My wife’s extrahepatic CC
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Eli,
I know your wife was very fit prior to surgery. I was also and did not have a pound to loose which seemed like a good idea at the time and then you get sick and then all of a sudden you look anorexic. Anyway, I have an iphone and use an app called My Fitness Pal. I can enter everything I consume for the day and it is like a nutrition tracker. You can enter your weight and your goal (in my case to gain weight) and it will calculate how many calories, grams of fat/protein etc you need to have in a day in order to meet your goal. You can also enter your activity and it will subtract what you burned. It’s a really great app and helps me be realistic about what I’m eating. Like some days I think I ate enough and turns out nope, not even close. Maybe your wife can try that to help her gain some weight. If she doesn’t have an appetite that’s another issue. But anyway, this helps me a lot plus gives me a little control of an otherwise uncontrollable situation. I like control.
Best of luck!
SusieHi Kate,
Our surgeon told us exactly the opposite!!
I asked for creon prescription before discharge from the hospital. He said we don’t need it, because my DW had enough pancreas left to produce good amount of enzymes on her own. He sent us home without prescription.
He was right. 6-8 weeks after Whipple, her New-And-Improved, Man-Made digestive tract started to work near perfectly. She even said it worked better than the old one, given to her by Mother Nature (she had digestive issues her entire life, but she was never diagnosed with anything). It was good while it lasted… chemoradiation messed it up again. Thankfully, she recovered from that too.
She is not gaining weight b/c she is not consuming enough calories. As simple as that.
I do hope that steroids will help. My wife’s dietician said that some of her patients gained a lot of weight while on gem/cis. I’m guessing b/c of steroids.
Best wishes,
EliHi Eli,
I just wanted to say that after my dad’s whipple (with similar results to your wife) the surgeon said he would need creon/enzymes for life. When he was on chemotherapy he got bad diarrhoea, which we thought was down to chrmo, but in hindsight he’d becom laid back with the creon and really needs it before everything he eats. The surgeon said he could double/ treble the dose and it would not be harmful-the diarrhoea is usually down to malabsorption after the whipple. Now my dad has been able to gain plenty of weight, but he still is careful to always have enzymes and eat healthily.I really hope that your wife makes some improvements and is able to gain a little-I’m currently on steroid treatment for colitis and can vouch for its ability to make a person gain weight-I’ve had iv hydrocortisone and prednisolone and gained huge amounts (but I’m also pregnant so who knows what it’s down to). With fingers crossed for the scan and positive results from the chemotherapy.
Best wishes,
KateTflory: Thank you! Very helpful post. Papaya enzymes sounds like something we may try right away.
Byron: Thank you for your warm welcome. I think I can relate to what you said about not wanting to start chemo again. I just heard exact same thing from my dear wife. 6 weeks after chemoradiation, her energy level is finally back where it used to be before treatment. Good luck with your next round!
Dearest Eli, Sueayers, tflory, I wish to add my welcome to you all as well. This is a huge labor of love and we all have lots of it to share. tflory, I can relate to your husband. I contracted ulcerative colitis at age 19 and had my colon removed 20 yrs later. I only wish surgery were an option to me to remove my cancer. Right now, chemo is all I have to look forward too unless situations change inside of me. Eli, they always give steroids with my gem/cis regimen. By the way, I get to resume my chemo day after tomorrow following my month dealing with other health issues. I have been feeling so good this past week it was very hard to say, yes, lets start chemo again, but I know it has to be done.
Again, welcome folks, and please know that my prayers are with you and your families.
tflory…..great job – your post in informative and helpful to others struggling with weight loss.
My concern is that it may become lost in the threads. Would you please be so kind and re-post it in the “Nutritional” section of this site?
Thanks much for considering it.
All my best wishes,
MarionEli….”venting” does not require an apology on this site. This is a difficult disease to diagnose, to treat and it has the tendency to stretch us emotionally. This is the place to let it out.
All my best wishes,
MarionEli, My husband has lost 52 pounds and we have the same problem with the ensure plus. we then tried Carnation instant breakfast. This upset his stomach, maybe too much dairy. This site gave me some great nutrition references. I used them to do some searching on my own and here is what I found. Nestle makes a product called benecalorie and boost resource breeze . I emailed them, they do not offer samples, but you can order thorugh thier website. Abbott Laboratories makes the Ensure products. I emailed them for samples. They sent me an email with a 1 800 #. After calling and talking to Amanda who was soo helpful, she is sending me samples of Ensure Enlive which is a fruit based supplement. She also told me of a flavorless powder called Polycose you can mix in and a fruit punch flavored liquid called Promod. Everything can be ordered from their website or she said your local pharmacy can special order it for you. Their number is 1-800-986-8926 , I don’t know if this will work for you, since you are in Canada, but you can try. I also contacted a company that makes a product called Scandishake. They have great recipes on their sites for things besides just shakes. They also make a sprinkle on calorie booster called Scandical. They are sending me samples of both. The number is 1-800-472-2634, they are based out of Alabama. This is all I have found on the internet. Of course, almost everything has to be special ordered and isn’t cheap. As for the steroids, My husband takes decadron two a day for three days after chemo and just recently added on days four and five one pill to help with the nausea. They do help with the appetite. We all take enzymes at our home to aid digestion sometimes. We especially like Papaya enzyme plus that I get at the health food store. It has mint and chlorophyll added to help upset tummies. Hope this info helps.
mother,
I am very sorry to hear about your loss. I trust that 3 kids keep you extra-busy. Hopefully busy enough to soften your grief a little bit.
To be frank, I’m not surprised to hear about poor quality of care your mom received. My wife’s care has been good, but I wouldn’t call it great. With this horrible disease, anything short of the best possible care is not good enough. When I look back at our journey, I see many missed opportunities, or outright horror episodes. I’m trying to put these experiences behind me but it’s easier said than done.
I apologize profusely but I really need to vent about this:
We went to ER on April 18th. The surgery was done on July 4th. That’s 11 weeks delay. What happened in those 11 weeks? Not much, really. It was mostly dead wait time for appointments. We knew we were sitting on a ticking bomb, yet the system failed to show any sense of urgency. We waited 3 weeks for the endoscopic ultrasound (the final test that confirmed the diagnosis). We waited 4 weeks for the surgery after we signed the consent. My wife ended up with positive nodes and positive margins. I can’t prove that wait times contributed to the poor outcome. On the flip side, no one can disprove it either. Our surgeon admitted that wait times were inexcusable from medical point of view.
I apologize again for venting.
And yes, as you said, I try to do my best to stay on top of the doctors. They know me as the crazy husband who brings a briefcase of medical studies to each appointment. I learned to recite a disclaimer: “Doctor, I’m not trying to do your job. I just want to make sure that we consider all possible options”. Most of them take it the right way.
Eli
Eli,
Best wishes for your wifes scan on Friday. I too live in Ottawa. My mother passed away Jun 1, 2010 at the Ottawa General from Cholangiocarcinoma. Sounds like your wife is getting great care…things weren’t the case so much for my mother. Diagnosed at Queensway Carleton FEb 6, 2010 and only got to see an Oncologist twice….once on April 19th and May 14th for a few minutes. It was a very short and frightening 4 months. I am not fond of the care she received. It may not have changed the outcome, but the journey could have been very different. I am 44 and have an 11 year old too, plus two others… it seems after being on this web site and reading pretty much everyday for almost 2 years now…this disease hits just about anyone….all my best in your fight. Stay on those doctors, don’t let them let her down.
You are welcome. Your wife might be right in her assessment of not needing to take the enzymes anymore although, it won’t hurt to try. In fact many members on this site continue to aid the digestion with enzymes indefinitely. Things are a bit re-arranged in the digestive tract post resection and often times a harmful aid such as enzymes can really make a difference. Everyone reacts differently though and trying to find the right thing for us always is accompanied by much trial and error. Good luck and please stay in touch. We care.
All my best wishes,
MarionMarion, thanks for mentioning steroids. I never heard about steroids given concurrently with gem/cis. Our oncologist never mentioned them. I will do my homework before we see him again.
Thank you for the tip about pea/rice protein. We will give them a try. Hopefully they cause less bloating.
Re enzymes: yes, my wife took them before/after Whipple when she had trouble digesting fats. She doesn’t feel she needs them now.
Thank you again for your helpful reply,
Elieli….Seems that you have tried just about everything. Have you tried enzymes before each meal? Additionally, the only other additional source of protein lacking the bloating effect may be either pea protein or rice protein.
At this time I would not worry too much about a possible weight loss with the upcoming chemo. Most likely she will receive some type of steroids which have shown to increase weight. And, as you have mentioned if the need for TPN arises then it will sustain her through the treatment.
All my best wishes,
MarionMarion and Gavin, thank you very much for your nutrition advice.
We’ve been talking about nutrition on a daily basis ever since my wife got ill. We researched all the right web sites. We studied books on nutrition for cancer patients. We see a dietician at the cancer clinic.
Yes, we tried Ensure, Boost and Glucerna. She absolutely hated the artificial taste. I tried suggesting she should think of them as medicine rather than food, i.e. not expect much in terms of taste. My “clever” trick didn’t work.
We tried mixing our own protein shakes. That didn’t go down well either. DW complained about excessive bloating.
We tried mixing protein powder in soups, yogurts, cereal, etc. She was able to tolerate it before chemoradiation but not afterwards.
We tried taking CREON to aid with fat digestion. That seemed to have contributed to nausea and diarrhea. We had to stop it.
At this point, I have to back off and let her do what she thinks is best for her body. She eats a varied, healthy diet. Lots and lots of small portions throughout the day. She gets enough calories to sustain her weight, but not enough to start gaining.
I’m scared of what’s going to happen when she starts GEM/CIS. If she continues to lose weight, she may end up in TPN territory. I don’t know what else I can do.
Hi Eli,
Thanks for that. I am glad that your wife is doing well physically and that her energy level is good right now. And as for some foods being a no no, yes my dad had that trouble as well and he had to watch what things he would eat. As to the weight issue, is your wife taking any supplements in her diet that could help increase her weight? As Marion points out, there are many things such as drinks, shakes and powders that can help with this. My dad used to use the Ensure drinks to help with his weight and they might help your wife here.
In case you haven’t seen it, we do have an excellent nutrition board on the site that can be found here –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=12
Another link here that may be of interest –
My best wishes to you and your wife,
Gavin
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