Topic: Running out of options

My mom is 65 yo and in November 2005, she was diagnosed with Cholangiocarcinoma.  It took a while to determine exactly what she had, however Memorial Sloan Kettering in NY re-evaluated the results of her biopsy (originally prepared by our local hospital) and made the diagnosis.  Her only symptoms were excessive sweating, which she had been experiencing for a few months and attributed to the warm summer weather.  This ultimately was the result of tumor fevers.

The disease was advanced (multiple lesions throughout the liver) and was therefore non-resectable.  Her encologist put her on Gemcitabine (Gemzar) for 8-weeks (4 on- 1 off and 4 on).  After the first week or two of treatment, she had began to have signs of yellowing both in the whites of her eyes as well as her face.  In the latter half of the treatment, other than fatigue and shortness of breath, the tumor fever had subsided and with the exception of her bilirubin count, which was 1.6 at the time, her enzymes levels had come down to near normal and she had regained some strength.  To sit across the table from her you would not even know she was sick.

Long story short, after retesting, it was determined that in fact several lesions grew, indicating that the treatment was not working.  She was next deemed eligible for a trial for the drug Nexavar.  Although recently approved for kidney cancer, it is beieved that it may also be a good form of treatmnent for Cholangiocarcinoma. We had to wait 4-weeks to start treatment.  I assume that is the time it takes for the previous drugs to clear your system.  By the way, the drug kills the cancer by cutting off the blood supply to the tumors.  After 1-week of treatment at the highest dose possible, they had to discontinue tratment as her bilirubin count had jumped up from 1.8 to 2.8.  They told her to drink a lot of fluids over the course of the next week, which she did.  After being re-tested yesterday, her count had increased again to 3.0.  She was dropped from the trial.

My mom has started Xeloda today, 4 pills twice a day.  She was told that there is a 10% chance that it will have a positive effect.  After that, assuming the worst, we were told we are out of options.  Any recommendations as to any other course of action that may yield positive results?  My brother and I have done everything we can think of and feel so helpless at this point. 


Re: Running out of options

Dear dsdan-

I would check out the blogs and the other posts on this website.  Patricia in England has a husband who is doing photodynamic therapy.  The blogs have info on various chemo treatments which I haven't had time to catch up on completely.   Another person is having a liver transplant at Mayo Clinic.  Also, you may want to consider a second opinion at one of the more specialized hospitals such as M.D. Anderson, Mayo Clinic, or Sloans-Kettering.

Please keep us posted,

Re: Running out of options

Hi Caroline and thanks for the response to my post.  We are currently being treated at Memorial Sloan Kettering, however I do intend on checking out the other institutions you mentioned.  Who knows what new therapies are out there.  I started reading the blogs on the Photodynamic therapy.  It will give me something else to ask the doctors about.  Also will look into whether it is being offered in the U.S. at all.


Re: Running out of options


Also wanted to reply regarding the liver translant at the Mayo Clinic.  I will investigate that as an option, however our doctors at Sloan as well as MOunt Sinai, advised us that she is not a candidate due to the disease.  They referred to it as the Mickey Mantle syndrome.  You may recall that due to his celebrity statis, he was put at the top of the list for a liver transplant.  Within months of the procedure, the cancer was int he new kiver as well as in other organs.  As such I am extremely suprised to hear that someone with CC received a transplant.  I would be very interested in knowing the details in that situation.

Thanks again...

5 (edited by ukmember Sun, 02 Apr 2006 14:52:16)

Re: Running out of options

it's Patricia. My husband has declined chemotherapy. he has had PDT three weeks ago. PDT is not a cure. It works to shrink the tumour in the bile duct so that the stent drains the liver more effectively, it doesn't tackle metastases. Your mother's high bilirubin suggests that the bile duct is not draining bile from the liver. Does she have a stent?
Has she tried alternative treatments like IP6 and AHCC coenzyme 10 and antioxidants? If orthodox treatments are not effcetive and they seem to have little effect as far as I can see, then perhaps she should try alternative approaches.
I hope you find some hope and I wish you and your mother every best wish.

Re: Running out of options

From reading posts on the Cancer Compass board I am aware of at lease two Hospitals doing liver transplants as a treatment for Cholangiocarcinoma; The Mayo Clinic and University of Chicago Hospital. There seems to be some success stories from transplantation. The regimen includes pre-op Chemotherapy and radiation. At Rush University Hospital where my wife Dawn had her resection, a liver transplant was not offered as an option.

Here is one of the articles:


Radiation, Chemotherapy with Liver Transplant Improves Cancer Survival

ROCHESTER, MN -- September 14, 2005 -- A new treatment for patients with a type of bile duct cancer promises a greater chance at survival by combining radiation, chemotherapy and liver transplantation, Mayo Clinic physicians report in the September issue of the Annals of Surgery.
The 5-year survival rate for patients who received a liver transplant after radiation and chemotherapy was 82%, significantly higher than for those who had a conventional operation.
"With the combined benefits of radiation, chemotherapy and liver transplantation, our patients with bile duct cancer now have a much better chance to live longer and enjoy a good quality of life," says Charles Rosen, MD, a Mayo Clinic transplant surgeon and co-author of the study.
Conventional therapy for hilar cholangiocarcinoma, a type of bile duct cancer, is to remove (resect) the tumor, which may require removing part of the liver. Survival for patients with this type of operation is only 25% to 35%, and many patients cannot be treated this way because the tumors can involve both sides of the liver. Combination therapy with liver transplantation is possible for more patients. Transplantation enables surgeons to remove the entire liver and obtain better tumor clearance. Patients treated with transplantation have enjoyed a higher likelihood of prolonged survival than those treated with the conventional operation.
To improve results of liver transplantation for unresectable hilar cholangiocarcinoma, Mayo Clinic physicians developed a treatment protocol combining radiation therapy, chemotherapy and liver transplantation.
Patients receive high dose external beam radiation therapy, followed by high dose irradiation with iridium administered through a catheter passing through the bile duct and tumor. Chemotherapy starts during radiation treatment and continues until transplantation. Prior to transplantation, patients undergo a staging abdominal operation so surgeons can look for any spread of the tumor to lymph nodes or the abdomen that would prevent complete tumor removal.
Mayo Clinic's liver transplant team has treated over 90 patients with hilar cholangiocarcinoma. Approximately one-third of the patients have findings at the staging operation that preclude subsequent transplantation, but this number may be decreasing with earlier diagnosis and referral for treatment. Sixty patients have undergone liver transplantation -- many recently with living donors -- and results remain superb, says Dr. Rosen.
Cholangiocarcinoma is a relatively uncommon malignant tumor that is often found in the lining of the bile duct. In the United States, the most common risk factor is sclerosing cholangitis, a chronic liver disease characterized by inflammation, destruction and fibrosis of the bile ducts, often leading to cirrhosis of the liver. The cancer also is seen in patients with congenital bile duct cysts and bile duct stones. Most frequently, these tumors are located near the liver. Cholangiocarcinomas in this location are difficult to treat because the tumor often extends deep into the liver in a way that it cannot be completely removed with a conventional operation.
The incidence of bile duct cancer is increasing in the United States, according to Gregory Gores, MD, Mayo Clinic liver transplant specialist and co-author of the study. Mayo Clinic has ongoing research into new tests to diagnose the tumor earlier, which could lead to even better results.
"The major problem is that we still don't have enough livers for everyone who needs one," says Dr. Rosen. "We feel that patients with cholangiocarcinoma should have equal access to donor organs, because the results are comparable to those achieved for other patients who undergo transplantation. Without a transplant, the outlook for these patients is fairly poor."
Other Mayo Clinic physician researchers involved with this study include: David Rea, MD, Julie Heimbach, MD, Michael Haddock, MD, Steven Alberts, MD, Walter Kremers, PhD, and David Nagorney, MD.
SOURCE: Mayo Clinic

Re: Running out of options


Thanks for your response.  I e-mailed the main physician from the article you provided and intend on following up tomorrow with a call to the May Clinic in Rochester.  My intent is to see if my mom would be a candidate for a transplant, or any other clinical trial that the center may be running.  A co-worker has a brother in-law that works at the Rochester location and he said he too would reach out to the physician tomorrow.

Obviously there are a lot of questions that need to be answered to determine if she would be a candidate, including the advancement of her disease, but it provides us with an additional possibility and "hope".  I need to do some research on  PDT therapy as well as other trials available.

I will keep everyone in the loop.