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5 Weeks Post Treatment - Need to Transition from Peg

Ron Silver
Posts: 73
Joined: Apr 2013

I am now 5 weeks post treatment, and I need to transition from PEG.  (7weeks/35 rads, and 7 weeks cisplatin). Lost 35 lbs.   Swallowing water fine, Boost can do but tastes like cardboard and towards the end of the bottle induces the vomit reflex.  Pretty much the same with the smoothies I made.  Applesauce, pudding, everything, sip, food, sip, sip sip swallow.  

I quess I could get by with just one high calorie smoothie recipe that does not make me gag.  Anyone have a favorite that they actually look forward to slurping???

 

Also, cannot sleep, at all, ever.  Just lay awake.  Other than drugs benedryl etc, anyone have any suggestions?  You guys are great, dont think I could have got through this without reading your posts.

 

 

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

 

Ron,

I had my PEG popped at 2 weeks post and never looked back.  I could eat and swallow fine, but chose to not eat (very much) because of the “extreme” aversion I had to the feel and texture of most foods (let alone the taste no taste).  Instead, I got hooked on smoothies for 7 months.  My recipes were not that fancy, but I did have the nutritionist review them (and approved).  My motto was fast and easy (protein powder, nuts, fruit, half-n-half and a shot of canola oil for calories).  The SuperThread has quite a list for smoothies, check it out.

Whatever you do, whatever you eat and drink, find what works for you and makes you happy.  Learning to live with the side effects from H&N cancer are tough enough, learning to roll with the punches made my life easier.

Hey, one day food came knocking at my door and we are good friends again (with new rules).

Still learning

Matt

 

MarineE5
Posts: 747
Joined: Dec 2005

Ron,

A few suggestions that worked for me. Yogurt, with the fruit on the bottom, store brands when on sale. They have around 180 calories, yes, I know they have sugar in them, but I was going for calories. I also liked to butter some white bread and put it in the toaster oven to have the butter really melt into the bread. I would then make myself some tomato soup from a can, but instead of using water, I used milk, broke the bread apart and let it soak up the soup. It helped fill me up so I wasn't hungry.

Scrambled eggs with sugar free syrup (I like the Log Cabin sugar free syrup)  poured over them made them go down pretty smooth. Again, toasted buttered bread from the toaster oven helped fill me up. I would also make a Milk shake each day with a banana in it. Anything smooth/ soft was what I was after. I didn't get my PEG out until I was able to prove that I could gain weight, which was about 6 weeks.

My Best to You and Everyone Here

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

My swallowing was still very comprimised at 5 weeks so i went to 7.  Try smaller doses of the smoothie's and boost just more often may not trigger the reflex.  As for sleeping, is it physical or mental?  In other words, are you having trouble with mucous, or breathing or just can't go to sleep?

I'm just over 4 months post treatment and improvemnt has shifted from weekly gains to daily gains.  Things will get better but fixing your sleep issue is important.  Don't be afraid of drugs at this point as they can still be your friend.

Joe

fishmanpa's picture
fishmanpa
Posts: 1106
Joined: Jan 2013

Hi Ron,

Good stuff to hear! I'm 7 weeks post and started solids Memorial Day Weekend. I had to giggle at "sip, food, swallow" bit. I too am at that stage. "Chew, chew, chew, chew... sip and swallow, sip and swallow... repeat". It's more like exercise than eating but it is what it is for now.

I was recommended a Vitamix blender (thanks Foo!) and recently purchased one at a discounted rate. You can get 25% off a guaranteed reconditioned 5200 with a note from your doc. This thing is a beast and I've become rather fond of the milkshakes it makes. I use milk, coconut juice, vanilla ice cream, vanilla protein powder and a little vanilla extract (you can add fruit too) and after letting it "warm up" a few minutes, sip away. It's close to 600 calories! Fortunately I have my taste (I don't know why nor do my docs).

Softer foods are the ticket. Eggs, fish, potatoes, veggies, cheese pizza (sans the end crust) etc. are fine as long as I have my water. I'm about 80% tube but my goal is to have the PEG pulled the end of July.

Concerning sleep? I had the same issue, barely sleeping a few hours at a time until just recently. Use the benedryl as long as you need it! The worse that can happen is you'll have clear sinuses and be a little sleepy in the am. Eventually, as your body heals more it will get better. With me, I think lack of real sleep finally caught up with me and now I sleep pretty well, just awakening to wet my mouth and go to the potty (all the water ya know?).

Hang tough... it will get easier and better!

Positive thoughts and prayers

"T"

Ron Silver
Posts: 73
Joined: Apr 2013

Wow, thanks for all the replies.  Going to be trying all of the suggestions this weekend.  My sleep issue seems to be entirely mental/physical but does not appear to be mucus or throat related.  I am afraid to use the benedryl as I have read it can be addicting/problem with long term use.  You write that the lack of real sleep finally caught up with me.  How long did it take?  Thanks. 

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

If we were talking Adavan then I'd agree with you.  Over the counter Benedryl, pretty slight chance and YOU HAVE TO SLEEP to repair your body.

Joe

fishmanpa's picture
fishmanpa
Posts: 1106
Joined: Jan 2013

Hi Ron,

It was about where you are now that it caught up with me. I was in the sleep pattern of none to a couple of hours at a time for close to 5 weeks. I also was unable to sleep in a bed as I needed to be sitting up due to mucous and pain. I spent the first 5 weeks in a recliner. Starting around the end of the 5th week I tried sleeping in bed with a lot of pillows. I also started the sleep aid. Initially I was given Ambien which I tried once and won't use again. I took it and the next thing I remember is awakening naked on the bathroom floor not knowing how I got there! I also had Haldol which was given to me after a very bad reaction to steroids. I tried that and while it helped me sleep I didn't like the drowsiness the next day. Besides, it's a pretty strong psychotropic drug and I'm not keen on them. Finally I started the Benedryl. That's the ticket! I take one about 9-10pm and I'm out by 11. I sleep until I need a sip of water or a pee break but the sleep is restful. I'm back to sleeping in bed full time now and getting a good 8 hours and sometimes more. 

Like I said, don't worry about taking the Benedryl for now. If it helps you sleep then use it. Your body needs the rest. 

Positive thoughts and prayers

"T"

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

Your body needs the sleep. I liked the Mango smoothies from Burger King and had them daily. A year post tx, the thought of one sounds bad to me. Early on, I did good with any type of soft eggs and pancakes with plenty of syrup.

T...thought you were going to break into song with chew tobacco, chew tobacco, chew tobacco, spit....are we allowed to say tobacco?

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

<.thought you were going to break into song with chew tobacco, chew tobacco, chew tobacco, spit....are we allowed to say tobacco?>

Asked my medonc if I could ever smoke a cigar again.  His answer, it didn't give you your cancer and one a month will do nothing to harm you.  I didn't believe so I asked my ENT a week later.  His answer was two a month.  I'm going to err on the side of MAYBE one.

Still, was really suprised by the responses.

J.

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

All goes back to quality of life but I too am surprised they went out on that limb. 

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

He said, moderation. 

A very little of most things won't hurt you, he said unless you include arsenic.  :) 

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Joe,

 

Got an extra room???  I'm moving in with you until I get a consult from your Doc to let me have my stoogie once a month.  Unfortunately my docs say no more cigars for me.  They say the Cohibas didn't cause it, but no more smokin'.  Then again everyone on here says to get a second opinion.......maybe????..............................OK better not I guess, what scares me the most is my wife said she'd break all my fishing rods if she caught me with one (now that scares me!!). 

 

If you're decide to go for it,  blow a few smoke rings for me.

 

Greg

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Break your fishing rods....

I screamed like a girl when I read that..., LOL.

OK, you better hang up the cigar, there's fishin to be done...

JG

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

I could finally put something in my mouth....I too, was a soup and bread person......I tried nearly every soup made by Campbells and Progesso, but most stayed with the creamy ones....and I'd buy a loaf of French bread.....slather that bread with butter, and soak it in my soup.  Even tho I couldn't really taste anything, this was SO yummy to me.....

p

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Ron,

 

I thought this was mentioned in the Superthread, but maybe not.  I know it was brought up several times a few years ago when I first came onboard.  Anyway you might want to try melatonin or at least research it.  It worked for me and still does when I can't sleep.  It's a naturally occurring hormone that helps you get to sleep (ok, that's kinda what it does - didn't look it up again, just what  I remembered).   I think there have been studies done where it may be recommended for certain cancers also??? (Again, just recalling this info).  I checked with all my docs when I was having the same lack of sleep issue and they actually thought it was a good idea.  You can buy this at any health store and probably most groceries or drugstores.

 

As for smoothies, I was on the PEG for about 6 months post tx.  Drank all my meals during that time but to get enough calories supplemented with the PEG.  Either way, I experimented and just threw everything in the mixer until I hit on the ones I liked.  Like Marine, I loved syrup and for some reason I added bananas to everything (one of the few things I could taste).

 

Good luck it will get better!!!

 

Greg

JacquieinFrance's picture
JacquieinFrance
Posts: 14
Joined: Apr 2013

I find that physically making soup from scratch with a small piece of ham or chicken, lots of different veggies, a stock cube and lots of tlc is very therapeutic. I liquidise it and eat it (rather drink it as I have to make mine a bit watery) just pleasantly warm. Add bread well soaked if you can manage it. For extra protein throw in powdered skim milk, Philly cream cheese, powdered protein from the pharmacy, dried pulses such as split peas, anything's good for an extra few calories.

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