Thanks to all for your responses.  I just got a phone call from MD Anderson that she is not a candidate for proton therapy as she has reached her radiation limit.   I guess now it's just a matter of time at this point.

While I am here though I'd like to say how pleased I am with the doctors and nurses at Winship Cancer Center and Emory University Hospital.   The cancer was rather large when she was first diagnosed.  Yet she is managing to survive after 4 years.

My wife has non-resectable bile duct cancer and is not a candidate for a liver transplant.   She can no longer take radioembolization with Y-90 or chemotherapy.

I was thinking about checking with MD Anderson and Mayo in Jacksonville to see if they had any other therapies that she might tolerate.   

I know MD Anderson has a Proton therapy.  However I don't know if it works on Bile Duct Cancer.

Has anyone been to either of these hospitals and received anything other than chemo or radiation?

Julie,
As a fellow caregiver, I wanted to give you some advice.
1) Make sure she gets to a hospital who has treated this cancer before.   I strongly urge you to take her to a National Cancer Center.   I believe Mayo Clinic in Rochester MN has treated more cases than any other hospital in the world.   However consider how easy it is to get to the hospital.  We live 5 minutes from Winship/Emory.  They recommended the same treatments as Mayo, so we opted with Winship.
2) Don't let the survability statistics depress you.  These 2 and 5 year statistics are based on treatements that were in effect that long ago.   Many advances have been made since then.  More are being made every day.
3) Our personal experience with this disease has been unbelievably good.  My wife was diagnosed a year ago.  Since then she's been treated with radioembolization and Cisplatin/Gemzar chemo.  Today she has less cancer than she did when she started treatment.  She's been off chemo now for 8 weeks and today her doctor gave her a 3 month extension of her chemo-free vacation.   She's being treated by Dr. El-Rayes at Winship at Emory University Hospital.
4) NEVER give up hope. 
5) TAKE CARE OF YOURSELF!!!!  40% of all Caregivers die before the person they are taking care of.   (I've been told that by several reliable sources).  Bottom line is that if you aren't breathing, you are of no help to your mother.
6) Ask questions to your doctors, nurses, EVERYONE
7) NEVER be shy.  The only stupid questions are the ones you don't ask.

Can anyone clue me in on the effects chemo has on teeth, gums, etc.    We checked with our dentist who suggested a possible high flouride toothpaste.   However we've also been reading about cracked teeth, etc.

We've spent a couple of days at Mayo in Rochester MN.  They are saying that surgery is not an option at this time and want to start my wife on radioembolization with Theraspheres.

The Winship Center at Emory (Atlanta) hasn't seen the MRI, so they have not ruled out surgery.   However we are certain once they do, they will rule it out also.   Their "Plan B", is the same, radioembolization with Theraspheres.

Since Winship is a 5 minute drive from home as opposed to a 8 hour Plane/Car trip to Mayo/Rochester, considering the logistics of the two, the family and neighbor support at home vs hotel stays in Rochester and since we feel as confident in one hospital as the other, we're going with Winship.

Wish us luck!   We are now at the end of "Chapter 1" of this story.

http://www.upi.com/Science_News/2009/12 … 259773141/

I had one oncologist tell me that chemoembolism is not possible for my wife because her left portal vein is blocked due to the cancer.

Don't they send the tube down the hepatic artery to deliver the chemicals?

From what I remember from high school biology, blood flows to an organ via an artery and out an organ from a vein.

Sarah,

It's true! You meet the nicest people on this  board.  Thanks for the offer.  However we live in a very close-kinit neighborhood and we are fortunate to have more friends and neighbors than we possibly could use.    However I may call you in the next several days to discuss our situations.

Thanks so much for your kindness.

We met today with Dr El-Rayes, oncologist at WCI.    We feel much better about our options after talking to him.   We're definitely going with WCI over Dekalb Medical Center (Decatur GA).

The tumor board at WCI is going to meet on December 8th to discuss the next steps.   Although he's not an oncology surgeon, he believe the surgeon will determine that the tumor is not resectable at this time.   

However the options to shrink it are:
1) Chemo (Gemcitabine/Cisplatin)
2) Chemoembolism
3) Radioembollism

We feel better about the methods and procedures at WCI than we were at Dekalb Medical Center; although I am sure DMC is a fine medical facility.   However my wife and I feel that WCI offers more options.

We also have contacted M. D. Anderson Hospital in Houston, TX.    However because WCI is 5 miles from where we live and is also a National Cancer Center, and we had a good meeting with Dr El-Rayes, we're going to go with them in the interest of time.

10

(2 replies, posted in Chemotherapy)

My wife's oncologist wants to put her on the chemo therapy in the subject line starting immediately.      We're going to get a second opinion with an oncologist at Winship (Emory Hospital).

While side effects are important, I am more concerned about how effective this therapy was in shrinking the cancer.

Does anyone have any experiences with this therapy?

11

(4 replies, posted in General Discussion)

Kris,

It seems to me that assuming my wife's R0 resection is successful, that we'd get CT scans at least annually to make sure cc is not spreading again.    Is that normal?   This way it could be caught early so that one of these non-surgical procedures could be performed.   Is that normal procedure?

Does anyone know if medicare pays for a resection or these other therapies such as cybernice, RF abulation, PDT, etc?

My wife is about to start treatment.  We've discussed one option with an oncologist and a surgeon at Dekalb Medical Center.   The plan is chemo to shrink the cancer so that a complete resection (R0) can be done.    We're meeting with the oncologist and surgeon from Winship (Emory Hospital) next week.

Assuming the R0 resection is successful, what is the probability of the cancer recurring and what, if any, are the options if it does?

13

(4 replies, posted in Insurance)

Does medicare pay for a resection?  Is that considered "experimental" also?

Kris,

From what I was told, Doctor El-Rayes is the head of the Hematology and Medical Oncology department at Emory.    Collette (the one who does the scheduling) said that the way they work is that the doctors discuss the case and make recommendations for treatment.

All I can say is that I hope something happens quickly.   The fact that this is an aggressive cancer makes me want her to start treatment today.

All....

Being the squeaky wheel but polite while scared yet undestanding about other people's needs, worked.

We have an appt with a Dr. El-Rayes at Winship (Emory) on Monday.    So on Monday we have an MRI at 10:30A at Dekalb Medical Center, Dr El-Rayes at 12:30P and Dr Steiber (Dekalb Medical Center Surgeon - second opinion) at 3:30P.

Doctor Kauh at Emory is on vacation next week.

Monday will be busy.

16

(4 replies, posted in Insurance)

If medicare doesnt pay for the transplant, do they at least pay for the ongoing medications?

17

(4 replies, posted in Insurance)

Just out of curiousity...  what's the going rate for a kidney transplant?

Does medicare cover a resection???????

18

(4 replies, posted in Insurance)

Can someone tell me what medicare will cover with regards to chemo, radiation, and the surgery?

If it varies by state, we are residents of Georgia.

I "think" Part B will cover 80% of any surgical procedures.    I have no clue as to the other treatments.     

What is the "average" cost for a resection? 

Difficult questions to answer, I know.    I am just trying to get a general idea of the financial impact of my wife's condition.

She has Medicare Part A and B.

Sorry... I have one more question... wellm for now at least.

On Monday we're going to see this Dr. Steiber at Dekalb (Georgia) Medical Center.   What questions should I ask him?   I am thinking...
1) How many cases of cc have you dealt with in the past?
2) How long ago were they?
3) How many times did you decide a resection was not possible?
4) Of the resections you did , how many were successful?  How many were not?
5) What is your process?  Do you, the oncology radioliogist, and the oncologist as well as whomever else sit down together with us to discuss this case and determine the best course of action?

Can anyone else think of additional questions to ask during this "interview" with the surgeon?

About an hour after I sent en email to wci.referrals@emoryhealthcare.org stating that we've been waiting since Monday (now Thursday) to hear from them, I got a phone call from Angela at WCI.   

I ended up hand carrying all of my wife's records over to Winship (Emory).   So now she's "in the system".   We're supposed to hear by Tuesday or Wednesday when her appointment will be with the oncologist.

Marion....  no I guess I was trying to follow "standard" procedures as outlined by the website.    I will call/email today.    Thanks for the advice.

The doctors have run all the tests to determine if the cancer has spread beyond the liver.   All the tests have come back negative; a huge relief for us.   We can only view this as our first good news in a while.

We go see our first surgeon, a Dr. Steiber at Dekalb Medical Center in Decatur GA, on Monday afternoon after the MRI on Monday morning to start discussing surgery options at this point, if any.

I am still trying to get an appointment for her to see an oncologist at Winship (Emory Hospital).    I am getting a little impatient and frustrated that I made the request on Monday and here it is Wednesday evening and we havent heard anything.    Does anyone have any advice?   I don't want to be "too pushy" because I don't want to be put "on the bottom of the list" to be seen.

I've read good things about the doctors and care at Winship (Emory).   I know nothing about this Dr Steiber we're seeing on Monday afternoon, other than what I can find at this site...

http://www.vitals.com/doctor/profile/1235194101

Any opinions or advice on how to deal with Emory will be appreciated.   

Best wishes to us all.....

23

(0 replies, posted in Hospitals)

Has anyone had a resection done by a Dr Andrei C Stieber?   He used to be with Emory (Winship Cancer Institute) but is now with Dekalb Medical Center (Georgia).   

DMC is listing his specialties as "General Surgery".    However when I look at the surgeons qualifications at Winship, I see there are surgeons who specialize in Liver Cancer Surgery.    We have our first meeting with Doctor Stieber on Monday.

24

(8 replies, posted in Introductions!)

Also, I would like to know how "aggressive" this type of cancer is?   How long does it take before the entire liver is cancerous?

By the way, this cancer appears to be localized to her liver.   All other catscans have come back normal.

25

(8 replies, posted in Introductions!)

My wife was diagnosed with cholangiocarcinoma last Friday.  We are in the process of talking to oncologists at Dekalb Medical Center and at Emory Hospital to determine the next step.   

Here are some questions we have so far:
1) Assuming a resection is possible in her case, how long does it take to "recover" from the surgery.  (We're waiting on an MRI/MRA appointment).
2) Is resection really a "cure" since I've read it can reoccur after the liver regenerates <- That's amazing, and apparently it regenerates quickly
3) I am leaning towards the facility at Emory for her since it is a National Cancer Institute Designated Cancer Center.     Has anyone else had any experience with the doctors and surgeons at Emory?
4) If resection is a "cure" why do people have radiation/chemo done after surgery?
5) We were told that radiation was not an option because of the possible damage to the healthy part of the liver.   However I read that other people have had radiation treatments for this cancer.   What's the real story?