Topic: new to cholangio...

hello all, i've been enjoying reading and learning.  my husband was diagnosed november 7 with intrahepatic cc, unresectable.  lymph nodes involved include cardiac (pericardiac?) and some others i can't remember.  he has finished his first cycle gemzar. 3on/1off.  we sought a second opinion and got the same answers, except for this doctor would have suggested clinical trials first, which our doctor never did.  however, i have searched the trials and so far found only one he qualifies for, once he's been off chemo for 28 days.

i have researched a TON.  this is a crazy cancer!  btw, my husband is 55 years old.  he has been healthy as a bull all his life, never even a hospital stay or a special test!  suddenly he had a gallbladder type pain in october, diagnosed gallstones, then the tests kept going, and here we are.

right now my big problem is cooking.  i am a good cook, but it's hard to satisfy him now with no meat, no fat, no sugar.  i go for pure veg and fruit, very plain and delicious, but he likes more comfort-type foods.  i just don't know how to make comfort foods without butter and such!  is there a suggested diet to avoid taxing the biliary system, i mean an actual menu, maybe even with recipes??

i will be reading here all the time, i'm sure.  i don't know what to expect, of course, although i took care of my dad through his lymphoma and his death (at home), my 16-year old through four strokes (hospital-living not the greatest), and my mother through broken neck, back, and other issues.  i feel i've been in training and now it's time for the marathon!!!

thanks to all, i know this site will be a huge support.
ana

it takes what it takes

Re: new to cholangio...

Hello and welcome to our world. Sounds like you are totally on all the right tracks. Why not just take comfort foods and use substitutes for the bad stuff.
I have one secret for red spaghetti sauce.  Instead of adding sugar to the sauce add baking soda. Takes out the acid and sweetens the sauce. Other than that I substitute olive oil for butter and use sea salt (kosher). Our favorite salad dressing is just fresh lemon juice and olive oil. Perhaps if you went on line and looked up diet plans / recipes that would help. Unfortunately yes, you have entered the marathon but you sound like a very together, strong lady with a sense of humor which helps immensely. Please keep us posted.

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.

3 (edited by tiapatty Wed, 10 Dec 2008 23:05:27)

Re: new to cholangio...

Ana,

Welcome and I am in awe of you, you sound like a gold medal caregiver, your family is lucky to have you and we sure can use you here. It sounds like you have been through a lot but have not let it get you down, we need that kind of optimism here so please visit often.

I am a librarian and I always advocate for people to use their local libraries, they should be able to help you get some cookbooks that consider nutrition for cancer patients. There is one in particular titled One Bite at a Time: Nourishing Recipes for Cancer Survivors and Their Friends by Rebecca Katz but there are plenty of them out there.

When my mom was sick I looked for a cookbook specifically for liver cancer patients but all I found were books on how to do a liver detox.

Patty

Re: new to cholangio...

wow, thanks so much for the good words.  i love the library, tiapatty, and it's right around the corner from work.  i did a quick search there, like one minute, looking at the books, but i am going back more at leisure.

i'm so glad i found this place.  my husband does NOT want to talk about this much at ALL.  he has always been kind of a "denial" person, and for now, i think it's helping him.  i, on the other hand, feel more power by talking it all out.  so i have found my niche!

thanks again.

it takes what it takes

Re: new to cholangio...

Ana,

I also want to welcome you to the site. You have found the right place to talk it all out.  Hopefully your husband will be able to talk about this with you soon, but if not or until then every one here is willing to listen & try to help & support you.  It does sound like you are doing a good job. This cancer follows no rules, but what you are describing does seem to be typical of CC for many.  Just know that we are all here for you. I will be hoping for the best for you & your husband on this journey that no one wants to take. Don't forget to take care of yourself so that you can stay strong for him.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: new to cholangio...

Ana....I, as you and many others, have felt the same about this board.  It was and is my biggest support system when it comes to this cancer. It would be wonderful to hear about your success with your new cooking adventures and how your husband is able to enjoy his comfort food.  In fact, possibly we can start our own little cookbook where we share our experiments in the food department.
Hugs to both of you,
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: new to cholangio...

i love the cookbook idea!

it takes what it takes

Re: new to cholangio...

A recipe book would be a great fundraiser for this site too!