1 (edited by ssachetti Thu, 25 Oct 2012 12:43:49)

Topic: Introduction

Hi all

My name is Shelby and my mom was diagnosed with stage 3 bile duct cancer in September.  She has been through hell the last six months trying to figure out what was causing her liver enzymes to be so high.  She has had numerous procedures to unblock her bile ducts.  She currently has 3 drains and they have removed the bags to see if the bile will drain on its own.  The cancer is intrahepatic and is in two lymphnodes in the liver.  She is not a candidate for surgery at this time.  Her oncologist will be checking her bilirubin levels on Monday and if they are low enough she will be able to start chemo next week.  She and my dad moved from Florida to Baltimore to live with me and so she could go to Johns Hopkins Hospital. 

I am so excited that I found all of you.  The support is what we need right now.  Also I am excited to read all of your stories and learn new information that may help my mom further in extending her life as much as possible.  She is a fighter and so far shows no signs of giving up. 

Thanks in advance for letting me share.

Re: Introduction

Hello, Shelby and welcome to our extraordinary famiily but sorry you had to find us. Sounds like the 2 of you are a great duo and how wonderful that she now lives with her exceptional daughter! I am sending out the best vibes and juju for her to be able to start her Chemo next week. You are right to keep on reading as knowledge is powerful in fighting CC. Looking forward to many more updates as we truly 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: Introduction

Hi Shelby,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what your mum is going through. But great that you have joined us all here as the support and help you will get here is superb. I know that you will have questions so ask away and we'll do what we can to help in answering them for you.

That is great to hear you say that your mum is such a fighter and also you are doing an excellent job in caring for and helping your mum here. I was my dads carer during his fight with CC so I know what you are going through. I will keep my fingers crossed for a fall in your mums bili levels and so hope that she will then be able to start her chemo. Please let us know how things go for your mum and know that we are all here for you.

My best wishes to you and your mum,

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: Introduction

Shelby.... I would like to echo Lainy and Gavin and welcome you to our site.  Your Mom and Dad made a wise decision by staying with you, as you are close to a major cancer center treating a high volume of cholangiocarcinoma patients.  But of equal importance is the fact that you are together during this stressful time.  Fingers are crossed for a successful first day of treatment.
Hugs,
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: Introduction

Hi Shelby,

I am sorry to hear about your Mom, but you have come to the right place. I hope your Mom's bilirubin comes down enough for chemo. I think it is great that your parents are living with you so your Mom can get great care. They must be so relieved that they have a place of comfort to stay at while going through this difficult time. You are a special daughter. We are all here to help. Please come back and let us know how things are going.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Introduction

Thanks for all of the warm welcomes. My moms bili numbers came down today and she officially starts chemo tomorrow. She is very scared but ready to start fighting. I have bag packed with books, ipad with movies, good snacks. Any other suggestions?  We were told it would be a long day. Just trying to be prepared.

Re: Introduction

I think you covered it all. I LOVE Scrabble and have a small portable game of Scrabble I take on trips. A deck of cards would be good. Best of luck for Mom tomorrow.

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: Introduction

Thank you Lainy. smile

Re: Introduction

Hi Shelby,

I think you have things covered on what to take for your Mom at chemo. We had five people go to my daughter, Lauren's first chemo. She has had 26 treatments. Only one person can go back at a time with the patient where we go. At one point the first time, we were all sitting and crying at the same time. It was kind of emotional on the first one because we were scared and because there were so many people there to have chemo that it broke our hearts. It gets easier each time as you become familiar with what is going on, especially if chemo makes your Mom feel better. I wish you all the best. Please let us know how it goes.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Introduction

Hi Shelby,

Thanks for letting us know about your mum. Thats great that her bili numbers have come down and that she is starting her chemo. My fingers are crossed that it goes well for your mum and also for the best possible results too. It sounds like you have everything ready there for your mum and please let us know how it goes for her.

Best wishes to you and your mum,

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: Introduction

Welcome to the club! This is a wonderful place. Sorry you had to find us but I. too, go to Hopkins for chemo and they are SO wonderful there. They will make you feel right at home and loved. There is a lot going on in a chemo room - - interesting people, things to look at, converations to overhear, friends to make (really!) just tke it easy and take it all in. The nursese are never in a hurry so ask all your questions.  I pray you have a good first experience there!

Holly22a