Topic: Introduction

Hi, our beloved brother was diagnosed with CC just a few weeks ago.  As a family we are working to support him but there is so little on this cancer.  His Dr referred me to this site, which I am grateful to have found.  He has the equivalent of a stage four cancer and it is considered inoperable as it is also in his lymph nodes and ribs.  Presently it is the pain in his ribs that is inhibiting his life style.   Their goal will be to balance quality of life with trying to kill the cancer. Right now they are looking at using two strong chemicals (gemcitabine and cisplatin), once a week for two weeks, then one week off. After three rounds of this – or nine weeks – they would check to see if the tumors have gotten any smaller.  He has completed the first two treatments and he is tested on this week to see how the treatment is working.  We really don’t know what to expect next, but we are hopeful this treatment provide some relief and hope.  It is helpful to hear all the good stories on this site.

Re: Introduction

Hello and welcome. I'm not here long myself but this site is just amazing for support, friendship and information.

I am so sorry that your brother is going through this. It's a cruel disease. It's wonderful that you and your family are there to support him

xxx

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." [Henri Nouwen]

Re: Introduction

Hi,
welcome to this small world that we have to meet in this way.
I am a CCA patient for 35months and counting;dull pain near the rib bones is not uncommon due to the tumor is pushing against the chest or in other case,due to the the seroma or biloma(bile in a capsulated form).
you are right in the direction of  considering balancing the "quality of life" vs the "quantity of life".
gemcitabine and cisplatin is the regimen that used the most to treat CCA;GEMOX is the other one that is less toxic to the kidney;either way it is tough for the body.
Cholangiocarcinoma(CCA) is a long and winding road,it requires courage, knowledge and patience to navigate .
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Introduction

Dear THennesy, welcome to our amazing family but sorry you had to find us. You sound like an amazing family yourselves. We love that a Doctor recommended our site, that means we are being noticed! Actually it is kind of bittersweet. Is your brother taking anything for pain? Where is he being treated. You are so right in that there is not much out about CC, all we know for sure is that we know not much. We do know that knowledge and attitude are powerful weapons and we do know we have some Miracles right here among our family. Please keep us informed on how he is doing 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

THennesey....I also would like to extend a warm welcome to you.  My fingers are crossed for a positive response to the upcoming treatment.  I  am wondering about the pain your brother's ribs?  Has it been diagnosed as metastases?
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

Dear THennesy,

I would like to welcome you to this site. Some will say chemo does not work. I can tell you that it has worked for my daughter. She has been on Gem/Cis and 5FU since Sept. 2011. Her tumors have shrunk and her large tumor is 50% necrotic (dead). She is now getting ready to have a radioembolization procedure. Everyone thought my daughter's prognosis was very grim at the beginning. We have never given up hope and never will. She feels better now than she did before the chemo. So, go into this with a positive outlook. It makes all the difference. God bless you.

-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

Dear THennesy-I also welcome you and also sorryyou had to find us. I am a CC survivor, there is HOPE. My CC was inoperable but had not spread, so I qualified for a trial involving chemo, radiation and a transplant. please read my story on my FB page (Catherine Sims Dunnagan), there is alos another CC survivor story on it. There is HOPE.
Lots of prayers-Cathy

Re: Introduction

Hi There,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear about your brother too. But glad that you've joined us all here as I know that you will get tons of support and help from us all. And that is also good to hear that your brothers doctor pointed you in our direction too.

The Gem/Cis chemo combo that your brother is on is a well used combination for this type of cancer. And we have many members or their loved ones on it and there are a ton of posts on it on various boards throughout the site should you want to read more about it. The search function will throw up these discussions. Is your brother taking any pain meds for his ribs right now and what do his doctors say about that?

We are all here for you and know what you are going through right now. If we can help in any way at all then please just ask and we'll do what we can to help you.

Best wishes,

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

Thank you for the warm welcome.  My brother is in his 4th week of treatments and so far is able to tolerate the treatments.  He was diagnosised at Georgetown.

My oldest sister who lives near him has been incredible, and with him during every turn!  I live a few hours away but I am trying to get down to see him every weekend.   

It is sometimes a bit overwhelming, but our brother is extremely strong.  I pray his progress is good!

My prayers to all others affected by this terrible disease.   Cancer just sucks!

Re: Introduction

Hi THennesy,

Welcome to this site and I hope your brother continues to tolerate his chemo.  We went to Georgetown in October to see if my husband would qualify for a clinical trial.  We met with Dr. Jimmy Hwang.  We liked him very much and he was honest with my husband and said there were no trials that he could be considered for at that time because the chemo he was on had damaged his kidney function.  My husband was diagnosed almost four years ago with Stage IV ICC.   He has fought very hard and has kept a positive attitude most of the time.  I truly believe that attitude plays a big part in fighting this cancer.  Tell your brother to stay strong and fight with everything he's got and to never give up hope.  One day this cancer will be defeated; hopefully, sooner than later.  Hang in there and continue to support your sister and brother.  I will say a prayer for each of you,  PeggyP

Re: Introduction

Absolutely more hugs and prayers coming your way from out west. Positive thinking and living gives our bodies incredible power to fight things.
Give my best to your brother. He needs to know that there are legions of folks who know about him and are pulling for him.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."