Starting Week five. What about the feeding tube?

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Hi everybody,

I've been reading some of the recent posts and I'm getting very worried. I will be starting week five of six in a couple of days. My throat is getting very sore, but after a couple of pain pills, baking soda rinse and magic mouthwash, I can start swallowing after I get up in the morning. Even so, eating is a real challenge and very painful. For this reason, even though I have only two more weeks, I was considering getting the feeding tube, because I'm afraid the pain could still get worse and I'm just about at my limit. I would love to hear the pros and cons of feeding tubes and also how it went after the treatments stopped. How soon do most people see improvements in pain level and general ability to eat without a lot of difficulty? I just read that Phannie has had her tube for two years?! Please let me know what is the deal with this?

You are all wonderful people and it breaks my heart when someone reports a recurrence.

 

Thanks, all.

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Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Decisions..

    That's going to be something you and your MD's decide...

    I never had a PEG, so I can only offer my experience and opinion.. Around where you are , or even before.. I just swapped over to Ensure Plus, and slippery jarred peaches.. I figured I'd get more bang for the buck. For the energy, discomfort and lack of enough food intake.., I swapped over to liquids. Just eating the peaches primarily to keep the throat working.. I'd set up a glass or two of water, a few Ensures, a few peaches, and a crushed up percocet in a little water.. I'd take a teaspoon of the magic mouthwash, or liquid oxicotin to numb the throat up.., dink an Ensure, some water, peaches, a little more Ensure, and chase it with the percocet to knock the edge off of any pain to come..

    Pretty much my routine for several weeks.., until I could start eating creamy pasta, things like that.

    But everyone is different.., what worked for me, maynot for you..

    Worse to worse, the PEG was always an option..

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Oh...no....I had my PORT

    for two years, not my feeding tube.  I got my feeding tube in April 2012, and it was taken out in November of 2012....I loved having it when I needed it, but was glad to see it go.

    If you are having trouble getting in enough nutrition or hydration, then it's time to ask the Dr. for it.  One friend on here got his feeding tube the last day of rads....so it's never too late.  You're still going to be cooking for a couple weeks after rads are over, so it might be a good idea to run this by the Dr. now.

    p

  • MrsBD
    MrsBD Member Posts: 617 Member
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    Feeding Tube

    Definitely talk to your doctor for pain management options and to your nutritionist who can make suggestions for easier foods to eat. You are almost done with treatment and after that you'll have a few more weeks of the intense pain you are experiencing now. I had 8 weeks of chemoradiation, without a tube, though they did give me some pretty strong drugs to help with the sore throat. Eat and drink whatever you can so you maintain your ability to swallow and keep up your strength. You are almost done!

  • Barbaraek
    Barbaraek Member Posts: 626
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    It's all very unique

    to the individual, it depends on factors like your tolerance to pain, the length of your treatment, whether you had weight to "spare" in the first place, how bad your mucositis is, and probably a million other factors. I think the best thing you can do is consult with your doctor and the nutritionist that works with the head and neck team where you are being treated. Some places like to put it in way before hand, so you have it when you need it and they are not doing a procedure when you are immunocompromised. Other places take a wait and see approach thinking that it's better not to do an unnecessary procedure if you don't need it. There is not a definitive right or wrong answer here.

    My husband got his PEG the second week of treatment, and he still has it now because swallowing still hurts a LOT. His last rads were 7/17 and the last adjuvant chem was the first week in September. Mind you, he was way on the far end of the bell curve with mucositis (very severe). Without the tube, they would have had to resort to TPN (total parenteral nutrition). His pre-diagnosis weight was 158 and he was a lean, muscular guy...so he didn't have much to spare...another reason why the tube worked out for us.

    We are now weaning off by taking in more calories/protein by mouth...pureed soups, yogurt, Boost, but he'll still have the tube until he can gain weight without it.We've just always considered it another tool in the toolbox to help us get through this fight.

    Good luck with your decision, and yay for you...you're on the tail end of treatment!!

    Barbara

  • ocmark
    ocmark Member Posts: 26
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    Skiffin16 said:

    Decisions..

    That's going to be something you and your MD's decide...

    I never had a PEG, so I can only offer my experience and opinion.. Around where you are , or even before.. I just swapped over to Ensure Plus, and slippery jarred peaches.. I figured I'd get more bang for the buck. For the energy, discomfort and lack of enough food intake.., I swapped over to liquids. Just eating the peaches primarily to keep the throat working.. I'd set up a glass or two of water, a few Ensures, a few peaches, and a crushed up percocet in a little water.. I'd take a teaspoon of the magic mouthwash, or liquid oxicotin to numb the throat up.., dink an Ensure, some water, peaches, a little more Ensure, and chase it with the percocet to knock the edge off of any pain to come..

    Pretty much my routine for several weeks.., until I could start eating creamy pasta, things like that.

    But everyone is different.., what worked for me, maynot for you..

    Worse to worse, the PEG was always an option..

    John

    Feeding Tube

    Hi John

    Your answer was somewhat encouraging. So far, I haven't lost any weight: 190 lb at 6'3". I'm eating banana shakes with extra protein, oatmeal, peaches or applesauce for breakfast. I usually have scrambled eggs for lunch and either Cream of Chicken or Homestyle Campbell's Chicken Noodle Soup for dinner. I was overjoyed when I discovered I could eat that particular type of Chicken Noodle soup. Then I throw in a couple of Ensures if I'm still hungry.But it is becoming more challenging as it becomes more painful. After a few more days, I might be able to increase the Ensures and cut out some of the more solid food I'm eating. I'm still concerned about what seems to be extended recovery times, though. My Doctor left the feeding tube decision in my hands and has not offered any useful advice. Now I'm thinking I'll tough it out a little longer.

     

    Mark

  • ocmark
    ocmark Member Posts: 26
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    Oh...no....I had my PORT

    for two years, not my feeding tube.  I got my feeding tube in April 2012, and it was taken out in November of 2012....I loved having it when I needed it, but was glad to see it go.

    If you are having trouble getting in enough nutrition or hydration, then it's time to ask the Dr. for it.  One friend on here got his feeding tube the last day of rads....so it's never too late.  You're still going to be cooking for a couple weeks after rads are over, so it might be a good idea to run this by the Dr. now.

    p

    Ports vs. Tubes

    thanks for you prompt reply, Phrannie

    I seem to stumble over some of the terminology.Soif the port isn't the tube, then I assume it's some sort of pick line for your chemotherapy?

    Cooking for two more weeks? So, I'm still not too clear on when people actuallyt start to feel better. My doctor has said things like" The sore will peak around the end of the 4th week and you may actually start improving before the treatments are over." another one is Most of the damage is cleared up after two weeks."  Am I being walked down the garden path?

  • phrannie51
    phrannie51 Member Posts: 4,716
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    ocmark said:

    Ports vs. Tubes

    thanks for you prompt reply, Phrannie

    I seem to stumble over some of the terminology.Soif the port isn't the tube, then I assume it's some sort of pick line for your chemotherapy?

    Cooking for two more weeks? So, I'm still not too clear on when people actuallyt start to feel better. My doctor has said things like" The sore will peak around the end of the 4th week and you may actually start improving before the treatments are over." another one is Most of the damage is cleared up after two weeks."  Am I being walked down the garden path?

    Many of the people I've

    met on here say the two weeks after rads can be the worst, and then improvement begins...now that isn't everybody, of course....but many found the mucous and the "hurt" continued during the cooking time.

    When I finished rads, I immediately started in on another 9 weeks (3 treatments) of chemo...cisplatin and a fanny pack of 5FU (the FU part stands for exactly that...and we can't curse on here Smile).  I may or may not have been miserable after rads, it was hard to tell because the 5FU carried a misery all of it's own. 

    I was eating soups and drinking my Boosts 3 weeks after my final chemo, tho....

    p

  • wmc
    wmc Member Posts: 1,804
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    Keep up the good work

    You are doing good so keep drinking water also, lots of water and ensure too.

  • BarryChen1010
    BarryChen1010 Member Posts: 27
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    This definitely a decision

    This definitely a decision need to make. I had peg-tube before treatment, but I rarely used it. In the last two weeks, my mouth soar was hard, but I can still tolerant ensure. I did use peg-tube to have 2-3 formulas, with 3 ensures. But I think I can also keep my weight probably to have like 6-8 ensure without peg-tube.

    Some people had pain after installing peg like me. It spent 3 days to go away. I lost a few pounds for this. So if you are similar, the benefit will even be less.

    Also, you can probably ask for magic mouth wash and rinse (swallow a little bit if throat soar) before eating which helped a lot for me after treatment to start eating real food.

  • lornal
    lornal Member Posts: 428
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    Peg

    I didn't get a PEG tube for my first cancer in 2007.  I can say I reget that decision.  I had to have one placed in 2013 when eating became hard (turned out to be another cancer in throat - just didn't know it for several more months).  Once I got it put it- I felt so much better - Never knew how important hydration was.  If I had the first time - I think I might have healed much quicker than I did.

    If I ever need to go through chemo/radiation again - I will get the PEG (this last one was super major invasive surgery - but no chemo and radiation needed)

    Lorna

    2007 & 2014

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Pegless, but Ported Too

    LOL..

    Like Phrannie..., I too had the port for a few months over two years.., my onco likes to keep them in tghat long as that's the highest potentioal timing for recurrence I guess..

    As for cooking, and pain..

    Myself, though I did swap over to liquids week 3-4 or so of rads.. It didn't really get much worse.., it just never got batter either until about 4-6 weeks post rads.. Then I started feeling adventuorous enough to try soft slippery foods.

    The PEG has always been a source of high discussions here..

    Some swear they would have never made it without one, some think it should be mandatory up-front. Otheres like myself, made it through just fine without one.., knowing if needed I could get it.

    If I had been prescribed one, I would have trusted my MD's decision.., It wasn'r prescrubed, but I was made aware, that if it became needed, it would be put in.

    Best,

    John

  • rcaulder
    rcaulder Member Posts: 70
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    Peg

    I made it without a PEG. I don't regret that. My Dr did leave it up to me. I also just drank Boost and Ensure and chicken broth the last few weeks. Yes , the last few weeks are hard along with the following few months of recovery. You will be OK if you will yourself to be OK.  I think the choice is yours at this point.  Bottom line is your body needs nutrition for healing. This can come from forcing yourself to eat or using a PEG. The advatage of eating it will excersise your ability to swallow.

  • ocmark
    ocmark Member Posts: 26
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    wmc said:

    Keep up the good work

    You are doing good so keep drinking water also, lots of water and ensure too.

    Hydration

    I'm definitely drinking a lot of water and I just started increasing the ensure due to the fact that I'm eating lees real food at this point.

  • ocmark
    ocmark Member Posts: 26
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    Skiffin16 said:

    Pegless, but Ported Too

    LOL..

    Like Phrannie..., I too had the port for a few months over two years.., my onco likes to keep them in tghat long as that's the highest potentioal timing for recurrence I guess..

    As for cooking, and pain..

    Myself, though I did swap over to liquids week 3-4 or so of rads.. It didn't really get much worse.., it just never got batter either until about 4-6 weeks post rads.. Then I started feeling adventuorous enough to try soft slippery foods.

    The PEG has always been a source of high discussions here..

    Some swear they would have never made it without one, some think it should be mandatory up-front. Otheres like myself, made it through just fine without one.., knowing if needed I could get it.

    If I had been prescribed one, I would have trusted my MD's decision.., It wasn'r prescrubed, but I was made aware, that if it became needed, it would be put in.

    Best,

    John

    Proceeding with Rads

    I had my Monday Rads after taking the weekend off. Week five sarts on wednesday. It's amazing how the days keep clicking over. I had chicken Noodle Soup for lunch and Cream of Chick soup for dinner, with a couple of Ensures thrown in. It took some time to eat and my tongue is REALLY sensitive, but it can be done. I'm just going to take it one day at a time and see how long I can keep going. My mouth didn't get noticeably more sore after today's treatment, so maybe I can do this.

  • Barbaraek
    Barbaraek Member Posts: 626
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    ocmark said:

    Proceeding with Rads

    I had my Monday Rads after taking the weekend off. Week five sarts on wednesday. It's amazing how the days keep clicking over. I had chicken Noodle Soup for lunch and Cream of Chick soup for dinner, with a couple of Ensures thrown in. It took some time to eat and my tongue is REALLY sensitive, but it can be done. I'm just going to take it one day at a time and see how long I can keep going. My mouth didn't get noticeably more sore after today's treatment, so maybe I can do this.

    Good for you...

    Just keep ticking off those days...they do go by. One foot in front of the other. I'm glad your mouth sores and pain didn't get any worse. You are more than halfway through your rads...this is GOOD! The soups are a good idea. If you can do yogurt (even if you thin it out with some milk or fruit juice) that's a giid source of protein, though be careful since dairy can increase mucus for some people too. Stick to what works in terms of you being able to swallow.

    Barbara

  • luv_freedom
    luv_freedom Member Posts: 49
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    I ended up getting a peg tube during week 4 because the swallowing got to hurting so bad. I was going through a bottle of magic mouth wash every few days. Its a simple procedure and if the pain gets to be too much like it did for me, don't feel bad for it. My last treatment was 9/21 and Its taken a good 3 to 4 weeks before I started feeling like I was healing from the rad treatments. I couldn't get enough intake and kept losing weight. Doc said at least 2 months with it. It really depends on how fast I can get back to eating. I just started eating small amounts of solid food this last week. It is a slow process of healing with this type of treatment. I found that out and this is a great site with people that will give you a heads up so you won't be surprosed so much because you will know what is coming and what to expect. That alone helped me keep calm and sit back and wait for the healing to complete on it's own timeline.

     

    Good luck

    Gary

  • JM0377
    JM0377 Member Posts: 18
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    ocmark said:

    Proceeding with Rads

    I had my Monday Rads after taking the weekend off. Week five sarts on wednesday. It's amazing how the days keep clicking over. I had chicken Noodle Soup for lunch and Cream of Chick soup for dinner, with a couple of Ensures thrown in. It took some time to eat and my tongue is REALLY sensitive, but it can be done. I'm just going to take it one day at a time and see how long I can keep going. My mouth didn't get noticeably more sore after today's treatment, so maybe I can do this.

    Week Five

    Hi,

     

    I'm also starting week five on Wednesday. My mouth sores began last Thursday. I have them on my gums, tongue and inside of cheek. It hurts to eat, but I just make myself do it anyway. I finally got some pain meds (or at least Germany's version of a pain med) on Tuesday. I use the magic mouthwash right before I eat. It numbs my mouth just long enough to eat. My biggest motivator was to NOT get the PEG tube, so I've been doing whatever I need to do. The docs here in Germany are really big on sage tea. My doc tells me it is really supposed to help with the inflammation. Apparently, it is the cure for everything here. :) Hang in there....we can do this! 

    Jen

  • Mikemetz
    Mikemetz Member Posts: 465 Member
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    PEG = umbrella

    Everyone has been very informative, so I don't have much to add.  But think of the PEG like you would an umbrella--it's better to have it and not need it (much), than need it and not have it.  As everyone has said, it's a decison best made by you and your doctors, but if in doubt, grab your "umbrella."

    I now have my second one.  Both were life savers, as I was not even close to being able to eat orally--so my decisions were easy to make.

    I'm now in the process of weaning myself off the second tube, and working towards not using it at all soon.  If I can not use it for 2 weeks straight, and maintain my weight, it can come out.  Hopefully, well before Christmas.

    Mike

    (Sorry to the long absence, but life in and outside of Cancer World has been busy lately)

     

  • donfoo
    donfoo Member Posts: 1,771 Member
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    Personal choice..

    I made it through without one and it was the right decision for me. There is increased risk of long term swallow issues with a PEG as some are not exercising their swallowing once the PEG goes in. Both my ENT and MO preferred going without a PEG and having once placed if needed down the road.

    The pain and sores were very challenging to survive but I'm sort of the old school and hear the little voice wispering "no pain - no gain". 

    You'll need to take in the various factors and make your own decision. We all make it through one way or the other. I have never anyone who needed one and did not get one then suffering from excessive weight loss, compromised health conditionb, or other log term side effects. And it is rare for things getting so bad a TPN was necessary due to not using a PEG.

    Having the PEG does relieve the oral pain while eating but for many your mouth is suffering pain big time anyway. Either way, it is a tough slog and no free passes.

    Good luck,

    Don

  • TracyLynn72
    TracyLynn72 Member Posts: 839
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    PEG for me

    I had a PEG put in late in the game.  I only had 1 1/2 weeks left of rads and started vomiting all day, every day.  I couldn't eat or drink anything but water (and keep it down) for FIVE whole days.  They decided that I was dehydrated and showing signs of malnourishment, so they put in the PEG.  It literally saved me and gave me energy to finish the treatments.  I was terrified and did NOT want it, but I am glad I did.  It was not really too big of a deal getting it in or removed.  I wish you all the best!!