Discussion Board Forums Grief Management My Husband and Cholangiocarcinoma – Part 2

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  • #42110
    cherbourg
    Participant

    Margaret,

    One of the things I found helpful are protein powders that you can add to anything.

    One of the oncology nurses suggested a website called : http://www.unjury.com when my Mom was undergoing chemo and we were concerned about her weight. Mom was also prescribed about 20ml of Megace which worked wonders with her appetite.

    The website offers medical grade protein powders. I recently had lapband surgery and am using the powders to get added protein.

    The stuff is amazing with no aftertastes or grit and comes in 6 flavors. The site has great info for bariatric patients to Chemo patients to Seniors.

    For breakfast I have a large 24 oz glass of one scoop of vanilla or chocolate splendor protein powder (20grams) and add a carnation instant breakfast packet (9) grams and fill the cup with 2% milk and fill with ice. Counting the milk I have 35 grams of protein in what tastes like a great shake!

    In Tom’s case you could use whole milk for the added calories. These powders are also great in soups (keep the temp under 130 degrees) and in numerous types of smoothies.

    You are an amazing woman and your love for Tom shines through in all of your posts.

    I’m sending prayers for strength, and numerous hugs and lots of love!

    Pam

    #42109
    dianne-n
    Participant

    Margaret,
    I am so sorry about Tom’s weight loss. I know of this from the patient’s viewpoint and it’s very strange. After my surgery in Jan. I just “could not” eat for some reason. My wonderful husband tried everything, including the talking to, but I ate very little….. and I was not even on any chemo. I lost 30 pounds, which fortunately I could spare, but am now eating just fine. I wonder if the lack of appetite has something to do with the sense of smell? After my surgery a good friend gave me some expense hand balm to use in the cold MN winter. When I smelled it I almost gagged because it smelled so awful and I wondered how she could possibly give it as a gift! Six months later when I finally got the balm out again, it had a very lovely, flowery smell. Not sure if the anesthesia or the cancer caused the nose problem???, but I found it very interesting. I’m going to write the names of these drugs, legal and illegal!, down in case I need them in the future. Margaret, so happy Tom has found something he can eat, and I hope the prescription helps even more.

    Dianne

    #42108
    gavin
    Moderator

    Hi Margaret,

    I’m glad to hear that Tom was able to have his chemo yesterday and also glad to hear that you are doing what you can to try and make him eat. And from what you have said, it sounds like your “wifey” talked worked! I so like what you are doing when Tom asks for this or that food wise. He asks for one piece of taost and you give him two, great stuff! I did the same with my dad when I made his tea at night, I would ask him how much he wanted to eat then I would just give him more than what he asked for! And I finally stopped asking if he wanted water to drink as he wasn’t drinking enough fluids, so I just started bringing him glasses of water!

    Perhaps Tom’s diet could be supplemented with the nutritional drinks that have been mentioned such as Ensure or Scandishake mixes? My dad was taking the Ensure drinks for a while and he got on quite well with them. My mum also uses these types of supplements daily as her COPD nurse is always on at her to put on weight.

    As to trying to increase Tom’s appetite, have you heard of Marinol? Perhaps that might help.

    http://en.wikipedia.org/wiki/Tetrahydrocannabinol

    Oop’s just noticed that you said Tom was given something to help increase his appetite, lets hope that that works for him.

    My best to you and Tom,

    Gavin

    #42107
    lainy
    Participant

    Margaret, I don’t know about Tom, but I am shaking in my boots!!!!!!!!!!!!!!!

    #42106
    mlepp0416
    Participant

    THANKS EVERYONE!

    I did make the ‘threat’ of a feeding tube and he very quickly declined that.

    So then I gave him the very ‘wifely’ talk – it went something like this….”You are 63 years old, and I am not your mother, I am your wife. I can’t make you eat, all I can do is make food for you. You know I will make anything you want to eat and will go buy stuff to make what you want if it’s not in the house. You are a big boy, pull on your big boy pants and tell me what you want to eat or you will eat what I make. If not, you will continue to lose weight and you will not be here for Thanksgiving, Christmas or little Tommy’s 2nd birthday and I will be planning your funeral, so what do you want for breakfast?”

    He wanted instant oatmeal with Raisins, Dates and Walnuts. Usually he eats 1 pack made with water. Today I made 2 packs made with Whole Milk. He said “I can’t eat all this” and I told him to eat what he could. He ate it all except for 2 small spoonfuls. About 1 pm I asked him what he wanted for lunch, his response was 1 piece of french toast…..so I made him 2 and he ate all of it! We’ll see how supper goes tonight….but maybe my ‘wifely’ talk got him on the right road.

    Thanks for everyone’s support.

    Lainy, I REALLY like your idea….I think caregivers could use some illegal substances (and I know where I can get some, my brother is from the ‘hippie’ generation). HA! Let me tell you that watching Tom go from 185 down to 111 is certainly depressing. As you can imagine, he is nothing but skin and bones.

    Marion: Too bad we live in Wisconsin, it is not legalized here yet for medicinal purposes, but I too would support that!

    Sunshine: His doc did prescribe something to increase his appetite, we just have to go pick it up. (will be doing that later today)

    Tom: Whatever you do, please have a talk with Ben about eating and to keep eating as his body needs the nutrition to fight the CC and he will need to keep his strength up so he stays at a healthy weight, this is too terrible to watch someone waste away.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    #42105
    marions
    Moderator

    Margaret….being that I reside in the State of California and the legalization of marijuana is on the ballot for the upcoming elections, I strongly support the use of this substance. My husband had been an attorney and it did not matter to me whether it was illegal or not, what mattered is that he would increase his appetite.
    I also was impressed with the amount of support coming our way. (And, the increase in visitors.)
    Hugs are coming your way,
    Marion

    #42104
    32coupe
    Participant

    Margaret,
    Have you tried any of the nutrition drinks being suggested? There are a variety of them out there – something must be appealing to Tom. Come on Tom – you gotta do your part here Buddy! When I was recovering from surgery and then going through treatment, I too had no appetite. My weight was down by about forty pounds. My daughter came up with a plan which worked for me. She brought one of those Jack LaLane juicers over to the house and began concocting a variety of raw juices – most of which were a carrot base. She was more concerned with my nutrition than weight. I was able to drink down a few of these each day and over time was eating fairly normal.

    God Bless!!

    bob

    #42103

    I have no clue about what to give a person who is on an IV, but our Dr has prescribed a nausea medication (generic name is dronabinol) which is a generic form of marijuana and it works. Once a day is enough for us now, we tried twice a day, but that was not good for us. For appetite Megace is one medication that will cause a patient to eat and eat some more. Mom went from less that 100 to 114 in about six weeks and was on a continous “snack” from morning to night—get ready to spend big bucks at the grocery if it is prescribed! I hope something works for you.

    #42102
    lainy
    Participant

    Margaret, I can’t believe Tom’s weight. Teddy is about 147LBS and is loosing very slowly. The only thing I give him is a Carnation Shake every morning with a banana in it. He likes it and Hospice said it serves as a whole meal and he can have it in place of any daily meal.

    Tom, good luck on the “funny stuff”. Man, how about for this Caregiver? I could use some stress reliever and have fun while dong it!?!?! Actually you, Margaret and I could meet in the middle and have some fun.
    P.S. I like FLL. My parent lived in MIA for 25 years off 163rd and Biscayne Bay.

    #42101
    tlsinftl
    Member

    Margaret,

    I don’t have any suggestions yet, as Ben just started his chemo yesterday but it will be interesting to see the responses from others. We have talked about him using “illegal substances” when the time is right (I just need to figure out where to get them). I did a search of marijuana on the board and it looks like it has helped some people….there are 12 states (I think) that have legalized marijuana for medical use….but if it gets to the point…I will be doing whatever I can to make things easier….

    tom

    #42100
    mlepp0416
    Participant

    All:
    Well, Tom was able to have his Chemo yesterday, so that is the good news. The bad news is that he is down to 111 pounds so he’s had about a 7 pound weight loss. His Onc is very concerned about his weight, as I am. She told him that he HAS to eat.

    No matter what I suggest, he says ‘uck, I can’t eat that” – so I finally said, “If you don’t start eating you won’t be here for Thanksgiving, so quit making plans!” He is 63 years old and I can’t “make” him eat (but I still try) and I don’t know what else I can do! (Can you hear the frustration in my voice?)

    Some days it is just so frustrating living with CC that I just want to scream at the injustice of it all. I just want to go back to my life before CC (but know that it would mean that Tom is gone then) so I really don’t want that!

    So here’s the deal, I need some suggestion on what other people with CC who are on IV Chemo (Gemzar and Cisplatin) can eat and what they can tolerate. On the UP side, the doctor has prescribed something that will increase his appetite but the side effect is blood clots and we have to watch for swelling in only one side of his body can it can mean a blood clot, go figure eh?

    I told him he should just start smoking some illegal substances cause rumor has it that will increase his appetite. He says that he doesn’t want to do that cause it will show up in his blood work. To which I say SO? What are they going to do to you? Throw you in prison?

    I guess I will just have to continue prodding him along and trying to get some food into him so he doesn’t continue to lose weight. Looks like I have some arm twisting to do! Anyone wanna come help hold him down while I force feed him?

    I will KEEP KICKIN’ THAT cancer if I have to insert a feeding tube….hummm that’s a thought….he didn’t like the ‘tube’ after his kidney stone, I think I will go discuss a feeding tube with him, maybe that will convince him to start eating cause he HATES tubes!

    Go with God,
    Margaret

    #42099
    lalupes
    Participant

    Thinking of you & Tom, Margaret :)

    Julia x

    #42098
    gavin
    Moderator

    Hi Margaret,

    Great news about Tom! Am keping my fingers crossed as well that Tom can get another treatment in next Friday. Keep kickin it indeed!

    Best wishes to you and Tom,

    Gavin

    #42097
    lainy
    Participant

    Way to go, TOM! Margaret you just keep kick’in, there is somthing to be said about that!!!!!!!!! Wonderful, made my day.

    #42096
    marions
    Moderator

    Great news, Margaret. Oh, the rollercoaster ride of this disease. You are on the up again and going up while the tumor markers are going down. Just what we want to see.
    Best wishes,
    Marion

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