Topic: New Member- hoping for some hope, support and advice.

Thank you for this wonderful site. I have spent hours on this site reading and researching all I can since Mom was diagnosed with CC last spring. It’s been a very scary roller coaster (and I stress roller coaster) since she’s been diagnosed. I thank anyone who reads all this but I would like to share my story in hopes that anyone has advice.

My mother started getting uncontrollable blood clots sometime last year which lead us to finding the cancer (since we are told cancer can sometimes cause the blood to thicken). Once confirming it was Cholangiocarcinoma we were referred to an oncologist in April of 2012. They said a few spots lit up which meant it probably spread, stage IV.

Then came Chemo, Cisplatin and Gemzar on Mondays and hydration on Tuesday pretty much since then. After biopsies of the other parts that lid up on a PET came out negative and/or inconclusive and we were told it probably didn’t spread. After one round of chemo the tumor shrunk 60% and chest didn’t light up anymore but two lymph nodes lit up after another round it went from the size of a baseball to a cm and only the main mass lit up.

About a month ago, we were then told operation was possible. I was ecstatic but scared with the clotting something could go wrong but thought, out of only 10% of those with CC can get a chance to remove the cancer completely so we are blessed. I was terrified though thinking, what if she didn’t make it after removing so much of her organs? The surgery sounds so scary but she was determined for a cure.

Two hours into the surgery we got a call that they were wrong, the CC spread to her diaphragm and very thin tumors (one being a cm wide) didn’t come up on the scans but when they opened her up they found them, biopsied them, and confirmed they were malignant. They closed her up and explained if it spread surgery is no longer an option. The surgeon told us now we are talking about Stage IV for sure and all that can be done is chemo for the rest of her life and try to extend it as long as possible. She says my mother is responding so well to chemo she believes that’s the best approach but I recall the oncologist telling us she may eventually stop responding to chemo.

I hear stories of people stage IV that are somehow cured and want to know if I have any hope of her being cancer free at this point or if it’s only a hope of extending her life as long as we can. That’s a depressing and scary concept so I guess I’m here hoping someone experienced something similar and is doing well. I’m taking her to Sloan Kettering next week and hoping there is something they can do to help prolong her life. The tumor is now so small I can’t face thinking it will just grow again. We visited Sloan initially and they thought surgery was probably never an option but recommended the same chemo as the local cancer center recommended which is why we didn’t stay at Sloan since the local place was more convenient for her. I’m wishing we stay at Sloan looking back.  I feel the local oncologist cut her open for nothing. I know the “air spreads cancer” myth is false but with blood clots it was an unnecessary risk. Sorry I continued on so much. Thanks to whoever can share anything you can. I refuse to give up and won’t let Mom give up. Any advice is appreciated.

Re: New Member- hoping for some hope, support and advice.

Amy-I am sorry about your mom's surgery. I am one of the few who was fortunate enough to have a transplant. Please don't fret over leaving Sloan-Kettering. Your mom's same ordeal has been posted on here recently by some others who got to the surgery only to find tumors/lympnode involvement that didn't show on scans, it is pretty common. My doctor was so adimant about getting me to the table and when l woke up I might not have a new liver! I found out later that is what happen to the patient before me. Great scans a few weeks before but totally different when openned up when she had surgery.
There is HOPE!! Keep being a great daughter and finding the best care and information, you are the one's who get us through this. I am always embarrassed when people tell me how strong and brave I am/was, but all I did was be sick, it was my family and friends who did all the love, care and patience to get me here to prove there is HOPE.
Lots of prayers and HOPE-Cathy

Re: New Member- hoping for some hope, support and advice.

Hi,
Your surgeon was right not to operate further when metastasis discovered in other organs. Blood clots can occur in any situations not just during surgery.
Since your mom response to gem/ cis chemotherapy so well, and was agreed with both 1st aNd 2nd opinion, continuing chemotherapy will be the logical choice since surgery is the only possible cure. CAT scan may not have the ability to detect tumors small than 1 cm in size and PET scan is not 100% reliable either.
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: New Member- hoping for some hope, support and advice.

Amy welcome to the most elite club in the World that no one wishes to join. Sorry to read about your Mom and am pleased you are returning to Sloan K. Please don't look back at would have could haves as we just don't know with this strange and rare CC. And YES we do have some Miracles on our Board so never give up HOPE. I will be looking forward to your next report after your visit to SK. Sending you a ton of best wishes and good luck. 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: New Member- hoping for some hope, support and advice.

Hi Amy,

Welcome to this site but so sorry you had to find us. I'm sorry your Mom had to go through surgery without the results she had hoped for. I am very happy you will be going to Sloan Kettering. At least you will know you are getting great care with doctors that know a lot about CC. My daughter has CC and has gone through many chemos plus radioembolization. We never give up hope that one day surgery may be possible. I hope to hear from you again and please let us know how things go for your Mom. Take care.

Hugs,
-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: New Member- hoping for some hope, support and advice.

Thank you all for your kind words and encouragement. I look forward to reporting better news next time I post. We refuse to give up. I shared your kind words to Mom and she smiled a bright smile. That was great to see. She still has a fight in her and we aren't giving up.

@Jathy- Being on the opposite side of the spectrum I can see how much strength it takes to not give up and continue to fight. You are an inspiration.

@Pamela, Lainy, PCL1029 thank you for your words of inspiration. Next stop, Sloan :-)