New Caregiver and new to this board - any pain management or eating tips
Accepting any advice you can give me, so I can better care for her.
Comments
-
Suggestions
Hi Bennette,
My husband was diagnosed Feb. 21 2012 with Stage IV pancreatic cancer that has metasticized to stomach & liver. I have had the same concerns over the past 2 months and what works for is and what we have learned is.... most importantly to make sure she is hydrated - this is crucial. As far as eating have you tried ensure? otherwise see if she can eat small amounts even if it's a few bites throughout the day..soft foods may be easier to get down then others...eggs, yogurt, apple sauce, smoothies...etc.
I would talk to her doctor asap about the pain..she may need to have her medication increased or a different pain med all together.
I know how hard it is to be strong and keep it together so hang in there you are not alone.0 -
suggestionsBrisGal said:Suggestions
Hi Bennette,
My husband was diagnosed Feb. 21 2012 with Stage IV pancreatic cancer that has metasticized to stomach & liver. I have had the same concerns over the past 2 months and what works for is and what we have learned is.... most importantly to make sure she is hydrated - this is crucial. As far as eating have you tried ensure? otherwise see if she can eat small amounts even if it's a few bites throughout the day..soft foods may be easier to get down then others...eggs, yogurt, apple sauce, smoothies...etc.
I would talk to her doctor asap about the pain..she may need to have her medication increased or a different pain med all together.
I know how hard it is to be strong and keep it together so hang in there you are not alone.
Thanks. I am trying a strawberry protein smoothie right now, last night I did get her to drink about 6 ounces of a chocolate milk that I added protein powder to. I just know they want me to increase her fresh fruit and vegetables and that is hard to do when I can hardly get her to eat anything on some days. We now trying about the 3rd different pain medication, they all just seem to knock her out, but tylenol by itself doesn't work. She isn't hurting when she can't stay awake, but she also doesn't eat or drink when she is totally knocked out. I am struggling to find a happy medium. I didn't think of ensure, I will pick some up today when my sister comes to stay with her for a little while. I did try the soft foods, when she says she can't eat, it seems to apply to everything, which is why I tried the chocolate milk last night; I just know that has a lot of sugar in it, which is suppose to be bad for cancer patients. I guess at this point, I am going to have to worry less about the sugar and just get whatever I can down her. It is just sooooo frustrating some times.0 -
Diet
Hi Bennette,
I agree with BrisGal about the hydration.
It might be a good idea to discuss with your oncology team about diet.
I'm sure there must be a dietician/nutritionist available.
Since her kidneys are affected, I think this would be important also.
As far as fresh fruits and vegetables, nothing uncooked if her
white count is down. Ensure and Boost can be expensive.
Before I started treatment, my oncologist suggested I get Carnation
Instant Breakfast (it's cheaper) in case I had problems eating.
Fortunately, I had no problems eating during treatment - I ate like
a horse thanks to the high does prednisone.
During treatment and for about a week after, I avoided acidic stuff
as it irritated my mouth and tongue (so no orange juice, salad dressings,
tomato sauce, etc.). For the Ensure, Instant Breakfast, etc. see if you can get a
small container (or variety pack) of each different flavor to see what she likes. That way you won't waste money on a bunch of something she won't drink.
If her issue is appetite in general, you might be able provide something to stimulate
her appetite. Again, check with your medical team - they should be able to help.
I wouldn't worry too much about the sugar right now unless she's diabetic but
ask your team about that also. The research I've done on sugar and cancer has
been on both sides of the fence.
Cancer cells need sugar to grow but so do normal good cells
. Also, during
PET and CT scans they give you someting sugary to drink so they can detect
metabolism/activity in the cancer cells. This might be why some people think
sugar is so bad when you are dealing with cancer. I am not a medical professional
- just a thankful cancer survivor.
I wish you guys the best.
Hugs and positive thoughts,
Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. 0 -
Dietjimwins said:Diet
Hi Bennette,
I agree with BrisGal about the hydration.
It might be a good idea to discuss with your oncology team about diet.
I'm sure there must be a dietician/nutritionist available.
Since her kidneys are affected, I think this would be important also.
As far as fresh fruits and vegetables, nothing uncooked if her
white count is down. Ensure and Boost can be expensive.
Before I started treatment, my oncologist suggested I get Carnation
Instant Breakfast (it's cheaper) in case I had problems eating.
Fortunately, I had no problems eating during treatment - I ate like
a horse thanks to the high does prednisone.
During treatment and for about a week after, I avoided acidic stuff
as it irritated my mouth and tongue (so no orange juice, salad dressings,
tomato sauce, etc.). For the Ensure, Instant Breakfast, etc. see if you can get a
small container (or variety pack) of each different flavor to see what she likes. That way you won't waste money on a bunch of something she won't drink.
If her issue is appetite in general, you might be able provide something to stimulate
her appetite. Again, check with your medical team - they should be able to help.
I wouldn't worry too much about the sugar right now unless she's diabetic but
ask your team about that also. The research I've done on sugar and cancer has
been on both sides of the fence.
Cancer cells need sugar to grow but so do normal good cells. Also, during
PET and CT scans they give you someting sugary to drink so they can detect
metabolism/activity in the cancer cells. This might be why some people think
sugar is so bad when you are dealing with cancer. I am not a medical professional
- just a thankful cancer survivor.
I wish you guys the best.
Hugs and positive thoughts,
Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.
Thanks for the suggestions. I am picking up some of the things mentioned at the store today. I did get her to drink 1/2 of the homemade strawberry protein smoothie I made yesterday. But I am also running into a new excuse for not eating, she apparently has acid reflex disease and takes a pill every day for that. But all the sudden, yesterday, she started saying she couldn't eat anything we tried to give her because it gives her indigestion, but she also couldn't remember what did not give her indigestion. I need to point out she is loopey on the pain meds - which only adds to my frustration, because I have so much trouble getting a straight answer out of her. So if anyone knows of foods that DO NOT cause any acid reflex problems this would be great. I have never had indigestion problems so I have no idea. And she turned down everything I tried to give her or suggest to her and only ate 2 bites of the baked fish for dinner.
Then this morning, she said she was going to try to eat more and wanted some fruit and a hard boiled egg. So I gave her a plate of fruit, with a few small pieces of watermelon, honey dew melon, a large strawberry cut in half, some pineapple, sliced kiwi and some red grapes, with her hard boiled egg and a piece of homemade banana nut bread and the hot tea she requested. I told her to eat whatever she wanted from the selection and leave the rest. That was 40 minutes ago and she has only drank a little bit of the tea!
The frustrating thing is that I think her stomach is acting up because she isn't eating enough, just taking the pills all day long without food. She was eating so much better the first 4 days she was here, the same kind of foods and never mentioned her acid reflex until the last 2 days, when she had gotten down to eating almost nothing. But when I try to talk to her about it, she is just confused and can't even tell me what would be ok to eat or not and doesn't even remember eating without it being a problem. I HATE PAIN MEDS! It is like talking to a drunk, but we probably have another 4 or 5 days before she will get any relief from the radiation treatments, which is to start on Tuesday. In the meantime, I have to get more down her. I will try the drinks mentioned earlier for lunch, but if anyone else has other ideas that will not bother acid reflex, please pass on and I will check back later today and in the morning.
Sorry, if I sound frustrated, it is so hard to watch someone you love behave so out of character and in a way that is contrary to their health without them even understanding it!0 -
I know how frustrated youBennette said:Diet
Thanks for the suggestions. I am picking up some of the things mentioned at the store today. I did get her to drink 1/2 of the homemade strawberry protein smoothie I made yesterday. But I am also running into a new excuse for not eating, she apparently has acid reflex disease and takes a pill every day for that. But all the sudden, yesterday, she started saying she couldn't eat anything we tried to give her because it gives her indigestion, but she also couldn't remember what did not give her indigestion. I need to point out she is loopey on the pain meds - which only adds to my frustration, because I have so much trouble getting a straight answer out of her. So if anyone knows of foods that DO NOT cause any acid reflex problems this would be great. I have never had indigestion problems so I have no idea. And she turned down everything I tried to give her or suggest to her and only ate 2 bites of the baked fish for dinner.
Then this morning, she said she was going to try to eat more and wanted some fruit and a hard boiled egg. So I gave her a plate of fruit, with a few small pieces of watermelon, honey dew melon, a large strawberry cut in half, some pineapple, sliced kiwi and some red grapes, with her hard boiled egg and a piece of homemade banana nut bread and the hot tea she requested. I told her to eat whatever she wanted from the selection and leave the rest. That was 40 minutes ago and she has only drank a little bit of the tea!
The frustrating thing is that I think her stomach is acting up because she isn't eating enough, just taking the pills all day long without food. She was eating so much better the first 4 days she was here, the same kind of foods and never mentioned her acid reflex until the last 2 days, when she had gotten down to eating almost nothing. But when I try to talk to her about it, she is just confused and can't even tell me what would be ok to eat or not and doesn't even remember eating without it being a problem. I HATE PAIN MEDS! It is like talking to a drunk, but we probably have another 4 or 5 days before she will get any relief from the radiation treatments, which is to start on Tuesday. In the meantime, I have to get more down her. I will try the drinks mentioned earlier for lunch, but if anyone else has other ideas that will not bother acid reflex, please pass on and I will check back later today and in the morning.
Sorry, if I sound frustrated, it is so hard to watch someone you love behave so out of character and in a way that is contrary to their health without them even understanding it!
I know how frustrated you feel it helps sometimes if I take a step back and breathe. The disease and treatments make it nearly impossible for them to eat a meal so little bites throughout the day are ok. My husband is taking Protonix for the stomach acid and it helps sometimes. I focus more on keeping him hydrated then having him eat - that said he does have a bite or two every couple of hours - anymore then that and his stomach acts up and he will vomit. Bland foods are best - a piece of toast, an egg, oatmeal and if she takes just a bite thats ok...the smoothies, shakes, etc are great for hydration and nurtition so maybe focus on that for now. More importantly breathe and take care of yourself so that you have the strength and patience to take care of her.
And don't feel bad about how you feel I get frustrated, angry and upset at least a dozen times a day!0 -
frustrationBrisGal said:I know how frustrated you
I know how frustrated you feel it helps sometimes if I take a step back and breathe. The disease and treatments make it nearly impossible for them to eat a meal so little bites throughout the day are ok. My husband is taking Protonix for the stomach acid and it helps sometimes. I focus more on keeping him hydrated then having him eat - that said he does have a bite or two every couple of hours - anymore then that and his stomach acts up and he will vomit. Bland foods are best - a piece of toast, an egg, oatmeal and if she takes just a bite thats ok...the smoothies, shakes, etc are great for hydration and nurtition so maybe focus on that for now. More importantly breathe and take care of yourself so that you have the strength and patience to take care of her.
And don't feel bad about how you feel I get frustrated, angry and upset at least a dozen times a day!
Thanks so much! I will try that approach, maybe I am expecting too much. I have never had to deal with this and it just doesn't seem like a couple bites here and there is enough to survive on. I would have probably taken my children to the hospital if they would only eat the amount she is eating, so I am sure that is why I get frustrated, I am constently afraid it is not enough and that she will get worse if I can't get her to eat more.
So, I will focus more on the drinking today and more on the bland side when I do give her something to try to eat.
It is also tough because I am the oldest of 4 and my siblings have always come to me for the final decision and this is something I just don't have the experience or answers for, which makes it harder to deal with. But I am working on it - but I am about ready to toss the cat, who came with her!!! I don't have indoor animals for a reason. Sorry, a little venting as I just had to clean up pea in 10" radius around the litter box, aparently the cat can't aim!
Anyway, I will take your advice and focus on the fluids today and not stress out about how many bites she doesn't eat and take more pleasure in the few I do get her to eat. I guess it all about prospective!
Thanks,
Bennette0 -
Hey BennetteBennette said:frustration
Thanks so much! I will try that approach, maybe I am expecting too much. I have never had to deal with this and it just doesn't seem like a couple bites here and there is enough to survive on. I would have probably taken my children to the hospital if they would only eat the amount she is eating, so I am sure that is why I get frustrated, I am constently afraid it is not enough and that she will get worse if I can't get her to eat more.
So, I will focus more on the drinking today and more on the bland side when I do give her something to try to eat.
It is also tough because I am the oldest of 4 and my siblings have always come to me for the final decision and this is something I just don't have the experience or answers for, which makes it harder to deal with. But I am working on it - but I am about ready to toss the cat, who came with her!!! I don't have indoor animals for a reason. Sorry, a little venting as I just had to clean up pea in 10" radius around the litter box, aparently the cat can't aim!
Anyway, I will take your advice and focus on the fluids today and not stress out about how many bites she doesn't eat and take more pleasure in the few I do get her to eat. I guess it all about prospective!
Thanks,
Bennette
I think hydration is more important too at this point - especially
if the drinks contain nutrients.
Regarding the cat (wink):
Cat Genie
http://www.youtube.com/watch?v=S8MOmmtTCTs
Hugs,
Jim0 -
Coverjimwins said:Hey Bennette
I think hydration is more important too at this point - especially
if the drinks contain nutrients.
Regarding the cat (wink):
Cat Geniehttp://www.youtube.com/watch?v=S8MOmmtTCTs
Hugs,
Jim
Hey I hope that wasn't "aimed" at me Jim! ;>) How about just a cover for the litter box? (Poor kitty is adjusting too.)0 -
Funnycatwink22 said:Cover
Hey I hope that wasn't "aimed" at me Jim! ;>) How about just a cover for the litter box? (Poor kitty is adjusting too.)
Nope, but you did enter my brain when I wrote it
- LOL.
Of course it was meant in humor - hopefully not offensive to anyone. 0 -
Litter boxcatwink22 said:Cover
Hey I hope that wasn't "aimed" at me Jim! ;>) How about just a cover for the litter box? (Poor kitty is adjusting too.)
As I am not a cat expert, I did find out that this probably is an adjustment/rebellion. Apparently, my sister didn't want to clean out her litter box when we were moving my mom to my house - so she threw it out and bought a new one. When I was talking to my aunt, who has always had cats, she told me that cats are very picky about certain things and changing their litter box is one of them, in addition to the changing of her entire environment. Oh sisters!!! Hopefully kitty will adjust soon because I can't fix that problem for her!0 -
Fluidsjimwins said:Hey Bennette
I think hydration is more important too at this point - especially
if the drinks contain nutrients.
Regarding the cat (wink):
Cat Geniehttp://www.youtube.com/watch?v=S8MOmmtTCTs
Hugs,
Jim
Jim,
Thanks. I have been trying to focus more on what she is drinking. I did get some ensure, which she wouldn't drink at first. I finally got her to tell me that she thought it was too thick. So now I take 1/2 of the bottle at a time and add about the same amount of milk to it, she drinks this much better. I am also paying more attention to how much of the water she is drinking, rather than just making sure she has water with her. The doctor told me they are also trying to get a drug approved by her insurance, Marinol, that will get her eating. They too are concerned about her getting too weak from not eating enough. I hope this one helps, I am worried about her starting Votrient in the condition she is in, especially when one of the side effects is mouth sores, which would be another reason not to eat.0 -
A little something about catsBennette said:Litter box
As I am not a cat expert, I did find out that this probably is an adjustment/rebellion. Apparently, my sister didn't want to clean out her litter box when we were moving my mom to my house - so she threw it out and bought a new one. When I was talking to my aunt, who has always had cats, she told me that cats are very picky about certain things and changing their litter box is one of them, in addition to the changing of her entire environment. Oh sisters!!! Hopefully kitty will adjust soon because I can't fix that problem for her!
I've never really been a cat "parent" but have friends who are.
I've been told cats are very finicky about moving but they do
adjust with time.
Another thing I learned about cats is diversity in their diet
is not a good idea - something about their metabolism and inner
workings so generally it's best to feed them the same thing
(something they like of course).
Regarding the litter box, if your mom's immune system is weakened,
don't allow her to get near the litter box due to potential infection.0 -
Marinol is probably goodBennette said:Fluids
Jim,
Thanks. I have been trying to focus more on what she is drinking. I did get some ensure, which she wouldn't drink at first. I finally got her to tell me that she thought it was too thick. So now I take 1/2 of the bottle at a time and add about the same amount of milk to it, she drinks this much better. I am also paying more attention to how much of the water she is drinking, rather than just making sure she has water with her. The doctor told me they are also trying to get a drug approved by her insurance, Marinol, that will get her eating. They too are concerned about her getting too weak from not eating enough. I hope this one helps, I am worried about her starting Votrient in the condition she is in, especially when one of the side effects is mouth sores, which would be another reason not to eat.
Marinol would probably be good. It should stimulate appetite and also
is has the benefit of helping with nausea and vomiting.
Found this on mouth sores should that happen. There's tons of
info on the web for this.
Ehow Managing Mouth Sores
Hugs and positive thoughts,
Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. 0 -
Hi Bennette,Bennette said:Fluids
Jim,
Thanks. I have been trying to focus more on what she is drinking. I did get some ensure, which she wouldn't drink at first. I finally got her to tell me that she thought it was too thick. So now I take 1/2 of the bottle at a time and add about the same amount of milk to it, she drinks this much better. I am also paying more attention to how much of the water she is drinking, rather than just making sure she has water with her. The doctor told me they are also trying to get a drug approved by her insurance, Marinol, that will get her eating. They too are concerned about her getting too weak from not eating enough. I hope this one helps, I am worried about her starting Votrient in the condition she is in, especially when one of the side effects is mouth sores, which would be another reason not to eat.
Glad she took
Hi Bennette,
Glad she took some of the ensure. My husband had the same problem w. the chocolate ensures - he also complained how thick they were - I added milk and sometimes water (when I thought he was getting dehydrated) to thin them out. We are on the vanilla ones now as they are not as thick and he is actually asking for them which thrills me
Hang in there, I know how exhausting it is you are doing a great job.
Stefani0 -
mouth soresjimwins said:Marinol is probably good
Marinol would probably be good. It should stimulate appetite and also
is has the benefit of helping with nausea and vomiting.
Found this on mouth sores should that happen. There's tons of
info on the web for this.
Ehow Managing Mouth Sores
Hugs and positive thoughts,
Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.
Thanks Jim!
I added the info you suggested to my folder. I have found it easier to keep a folder with solutions and information I want to ask one of the doctors about. This way I don't have to remember everything.
I am exited to see if she eats/drinks more today, last night was the first dose of the marinol!
She has been getting so weak and I am sure it is from lack of eating / drinking!
Also - I have been taking care of the liter box, but good to know that it could be a problem for her, in case she starts feeling better, I will keep her away from it.
Bennette0 -
Thinking of YouBennette said:Fluids
Jim,
Thanks. I have been trying to focus more on what she is drinking. I did get some ensure, which she wouldn't drink at first. I finally got her to tell me that she thought it was too thick. So now I take 1/2 of the bottle at a time and add about the same amount of milk to it, she drinks this much better. I am also paying more attention to how much of the water she is drinking, rather than just making sure she has water with her. The doctor told me they are also trying to get a drug approved by her insurance, Marinol, that will get her eating. They too are concerned about her getting too weak from not eating enough. I hope this one helps, I am worried about her starting Votrient in the condition she is in, especially when one of the side effects is mouth sores, which would be another reason not to eat.
Hi Bennette and welcome to you and your mom. I was a caregiver for my dad. Hydration is a very important factor. More so than her food intake. As long as she stays hydrated, she will do better. Glad she is taking the shakes and smoothies. One day at a time. You are doing a great job and are on the right track. Pray and then pray some more! We are all here for you.
Tina in Va0 -
Try coconut water (not milk)
Try coconut water (not milk) for hydration. You can find it in the juice aisle. Also, for acid reflux issues, a baked potato is easy on the stomach and most people can tolerate potatoes even when they feel ill.0 -
coconut waterLivinginNH said:Try coconut water (not milk)
Try coconut water (not milk) for hydration. You can find it in the juice aisle. Also, for acid reflux issues, a baked potato is easy on the stomach and most people can tolerate potatoes even when they feel ill.
Thanks. I didn't even know they had that available. I will check into it. I am trying all kinds of drinks with her.0 -
coconut waterLivinginNH said:Try coconut water (not milk)
Try coconut water (not milk) for hydration. You can find it in the juice aisle. Also, for acid reflux issues, a baked potato is easy on the stomach and most people can tolerate potatoes even when they feel ill.
Thanks. I didn't even know they had that available. I will check into it. I am trying all kinds of drinks with her.0 -
Update on my mom's status
Sorry all - I kinda disappeared for a couple weeks. I had asked the docs to give her fluid when she went in for a calcium treatment and instead they ended up putting her in the hospital for a week. Her calcium was through the roof and she was severly dehydrated and still losing weight.
Needless to say I was distracted and concerned. Since then, they increased her marinol to 3 times a day and gave her tons of fluid in the hospital and even helped me get her pain meds sorted out. A week after increasing the Marinol she was eating like a normal person and started her Votrient, 3 weeks ago yesterday. She has been doing well on it and with eating, still working on the getting her to drink more, the dietician wants us to shoot for 64oz a day and we are no where near that. But the last two weeks, her weight at the doctor was within a pound difference from her first follow up at the doctor! We are maintaining!!!!
Now for the not so good. After they handled the calcium levels I continued to report confusions and bad judgement, so they gave in and did an MRI on Monday, so Monday afternoon we found out she has multiple small tumors in her brain. They are recommending whole brain radiation treatment to rid or stop them so they can get her healthy enough to still try the IL2 treatment. We meet with the radiology doc on Thursday for a consult and I am working like crazy to put info together. They have her on steriods for brain swelling and she is feeling fine and eating fine, but it sounds like we are about to embark on an even more trying journey in the coming weeks!
Thanks to all of you who were helping with food/drink tips. I am still trying all those suggestions as I have heard this eating problem is liable to turn back on during various treatments and especially radiation treatments. So your tips are still warranted and I am trying things out on her while she is cooperative so I can see what she likes, etc, for use later.
Thanks!
Bennette0
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