We were wondering if most of the CC patients also had PSC.  THe way it was explained, most PSC patients will develop CC.  My MIL found out she had PSC and CC at the same time.

2

(23 replies, posted in General Discussion)

My MIL looked into a clinical trial at Mayo.  A major reason for not entering it was because the costs, if there were complications were not covered.  One of her two insurances was not going to cover Mayo anyway, so it could have potentially cost her money to be a part of the trial.

Comment

169   


Is this like when you get a new car and all the sudden you notice all the cars like yours?  Is bile duct cancer becoming more prevalent, or am I just noticing it more now that I know about its existence?



By Andy Greene

May 20, 2013 5:50 PM ET


Ray Manzarek
 
Ray Manzarek

Michael Ochs Archives/Getty Images

Doors co-founder and keyboardist Ray Manzarek died today in Rosenheim, Germany, after a long battle with bile duct cancer. He was 74. 

"I was deeply saddened to hear about the passing of my friend and bandmate Ray Manzarek today," Doors guitarist Robby Krieger said in a statement.  "I'm just glad to have been able to have played Doors songs with him for the last decade. Ray was a huge part of my life and I will always miss him."

From the Archive: Ray Manzarek Opens a New Door

Manzarek grew up in Chicago, then moved to Los Angeles in 1962 to study film at UCLA. It was there he first met Doors singer Jim Morrison, though they didn't talk about forming a band until they bumped into each other on a beach in Venice, California, in the summer of 1965 and Morrison told Manzarek that he had been working on some music. "And there it was!" Manzarek wrote in his 1998 biography, Light My Fire. "It dropped quite simply, quite innocently from his lips, but it changed our collective destinies."

They quickly teamed up with drummer John Densmore and guitarist Robby Krieger and began playing gigs around Los Angeles. About a year later, the Doors recorded their debut album for Elektra Records. "We knew once people heard us, we'd be unstoppable," Manzarek wrote in his memoir. "We knew what the people wanted: the same thing the Doors wanted. Freedom."

The Doors didn't have a bassist, so Manzarek often played the bass parts on his Fender Rhodes piano. He also played a Vox Continental organ, which can be heard on the famous intro to "Light My Fire" and numerous other Doors classics. The group shared credit on most songs and split all profits evenly.

The group carried on for two more albums after Jim Morrison died in July of 1971, but they split in 1973. Manzarek remained extremely busy, producing albums for X and playing with Iggy Pop, Echo and the Bunnymen and others. In 2002, he began touring as the Doors of the 21st Century with Krieger and Cult frontman Ian Astbury. Doors drummer John Densmore filed a lawsuit over the use of the name and it lead to a protracted legal battle. 

"Morrison required all three of us diving into his lyrics and creating music that would swirl around him," Manzarek told Rolling Stone in 2006. "Without Jim, everybody started shooting off in different directions. . . The Doors was the perfect mixture of four guys, four egos that balanced each other. There were never any problems with 'You wrote this' or 'I wrote that.' But [after Jim died] the whole dynamic was screwed up, because the fourth guy wasn't there."


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4

(12 replies, posted in Chemotherapy)

My MIL has started chemo, she just finished her first 2 weeks of Gem/Cis.  So far no side effects.  She is also going to have a port placed.  Good news, the surgery team at U of Iowa is going to relook at her case after a couple of rounds of chemo, and if her MRI and numbers are good, may consider her for a liver transplant.

My question is this, why would one doc say she needed a whipple and liver transplant and now there is no talk of a whipple. 

But there is hope and good news!!!

Cathy-
   Thanks for your advise.  She is having gem/cis at University of Iowa and in a couple months they will revisit her MRI and she may be placed on the transplant list.  We are keeping our fingers crossed for that...

My MIL will be treated at University of Iowa due to issues with her insurance company in regards to Mayo. 

We have lived in KC for almost 10 years having moved here from Iowa.  We live north of the river close to the airport.  I have never been to Winsteads, I guess I will have to try it out now smile

Thanks for your responses!  I will pass them along.  She started having symptoms in early January of itchy and a little chest discomfort.  Besides the 2 stents, she hasn't had any treatment.  Its just amazes me how long it takes to get the ball rolling.

After the second ERCP they placed a metal stent at Mayo for a distal common bile duct tumor.  Cytology reports mets to lymph node and porta hepatis.  My mother in law is not a candidate for liver transplant or whipple.  Mayo Onc recommended the gem/cis regime of chemo.  The onc said it was a mild chemo.  We are wondering what mild means.  The family would really appreciate any advice of what to expect or what questions to ask.  From reading it sounds like she needs a RX for nausea and something lined up in advance for dehyration.


What can we expect?  What can we do for her?  What questions should we be asking the onc.  She hasn't started yet.  Her insurance will not cover Mayo so she is going to a different hospital for the chemo. 

Thanks for all your help.  The info on this site is so helpful.  I don't know where people would be without it.

Joanie had her spyglass at Mofitt in Tampa, small world

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(27 replies, posted in Introductions!)

Thanks Marion,
  We are still deciding what to do.  Joanie doesn't want to do the chemo if it will make her really sick...

Mayo clinic is conducting a research study in conjunction with Bayer. 

The study involves taking BAY 80-6946 (Phosphatidylinositol-3 Kinase Inhibitor) in combination with Gemcitabine OR Cisplatin plus Gemcitabine.

Joanie may be a candidate for this study.  We are wondering if anyone else is a part of this study and your experience.

Thank You

12

(27 replies, posted in Introductions!)

Lainy- did you have luck emailing Dr. Javle?  I searched the discussion board and say a thread where you had tried that route.

13

(27 replies, posted in Introductions!)

Rainy day at the beach, so we are spending time around the computer working with this.

Joanie does have a plastic stent right now, but the itching and jaundice and dark colored urine are back, she has an appointment next week to place a metal stent at Mayo.

The insurance is denying coverage at Mayo because they say she could have it done at University of Iowa because that is in-network and Mayo is Out of Network.  She has not been to the U of Iowa, so maybe they will refer her to Mayo anyway---that is our hope.

Does anyone have an email for Dr. Javle at MD Anderson-- we are thinking of getting a second opinion as so many of you have suggested him.

14

(14 replies, posted in General Discussion)

Wow!  Jim's story is so similar to Joanie's.  Thanks for sharing.  She started having symptoms in Jan 2013 as well.  (She is 67 in otherwise great health)  The team at Mayo had advised do nothing or chemo.  We are trying to figure out what to do as well.  Keep us posted.

15

(27 replies, posted in Introductions!)

Joanie is 67 years old in otherwise great health

Hi All,
   Thank you for all the information on this website.  My mother in law was recently diagnosed with bile duct cancer and psc (at the same time).  This website has been most helpful as all of us try to learn about this diagnosis.

   Joanie started having symptoms in mid-January 2013 while vacationing in Florida.  The initial symptoms were itching, dark colored urine and acid reflux.  In Feb, on a Wednesday, the itching was so intense, she went to a clinic for the first time.  At this point, the nurse practitioner recognized she was  jaundice.  The next day labs and ultrasound was performed. That evening the nurse practitioner called and reported the test results for the liver functions were approximately 5x higher than normal.  Her Alkaline Phosphatase was 856 and her Bilirubin was 5.5  She said Joanie needed to see a GI specialist immediately.  On Friday, she had a CT scan and an appointment with the GI specialist.  The CT Scan significant finding was: common bile duct  wall thickening or enhancement concerning for inflammation of the common bile duct. 

Tuesday, Joanie had ERCP and plastic stent placed at OakHill Hospital.  The ERCP showed a tight distal CBD and diffusely beaded irregular appearing proximal CBD, intraheptatic biliary ducts.    At this point, strictures are noted and beading in the ducts.  The diagnosis from the pathology was focal moderate chronic portal inflammation  and focal portal fibrosis and mild pericellular fibrosis.  The pathology showed no malignancy in the liver from the brushing.

On March 7 and 8, she had a MRI and ERCP spyglass at Mofitt Hospital.  One week later, her doctor called informing her  she had 2-3 cm malignant mass. The mass was in the mid CBD extending to superior margin of the pancreas, but the pancreas was normal.  Findings:  Extensive common hepatic ductal thickening present to the bifurcation and thickening of the distal gallbladder and cystic duct.   Irregular beading of the intrahepatic ducts and left hepatic duct suggesting sclerosing cholangitis.  There was a stricture fo teh left hepatic duct at the bifurcation.  There was a periportal lymph node high in the porta hepatis measuring 1.5 x 1.1 cm.

Joanie lives up north and was vacationing in Florida, so she was referred to Mayo Clinic in Rochester MN.  March 26 was her first trip to Mayo Clinic.  On the second day of office visits, she met with a surgeon.  He said she would need a whipple operation along with a liver transplant.  The whipple was needed because the mass was so close to the pancreatic head.  The transplant was needed because the right lobe of the liver was so affected.  The right lobe was "dark" there were no ducts showing going to the right lobe.  He advised that that she would not be able to withstand both procedures.  He did not feel she was a good liver transplant.  He advised consulting with ONC.

The ONC recommended putting two different chemos together.  This is supposed to be a mild chemo with minimal side effects.  Joanie may also be part of study by Bayer taking place at Mayo.  This entails taking the two chemos plus a third drug.   

Mayo transplant team looked at her case again, and there is a slight chance she could be a candidate for a liver transplant, but they need to do more tests to make sure the cancer has not spread to lymph nodes. 


So... here we are... all the immediate family is gathered down south... yes from Florida to Minnesota back to the ocean.  Its on Joanie's bucket list for all of her family to gather at the beach.  We all hopped in our cars, and drove down to spend this week with her. 

Now we have some decisions to make and would love some advice/insight from those of you who have been through this before.

What are your experiences with chemo?  Is it mild like they say?  What can we expect from the chemo?  How about the whipple and liver transplant--- has anyone had both done successfully?  Also, her insurance wants her to go to the University of Iowa-- has anyone been treated there?  How about the stents-- right now she has plastic, but will need another one placed soon-- metal or plastic? 

Joanie is feeling ok.  She gets a little tired, itches a bit, eyes are slightly yellow, urine color gets dark and then normal, lost a little weight.  No pain. 

Thank you for taking the time to read her story and help us with our questions. 

Thank You,
  The Family