Re: My Husband and Cholangiocarcinoma - Part 2

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

Re: My Husband and Cholangiocarcinoma - Part 2

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

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: My Husband and Cholangiocarcinoma - Part 2

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

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.

Re: My Husband and Cholangiocarcinoma - Part 2

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

Re: My Husband and Cholangiocarcinoma - Part 2

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Husband and Cholangiocarcinoma - Part 2

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

Re: My Husband and Cholangiocarcinoma - Part 2

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

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Husband and Cholangiocarcinoma - Part 2

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

Re: My Husband and Cholangiocarcinoma - Part 2

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

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

So many great suggestions here.  Just wanted to add what my Mom tolerated when she was on the gem/cis combo.  I will start by saying she was overweight before her diagnosis and was still big til the end.  (She was actually quite upset that chemo didn't make her more nauseas, as she was really hoping to lose some weight!)  Boost shakes were something she always tolerated well.  And soups and stews - they were comforting and warm in her belly.  I LOVE to make soups, so I'd cook up big batches and freeze them in 1-cup portions.  Soups are a great way to sneak in all sorts of goodies, including proteins, veggies, beans, even tofu.  And toppings can add needed calories - shredded cheese, dollops of sour cream, diced avocado, etc.  Wonder if you could add that protein powder to soups?

~Kim
my mother lost her 16 month battle with CC 9/26/10
"Mothers have as powerful an influence over the welfare of future generations as all other earthly causes combined."

Re: My Husband and Cholangiocarcinoma - Part 2

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

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: My Husband and Cholangiocarcinoma - Part 2

All:

Tom has been eating MUCH better this past week.  And just when he's thinking about 'giving up the fight' we learn that his tumor markers are down to 120.  Previously they had been 194.  So, that is good news to some extent.  He just does not like the 'quality' of his life and believes that the doc's are only prolonging the inevitable (sp).

However, we continue to plod along day by day and I'm really getting creative in snacks, meals, malts, shakes, desserts and continue to encourage him in every way I can.

You guys are awesome and hugs to all of you.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

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

Re: My Husband and Cholangiocarcinoma - Part 2

You are the best pair of "kickers" I know! Hoping you kick yourelves all the way to February!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

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.

Re: My Husband and Cholangiocarcinoma - Part 2

Tom is back in the hospital. White blood count elevated and they are growing cultures to pinpoint the source of the infection.  I suspect the drain in the liver. The Wound Team will be checking on the bedsore he has on his tail bone and how to treat that. Doc said I was doing good, cause it's clean and not infected! And I want it to stay that way so I suggested that the wound team be consulted and give me some ideas on how best to continue treating it.  Probably a Waffle Roll Pillow will be prescribed. That way he won't have so much 'pressure' on his tail bone when he sits.  He will be haveing an Ultrasound tomorrow and parentheses to drain the fluid off his abdomen.

He had a transfusion going when I left the hospital tonight, his red blood count was down to 7. Generally he gets a transfusion when it's at a 9.

Once they get him on the correct antibotics and he'll start feeling better!

Prayers are gratefully accepted. Lets keep KICKIN' that cancer!

Oh, the best thing is that the CTScan revealed that the 'mass' in his pelvic area is GONE! Now I ask, was the previous CTScan read incorrectly? Was it read by the same radiologist who said his gall bladder was grossly intact with no abnormalities? (this was 2 years AFTER the gall bladder was REMOVED) Maybe this radiologist needs to go back to school?

I will be so upset if it was 'mis-read'!  I'll be asking some questions tomorrow!

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret I am so sorry about your turn of events. Mis read tests! NO! As if we don't have enough to contend with. I know you will keep us updated and in the meantime many thoughts and prayers from the valley of the sun where we have been having a cold streak to the colder Tundra! Take care!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Dearest Margaret,

Sending lots and lots of prayers your way.

Thinking of you and Tom.

Keep strong and keep kickin that cancer!

Much love

Andrea x

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: My Husband and Cholangiocarcinoma - Part 2

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

Re: My Husband and Cholangiocarcinoma - Part 2

Thanks for the continued support!  Just found out that his white blood count is over 30,000 (under 10,000 is considered normal).  He's had two tranfusions of red blood cells and is on constant IV Antibotics.  I'm working today and he is patiently waiting for me to come...his words "I need my wife"...aww how sweet!

Hugs,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Awwww!  Give him hugs from the other Wisconites!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

Sorry to hear that Tom is back in the hospital, lets hope that the docs can get to the bottom of this and that you can get Tom back home with you asap.

Sending over Tom's way a ton of positive thoughts.

Best wishes to you and Tom,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Husband and Cholangiocarcinoma - Part 2

Update on Tom.  He did have high ammonia levels but they are coming down as they are giving him something to make him have loose stools.  When the liver is not functioning correctly it cannot filter out the ammonia (which can attack the brain and is very bad) so the only other way to get rid of it is to 'poop' it out!

Yesterday his kidney function was a zero, and today it's back to normal so that is a good thing.

His bile drain tube is being exchanged today -  the bile started growing something, so the infection is in the liver and they will have him on the correct antibotics later today once they figure out what ones will kill the infection. 

He will most likely be released tomorrow......and the doc says that the 5 new 'tumors' that were found in the liver are not really tumors, but they are lesions caused by infection......so did he have chemo when it was not really necessary????  The infectious disease team will be putting their heads together to see what long term antibotic they can get him on so that he doesn't keep getting the infections.  The liver is becoming 'used' to the levaquin and that is no longer working.

The wound care team said they cannot do anything for his bed sore on his tail bone and that they can't heal it.  I WILL GET IT TO HEAL myself!  Even if he has to have his bottom exposed to the air every hour on the hour!  We are getting a ROHO PILLOW for him to sit on.  At a cost of $430.00.  REALLY?  Are you kidding me.  $430 for a pillow?  That darn thing better work wonders!

Go with God and KEEP KICKIN' THAT cancer.

Margaret