Topic: Introduction: 41-yr-old Stage IV Extrahepatic CC

Hi Everyone, My husband (41 years old) was diagnosed in January with metastatic extrahepatic CC (what a moutful!). He is midway through his first round of cisplatin/gemzar and will be switching to carboplatin/gemzar next round in hopes of reducing nausea. Except for pain in his gallbladder, which started after his metal stent was placed, he's in pretty good health. I haven't seen many people posting on here at this age with extrahepatic stage 4, so hoping my post will bring you out of the woodwork. It would be nice to have a community to talk to. We are reading a couple of books: "Healing Words" and "The Anatomy of Hope." We've been told contradictory things about his future which range from "get your affairs in order" to "with chemo the tumor in your bile duct could one day be resected." We have consulted with other oncologists by email, some in person, and even switched oncologists, and they all have recommended the same initial treatment. I'm wondering how they'll know if the chemo is successful since you can't see the tumor on the CT scan? Do they have to remove his stent to do a spyglass of his bile duct again? Or, for this stage, do they just assume that if you're still alive it must be working? Thanks everyone. I appreciate the opportunity to have this community available.

2 (edited by PCL1029 Mon, 05 Mar 2012 08:48:50)

Re: Introduction: 41-yr-old Stage IV Extrahepatic CC

Hi,
Extrahepatic CC METASTASED to where if I may ask.BTW, I have intrahepatic CC for 34 months ,it is quite a long journey.
I know Gavin'dad and Lainy's husband and many others on the board had extrahepatic stage 3-4. Mainly stents changing and bile flow and ascites are the main problems. IBRT ,PDT or cyberknife are radiation  treatment options besides systemic chemotherapy.
If the tumor inside or around the bile duct is growing it will show as a stricture in the bile  duct and it will show on the scans or MRCP. Changing the stents every other month to improve the bile flow is a common practice to keep the bile from backing up in the digestive system.
Palliative chemotherapy or adjuvant chemo treatment is no guaranteed for cure or prolonging the life of most CCA patients but as you may notice from this web site,there are CCA patients who live beyond 5 or even the 10 or 15 years mark.
Keep in touch,
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: 41-yr-old Stage IV Extrahepatic CC

Hello Sweetgreen and welcome to our extraordinary family but sorry you had to find us. I think you are told contradictory things because unfortunately the attack game for CC is still in the hunt and peck stages. What works for one may not work for another, what works the first time may not work the second time. The best attack is to get other opinions (which you have)  and to research as much as you can, knowledge is the best tool for fighting CC. Hope and attitude are so important and they really do play a positive part in treatment. It sounds like you are doing all the right things and will just have to hang in and be strong for now. Please 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: 41-yr-old Stage IV Extrahepatic CC

Hi Sweetgreen,

I just wanted to welcome you to the site and let you know that you are not alone. Someone is always ready and willing to give you an answer to any question and everybody is here to offer support. I hope to hear from you in the future and I just wanted to wish you and your husband much luck in the future. God bless.

-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: 41-yr-old Stage IV Extrahepatic CC

Thank you all for your kind remarks and support. It's such a gift to have a resource like this! I guess I forgot to mention that during his lap. surgery to stage him, they discovered mets in his abdomen. The pathology reports said it was in his lymph nodes, too, I think. His liver and pancreas are all fine, and his tumor is in his distal bile duct (the lower end).

Re: Introduction: 41-yr-old Stage IV Extrahepatic CC

Hi,
Gemzar+ carboplatin ,yes will have the least side effects among the three platium drugs(cisplatin,oxaliplatin carboplatin).

Since the cancer is in the distal bile duct, radiation consult for 2nd opinion is a good idea to explore the opportunity of  cyberknife,PDT,IBRT or even SBRT.
Good luck and
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: 41-yr-old Stage IV Extrahepatic CC

Hello Sweetgreen. My husbands CC was in much the same place as your husband's. Teddy's was contained in the bile duct valve where the pancreas connects to the ducts. He had a successful Whipple with clean margins and 4 ONC/RADmen all said no to chemo or radiation. After 3 years the CC returned where the duodenum used to be and they zapped it with Cyber Knife (miracle lazer, I call it). I wholeheartedly agree that a 2nd opinion is in order before starting treatment. Would the palliative chemo worked after surgery? We will never know as we ususally don't but I can look back and regret nothing we did. Trust your gut, it works for you! Please keep us posted.

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: 41-yr-old Stage IV Extrahepatic CC

Radiation, cyberknife and surgery even if he has mets in his abdomen?

9 (edited by marions Tue, 06 Mar 2012 15:32:24)

Re: Introduction: 41-yr-old Stage IV Extrahepatic CC

Sweetgreen...I doubt for surgery to be advised.  The nausea, does it increase after chemo treatments or, is it steady throughout?  I would also make an appointment with a radiation oncologist.  Hopefully it would be someone more than familiar with this disease. 
And, make sure that the experts communicate with each other.
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: 41-yr-old Stage IV Extrahepatic CC

Hi SweetGreen-

You will find a wealth of experience on this website- post often and never hesitate to ask questions.

All my very best to you both,
Chrissy

Re: Introduction: 41-yr-old Stage IV Extrahepatic CC

Hi Sweetgreen,

Welcome to the site.  Sorry to hear about your husband.  I think you'll find that there are alot of us on the sight that are "younger".  My husband was 47 when first diagnoned in October of 2010.   He is stage 4 intrahaptic with mets to the bones.  Not eligible for surgery.  He was on several different chemos but has recently decided he wants quality of life over quantity.  He stopped chemo in January.   

We are doing our best to enjoy each other and our life.

Good luck.

Peony

Re: Introduction: 41-yr-old Stage IV Extrahepatic CC

sweetgreen, for Cyber Knife to be performed the mass just be under 7cm. I am not sure though how much Metasis they will accept. You will have to ask the ONC. Teddy only had the one mass when they did the cyber knife.

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: 41-yr-old Stage IV Extrahepatic CC

Hi Sweetgreen. I'm 40 (for another month and a half anyway) and had CC in the bile duct where it branches just inside the liver, no mets, and had a resection with reconstruction of the bile duct with my small intestine. I'm undergoing adjuvant chemo now with Gem/Cis for about 3 more months and will probably do radiation/chemo after that. I had clean margins and clean pathology so I'm lucky in that regard. I wasn't officially diagnosed until after the surgery and the pathology came back so I didn't find this site until I came home after surgery. Officially it was considered Stage II also. Hopefully the chemo he is undergoing will kill off what is there and get him to a point where he is eligible for a resection. Wishing you the best...

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Introduction: 41-yr-old Stage IV Extrahepatic CC

Hi Marion, the nausea only came after the cisplatin. After the gemzar, he wasn't nauseous at all. I will look into a radiation oncologist. That hasn't been recommended to us at all. --Bridget

marions wrote:

Sweetgreen...I doubt for surgery to be advised.  The nausea, does it increase after chemo treatments or, is it steady throughout?  I would also make an appointment with a radiation oncologist.  Hopefully it would be someone more than familiar with this disease. 
And, make sure that the experts communicate with each other.
Hugs,
Marion

Re: Introduction: 41-yr-old Stage IV Extrahepatic CC

Liz and Peony, it sounds like we are on similar journeys. We also have young children, and life just isn't normal anymore--although my husband does put on a GREAT act on days when he's feeling perky and at dinner time with the kids. I wish he had gone to the doctor the moment he had started feeling pain, rather than waiting a month. Maybe we could have caught it in time such that surgery would have been an option.

Thank you everyone for all your support and encouragement.
Bridget

16 (edited by marions Sun, 25 Mar 2012 20:49:05)

Re: Introduction: 41-yr-old Stage IV Extrahepatic CC

Sweetgreen...with this disease, chemo-related nausea is good news. Fingers are crossed.  Your husband may just respond more favorably to the next proposed chem combination.     
Please, keep us posted.
Good luck
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: 41-yr-old Stage IV Extrahepatic CC

I just posted in the whats working section, and i am happy to report that the first round of chemo appears to be working! My husband has been up and about acting completelynnormal. Well, sleeps later than when he was working but is fine the rest of the day. No pain, eating normal, doing yard work. We are enjoying this fantastic time. What a turnaround.

Re: Introduction: 41-yr-old Stage IV Extrahepatic CC

That is great news, I am wishing for everything to continue along this much better path! We salute turn arounds!

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.

19 (edited by PCL1029 Sun, 25 Mar 2012 10:25:04)

Re: Introduction: 41-yr-old Stage IV Extrahepatic CC

Hi,
With the mets to the abdomen which you did not mentioned in the first message; systemic chemotherapy will be the best option.

Both the surgery and the radiation can be rule out at this point.

If you want to try other unconventional therapies;please go to the experience forum title." Complementary and Alternative treatment---CAM" to get some ideas before start going to that direction.

There are two different ways the Bile duct malignant neoplasms  can grow (especially for the one that grows in the hepatic ducts and the common bile duct).
They can grow OUT or grow IN and AROUND the bile ducts and therefore it is much easier to appear on the CT scan as a tumor-like structure (foci or center);however the bile duct neoplasm can also grow ALONG the bile duct on one or both sides of the bile duct and therefore it will appear as stricture (thickness or narrowing  along the side of the bile ducts compare to the healthy part of the bile ducts). That is why experienced GI specialist  and radiologist can make their diagnosis along with the CA19-9 and other lab results;CA19-9>129 is indicative of  cholangiocarcinoma in terms of relatively accuracy.
Of courseMRCP and tissue biopsy are the best tools to confirm the diagnosis too
BTW,i am just a patient and not a doctor .

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: 41-yr-old Stage IV Extrahepatic CC

Hi Sweetgreen,

This is great news, thanks for sharing it here with us all! Hoping that the good news continues for your husband and please let us know how he gets on with his further rounds of chemo.

Best wishes to you and your husband,

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.