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New Caregiver and new to this board - any pain management or eating tips

Bennette
Posts: 65
Joined: Mar 2012

My mom was diagnosed with stage IV kidney cancer on Feb 28, she has mets in her lungs, adrenal gland, left femur and two places in her spine. She had a kidney removed about 3 1/2 weeks ago. The cancer in the bones was not discovered until last Wednesday and I moved her in with me last Thursday (9 days ago), when she had to start using a walker. Some days are worse than others, she hurts despite the pain meds and I can't get her to eat! It is really upsetting to me, but I don't let her see it. I just need to know if there is anything I can do to help ease the pain and get her to eat more. We are going to start radiation treatment on the bone mets next week, which is suppose to reduce or eliminate the pain, but I have to make it to next week!!! It scares me when I can't get her to eat. I have to hold it together though, I still have a 17 year old daughter at home and I care for my 3 year old grandson Mon-Friday during the day. My sister is coming out later today, so I can leave for a while, this first week has been hell.

Accepting any advice you can give me, so I can better care for her.

BrisGal's picture
BrisGal
Posts: 6
Joined: Apr 2012

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.

Bennette
Posts: 65
Joined: Mar 2012

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.

jimwins's picture
jimwins
Posts: 2079
Joined: Aug 2011

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. :)

Bennette
Posts: 65
Joined: Mar 2012

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!

BrisGal's picture
BrisGal
Posts: 6
Joined: Apr 2012

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!

Bennette
Posts: 65
Joined: Mar 2012

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

jimwins's picture
jimwins
Posts: 2079
Joined: Aug 2011

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,

Jim

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hey I hope that wasn't "aimed" at me Jim! ;>) How about just a cover for the litter box? (Poor kitty is adjusting too.)

jimwins's picture
jimwins
Posts: 2079
Joined: Aug 2011

Nope, but you did enter my brain when I wrote it ;) - LOL.
Of course it was meant in humor - hopefully not offensive to anyone :).

Bennette
Posts: 65
Joined: Mar 2012

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!

jimwins's picture
jimwins
Posts: 2079
Joined: Aug 2011

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.

Bennette
Posts: 65
Joined: Mar 2012

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.

jimwins's picture
jimwins
Posts: 2079
Joined: Aug 2011

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. :)

Bennette
Posts: 65
Joined: Mar 2012

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.

Bennette

BrisGal's picture
BrisGal
Posts: 6
Joined: Apr 2012

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.

Stefani

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

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 Va

conmar710
Posts: 2
Joined: Jun 2012

I am new to this board and it is my first time seeking outside help. My hubby has been through radiation for paroditic sarcoma and is now beginning chemo for lung/sarcoma. He is diabetic and I am concerned about maintaining his sugar level. I am scared of not doing the right thing or of not doing what I should have. I feel that I am always fighting a battle on his behalf within the medical fields.

LivinginNH's picture
LivinginNH
Posts: 1330
Joined: Apr 2010

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.

Bennette
Posts: 65
Joined: Mar 2012

Thanks. I didn't even know they had that available. I will check into it. I am trying all kinds of drinks with her.

Bennette
Posts: 65
Joined: Mar 2012

Thanks. I didn't even know they had that available. I will check into it. I am trying all kinds of drinks with her.

Bennette
Posts: 65
Joined: Mar 2012

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!

Bennette

BrisGal's picture
BrisGal
Posts: 6
Joined: Apr 2012

Good to hear from you, I have thought about you from time to time when I check out these boards. Hang in there...day by day and do whatever works for your mom and for you too.

jimwins's picture
jimwins
Posts: 2079
Joined: Aug 2011

Good to hear from you.

Glad your mom is eating better, etc. Sorry to hear about the
tumors they found in the MRI.

Hang in there and big hugs,

Jim

Bennette
Posts: 65
Joined: Mar 2012

Thanks all for your help and thoughts! After meeting with the radiologist, we found out that she has 20-30 very small tumors in her brain. After doing tons of research on whole brain radiation and talking to the rad doc and her onc, we decided to do nothing about the brain mets yet. Since they are very small we are going to monitor them and we are praying that the Votrient she is on will keep them from growing. She has her first follow up CT scans and MRI set for July 3 and we get the results on July 7. They are going to do MRI's every 6-8 weeks and then if the brain mets get big enough to really start effecting her abilities, then we are going to have to do the whole brain radiation. Part of the decision was also based on the side effects from the steriods they put her on, due to the swelling. So when we decided to wait on the radiation, they started decreasing the steriods. She was doing fine, until this week, it has been hard as we reached the 2mg every other day dose, the effects of coming off of them sent us back into the not eating/drinking stage, which we had overcome. Tuesday - Thursday were bad, but she was back to eating better again yesterday.

So we just keep hoping and praying that the Votrient is doing its job!!!

I appreciate all the thoughts and words of encouragement from everyone and I think about all that each of you are coping with also, wishing you all the best in your struggles too!

Bennette

jimwins's picture
jimwins
Posts: 2079
Joined: Aug 2011

Hi Bennette,

Thanks for the update. I hope the Votrient kicks butt!

Hugs,

Jim

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

My dad has Esophageal Cancer Stage IV. He was DX in 8/2010. I have been on this website since last month. I know that these cancers aren't really related, but many people on the EC Discussion Board have recommended that when one cannot eat or drink, which is common with EC, a J-Tube be placed for proper nutrition and hydration. Maybe this could be an option for you. My dad has not been as far down the road to need one, yet, but if he has been very close. I didn't know ANYTHING about them and, in fact, I was against them completely! Then after doing much research and getting LOTS of sound dvice from others who had "been there, done that" I talked to my dad and we decided that if it ever gets there, that this is an alternative to help him.

I'm so sorry to hear about all the small tumors in her brain. Sounds like you are doing the best you can. I know it's tough to care for someone you love. Especially when they make poor decisions and just aren't themselves. I hope that you look into a healthier option than Ensure or Carnation. Both are loaded with processed sugars. Even milk is not the best option for getting stuff down. Try Unsweetened Almond Milk. And if you must get a meal supplement, try Glucerna. It has a significantly less amount of sugar in it. Have you tried juicing? It is the best way to get a hundred servings of veggies and fruit into a single glass. Diet is so important in maintaining weight and building strength in the immune system. I know you are aware of this. I've read all your posts on this thread.

Anyway, I hope this may help you. J-Tube may be an option. Research it and don't let the docs scare you or tell you no. Come to the EC Discussion Board... Check out the threads on J-Tube... A lot of HELPFUL info... William is a great help there, too.

Best of luck to you and your mom!!

~Jayme

MemphisMargaret
Posts: 18
Joined: Mar 2012

Bennette

I think you are making the right choice. Keep me posted on the IL2 treatment. My husbands MRI results this week are that most of the brain tumors ar shrinking but 3 have grown...so tomorrow the docs consult and decide what is next. We just started a prescription of Megace to try and stimulate his appetite. Will let you know if it has helped in a few days. You are in my prayers.

Bennette
Posts: 65
Joined: Mar 2012

Thanks to all of you for your help. I had to take my mom to the ER last Thursday, they found out she has a tear in her bowel system, making her septic now. It is not healing itself and they don't think she can survive a major surgery. Per her wishes we have a DNR in place and are making arrangements to get her into the best inpatient hospice we can find. We think it will be another day or two before they can move her. Yesterday they took her off all monitoring and are just giving her antiobiotics, fluids, and pain meds until she leaves the hospital.

This is not how we expected it end, but she seems almost relieved. It has been a short but difficult battle, but we are going to do our best to make the most of the time left!

Thanks for all the support and advice you all have given to us and I wish you all the best in your journeys, may they be longer and much more successful than ours!

Yours truly,

Bennette

jimwins's picture
jimwins
Posts: 2079
Joined: Aug 2011

Hi Bennette and thanks for the update.
I'm sorry to hear things have gone in this direction.
You are in my thoughts.

Hugs,

Jim

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