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New battle plan.. Need some advice

Isign4Him
Posts: 34
Joined: Jul 2012

Ladies and gentleman....... Need some advice, after a profound response to one of my post I realized he was exactly right.... "the fight is not against the cancer it's against the treatment..... So far my biggest problem with the "chemo cocktail" is my ability to stay fueled up ...missed several days of work because I was to weak to get off my butt I can still swallow but I'm battling a terrible reflux problem.. I need some ideas for Peg tube foods ....... I've had to go 2times already to be rehydrated and I've lost close to 8 lbs in 1week....... Don't want to give the treatment dude to much of an advantage when the bell rings for round 2....... So how do you stay hydrated and "ready to rummbblleee".....
Thanks, In Christ Kevin

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

each persons body reacts differently..but...

If you have lost 8 lbs in the first week, you may fall in the camp I fell into. I lost 70lbs in treatment, but did not start losing pounds until my 3rd week of the 7 weeks of treatment.

I ended up one time in the "your's not taking care of yourself" room :) ...and they gave me 3 liters of fluids before I even had to go bathroom...took all day.

Everyone has advice, here's mine.

As far as what to drink to stay hydrated...you MUST force yourself to drink 8-10 glasses of fluids a day such as water, gatorade or those drinks like boost, ensure. I used to drink ensure diluted with skim milk (the ensure was so rich and a little thick for my taste at the time) ...then I moved to all tube feeding by the 5th week....ensure, ensure, ensure is what I lived on. I would hand the bag and let it drip pretty fast...

I wish I had a more profound opinion...but the bottom line is to heal and stay well thru tx you have to have food / drink. I was told by my nutritionist you burn 4,000+ calories a day going thru radiation!!! Holy cow that's a lot of cals.

Best to you Kevin...still have you on that daily prayer team!!

Tim

ditto1
Posts: 630
Joined: Mar 2012

you are right Kevin its the treatment not the Cancer for now, and the treatment is a mean SOB and I swear if it was not a rattlemind talking I would sue them all for malpractice for what their drugs and machines and needles etc.. do to us. But now the fact is that is just being fussy to say the least, they are saving lives, and I believe I will be on that list. So yes you will be on the deck more than not over the 60 days, 1st go to your belief system, although I have had a few where were you when I needed you rounds in my personal spiritial arena. I digress. If you have a Peg the Peg folks are great, someone will post the Super Thread if you have not seen it yet. Just keep it up one day at a time and when you get hit so hard you see stars, thats just Gods backup screen till we come to and fight again. So I apologize for highjacking your blog for some griping but I have been reminded by many this is a long unpleasant fight, but doable, ONE DAY at at time. Good luck and God Bless.

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

First, you should talk to your onco..., acid reflux seems to be a problem with more than a few of us while on and after chemo.

I've been taking Protonix during and since treatment. Also on a two year endoscopy regime as a result.

Next...hydration, if you can't get enough into you, or even if you can. It's not uncommon to follow-up a few times after and in-between chemo treatments for hydration.

Amazing what running a bag or so of fluids through you will do, and make you feel.

You definitely don't want to get dehydrated...it'll put you in the hospital for a stay....

If nothing else you just have to get into a habit of drinking several glasses of water a day. If that requires meds for pain management, you do what you have to do...

And more than likley it'll help with your mode and motivation...feeling better is always a good thing.

SuoerThread

Best,
John

NoDuck
Posts: 132
Joined: May 2012

Kevin -- Hubby had terrible reflux that contributed to his weight loss -- could not keep enough food, even via the peg, down.

For the reflux, we used a Walmart brand Pepcid chewable. It's Pepcid with an antacid. He couldn't chew it so I crushed it, soaked it in water and put it thru his tube. Would also crush regular antacids and do the same inbewteen Pepcid doses. We also fed via tube smaller amounts more frequently, 60-120 cc syringe every two hours with about the same in water before and after. He still got dehydrated and ended up in the hospital for 6 days.

His dibilitating side effects hit early, within the first 3 weeks. About 6 weeks into the treatment he told his rad onco " you tell me what a good cure rate there is with this tonsil cancer. I want to know how many you lose to the treatment." his doc's response -- "not as many as we used to."

The treatment is horrific andi wish I could tell you it will get better. But you will probably suffer a lot more until you get better. There are lots of folks on here who are living proof that people live thru this. Hang in there. You are a fighter!

Deb

Isign4Him
Posts: 34
Joined: Jul 2012

What did your husband weigh before the treatment started ? And my onco gave some great stuff today for reflux ...... Had to mortgage the house to the pharmacy but it did wonders for the reflux after the first dose ..... In fact I'm getting ready to eat a nice bowl of chicken and rice the old fashioned way....
It's called carafate

In Christ, Kevin

NoDuck
Posts: 132
Joined: May 2012

He started at 185 which was about 15 pounds overweight. He's now about about 158. He lost 20 of that the first month. He started treatment 5/30, finished 7/19. He has continued to lose weight post-treatment but he has battled c diff, an intestinal bacterial infection. But the doc was pleased he only lost 1 pound last week.

Just this week he has been able to get about 2400 calories a day in. He has been peg tube totally since about the middle of the third week. He is at least starting to think about taking something my mouth.

Deb

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I did everything I was told to do and everything I could think to do and I still ended up being dehydrated. I had a PEG too and would put several ounces of Gatorade or broth or water thru the tube daily and still it wasn't enough. I added Popsicles, ice chips, whatever I could think of and still ended up in the hospital for a 3 day dose of hydration. I was so dehydrated that I didn't even pee until over 24hrs after I got there and was on continuous drip of fluids. Radiation Burns so many calories during treatment that that didn't help the situation either. I lost 13 lbs that week.
I think where I went really wrong was not admitting that I was in trouble. I let it go too long before going to the hospital. I had been getting extra fluids after my weekly chemo too but that still wasn't enough. To make things worse, I started throwing up.that's when the husband said, enough is enough and off to the hospital we went.
Listen to your body and go to your dr or hospital if you are feeling dehydrated. It's amazing how much better you will feel when you get a good soaking. After my little stint at the hospital they set me up for 3 times a week in their short stay infusion unit for about 5 hours of fluids. This continued for up to 3 weeks post rads. I'm so grateful that I did, it helps with healing too.
When you ger dehydrated it makes the toll of radiation so much harder and I'm sure others can vouch to that.
As for the reflux, I take protonix and it really helps me. This is not something that tums or pepsid can fix. Those just neutralize the acid but protonix, prilosec, nexium and such are called PPI or proton pump inhibitors. They actually turn off the pump that allows acid to back up and burn your throat.
Talk to your dr about one of those meds. Protonix is by RX but the others are over the counter.
Good luck with all of this info we are all laying on you. Get rest, and stay hydrated!! However you have to go about it!!!
Take care,
Billie

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

My 1st chemo tx kicked my butt, something I wasn't expecting. I spent the next 7-8 days going back for daily fluids. I was on Cisplatin and my ONC cut me back to half doses weekly. That worked especially well for me. I was extremely tired too, having to force myself to get up to eat, go to radiation and walk to the mail box for my exercise, then it was right back to bed. I had no trouble sleeping day and night. The only good part to the exhaustion was that I slept thru allot of nasty side effects. Once I went on the half doses of chemo I did not sleep as much. You hear of people going to tx and then to work but I don't think any of those people were head & neck patients. They say next to bone marrow patients, we have the roughest road. It's easy to keep a stiff upper lip when the lower lip is turned inside out with sores.
Stay hydrated and keep swallowing!

Laralyn's picture
Laralyn
Posts: 441
Joined: Apr 2012

I had some of the same issues, complicated by a bad reaction to narcotics (that shut my digestive system down and made me super nauseous). I used an IV stand and bag with my tube to make the feeding easier. I would alternate every two hours between a can of formula, and a half a bag (500 ML) of water. You can use Smart Water, or an additive like Drip Drop (http://dripdrophydration.com/) to get some electrolytes in there as well. You can even use Gatorade or something similar, although I wanted to stay away from that much sugar.

You may be able to get even more water down than I could, because my stomach was processing food and water so slowly (even with Reglan) that it really limited my intake. The tube doesn't just have to be used for food though! :-)

Mikemetz's picture
Mikemetz
Posts: 342
Joined: Nov 2011

I tried to take in as much fluid as I could through the peg tube, but got behind a few times and went to the hospital for some "top off" hydration infusions. No big deal--just listen to your body and do what it says it needs, even if 'logic' says otherwise. Everyone metabolizes the food and water from the peg tube differently, so there are no set rules to follow. "If you need it--get it."

Hang in there.

Mike

phrannie51's picture
phrannie51
Posts: 3685
Joined: Mar 2012

especially when my mouth is too messed up to take anything orally, I keep a 20 oz bottle by the sink, and about every 2 to 3 hours I pour 20 ozs of water down my tube. Dehydration is such a subtle thing....I thought I'd feel thirst, but no....I feel sick, naseated, weak, sleepy, and just now well....but thirsty never enters into what I feel. I just pump the water down via the tube and by the clock.

I'm glad to hear you found somthing for the reflux...that would be miserable. I only use Ensure and Boost...(and Boost I dilute with milk to thin it out and make it go down the tube faster)...I haven't tried any of the homemade "tube foods"....

Tho, now that I'm thinking of it...Magic Mineral Broth was a big hit on here a couple months ago....it is SO tasty (even when you can't taste anything else)...it's nutricious, and full of good stuff...My sister whipped up a pot for me, maybe your wife will do the same for you? :) It is SO SO good.

http://rebeccakatz.com/recipes/magic_mineral_broth.html

p

CivilMatt's picture
CivilMatt
Posts: 2925
Joined: May 2012

Isign4Him,

Acid reflux (what a burn), I use Prilosec and during treatments I doubled the dosage, I am now back to one a day.

Nutrition, PEG tube with Jevity on fastest drip.

Hydration, never quit drinking TONS of water. Since February 6th (first rad) I have drunk water above and beyond what is required (this website had me so afraid of forgetting how to swallow and becoming dehydrated). I drink right up till I pull the covers up at bed time, it makes me get up at night, but I think it helps everything.

Round 2 is coming, good luck.

Best,

Matt

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

If you can keep the food down (that's a BIG IF to many) then I would recommend blending regular foods that don't have a lot of texture, adding an Ensure and a lot of water or Gatorade to the meal when you blend it. Then use your syringe to push the food in. For me this immediately gave me more strength/stamina and the water worked on the hydration. I blend up hamburgers, eggs and sausage, mac and cheese etc. When using Ensure I usually add some Miralax because it always constipates me. A more expensive route is to use baby food with whatever you need to add. It is amazing how your stomach will stretch and the vlumn you can put in.

Reflux - I have it so bad that the Dr wants to do surgery but I take two Prilosec a day and that helps.

If you can't take solids then stay with the Ensure and input at least two bottles of Gatorade.

Denny

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