
    Super-b Member Posts: 26
    To me the PEG was my line in

    To me the PEG was my line in the sand. I did not get one. But as it turned out I did not have the swallowing problems that many seem to have. I am so blessed in those regards. Though I did loose about 70 lbs.

    what it boils down to is you have to do what is best for you. 

    Good luck with everything

    Bill

  • edreddog
    edreddog Member Posts: 19 Member
    Super-b said:

    To me the PEG was my line in

    To me the PEG was my line in the sand. I did not get one. But as it turned out I did not have the swallowing problems that many seem to have. I am so blessed in those regards. Though I did loose about 70 lbs.

    what it boils down to is you have to do what is best for you. 

    Good luck with everything

    Bill

    Thanks to all

    of you guys and your heart felt advice but I have decided not to go with the peg tube,I understand that I have a hard road ahead but am hoping for the best I can get. My Docs and a nurse on my team feel I am healthy enough and a young 55 that I should be able to get through treatment,besides I can stand to loose a few lol. Once again guys I thank each and every one of you for your kindness and unselfishness in helping me with this and am sure others I wish a healing and well being for you all.

                  Thanks Ed