My Husband and Cholangiocarcinoma - Part 2 (Page 2 of 15)

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

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

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

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 :  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

Kim,

You can add the unjury.com protein to soup.  They have an unflavored one and a chicke soup flavored one.  You just need to not heat it past 130 degrees. 

I too love to cook and soups are some of my favorite things!

Hugs,
Pam

GOOD NEWS again today!  Tom's bilirubin level is down to 9!  At last bloodwork it had come down to 17 - so it's even better this time!  His hemogloblin is also low, down to 9.  His onc wanted him to have a blood transfusion after chemo today but he declined, so we go in tomorrow at 8am for his one unit of red blood cells.  His onc does not want to wait until wednesday, so off we go in the am.  I will of course eat a great breakfast at the hospital as they have a great cafeteria there and make the best omlets!

And he has gained weight!  Yea for all the malts, poached eggs, pancakes, etc that I have been making him.  He is up to 117 lbs!  That is amazing!  His onc is well pleased with his weight gain and so am I!

So, he will have a scan done in two weeks (I think) to see where those nasty little tumors are at, and also the met to the pelvic area.  His onc is espically interested in that mass in the pelvic area to see if it has decreased in size.  At this point she is not overly concerned with the 5 small tumors in the liver, only that mass.

So we are KICKIN' that cancer big time and right now, I'm rooting for Tom to still be here in Feb. so we can celebrate our 10th wedding anniversary!  My son and his wife got married 15 minutes after Tom and I did, so we're hoping to be able to celebrate together next year just as we have done for the past nine years.

Go with God and KEEP KICKIN' THAT cancer!

Margaret

I never thought I would be strategical about how to ADD as many calories as possible to food! Sour cream! Ice Cream! Whole Milk! Full fat and fatty cheese! Bring it on!! My dad lost 40 pounds up front and then gained 25 back before he has started losing again. We are down 12-13 pounds since his markers and liver function have jumped and I am doing my best! If I could transfer 20 pounds, I would!!! Like Gavin, I try and overfeed my dad and let him decide how much he needs to leave behind. I also go to the local bakery two or three times a week to try and entice him.

I need to check with my dad's nutritionist, but there is an Ensure type drink, Dessert, or something, that is an amazing amount of calories but does not cause the problems that an all fat shake would...I have a pyloric ulcer, so too much fat makes me puke on queue! I understand how hard the balance is these days.

Margaret-

I hope the chemo is doing the job and there was no error on the readings! I also hope the blood and antibiotics get Tom back on track!!!

Stacey