Bile Duct Cancer, any good news out there?

Your story sounds very similar to what we've recently been going through with my 59 yr old mother. Her only brother passed away 9 years ago from pancreatic cancer, so our immediate response when she woke up one morning last December jaundiced with a bloated feeling in her abdomen was to assume the worst. Initial CT scan showed a clear pancreas but sludge in her gallbladder and her bile duct was strictured. First ERCP showed no evidence of any tumor and they inserted a stent to open up her bile duct. The stents kept moving and after 2 more ERCPs, an ultrasound, an endoscopic ultrasound and the removal of her gall bladder, the doctors still found no evidence of cancer and blamed the stricture on gall stones. It wasn't until they opened up her gall bladder to find no gallstones that her team recommended looking into having a preventative Whipple done. Since our family was already familiar with the Whipple procedure (my uncle/mom's brother had one 9 yrs ago), we initially couldn't believe that the doctors were suggesting this as a preventative measure, but, considering the clues, family history and after learning that these are done daily on a preventative basis, my mom said let's do it. Her surgeon did a phenomenal job and she was out of the hospital within a week of her Whipple. They removed a 2cm tumor from her distal bile duct with good margins but 2 of 36 lymph nodes removed showed involvement. Needless to say, we were praying that the surgery was a cure. We found an amazing oncologist at MD Anderson and my mom decided to have her chemotherapy there. She was to start a Gemzar and Cisplatin regimen every 2 weeks, but the blood test 2 days before she started showed that her CA 19-9 marker was elevated. We were hoping that the elevated marker was a result of the removal of her last drain a week before, but out oncologist wanted to be safe and changed the treatment to Oxaliplatin and Xeloda on a 3 week cycle. My mom has always been in amazing physical condition and the chemo combination didn't seem to have any significant side effects with her, but above all, we were hoping that it was working. Her CA 19-9 marker continued to rise and our oncologist had a CT scan and PET scan done before the start of her 3rd cycle...3 days ago we found out that her cancer had come back and spread to 2 tiny spots in her liver. We were devastated. Her oncologist changed her protocol back to Gemzar and Cisplatin but also added Avastin, a monoclonal antibody that targets the cancer cells in the bloodstream and has shown good effectiveness dealing with colon and breast cancer. We're praying that it works. she still hasn't shown any side effects from the treatment except being a little tired...knock on wood. We're also looking into having her tumor tissue sent to a lab that does molecular profiling and targeted therapy testing on the tumor cells in a test tube. My father has spoken to a couple of long-term pancreatic cancer survivors who have attributed their success to having their tumor tissue profiled and treated with targeted therapies. It's definitely considered experimental but seems to make a lot of sense. We'll look into anything at this point.

 

On 4/28/2007 Danb31 wrote:

Your story sounds very similar to what we've recently been going through with my 59 yr old mother. Her only brother passed away 9 years ago from pancreatic cancer, so our immediate response when she woke up one morning last December jaundiced with a bloated feeling in her abdomen was to assume the worst. Initial CT scan showed a clear pancreas but sludge in her gallbladder and her bile duct was strictured. First ERCP showed no evidence of any tumor and they inserted a stent to open up her bile duct. The stents kept moving and after 2 more ERCPs, an ultrasound, an endoscopic ultrasound and the removal of her gall bladder, the doctors still found no evidence of cancer and blamed the stricture on gall stones. It wasn't until they opened up her gall bladder to find no gallstones that her team recommended looking into having a preventative Whipple done. Since our family was already familiar with the Whipple procedure (my uncle/mom's brother had one 9 yrs ago), we initially couldn't believe that the doctors were suggesting this as a preventative measure, but, considering the clues, family history and after learning that these are done daily on a preventative basis, my mom said let's do it. Her surgeon did a phenomenal job and she was out of the hospital within a week of her Whipple. They removed a 2cm tumor from her distal bile duct with good margins but 2 of 36 lymph nodes removed showed involvement. Needless to say, we were praying that the surgery was a cure. We found an amazing oncologist at MD Anderson and my mom decided to have her chemotherapy there. She was to start a Gemzar and Cisplatin regimen every 2 weeks, but the blood test 2 days before she started showed that her CA 19-9 marker was elevated. We were hoping that the elevated marker was a result of the removal of her last drain a week before, but out oncologist wanted to be safe and changed the treatment to Oxaliplatin and Xeloda on a 3 week cycle. My mom has always been in amazing physical condition and the chemo combination didn't seem to have any significant side effects with her, but above all, we were hoping that it was working. Her CA 19-9 marker continued to rise and our oncologist had a CT scan and PET scan done before the start of her 3rd cycle...3 days ago we found out that her cancer had come back and spread to 2 tiny spots in her liver. We were devastated. Her oncologist changed her protocol back to Gemzar and Cisplatin but also added Avastin, a monoclonal antibody that targets the cancer cells in the bloodstream and has shown good effectiveness dealing with colon and breast cancer. We're praying that it works. she still hasn't shown any side effects from the treatment except being a little tired...knock on wood. We're also looking into having her tumor tissue sent to a lab that does molecular profiling and targeted therapy testing on the tumor cells in a test tube. My father has spoken to a couple of long-term pancreatic cancer survivors who have attributed their success to having their tumor tissue profiled and treated with targeted therapies. It's definitely considered experimental but seems to make a lot of sense. We'll look into anything at this point.

 

I have posted these suggestions before so I apologizre if I spamming the Forum but Davanat is a new drug targeted for bile duct cancer. It is a carbohydrate that the cancer cells grab onto that then makes the 5FU or Xeloda many times more effective. The university of Michigan and (I think) Barrett cancer Center in Cincinnati are testing it with good initial results. Also, Andrew Kennedy at Wake Oncology in Cary, North Carolina has pioneered the microsphere treatment of liver cancers that is quite spectacular if they can access vthe tumor blood supply. They inject millions of tiny gspheres with radiation in liquid form into the tumor blood supply and kill the tumor. This can be an ongoing process if more tumors show up. I asked Dr. Kennedy if he could use this technique on bile duct tumors and he said "yes". Send him your scans. He will respond quickly. His results with liver cancer have been spectacular and he is getting press all over the world. The Mayo Clinic and Washington University in St. Louis (Dr. William Chapman) are doing liver transplants after a specialized combination of radiation and chemotherapy. Mayo Clinic reports as high as an 82% survival rate at 5 years in carefully selected (no metastases) bile duct cancer patients. Call the liver transplant office at Barnes Jewish Hospital, Siteman cancer Center for Advanced medicine in St. Louis. The university of Pittsburg has a new vaccine in trial for pancreatic cancer. It may be applicable to bile duct cancer which is also a similar solid tumor. Good luck. Davanat may buy you some time. Cures are on the way.

 

On 6/24/2003 Susan M. wrote:

I'm a 47 year old female with 3 children. I had a tumor removed from left lobe of my liver Feb. 19, 2003 at Vanderbilt in TN. Path report stated cholangiocarcinoma, primary tumor removed with good margins. Very curative surgery. Went back for 3 month CT June 9 and was told more tumors had shown up in right lobe. Oncologist recommending chemo (5FU and Gemzar with leucovorin). Any miracle stories or some type of good news about this cancer and outcome?

Susan M...

Your email is over 4 years old now and I cant help but wonder your "status".  I have bile duct cancer and wanted to talk a bit, but maybe I will wait and see if you reply to this first.

 

On 7/13/2007 Pamngreenvillesc wrote:

 

On 6/24/2003 Susan M. wrote:

I'm a 47 year old female with 3 children. I had a tumor removed from left lobe of my liver Feb. 19, 2003 at Vanderbilt in TN. Path report stated cholangiocarcinoma, primary tumor removed with good margins. Very curative surgery. Went back for 3 month CT June 9 and was told more tumors had shown up in right lobe. Oncologist recommending chemo (5FU and Gemzar with leucovorin). Any miracle stories or some type of good news about this cancer and outcome?

Susan M...

Your email is over 4 years old now and I cant help but wonder your "status".  I have bile duct cancer and wanted to talk a bit, but maybe I will wait and see if you reply to this first.

 

I too am curious about your status.

Wayne Parsons

HI,  I am sorry to hear of your cancer. My dad was diagnosed 6 months ago, had surgery, in which dr did not get all. He had radiation (which I recommend) - the surgeon thinks the ct scans look good after the series, a radiologist does not agree.

We have found doctors are not necessarily up front with the truth. May dad's cancer ( bile duct-klatskins)  has a life expecancy of 6 months - 2 yrs if one is lucky. Dad is having chemo once per week - one with gemzar and other chemo combo, the second week with gemzar, the third week off, and the series repeats.

 

Go on the  NIH website to see about trials. Since it is a rare cancer (Klatskins is) there aren't many beyond phase 1 or 2. There are 3 books that I sent dad that he found helpful:

 

• 1 of: Cancer: 50 Essential Things to Do: Revised and Updated Edition
  Sold by: Amazon.com, LLC
• 1 of: Beating Cancer with Nutrition
  Sold by: Amazon.com, LLC
• 1 of: The Chemotherapy & Radiation Therapy Survival Guide (Chemotherapy and Radiation Therapy Survivor's Guide)
  Sold by: Amazon.com, LLC

Best of luck to you and your kids and spouse. My prayers are with you. Please let me know if you find out anything new about bile duct cancer. Debbi

 

 

One more detail. It is important to have two different types of chemo - the gemzar and sorry but I don't know the name of the other but I know that it is platinum based.

thank you for posting this again. I missed it the first time. My dad is having chemo right now and there are differing opinions as to whether the radiologist got all the cancer - so chemo has been upped. I am so grateful to read about the therapy you wrote about. Bless you, D.R. caregiver

Look into the drug DAVANAT and also you are close to Dr. Andrew Kennedy in Cary, NC who just removed my wife's Kaltskin's tumor with a new non-invasive procedure called radioembolization or Y-90 microspheres. No surgery, it took 2 hours and uses radiation infused into the tumor blood supply. It is done as an outpatient procedure and they can go back in if tumors reappear. also check out Dr. William Chapman at Washington University in St. Louis and Dr. Rosen at Mayo Clinic in Rochester who are pioneering a new cure for cholangioacrcinoma.

 Wayne

 

On 6/24/2003 Susan M. wrote:

I'm a 47 year old female with 3 children. I had a tumor removed from left lobe of my liver Feb. 19, 2003 at Vanderbilt in TN. Path report stated cholangiocarcinoma, primary tumor removed with good margins. Very curative surgery. Went back for 3 month CT June 9 and was told more tumors had shown up in right lobe. Oncologist recommending chemo (5FU and Gemzar with leucovorin). Any miracle stories or some type of good news about this cancer and outcome?

 

My husband (52) was diagnosed in mid-August.  He had a liver resection and partial whipple mid-September and his surgeon was Myron Schwartz at Mt. Sinai in NYC.   He is now under the care of Oncologist; Dr. Howard Bruckner at Cabrini Medical in NYC.  I would highly recommend your consulting with him if possible. He is a pioneer in the treatment of this kind of cancer and has had unprecedented success in treating GI cancers of all kinds  If this is not possible you may ask your doctors to confer with him.  He is THE GUY. We are in the middle of pretty intense treatment right now but I am very optimistic that my husband will be well again.

My prayer for you is for all the support and love you need from family and friends.  Love is the true healer.  I send my love via this mail!

 

 

 

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