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  • #82809
    marions
    Moderator

    Suzy…..I wish your Mom was able to move around a bit as it may help reduce the swelling.
    Fats are difficult to digest for some, but for others it encourages weight gain. I increased my husband’s calorie intake by offering him ice cream at any time of the day (or night.) He loved it and it did not cause any digestive issues.
    Please keep us informed about Tuesday’s visit with the physician.
    Hugs,
    Marion

    #82808
    kvolland
    Participant

    Suzy –
    Sounds like you have your hands full. It’s good that you are being persistent though – you never know what you will find.
    Intake can be hard. We struggled with it with my husband. The first and foremost thing is make sure that every piece of food that passes her lips has some nutritional value and that may mean adding to foods she is already eating. Dry powdered milk can be stirred into about anything and it will dissolve adding calories and protein without changing the taste the way protein powders can. My husband wanted jello which has some protein but I made it substituting the cold water with Ensure Clear (also have used other clear protein drinks such as IsoSource) and let it set up. It sets up the same but a little cloudy and tastes pretty much the same with double the calories and protein. I would think you could mix it with fruit juice and freeze it for homemade popsicles too. Then we made protein shakes with frozen fruit, ice cream, vanilla yogurt and milk then we were really struggling I added protein powder or powdered milk then blend it all up. Goes down good and even just a couple sips has a lot of calories. Get creative and like Lainy said Carnation Instant Breakfast is great too.

    Good Luck,
    KrisV

    #82807
    lainy
    Participant

    Hi SuzyQ, I am so sorry to read about what your Mother is going through. You have been doing all the right things with having her graze through the day on small portions of food and the nutrients. My husband loved Carnation Instant Breakfast the best, vanilla and I would blend in a banana. Hospice recommended it and it can take the place of any meal. When he felt like trying to eat I did comfort foods like buttered noodles, homemade chicken soup, scrambled eggs and toss a little cheese in…..things like that. Sure hope you get some answers on Tuesday. Be strong.

    #82806
    scheitrumc
    Participant

    Are the tumors themselves causing the swollen belly ? That is how it began with my wife. Her stomach was quite distended. The chemo reduced the size of the tumors which reduced the belly.

    Also, we found Orgain to be a better tasting and more nutritious supplement than Ensure. If you can’t find it locally, you can purchase it online.

    Carl

    #82805
    suzyq1481
    Member

    We found a specialist at the UF Health Liver Cancer Center in Orlando (It used to be MD Anderson in Orlando). He seems to know what he’s talking about a lot more than the oncologist from FL Hospital. My mother is super swollen. It started in her legs, moved to her belly, and is in her right hand now. The leg swelling is kind of controllable with elevation and compression hose, however her belly is so swollen we feel like it must be causing some discomfort. The doctor did an ultrasound with the possibility of doing a paracentesis, but there was no fluid to draw out. So, he added another diuretic, to hopefully decrease some of the swelling. He also decreased her pain meds to just percacet to see how that works, so far it seems to be doing fine (we can still take the others if necessary). Without the long acting morphine she seems to be waking up a bit, but still isn’t all with it like she used to be. We’re hoping that she’ll at least stay awake during the day more and sleep more at night. He also staged her at Stage 4, when her thought she had ascites, but now we realize it’s not ascites and have an appointment on Tuesday to see what else can be done and if she’s still Stage 4. Has anyone else had experience with this swelling? And, what did you do for it? Also, she’s not a candidate for any treatment besides comfort care because she doesn’t get up or do anything on her own right now, so we’re trying to get her a little stronger, but she doesn’t want to get up or eat. She only wants to eat fruit and popsicles, so we’re giving her fruit cups, applesauce, and popsicles, then we also give her ensure (one medicine cup at a time throughout the day), a liquid multivitamin, and a protein powder made into a pudding that she eats throughout the day. But, that’s about all we can get into her, we can never get her over 800 calories. Does anyone have any suggestions on small meals with dense nutrition? Thanks.

    #82804
    lainy
    Participant

    Suzy I just posted on your other post but glad you are at the Hospital. Again, is she on any Meds at all? Have they given you any reason at all why she might be in this delirious state?

    #82803
    suzyq1481
    Member

    Right now we are just at FL Hospital. We are working on getting into Johns Hopkins and MD Anderson.

    #82802
    kvolland
    Participant

    Suzyq –
    Welcome to the family. You will find more support and suggestions from this site than most anywhere else. I second Lainy in that we definitely suggest 2nd and 3rd opinions with this cancer. You want to make sure also that where ever you are getting treatment, they have experience in treating cc since it is so rare you need to make sure you are at a bigger cancer center.
    Chemo brain can be tough to deal with. My husband is just recovering from his second go-round of chemo and chemo brain was worse this time. All I can say is try not to get frustrated….it’s hard. I know things have come out of my mouth I didn’t ever mean to come out. One thing I do is make him exercise his brain just like his body….we watch Jeopardy and Wheel of Fortune most every night and I have him try to play alone. Some nights are better than other.

    Keep us posted and ask questions that is the best thing you can do.

    KrisV

    #82801
    lainy
    Participant

    Dear Suzyq, welcome to the best place to be for support with CC. I am very sorry to read about your Mother and have a question, where is she being treated? Read up as much as you can here and also use our search engine at the top as knowledge is our best tool for fighting this Cancer. My other suggestion is to seek a 2nd and even 3rd opinion as a new set of eyes on the situation can prove to be a very good thing. Being a Caregiver is the hardest thing I think we have to do in life. Please keep us updated on your Mom’s progress. You are not alone you have a whole big new family right here.

    #10124
    suzyq1481
    Member

    Hello there,

    My mother was recently diagnosed with advanced cholangiocarcinoma. She has a one large tumor around a blood vessel as well as smaller tumors. The tumors are in both sides of her liver. She has gone through one chemo session and has another next week. We are very new to this and coping with CHEMO BRAIN!! I am her only child and her daily support/care giver.

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