Topic: Newly Diagnosed, new member ????

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

Re: Newly Diagnosed, new member ????

Joanie is 67 years old in otherwise great health

Re: Newly Diagnosed, new member ????

Dear RoseGrace and The Family, welcome to our remarkable family but sorry you had to find us. I can just imagine how all your minds are spinning! You are already doing all the right things. And a family vacation was really the best. I can't comment on a Whipple and a Transplant together but I just know one of our astute members will be able to. My husband had a Whipple at 73. It is a BIG surgery, but not life threatening. His CC was also near the head of the pancreas. We are big believers in 2nd and 3rd opinions and Mayo is one of the best but this would be such a huge step if it was me I would still want another opinion. IF for no reason than to validate what has been diagnosed and the treatment. One suggestion I have: If Joanie is still itching there is a cream called Sarna at Walgreen's and CVS.The itching can be horrible and until Teddy was stented it really helped. He also took lots of cool showers and even used ice bags on parts that were itching more. I am wishing for the best for Joanie and please keep us updated on what is happening, you have come to the best place you can be for CC as we all really care.
P.S. I was born and raised in Kansas City. I still miss Winsteads.

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: Newly Diagnosed, new member ????

Rose and family.....indeed, you have a bucket list, but it is a list that can be addressed.

The fact that a liver transplantation has not been ruled out is something worth looking at.  Our Cathy has numerous stories to tell hence, I expect her to chime in on this subject.
As Lainy has mentioned, a second consultation with a surgeon “very familiar” with CC is something I would consider also. 

In re: to plastic vs. metal stent:  at this time and with so much uncertainty about further applicable treatments, I doubt that a metal stent will be considered.  It is no clear from your posting as to whether your Mother in-law has been fitted with a stent however; she will feel significantly better thereafter.

Not quite sure about the reasoning of the Insurance Company to contact the University of Iowa, but I would try to find out.  With this disease, I would stick with the major cancer center. 

I applaud your family for the involvement and interest in obtaining the most knowledge for the treatment of your Mother in-laws’ treatment options.  With your help she is assured that she will receive the utmost best care and support. 

This board is comprised of the most caring and kind people - I am positive that many others will chime in real soon.

Please stay with us and continue to reach out to us. We are in this together.
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: Newly Diagnosed, new member ????

Hi Rosegrace,

I just wanted to say hello and that there will be so much support, knowledge and advice here for you and your family. Hopefully the itching will start to settle now that she has a stent in meaning her jaundice/bilirubin level will come down.

Clare

Clare

In the stars now . . . .

Re: Newly Diagnosed, new member ????

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.

Re: Newly Diagnosed, new member ????

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

Re: Newly Diagnosed, new member ????

Hi RoseGrace, I found this e mail, if it does not work as I have seen 2 different emails on here, please let me know. He is supposed to be wonderful and very compassionate. Best of luck.

mjavle@mdanderson.org

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: Newly Diagnosed, new member ????

Hi,
Please forgive me straightly go to the heart of the issue about your Mother-in Law. As always, use the best judgement that you can to make the best decision from information collected thru the internet. Not all of them are really useful, including this website amd me as well. I am only a patient and not a doctor.
If I were you:
1. Time is of the essence and I will recommend you to get 2nd opinions ASAP by 2 liver specialists (surgeon) ,one(any one) from Sloan-Kettering and the other one is Dr. Kato from Columbia/Pres.(ask specifically you want to see him. ). go to see or have the record sent to them(ie: computer CT scan disc and written reports,pathology report and slide if any, and MRCP and lab works done  from Mayo to the 2 doctors. Of course, face to face meeting provide you more info. and the character of the doctor and hence your confidence in them.Compare what the two surgeons's comments with Mayo's and try to make the best call you cam for her.

2. Chemotherapy are of  limited value ,it will be palliative and not curative. surgery is the only possible cure for CCA. Adjuvant therapy ,however, may prolong survival after surgery.

3. Get the 2nd opinions from the surgeons first, and ask them if having the metal stents insertion will affect their surgical decisions for your MIL.
4. university of Iowa is an excellent  and comprehensive  regional  care medical center.(good ranking in general health care) but I do not think they are specialized in cholangiocarcinoca and PSC. I was graduated from Iowa city long time ago.
keep in touch 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: Newly Diagnosed, new member ????

Rose...metal stents are considered permanent and can hinder or prevent further surgeries.  Are you then going along with Mayo recommendation for chemotherapy?
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: Newly Diagnosed, new member ????

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

Re: Newly Diagnosed, new member ????

This is my firs time on this site.  It is good to know there is a place to go to get info from others.  I am a 76 yr old female, diagnosed June l, 2011.  It was like I was running around one day and the next day having surgery for this cancer.  I was in the Tampa Bay area but now reside in upstate N.Y. to be closer to my son and his family.  I am very satisfied with the surgeon and believe I had as good of outcome that can be expected. 
Right now, I am on mild meds - other than fatigue - I have few symptoms.

Re: Newly Diagnosed, new member ????

Hi,
May I ask who was the surgeon and where you had been treated?
Do you still have CT scan or MRI or lab work for  follow up and how often?
thanks to stop by our website.
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: Newly Diagnosed, new member ????

Dear Kilgore South, welcome to our remarkable family and congratulations on being a Super Hero along with being a survivor. I am also curious as to what follow up treatment is and what kind of CC and surgery did you have? I am sure the best RX was moving near your son! Please keep us updated on yur progess and even though you have had your surgery, this is the best place to be!

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: Newly Diagnosed, new member ????

Kilgore....a warm welcome from me also. Congratulations on the surgery.  Other than tiredness, do you have any other symptoms?   
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: Newly Diagnosed, new member ????

Joanie had her spyglass at Mofitt in Tampa, small world

Re: Newly Diagnosed, new member ????

Thanks so much for your support.  i will give the info about the surgeon on my next posting.  I had one-third of my liver removed (I also had part of my colon removed at the same time but it was a different type of cancer).  There was a "panel meeting" of specialists at Morton Plant Hospital in Clearwater,
Fl  who reviewed all records.     It is only necessary that I see a family physician locally once a month.  I also have lab work monthly.  No treatment is needed.             Right now, I am doing pretty well and appreciate every day that I have - especially family and friends.   Also, I am so glad for this site.

Re: Newly Diagnosed, new member ????

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.

Re: Newly Diagnosed, new member ????

rose...the upcoming visit with the oncologist will address many of your concerns.  You might want to share with your mother in-law that the majority of our members are undergoing chemotherapy treatments or have experience with it in another way.  I have read that million people per year undergo chemotherapy treatments of some sort.  (Not sure of the accuracy of the source.)
And, as long as your dear Mother in-law is assured that she can discontinue her treatments at any time, she just might be a bit less worried.
I am hoping for many others to chime in and share their thoughts with you.  They are fantastic group of people and always lend a helping hand (posting) to those seeking advice.

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: Newly Diagnosed, new member ????

Hi Rosegrace,

My daughter, Lauren, was on Gem/Cis at one time. They gave her nausea meds in her IV before she got chemo. It was called Aloxi. They also can give Zofran, but it gave Lauren bad headaches. She also got a lot of fluids through her IV, so I don't believe there was a chance for dehydration. I don't know if I would call any chemo "mild." Everyone reacts differently to every chemo. In Lauren's case, she would feel like she had been run over by a truck for a few days and sleep a lot after chemo. This particular chemo did not make her real nauseous, but once in a while it would sneak up on her and she would throw up. Ask for a prescription to take at home for nausea. Lauren has Compazine and Ativan. Ativan can also be used for anxiety. Lauren takes one every night before bed. Cisplatin can really mess with the blood counts, especially platelets. Lauren had to miss a few chemo treatments due to low platelets. This is quite common. As for questions you should ask the onc., the main one is to find out and make sure he or she has treated many people with CC. This is a rare cancer and some doctors don't have much experience with it. Write a list of questions you have before the appointment and make sure you are satisfied with the answers. I always go in with a list. I found reading as much as I can and learning the lingo really helps. It seemed so foreign to me at first, but now it is second nature. I wish you and your mother-in-law much luck and I am sending love and hugs your way. I really hope things go well. A positive attitude helps immensely. Take care.

-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: Newly Diagnosed, new member ????

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.

Re: Newly Diagnosed, new member ????

Hi, RoseGrace, I can't help with the chemo as Teddy never had it. But I had Zofran for other things. Had no side effects but also didn't think it helped. I tell you we are all so different.  BTW, I was born and raised in KCMO. Have you been there long? My parents lived across the street from the Ward Pkwy shopping center. I went to Southwest H.S. but that was long ago. The only thng I miss is Winsteads! Where is your MIL being treated? Best of luck and all my best wishes.

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: Newly Diagnosed, new member ????

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

Re: Newly Diagnosed, new member ????

I had a plastic stent. They said they would replace it with a metal stent if I was not a candidate for surgery. I had the metal stent put in. That was done in November. They told me that the plastic stents don't last and have to be replaced. I have had no problems with the metal stent. As for the chemo I am not a candidate for that so cant speak to that. Hope that is helpful.

Re: Newly Diagnosed, new member ????

RoseGrace-Welcome and sorry you had to find us. I am a CC survivor due to a liver transplant. I have the most amazing story to share, please read it at www.catherinedunnagan.com under ther telegraph link. I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO . Dr. Chapman is the most genuine caring doctor and very successful in his work, he help develop the Mayo's trial. There are 3 of us that HAD CC that doctor has transplanted, and Barnes is only 31/2 hours away for you. Barnes is also list as a Cholangiocarcinoma center! There was one other gentleman who lived in Iowa/South Dakato area and contacted Dr. Chapman for his mom for a second opinion after contacting Mayo and was able to see him and schedule her surgery (resection) and treatment plan before his appointment date at Mayo. Dr. Chapman is a real hero!!
Your mother-in-law's case sounds a lot like mine
Please call if you would like to talk (618-567-3247) or if if you would like Dr. Chapman's number, he is very phone friendly!! There is HOPE!!
Lots of prayers-Cathy