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What foods could you manage?

CherieLW's picture
CherieLW
Posts: 433
Joined: May 2013

Hey everyone,

Today was a good day, but also tough one.  I met up with my parents at Olive Garden and dad wasn't eating much.  I ended up switching him meals bc he could tolerate mine more (Chicken Alfredo).  Everything is starting to taste bad to him.  I am really really worried about him not eating or not getting enough calorie intake.  I'm not sure how well dad would do with ensure unless the docs push it on him... so are there any foods that you could eat that seemed to taste TOLERABLE?  Thanks for any suggestions.  I'm defintely going to check out the superthread, but please feel free to suggest anything.  So far dad has ate eggs well and pancakes.  I need to get him to keep eating so need to recommend things for mom to get and try. 

Thanks again,

Cherie

p.s. Hope everyone had a good father's day!

KTeacher
Posts: 949
Joined: Jan 2011

It was good that your dad got out.  Alfredo is what I would have ordered.  I cannot do the red sauce.  Taste will change and change and change some more.  Sometimes something is ok on the first few bites and then yuck.  Just have to encourage him to keep trying.  I didn't have a PEG but probably should have this time.  Cream of Wheat was a mainstay, pudding, custard, smoothies (with protein powder added) and yes Ensure--I don't want to see one anymore!  A Chef to check out is Rebecca Katz.  You can write her name in the search engine.  She has worked with Head, neck cancer patients and has some great recipes, some are on her website.  Good luck and thanks for finding out ahead of time.  I knwo that you said that you are 3 hours from your dad, if you could take off some time during his last weeks of treatment, it would probably help with his primary caregiver.  Don't expect a perky visit, but helping at this time would be appreciated by all.

meaganb's picture
meaganb
Posts: 233
Joined: May 2012

I lost my taste pretty quickly. It stared fading the first week & was completely gone by the end of the second week. Creamy soups seemed to be ok...think brocoli cheddar or clam chowder. After my mouth got too sore for that I switched to Bolthouse drinks. They are usually found in the produce section. A lot of them are loaded with protein & they have actual servings of fruits & veggies. I tried Ensure for about a week & it just made me feel terrible. Most people do fine with Ensure but I just couldn't tolerate it. Hope your dad continues to do well!

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

For me, Ensure nutrition shakes and protein shakes have been vitally important during my treatment.  I just finished radiation last week.  I have lost a lot of weight but avoiding having a feeding tube because of the nutrition supplements.

Nutrition drinks may be a necessary evil.

I reached the point where I was only drinking nutrition supplements -- Boost and Ensure.  Now I am back adding fruit and yogurt smoothies to my diets.  Soon I hope to add soft "real foods."

The challenge your dad will face is the combination of loss of taste, loss of appetite, sore throat and mouth, and increasing fatigue as the treatments progress.

Your doctor can arrange for you meet with a nutritionist and there is also good information on this discussion board and cancer sites about what kinds of foods to eat.

This will be hard, but maintaining nutrition is vitally important to promoting healing, so if nutrition lags behind recovery will take even longer.  Hang in there.

 

M

 

 

 

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

 

Cherie,

Your Dad needs to choose his easiest path to nutrition and do it.  I general, his choices from hardest to easiest are:

1.     

Regular food

2.     

Soft food

3.     

Blended food

4.     

Nutritional drinks (smoothies, protein drinks, Ensure, Boost etc.)

5.     

PEG

If he can find the path to least resistance, this battle is under control and he can be ready for other side effects.

Hydration, nutrition and swallowing,

Matt

 

TracyLynn72's picture
TracyLynn72
Posts: 724
Joined: May 2013

that consisted of:

eggs

soups

pudding

smoothies

Ensure

 

I did all of that as long as I could and then got my PEG last week.  Now I pour my nutrition in and drink water (to keep my swallowing going).  Eating and the thick saliva has been the hardest two things for me.  I hope he can continue to get down all that he needs!!

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

The eggs and pancakes you mentioned were among my staples. Try baked potato with lots of butter and sour cream. I liked the milk chocolate Ensure and continue to have one every morning. I quit a week ago but noticed a change in my energy level so added one a day back to my diet. I did well with milk and for some odd reason, rice krispies. Buffets work out well because you can sample to see what works. Bob Evans mac & cheese (in refigerator section at grocery) worked for me but most other brands too pastey. French fries no salt, steak fries were even easier for me. Tapicoca. What works one day may not work the next. Trial and error...got to keep trying until he finds what works for him. I still find the less expensive grades of ground beef have more fat and are much easier for me to eat. Green beans, corn and asparagus are my easiest vegtables and watermelon my easiest fruit.  Cream soups can add extra calories that are needed. Next to hydration, nutrition is key to healing. 

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

cherie,

I bought some protein powder and have been making protein shakes with yogurt and fruit and half and half.

so far so good on those.

tough week for ron but was better today since he had the weekend off treatments.

mushy mac and cheese was something he liked saturday.

mashed potatos and gravy, baked potatos have good potassium load up with cheese and butter.

going to try some baked tilapia for him tomorrow, lots of ptotein.

I figure any thing that is soft or can be softened i will be giving him.

make sure your dad has gotten l-glutamine , I started ron rinsing last week, hopeing it will keep the mucous down and heal sores that might develope.

If you find out any tricks let me know since ron and your dad are days apart.

phrannie, T, skiffen and a few others have blazed the trail and have great advice.

prayers for you,

janet

Duggie88's picture
Duggie88
Posts: 550
Joined: Feb 2010

You end up becoming a scientist and you have to keep experimenting. I bought one of those blending machines on TV I forget the guys name who is on the advertisement. He use to do a talk show where people would come on and tell their secrets. Anyway I use to bland up fresh vegies and it would even heat it while blanding. Ensure for protein. One of my favorites was milk toast. I use to toast a piece of bread butter and pepper and pour warm milk over it. Apple sauce was also an ace in the hole.

Make sure he doesn't force the things that were favorites and now he dislikes. They told me chances are you will never get you taste back for that item. Being a former truck driver I drank alot of coffee but lost my taste for it a week or so into radiation. It  got the the point I couldn't even make it for my wife because I would get the dry heaves just smelling it brew. I did begin to try it 4 months out of radiation and now I am good with it. March was three years and I am still getting my taste back for some things.

Fathers day was great, one of my daughters gave me an ice cream maker. It makes a gallon at a time which meams I will have to make two batches so others can have some.

Enjoy the  day

      Jeff

longtermsurvivor's picture
longtermsurvivor
Posts: 1818
Joined: Mar 2010

For  many of us, solid food becomes impossible at some point in treatment.  For me, that was about two weeks into treatment.  It wasn't that it tasted that bad, it was rather that it was too hard to swallow.  My taste faded away.  Things didn't taste bad, they just didn't taste much at all.  Ensure and like products are intended as meal replacements.  They are much easlier to get down than solid food.  And you can live on them indefinitely.  I just shrugged my shoulders and said "oh well".  My routine for the duration was to chug down six of them a day.   That avoided having  to deal with the sore mouth for all except for a few minutes a day.  It provided me all the calories and most of the fluid I needed.  At some point he doesn't need to struggle with food, just get the caloies down and the days will go by.

 

Best to you and him.

 

Pat

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

As Pat says...

There comes a point where it isn't about taste or saliva..., it's purely one thing...surviving treatment and continuing to live.

Simply put, if you don't take in calories and hydration, you're either hospitalized or you die, or both.

It's not a matter of liking or tolerating anything..

If he's like me, you basically have no taste, or not enough that anything taste like something you recognize.

You take in Ensure Plus, Boost or what ever because it has a lot of calories, and doesn't hurt nearly as bad as trying to squeeze in a little food that doesn't come close to the amount of calories.

I did slide a few sliced peaches in light syrup down with each liquid feeding. This was mainly to keep the throat muscles working. But I could tell between the sweet ones and unsweet ones.

Strawberry Ensure Plus was the only one that I liked, so I could tell enough difference between the flavors.

But again, the main thing is just getting the calories and hydration in...., no matter what the taste.

You have to maintain enough energy for recovery and for your body to help in the fight.

Chemo and rads are poisons basically..., if the cancer doesn't kill you treatment comes close... But that's the way I see it... To kill the cancer, they have to nearly kill you in the process.

I'm sorry but there is no easy way around it...

The PEG may make it easier, but you still have to use the throat muscles occasionally, and you still have to get enough calories and hydration in you.

Best,

John

mls351w
Posts: 88
Joined: Jul 2011

My problem wasn't foods tasting bad or good....there was no taste at all. And my throat was so sore, i was glad not to have to swallow anything at all. Thankfully, my onc insisted on me gatting a peg before any treatment started. I went from 195 lbs. to 178 lbs and she threatened to place me on an "automatic feeder", whatever that is. I figured it was some mecanical apperatus or a 300 pound nurse that would force feed me!

Anyway, i promised not to loose any more weight. I peggeg as much Ensure Plus and water as I could tolerate. Once in a while I would force pudding or fruit coctail down. And a milkshake/malt from time to time. I was mainly shooting for calories and hydration. As you know, chemo is really hard on your kidneys.

Best wishes to you and yor dad!

Mark

CherieLW's picture
CherieLW
Posts: 433
Joined: May 2013

Thanks everyone for your inputs.  I've been sick as heck the past few days so have been m.i.a. I'm going to relate suggestions back to dad.  

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

hey cherie,

ron had a bad week on week one of treatments but this week has been better, still gets nausea but not as fatigued and is eating better.

His onc decided to have him get hydration IVs 3 days this week and today was the first 3 hour one. He is tired but eating. Nothing like last week.

The nutritionist gave us a bunch of coupons for ensure, which I have in stock pile.

8 rads down, 31 to go

2 chemos down 7 more to go.

Good luck,

janet

CherieLW's picture
CherieLW
Posts: 433
Joined: May 2013

Janet,

Glad to hear that this week is getting better for Ron.  You tell him just to hang in there... These next 31 days are going to go quick!  I just assumed everyones chemo was similiar...but when they do dad's chemo (once every 3 weeks)...the nurse gives him an IV of Saline for hydration, then nausea meds via IV, then the Chemo is administered, and finally more saline. 

Dad's still working on improving the eating thing.  Mom picked him up some ensure which is nice! I have written down everything you all suggested on here to help give dad some ideas of things that he could try. He is dealing with sore throat w/ some minor pain, dry mouth, and fatigue other than the eating bit.  He still stays pretty busy I think for going through these treatments, out riding the bike or working on the new house.  Just taking more breaks to relax from what I gather.

11 rads down, 24 to go!

1 chemo down, 2 to go!

Counting with you...

Best of luck to you and Ron as well.  Praying for you both!

CherieLW's picture
CherieLW
Posts: 433
Joined: May 2013

P.S. that makes dad's chemo treatments about 6 hr long.  Did anyone else experience longer periods of time for chemo or is this pretty typical considering all the fluids and nausea meds as well?

 

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

It depends on several things...

What type of chemo, how many types of chemo at the same session... If it's the first time, is it infusion, does he have a port, etc....

My first nine weeks of chemo was TPF, Cisplatin, Taxotere and then 5FU through the port for the next four days 24/7... That was along with several bags of associated meds, fluids etc... all infused (pumped through my port). My first day was in excess of 8 hours.

That was the first of three cycles over a nine week period.

The next two cycles were a lot less as they pumped at a faster rate as I had no problems with rate of infusion.

During the next phase of my treatment, the seven weeks of concurrent consisted of weekly Carboplatin, also pumped through the port with various other meds and fluids each Monday, lasted only a few hours each time.

If you have reactions, times are slowed...

So there are a lot of factors and variables that dictate your time at the chemo center.

JG

 

 

CherieLW's picture
CherieLW
Posts: 433
Joined: May 2013

John,

Thanks for explaining as a lot of the meds I'm unfamiilar with still (Cistaplin?) Is that a diff type of chemo?

Dad got lucky and didn't have to have a port.  I'm guessing because he only has to do the 3 treatments through IV...

Thanks everyone,

Cherie

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

It's one of the Platinum based (heavy metal) chemos, stronger than Carboplatin... Most of these are hard on the body, especially kidneys. They usually give lasix and other drugs to induce urination quickly flushing the kidneys during treatment to get rid of the extra chemo...

Actually the port isn't a bad thing... Yes it is surgically inserted, but you can receive (and draw) through it... With the port, they can pump the chemo and meds on a fairly high rate, making it quicker.. But also since it's always there, they never have to use your veins... They can even use it for blood draws..., it works both ways.

Down side is that after treatment, you have to go into to get it flushed every 6 - 8 weeks to keep it open, no infection, etc... annnd, my MD likes leaving them in for two years (greatest chances of recurrence)...

But taking it out is easy, outpatient MD's office..10 minutes...

JG

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

hours...give or take.....8:30 to 4:30.....but that included getting unhooked in order to go over to radiation and getting that done....coming back and getting rehooked up, to finish the infusion.  It also makes a difference on how many people are getting chemo during the day.....the more there are, the longer it takes (that's what it seemed like to me, anyway).

p

CherieLW's picture
CherieLW
Posts: 433
Joined: May 2013

Thanks Phrannie.  Dad does his chemo in our hometown and goes about an hour away to do his rads.  So far he is doing pretty well...Hope it stays that way! 

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

Creamy fattening soups....Cauliflower and cheese, loaded Potato soup...they can be kind of tasteless of course, but they are good for lots of calories (actually the Cauliflower and chees soup I could taste for quite a while.).

The thing is, there's going to come a time when he's not enjoying eating much at all.... to the point that Ensure becomes a quick, calorie filled way to go....Longtermsurvior got me into the counting how many gulps it took to get it down....and I was looking at it just that way....11 gulps and dinner was done. 

My sisters would make me things to eat, but it's so hard for someone not going thru this to understand what no spit really means...or how tasteless, tasteless can be.....just getting calories in is all that becomes important.

p

CherieLW's picture
CherieLW
Posts: 433
Joined: May 2013

Counting down is a good thing!

Roar's picture
Roar
Posts: 245
Joined: Mar 2013

I think this must be the most commonly asked question - at my worst moments during treatment ensure was my best friend. College inn broth with pastina and an egg dropped in went down pretty easy- double dippd French toast nice and soggy was nice- instant oatmeal cinnimin and brown sugar was a treat. omelettes with American cheese went down well. Make sure you look into the magic mouth wash a you will need that sooner or later so you will be able to swallow. 

CherieLW's picture
CherieLW
Posts: 433
Joined: May 2013

Roar,

Thanks! I am sure it is a common question but I thank anyone who is willing to answer it again for a newbie.  Dad did get a mouth rinse from his oncologist with lidocaine.  Not sure if its the same as the one you mentioned. 

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

What we refer to as magic mothwash has several componets and most generally does contain lidocaine, I know mine does.

The intention is a numbing sensation to allow a person to eat with less pain. I am 13 months post tx and don't have any trouble swallowing but on occasion, when my mouth gets extremely dry, the magic mouthwash still offers me some relief.  

CherieLW's picture
CherieLW
Posts: 433
Joined: May 2013

Nice to know! I'm sure since it has lidocaine that it is similar to the one dad got. 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013
This was on another OC forum. Very helpful

"T"


Thought this might be helpful to those who are struggling to relearn to eat normally again. soft scrambled eggs with cheese poached eggs yogurt pudding cheesecake milkshakes (I used to drink choc/peanutbutter milkshakes daily) baked beans mashed up like mashed potatoes mashed potatoes mashed sweetpotatoes, or candied sweet potatoes chicken and stars soup wonton soup french onion soup (can make very easily at home, just beef broth and sauteed onions, piece of toast on top and provolone cheese broiled to melt it) pancakes w/ real maple syrup or smucker's blueberry syrup french toast canned carrots peas or green beans mashed glazed carrots cottage cheese buttered soft, fresh white bread with jelly soft serve ice cream applesauce tomato soup made with milk zucchini squash either dipped in egg and lightly fried or sauteed in butter jello canned peaches or pears asparagus (overcooked) baked potato with butter and sour cream Some meats are very tender when cooked in a pressure cooker like turkey legs. To help balance your diet, add a scoop of dry carnation instant breakfast to milkshakes.
CherieLW's picture
CherieLW
Posts: 433
Joined: May 2013

Very helpful T!  Thanks!  I will add this to the list for my dad.  I wrote down everything you all suggested on here and gave it to mom the other day.  I also wrote down some tips you all have mentioned for him. 

I appreciate all the input!

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

Forgot about sweet potato casserole until reading your post...Yum, I'm off to the store

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