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Posted

Hi all--

I know that I have seen this issue addressed before--but I need your collective wisdom today.

My dad began chemo (carboplatin/gemzar--avastin will be added next month) last Thursday. He is about to receive his gemzar infusion today. Before starting chemo, he had SRS to take out 3 brain mets and 15 rounds of WBR to knock out 4 incipient mets they spotted on the MRI.

The problem: He's not eating. He's lost 11 pounds so far. We have taken him to a nutritionist and he cannot/will not follow any of her suggestions. We've tried plying him with ice-cream, chicken soup, matzo balls--anything he wants...still, he barely eats.

We've gotten him Marinol, anti-nausea meds--nothing is working...

The chemo and WBR have simply knocked the wind out of him. He's feel weak--and you can hear it in his voice...he can't really focus on anything right now. He is just not himself.

It is really, really scary to see him this way. My mom is starting to panic--and frankly, so am I.

Does anyone have anything that helped with appetite--or putting on weight during chemo...I know some of this is part of the process...but is it always this hard?

As always, thanks for your help.

Leslie

Posted

there is the standard Boost and Ensure of course. the old eat what you want, when you want of course and this is from another post that I found:

But one thing he likes (600 calories per glass) is "Skandyshake". You can buy the pouches at the drugstore (usually hospital drugstores) or request your neighboring pharmacy they get it for you. It tastes just like an icecream or milkshake. You can add to it (or at least I do) powdered milk (more calories and more protein), icecream, fruits, anything you like and just blend them together.

I had forgotten another little trick: A product called "Polycose". It is a powder that has absolutely no taste, and you can add it to just about anything, from soups, to mashed potatoes,to juices, milk and even water. It adds 200 calories per spoonfull.

You can also get it at hospital drugstores (here they have both Polycose and Skandyshake readily available at the kids hospital) or have your pharmacy order it for you.

Hope Something here helps you out some with this issue. It is very important to keep the fighting weight up in order to avoid Cachexia. Cachexia is known as the wasting disease and just starting to get some more attention.

Posted

He needs to eat and he desperately needs fluids. If you can't do anything else, get fluids in him and as much nutrition as he can manage. Once you become dehydrated you can lose your sense of thirst and hunger. Dehydration is dangerous. Now if you really are at panic mode the other solution is a feeding tube. It will nourish and hydrate him until he can eat. Many people have had to get a feeding tube put in temporarily.

Posted

it has become clear that he is drinking nowhere near the amount of fluid he should be. We are now going to redouble our efforts to get him to focus on drinking as much liquid as he can handle. His recalcitrance with respect to pushing himself to eat and drink and otherwise take initiative can be so disheartening---but it is understandable.

The water may really really help though as I'm starting to think a large part of his nausea and lack of appetite may be atributable to dehydration.

I told dad that if he doesnt start following orders I am going to take leave from work to be with him. For a variety of reasons, I know thats the last thing he wants!

Posted

If he gets dehydrated, the emergency room is great for IV Fluids to get things back top normal and that is not a fun alternative at all!!!!

Posted

Hiya-

We went thru a long period of time like this with my mom when she was on Iressa and right after her RADS to the primary tumor hurt her espohagus so much I think it is pretty normal.

Leaving the food around the coffee table is a good trick-people eat when they are bored when it is in front of them...we did a lot of Ensure but there was 3 weeks solid that all we could do was get mom to drink gatorade-the doctor finally threatened to put in a feeding tube...she ate again quickly.

We also finally had a talk with her..'if you want to live you have to eat, your body is fighting a fierce battle right now and you can't expect it to do it's job when you are not giving it any fuel'

she ate after that...although she still says everything tastes like cardboard.

Hope some of the suggestions from everyone here wokr for ya'll.

Blessings

Melissa

Posted

I do the "coffee table" trick too... there is always a bowl of snacks in front of where my husband is most of the time...that was he can get his own when he wants...sometimes he seems to eat/snack more at night...plus he can feel more independent..like he is getting his own..I think a lot of times he turns things down b/c he doesnt want to bother me or feel like he is a burden... the snack bowl helped a lot...

I also keep a bottle of water infront of him all the time and everytime I would go near him I would say "water is your friend...water is good"..that was usually enough for a smile and a swig!

after radiation my husband was in the same situation..barely ate or drank...and there was nothing I could do really to get him to take the fluids in... i used to be happy when he would agree to take miralax b/c it has to be mixed with water and I knew he woudl at least get some fluids in then!

also if he is on steroids (decaron / prednisone etc) make sure he is taking them regularly..this should help with the appetite as well...

I hope things turn around for you soon...I know how scary and frustrating it all is....

Posted

Thank you everyone.

For better or for worse, I just had a talk with my dad too...I said that we are so worried about him. That we need him to drink 64 oz of water a day and that we need him to eat. That so much is out of control with cancer---we need to stay on top of the few things that we can control. And that I know he is really suffering--but that we have to find some way to help him muster the strength to move forward and to do the things he needs to do.

I threatened to leave DC and my job to come home...(A, I didn't realize that you had done the same thing until I read your post...)

I feel terrible because I was really crying throughout--and the last thing he needs is to have to take care of me through all of this.

He seems to have heard us (I pray, I pray).

Thank you for your thoughts.

Leslie

Posted

The thing that helped with my Mom with getting her to drink enough was finding the right thing for her to drink. Water made her more nauseas so we finally settled on ginger ale.

But I will say that it is a constant struggle. I just try to get her to eat as much as I can when she feels good. I say it's like dealing with a pregnant woman...whatever, whenever she wants something I get it! And since we added Megace, her appetite has improved...but she missed chemo last week due to low WBC. That might be why :roll: . And then she gets discouraged when she eats and doesn't gain weight. I keep telling her it's an uphill battle!

My thoughts are with you, Leslie. (that's my name too!)

Posted

Leslie and Adrian:

Does your dad say exactly WHY he's not eating and drinking? Doesn't feel like it? Isn't hungry? Tastes bad? Makes him nauseous? Too painful?

If it's one of the first 4 reasons or something similar, I can't really add to the list of things you're already doing or that have been suggested. If it's because it's unacceptably painful to chew or swallow, then that's a little different and IV fluids/nutrients or a temporary stomach tube, also mentioned above, might be the best (or only) solution. There's a good chance your dad's oncologist may bring this up if the weight loss continues, not as a threat, but as a temporary solution to a temporary but very real problem.

Of course your dad is the final say on this, and there might be a psychological hurdle to clear, especially with the feeding tube idea. That term tends to bring up unpleasant images of semi-comatose long-term care patients being fed through a nasogastric (NG) tube, prisoners on a hunger strike being force fed, or worse. But a gastrostomy (G) tube placed directly into the stomach can be taped to the skin when not in use and concealed under clothing when one is out and about. I don't know that much about it, but enough to know I wouldn't hesitate to have one myself if I was temporarily unable to eat or drink normally because of surgery or radiation.

Hoping for better days ahead. Aloha,

Ned

Posted

I'm sorry. I know it's hard to watch that weight disappear..

When Harry is sick like that , he survives on cheap popsickles.

I tried buying the more expensive ones,- made with juice, or mixed with ice cream,- and he wouldn't eat them.

He says the only thing that tastes good, are the type that the kids usually eat. They come in either a netted bag, or a long box. Walmart carries them. There's about 50 of them in the bag, and they cost about $2.50.

I'm sure there's no nutritional value in them, but at least it's like drinking kool-aid, so it's fluids.

I too, have tried everything under the sun, to tempt him to eat. The snack tray sounds like an excellent idea. I'm going to try it when Harry gets home from the hospital.

Good luck to you,

Nova

Posted

Leslie and Adrian - Same here - my father is going through a radiotherapy programme at the moment and eating is hard work. Puddings seem to go down better than savoury stuff - everything tastes of nothing much so the softer the texture the less hard work it is. Really really creamy milk puddings (lots of butter and sugar and cream and full cream milk with rice or semolina) or panacotta/creme brulee type desserts pack a lot of calories in for the volume. I think it's much easier to bump up the calorie content of sweet things without changing the taste or texture beyond recognition than it is for the savoury stuff. Even if your father hasn't had much of a sweet tooth up to now, he may be willing to try the puddings - pureed fruit with lots of cream but less sugar could be an alternative in that case. For savoury things - does he eat fish? As long as you get all the bones out before you cook it, white fish baked with breadcrumbs mixed with parsley, grated lemon rind, and melted butter might be worth trying. Although the calorie content by weight is less, the overall nutritional value of fish is very high.

We have found that ginger beer/ale is good - also you might try lemon and ginger tea. I like the snack tray idea - going to give that one some more thought. Finally, check that he hasn't got thrush - that will affect his sense of taste too and could make swallowing painful - and also make sure he's not getting constipated, as that won't help either. Another good reason for keeping the fluids going in, even if nothing much else is.

As I write, one other thought occurs to me. Particularly as he has been through a great deal in the last few weeks - and has gone through a series of losses which really matter to him - I just wonder whether he could be a bit depressed. Might be worth asking your oncologist about that?

Hang on in there - it is really hard to stay on the encouraging rather than nagging side of the line - and try not to let it get to you if he still doesn't eat as much as you would like in spite of all your efforts.

Posted

I was on my own throughout my treatment and started the battle at a whooping 101 pounds. Upon completion of chemo and radiation I now sport a chubby 123 pounds. My onc told me from the get go to eat anything and everything I could. I did keep snacks by the bed 24/7 and figured out ways to make even healthy shakes taste good. Keep trying and stay positive you will find the magic mix.

Posted

Remember also that all his fluids don't necessarily have to come from drinking. You can give him foods that have fluid (like rice, pastas, anything that absorbs water in cooking or watermelon etc.) and his body will get fluid that way also. Popsicles as someone suggested are great.

Randy makes a good point- if he is dehydrated the fastest way to get him hydrated is an IV. Good luck!

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