Topic: Introduction

Hello, my name is Darla and I was just recently diagnosed with cholangiocarcinoma stage 4.  I am currently undergoing chemotherapy treatments two weeks out of the month.  My tumor is right inside my liver and it is 9.5 cm. in size.  I found this website when I was researching the cancer, and am very excited to be part of the discussion boards. 

I was referred to the Barnes Noble Jewish Hospital out of St. Louis Missouri. and found out that they have a 80%- 90% success rate for liver transplant.  I know that is the only true word for cure for my cancer. 

I look very forward to discussing with everyone on this website.  If anyone has any advice for me it would be greatly appreciated, because I am a newbie and very uncertain as to what to expect with this cancer.
Thank you so much for your time.

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Introduction

Dear Darla, welcome to our remarkable family but sorry you had to join us. It sounds like you have things well under control and a good attitude to push it along. Barnes Jewish Hospital in STL is one of the best and I know that our Cathy will be along to second that motion! May we ask how old you are and we are a curious bunch here so would like to know what chemo you are on. You never know when what you are doing will helpo someone else. You are no longer a newbie, now you are family and have come to the right place for advise, caring and a whole lot of love. Looking forward to hearing more about you and please do keep us updated 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

Darla...a big, warm, welcome to our site; I am glad that you have found us. 
Darla, liver transplantations for this disease are performed at numerous centers throughout the U.S. and several of our members have undergone this procedure with success. 
This particular link may be of interest to you:
http://www.scivee.tv/node/52505

and this:
http://www.cholangiocarcinoma.org/punbb … 480#p65480

and this:
http://www.cholangiocarcinoma.org/punbb … 642#p64642

Also, I am quite sure that our Cathy will be around real soon and share her remarkeable story with you. 

Again, I am thrilled that you have found us. 

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

Darla, Welcome and sorry you had to find us, I am Cathy (LOL)!! I am a CC survivor, 3 years and 4 months cancer free, thanks to God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I have an amazing story to share, please read it at www.catherinedunnagan.com under the telegraph link. There is HOPE!!
I have posted on here so many times about how different my story would be if I wasn't immediately put in Dr. Chapman's care. I can never say enough about his doctor skills, but it is his heart that puts him in that special place. Darla, you are so blessed and lucky to have been sent to Barnes and Dr. Chapman.
I would love to talk to, you so please call (618-567-3247) or email jrdunnagan@gmail.com. I had so many miracles happen in my story, and one of the first was Barnes was only 25 mins away!!! I would love to meet if you come to town, and if you need any help navigating Barnes or St. Louis please call!!
Lots of prayers and HOPE!!!!-Cathy

Re: Introduction

Thank you so much for the beautiful notes of encouragement.  I feel very thankful that I have found all of you and I am happy to share the complete story with you.

I am 48 years old and I was just diagnosed with cc.  The chemotherapy that I am taking right  now is in a series of 3 weeks. Week one-cysplatin with gemzar ( 6 hours) and week two- gemzar ( one hour). Week three- rest week and then start over again.  The first week is very rough. They give you the miracle nausea drug by iv called emend when they give the infusion, and the steroid dexamethasone to spread it out over the next three days.  Unfortunatley, cysplatin is very similar to adriamyacin which caused me to get very sick. ( I am a three year Breast Cancer Survivor and this is my second cancer in a lifetime..:( )  My Oncologist prescribed Emend to be taken by pill form for the next two days after treatment and that has made the first week of the series bareable.

Cathy, the only reason that I know of the Barnes Jewish hospital in St. Louis is because of a very good friend of mine who introduced me to your story and the success rate at the hospital.  At this moment we have only faxed about 50 pages of medical history to the Hospital and am waiting to hear back from them on whether or not I qualify for a Liver Transplant.

Can you tell me what criteria I need to meet to qualify for the liver transplant list?  My tumor is right inside my liver where my gall bladder attatches to my liver. My Oncologist told me that the cancer is inoperable.  I also have three small lesions in my liver besides the big tumor.  I was told that the only cure for me is liver transplant.  After reading many posts plus the wonderful pages that were recomended I see there are many different types of treatments to explore.

Please pray for me as I am going to get a cat scan with contrast dye on Thursday 10/11/12 to see if the chemotherapy is working properly or not.  I am praying for at least a stunt in the growth if not some shrinkage at this point.

Thank you all again for your time and for your compassion!! I am so happy that I have met you all!! 

God Bless,

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Introduction

Hi, Darla and thanks for the informative update. I am crossing everything I have for good news from your Scan on Thursday. We love the words, Shrinkage, Stable and Options! And we are happy to have met you as well. You sound like a very courageous, lovely lady with a good attitude!  Looking forward to hearing the results. Hang in and be strong!

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,
I will pray for you for good response to the chemotherapy treatment.
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

Darla...tomorrow is the day.  Fingers are crossed for the scan.  Did you know that Lainy crosses her eyes also?
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

Ha HA Marion, I cross my eyes but not by choice!!!  lol  Sorry I couldn't help myself.
Maybe the crossed eyes along with the chipmunk cheeks is a good reason to go off the dating sites! Unless another cross eyed chipmunk comes on~!

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

Darla, i am Thinking of you as you await results if scan. My sis is in a very similar situation but still undergoing first rounds if chemo. Will pray for you to have tumor shrinkage and the ability for you to qualify for surgery.

Willow

Re: Introduction

Darla,

I hope you get good scan results. I know this can be such a nervewracking time. Also, I would like to welcome you to this site. I hope to talk with you more in the future. All the best.

-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 Darla,

Another Darla here.  Hope you get the results soon and they are good.  My nephew lives in St. Louis and speaks very highly of Barnes.  Look forward to hearing the results.

Thinking of you and hoping for the best for you.

Take csre.

Love & Hugs,
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: Introduction

Dear Lainy,Marion,Cathy,moderators,Wilow,Pam and Darla,

Your notes of encouragement and love have meant so much to me since joining the website and I am here to thank each and everyone of you for your thoughts and prayers.
I got some pretty remarkable great news yesterday at my oncology appt.  All my tumors have shrunk. The largest 1/2cm but some of the smaller tumors shrunk 1/2 their size and some shrunk a full 8/10 of a cm  There is  no lmypnode involment so the cancer has not metasicize.  Praise be to God the Almighty for the beginning of my miracle taking place after only two chemo series.  The Dr. was very surprised too - she was hoping for sabilization and no growth, and it has stabilized and shrunk too.

We are going to continue with the cysplatin and gemzar chemo's until I go  to UoM Ann Arbor to see a surgeon and oncollogy staff who would bring my case in front of the tumor board.  I am ecited and can't wait to hit the next land mark.  It make suffering through this chemo worth it knowing that it is all just part of the miracle unfolding!!!! God is sooo Good


God Bless you all,
Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Introduction

Hello Darla, and a big YIPPEE, HURRAH and way to go, girl! We love the words no growth and shrunk but put them together and we have a Miracle! I am over the moon. Do you have an appointment yet for U of M? WOW! Enjoy, enjoy!

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

Lainy,

I don't have an appointment yet for U of M but my onlcogist is setting it up for me.  I am hoping soon, since my father only lives 45 min from Ann Arbor, and I would just stay with him.

I will keep you posted and let you know as soon as I find out!!! I hope you are having a fantastic weekend!!!!

Love,

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Introduction

Darla, yes, please do let us know. How nice that you can stay with your father, no doubt that makes him happy too. This is a great weekend as I am getting a visit from my son who is flying in from Milwaukee today. You have a great weekend too.
Don't know if it is cold yet for you, but out here in Phoenix it will be 90. Lovely!

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 Darla,

I am happy to hear you are going to go to U of M for your care. My daughter, Lauren goes there for her care and is very pleased. Please let us know who you will be seeing and what days you will go. We go every 3 weeks and always on a Wed. Lauren's oncologist is Dr. Mark Zalupski and her surgeon is Dr. Chris Sonnenday. Maybe we will see you there sometime. We always love to meet others with CC because there aren't many to be found. Actually, I wish nobody could be found with CC and it didn't exist, but since it does, it would be nice to meet you. We are from Ohio but my oldest daughter and her husband live in Ypsilanti and work at U of M Hospital. So we have a place to stay when we are up there. I wish you all the best and if you have any questions about U of M feel free to ask. I would love to help. Oh, and congratulations on a great scan!!

-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 Darla,

This is great news about your shrinkage! Thanks so much for sharing it and I hope that the good news continues to roll for 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.