Bile Duct Cancer Support Group

This is my first post on any kinds of cancer site. Until recently, my family has never had to deal with cancer, or any other serious disease. I've always known how lucky we were. I always was sympathetic to those dealing with it...But you NEVER fully understand until it hits you. Even now, I don't know that I fully comprehend it all.

My Dad was diagnosed with prostate cancer 2 years ago - he's doing well. He's 72. My mom was one of the healthiest people until just this past december when she went to the hospital because of Jaundice and that's when our lives took a turn for the worst. She's 72 also. They've been divorced for 20+ years but we are a close family and now more than ever I am extremely grateful for the support from my dad & step mother. My dad and I have talked more in the past month than we ever have.

Mom's tumor is not operable, she started chemo in January. So far fatigue is her biggest issue. My grandmother lived into her mid 80s and I foolishly thought mom would do the same. She thought the same as well. She's been so active her whole life, so healthy and takes very good care of herself. So being told you have cancer is a hard enough blow - being told you have a incurable cancer is just more than anyone can handle.

I'm 37 with no children, a new husband , two dogs a great career and a happy life - not perfect, but happy. I live in the mid-west, mom lives on the gulf coast. My 45 yr old alcoholic bulemic sister with 4 children and no job lives 2 hours from mom & they aren't talking for reasons to be explained in a different group. I am and will be the primary caretaker for my mom. I have absolutely no problem with that. Mom and I have been very close my whole life. But I do wish my sister would grow up and help. No time for crying over that spilled milk, though.

So, here I am - trying to hold on to hope, seek second opinions while mom goes through chemo and at the same time trying to think ahead about the hard stuff that is inevitable with this cancer - all the while staying positive & happy and real for my mom. She has great friends and neighbors. she wants to stay in her home with her dogs & life. I don't blame her. I've spent a month with her recently and she was here visiting a week ago. We will plan to go to D.C. soon if she feels up to it. I will be there as soon as she needs me. I know worrying about what you can't control and can't predict does you no good - but it is SO HARD not let your mind wander. Even though I can tell you without crying that my mom is terminally ill...I know I am in some kind of state of shock. I cannot imagine my life and our family without her. I have no idea how we will all get through this chapter. life has seemed to slow but move too fast all at the same time.

Thanks to anyone who is willing to listen. For everyone else who is going through this as well or who has already gone through it - my heart goes out to you & I'm sorry for your grief and pain.

XOXO Louise

Post edited by: DBL0311, at: 02/28/2012 06:21 PM

Hi Louise-

My mother was just diagnosed too in early March. Do you have any updates? Has she started chemo?

-E

Hi Eliza,

I am very sorry to hear about your mother's diagnosis and sorry for the delay in response.

I'm very happy to report that my mother is doing VERY well right now. She's been on chemo since February & she has responded to the chemo, the tumor has shrunk. I really had to work hard with my mom to get her to focus on her diet...increase vitamin C & foods high in antioxidants...but she's kept her weight up and she's out doing what she loves...being in the garden, walking the dogs, etc.

She had to have her stent replaced last month and she had complications from that, but she's recovered well from it. From what I've read about chemo shrinking the tumors, it can add on an additional 6 months or so for the person. I'll take all that I can get.

I'd be happy to talk to you more about what I've learned along the way. There aren't many people who are going through what we are going through...please feel free to email me at: dbl0311@sbcglobal.net

All the best

- Louise

I'm only 15 and my mum is on a Stage 4. I don't know what to do, I'm just so scared of loosing her. I just cry everyday even crying when writting this. How I hope this is just a bad dream.. I could never afford to not cry everytime I think about loosing her. She's just the best lady I've ever known in my whole entire life. I don't want to live without her. Help me what do I do to make her live long? pleasee god help me :'( momma I love you :'( why is this happening........ :'( and what should I do to make her be the most happy person? :'(

Post edited by: fm422, at: 06/12/2012 09:34 AM

Non of my friends understand the situation I'm in. :'(

Post edited by: fm422, at: 06/12/2012 09:36 AM

How are you doing, hon? I'm the one in the family here (the mom!) who has bile duct cancer, but I couldn't help reaching out to you. Maybe your mom is around my age--50? I have a daughter and son, and I know how hard this is on them. Please let me know how you're doing, and I'm willing to listen if you want to talk.

DBL0311, how's your mother doing these days? I hope that things are even more positive than your last update.

My mother was diagnosed with stage 4 bile duct cancer as well a few months back. She's done 4 cycles of chemo over the past few months. Got a call from the doc today and there's been minimal improvement. I'm going to ask around and see if there's a more advanced or proven combo of chemo drugs that maybe my mother can try. She's leaning towards stopping chemo altogether and just fasting/praying for God to heal her. I don't want to be selfish and just convince her to go through that awful chemo again but at the same time i know that the chemo can possibly atleast be something that could help or even save her.

Anyways, please provide an update DBL0311 and I'm curious as to what combo of drugs your mother is using. Thanks.

Elizahoney and jhan708...i am very happy to report that my mother is doing exceptionally well today. It will be 1 year this december that she was diagnosed with stage IV bile duct cancer.

My mom is on her 3rd round of chemo. We started with Cysplatin/Gemsar...her tumor markers dropped from 20,000 to 500. The tumor shrunk in size & liver lesions are almost reduced to the point where they can't be seen on the CAT scan.

After first round of the chemo, they dropped her to a lighter chemo. Her Dr. said a person can't be on that hard of a chemo too long. Her tumor markers came up to 1500.

We put her on a sister chemo of the gemsar/cystplatin (i don't know the exact name, but can get it for you if you like) and her numbers have dropped back down again. Good news is, at a later date, we can return to the original chemo that worked very well for her in the beginning.

Her Dr. said she's doing so well at this time, she can reduce the amount of Dr. Visits. Her weight is good. Her energy level is good (except for a few days post chemo, normal). She still gets low on magnesium & potassium sometimes and the dr. gives her a little boost.

I have her taking 1,000mg of vitamin C. I also have her drinking high antioxidant juices...Acai...100% organic. I order from Amazon from a good company. I recently ordered her a chemo patient drink called Pfrs. Supposed to help with energy.

She had some blood clot issues this past july and has had some dizzy spells/nausea on occasion.

I feel she is a huge success at this point as I am fully aware that some folks lose the fight within months. We set small goals. Frequent visits, daily phone calls to check in and chat.

It's so Mental AND physical. Stay positive. keep looking.

As for your mom, Jhan708. I don't know her age or anything about her, but try to get her to try a new chemo. There are more and more drugs they can use on this cancer. You are not being selfish. This is one of the toughest cancers. Please email me, I'd be happy to chat with you both of you more so we can help each other. dbl0311@sbcglobal.net