Suggestions to get through with no PEG tube

I just finished 35 rads and 7 weekly rounds of cisplatin 2 1/2 weeks ago.  My doctors recommended I get it installed just in case.  They told me better to have it and not need it rather than not getting it and need it in the middle of treatment.  Boy I'm I glad did!  I couldn't eat by week two.  It was a life saver for me. I can imagine the pain your husband is going through.  I still use it to this day although I did try food for my first time today.  Don't think I'm ready ready yet.

 Anyway, if you option having one installed, do it asap.

Keith 

My husband put in a PEG before treatment.  At first he was discouraged by having a PEG and had a hard time adjusting to it.  It did not take long though before as my husband said he flipped his mindset and came to see his PEG as his "food friend".  My husband is working toward getting his PEG out.  I think by the 16 week post treatment point he will have it out or be close.  My husband had a difficult time during treatment and for 2 weeks post treatment especially as he took more chemo.  He says he would not have made it through without the PEG.  He was very faithful about doing all of his swallowing exercises during treatment.  He did try to take in anything by mouth that he could.  Our treatment team was very aggresive in managing side effects and he still ended up in the ER once, even with a PEG.  This week he has had days when he has taken in all of his calories by mouth.  We have been out to a restaurant.  No one wants a PEG tube but I think it is a little like pain meds.  Fight the cancer don't fight the pain.  Good nutrition and hydration are a huge part of healing and ending up getting a good quality life back as soon as possible after treatment.  I would also say fight cancer don't fight whatever it takes to get your life back, including a PEG if you need it.  VHC BOOST has 540 calories in an 8 oz box.  If he is taking in less than that at a time, you might consider trying VHC.  We could only get it off of Amazon.  The Vitamix website has a lot of smoothies that you can adjust to increase the calories.  My husband simply could not tolerate smoothies made in a traditional blender.  The texture was awful to him.  For my husband much of it was also controlling side effects, pain and constipation.  Part of it is just counting the calories and liquids that go in.  If he cannot take in enough you really have to think about what that means and talk to your treatment team.  Our speech path suggested priming the throat with warm organic herbal peach tea.  That and chilled apricot and peach nectar were things he could tolerate when he was at your husband's point in treatment.  Some people make it through without a PEG not because they are tougher but because you everyone's body responds differently to treatment.  A PEG is not for weak people anymore than meds for constipation or pain are.  The goal is curing cancer and getting your best life back.  We just always kept that in mind and purposed to do whatever it took to get there.  I did not want my husband to use Boost when we started.  I wanted to give him real food.  Well, it did not work out that way.  You have to adjust to meet the cure goal, if needed.  I learned real quickly that if VHC Boost was going to save his life, I would just say thank you Nestles.  I have my sweet husband back working and happy and eating real food.  The time you need a PEG and VHC Boost can be just a matter of months.  Try everything but do anything you have to and feel like a warrior while you do it.  You will get through. 

My docs had me get one in before I started. Hated the idea of a gtube but boy it is definitely a life saver. By week 3? I lost all taste, why eat when food doesn't taste like food? I was droppin too much weight in a short amount of time but once I started using the tube, I've been able to stabilize my weight. 

Because of his issues right there, I encourage getting a peg. 

It sucks to have yes, an inconvenience but so worth it, you need to keep up your nutrition during treatment. Very important! 

I did not want the tube. I believed I was "stronger than that." Eventually I acquired mucousitis and could not eat from the pain. I lost 20 lbs in what seemed like a week and basically didn't talk for about a month. I am 3 months post treatment and have a tough time with dry mouth so it's taking me some time to get off the tube but it saved my bacon and put 15 of the 45 pounds back on.

its oddly convenient to be able to accomplish a meal in 5 minutes, but inconvenient to have to cart the kit around if you are out. 

Bottom line is it might have to happen whether you like it or not. my decision point was affter being hospitalized and unhealthily skinny. at the end of the day some hate it but for me it's not a terrible experience 

What I did, and all I did, was eat as much as I could every chance I could until I couldn't eat.

Then I switched to Ensure "Enlive" at 350 calories each and drank six per day in three sessions, usually unhappily, and quickly.  This went on for far too long.

I wanted a PEG to head-off problems and they wouldn't give me one until I needed it.  I never dropped enough wait for them to declare I needed it.

I rejected the nasal feeding tube twice, and asked for a PEG and was told no, it was not recommended. The alternative was that I had to feed by mouth. Initially it was tough going, only fluid type food. I hated  anything that was pureed, so the next step was solid, but runny food. At about a month post last radiation day, I managed a plate of cereal and two poached eggs. Since then I eat pretty much of anything, my taste buds are functioning normally and anything likes of bread, scones, or dry food I wash down with coffee or water. 13 weeks out I recently had my 65th birthday and although I can eat most things, I had seafood chowder as eating normal food is slow and I didn't want to be in the restaurant after closing time

HPV-OPC in top right lymph node, and only had low-dose radiation. About one month after radiation my throat became very raw and soar.  It was impossible to swallow anything with any size or texture.  I found 'Orgain', a plant based protein drink powder.  Mixed with almond milk it made a delicious drink and didn't hurt my tongue or throat.  That was about it for two months.  In the morning an egg soft-fried in butter, as it slid down easily.  Lost 35 pounds.  Now, 7 months past radiation I still use it, as my throat and tongue are still very soar and I have trouble with taste, and of course, no saliva.  Did anyone else have this very soar and raw tongue, red with fissures in it?  Thanks if you can help.

My husband has BOT cancer.  He is in his 5th week of radiation. 2 more weeks of radiation and 1 more chemo to go. It has been rough. He has no appetite, no taste and his throat is sore.  No PEG.  Dr.s do not want him to have one as you need to keep your throat muscles and swallowing function working so your throat does not close up due to the radiation. You need to keep swallowing. He eats eggs fried in butter, tuna and noodles - basically anything on the soft side.  I, also, give him 4 of the Boost VHC or Scandishake everyday and sometimes add some extra whey protien to those.  I believe one of the main reasons he is getting through this is that he drinks 2 oz. of aloe vera juice 2 times a day. Once right after (never before) radiation and the second one in the evening. It really, really helps with the sore throat and allows him to swallow with much less pain.  I, also, give him 10 gram of L-Glutamine powder mixed in 6 - 8 oz. of water (must be cool or room temperature) 2 or 3 times a day - or every 8 hours. This will help prevent mucositis and peripheral neuropathy.  He has had none of these.  Pre cancer diagnosis my husband had lost 10 lbs. Now, he has gained back 5 lbs and so far is maintaining. This is my husband's 2nd cancer. He had vocal cord cancer 12 years ago. We did the same as above and he came through with flying colors. :-)  I expect the same this time. 

Good Luck to all with this horrible cancer. It is really rough to get through - but, you CAN do it!

I had a very soar throat for the two months after radiation finished.  Couldn''t eat much, everything hurt and taste awful.  Lost almost 40 pounds.  I found the product 'Orgain' very delicious and it did not hurt my throat or tongue to swallow.  It is a plant based protein powder that mixes up into a chocolate drink that is SO much more delicious than Ensure or Boost.  Available at Whole Foods, Costco, most health stores.  Good luck.  Also, an egg fried gently in butter each morning slid down my soar throat easily...got more protein that way.  Hydrate, hydrate and hydrate is very important!

Andy13460 said:

Getting through without the PEG

Hi there,

No PEG In Ireland they dont want us to stop swallowing or stop trying to eat

1 make sure your radiotherapy nurses are keeping on top of your pain medication

2 magic mouthwash and baking soda/water and keep sipping and swallowing water all the time,

3 electric tooth brush with soft bristles and a none foaming toothpaste these 3 things are to keep your mouth in the best condition you can.

Food wise I managed 2 eat soft boiled eggs, plain icecream and drink cold cows milk all the way through. The Radiotherapy nurses put me on Nutricia Fortisip + compact fibre full nutrition shakes 125ml bottle = 300 calories 12g protein used 6 a day    http://www.nutricia.ie/products/view/fortisip_compact  

I also had the Enshake chocolate milk shakes with 600 calories if I needed to get my numbers up

Im 3 weeks out of treatment today and eating ok just a slight sore throat left from treatment, taste is about 80% back saliva about the same. I put on 20 lbs before treatment and lost 18 lbs from start to now, Im still 4 lb over my normal average weight.

Good luck with everything.

Andy

 

Andy,

 my radiation oncologist does not want me to have a PEG for the same reason, to keep me swallowing.  I'm glad for that and am surviving on Ensure Alive (350 calories), cold whole milk, eggs and buttered soft bread with crust cut off. Have 2 weeks of radiation and two cisplatins left.  My chemo today was cancelled due to #granulocytes too low. Doing seven weeks of lower doses rathere than three mega doses, three weeks apart. You're in Ireland? Sounds like that is the preferred European protocol, first developed by the French.  A lot of people on the higher doses can't do more than two rounds.  Glad your doing well and sounds like 2-3 weeks post-treatment things get better.  Thanks for your post, it was helpful.