Topic: New Member

Hi Everyone,

My name is Bruce and I live in Metairie, LA, a suburb of New Orleans.  On August 21, 2012, my wife had pains in her chest and thought she was having a heart attack, so I took her to the emergency room at Ochsner Hospital.  She stayed there all night during which they did a blood test, which showed her liver numbers were very high, and a CT scan which showed she had a 5.4 cm. x 4.5 cm. mass in the right section of her liver and another smaller one in a nearby lymph node.  The swollen lymph node was compressing the common bile duct reducing the flow of blood and causing the inside of the duct to bleed.  The blood made its way to the pancreas which caused pancreatitis and it was the pancreatitis which made her feel she was having a heart attack.  She was admitted to the hospital.

At first they were going to do a biosy, but decided against that because of the probability of spreading the cancer.  During the next few days, they did many tests on my wife including three endoscopies, the first for investigation, the second to place a stent in the common bile duct where the lymph node was compressing it, and a third to do an ultrasound map of that area.  At the end of the tests, Dr. Reichman concluded that my wife had bile duct cancer, which had spread to the liver and a lymph node.  He recommended doing a liver  resection in which he would remove about 72% of the liver, including all of her right section and possibly some of her left section, the lymph node, and part of the bile duct.   He said that the absolute minimum remaining liver after a resection is 20% and he doesn't operate if its not at least 25%.   He set up her operation for September 6th.  The Ochsner cancer board agreed with him.

Dr. Reichman has excellent credentials and a super bedside manner, but being unfamilia with himr, we thought we should get a second opinion.  Later, he even suggested we get a second opinion.  One of my wife's family members is a general surgeon and we asked him, but he could not recommend anyone in New Orleans and suggested we go to MD Anderson.  We were under the impression that you had to have cancer for MD Anderson to accept you and since the cancer wasn't proven, we didn't investigate that.  My daughter, who was an oncology nurse, had contacts at MD Anderson and they suggested that  we should get an opinion from Dr. John Mansour of Southewestern Medical Center in Dallas, who also has excellent credentials and a super bedside manner.  We agreed and the contacts set it up.  We met with Dr. Mansour for 1.5 hours during which time he told us that my wife should not have the operation, because the left side of her liver was smaller than normal and he thought there was a chance the liver would not grow after the resection.  He recommended doing a procedure to force the left section to grow which take about a month during which time he would use chemo to try and reduce the cancer.  Both doctors agreed that chemo is effective in only 30% of the cases.  He presented it to his cancer board and they all agreed that my wife should not have the operation.

We met again with Dr. Reichman and he did not budge from his recommendation that my wife should have surgery.  He emphasized that this cancer was fast growing and that they couldn't operate until a month after the chemo was stopped, in which case there would be at least a two month delay before the operation during which the cancer could grow.  Being confused, we thought we should get a third opinion and Dr. Reichman suggested his mentor, a Baylor expert, so we investigated that and the Baylor expert stated he saw no reason why the liver could not be resectioned.  The operation was moved to September 12th.

The operation was 100% successful.  The margins were clear and only the one lymph node had cancer.  The cancer turned out to be CC, as Dr. Reichman thought.

My wife does have to have chemo and she has an appointment with the Ochsner oncologist on October 22nd to discuss her chemo treatment.  In the meantime we are looking for a second opinion on the chemo treatment and would like to get it without having to travel.  I've read that others have received a second opinion on chemo treatments from Dr. Javle of MD Anderson and I would appreciate any information on the procedure for obtaining an opinion from him.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: New Member

Dear Bruce, welcome to our extraordinary famiy but sorry you had to find us! WOW!
Your wife really went to war and back and I am so very happy that the surgery was a success. You really did your work on this one. I believe it proves why we believe in other opinions if only to satisfy us that we are doing the correct thing. I think if you would e mail your post to Dr. Javle and also ask what chemo he would recommend you will hear back from him. He may want copies faxed of Scan and LAB reports. I am wishing your wife continued success and please keep us updated as we all truly care! You are both awesome!

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.

3 (edited by marions Wed, 10 Oct 2012 16:06:06)

Re: New Member

Bruce....a warm welcome from me to you. 

Congratulations on your wife's successful surgery. Your diligence in persuing information from qualified and experienced physicians is remarkable.  The obtained information gave you the power to make an educated decision.
Given that you are in pursuit of obtaining information regarding adjuvant therapy I thought to enclose the following links:

http://www.wjgnet.com/1007-9327/pdf/v18/i21/2591.pdf

Additionally the UK is conducting a trial of possible interest to you:
http://clinicaltrials.gov/ct2/show/NCT0 … amp;rank=1  (results not expected until 2014)

In progress for extrahepatic CC, but not recruiting:
http://clinicaltrials.gov/ct2/show/NCT00789958

This trial is still recruiting:
http://clinicaltrials.gov/ct2/show/NCT01313377

I hope not to confuse you, but given your inquisite mind this may be of help to you.

Please, stay in touch. I am sending all my best wishes your way.
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: New Member

Hi Bruce,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what your wife has been through. She sure has been through a lot. I am glad that you have joined us all here as you have come to the right place for support and help, and I know that you'll get a ton of both here from everyone.

Please let us know how things go for your wife and I hope that she is able to be seen by Dr Javle. We are all here for you.

Best wishes to you and your wife,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member

Hi Bruce,

I can't answer your question about MDA, but Lisa or Tiffany might be able to help you. I wanted to welcome you to this site and say that I am thrilled your wife was able to have a resection. It's nice to see that you got 2nd and 3rd opinions to make sure you were doing the right thing. I wish your wife all the best with her recovery and whatever treatment you decide on. 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: New Member

Hi Bruce,
I have had two liver resections at The Cleveland Clinic Foundation by Dr. John Fung. When it came to chemo I wanted a second opinion and emailed Dr. Javle. He requested my records from the Cleveland Clinic be sent to him and he reviewed them and agreed that I was on the right chemo drugs.
Lisa

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: New Member

Bruce-Welcome and like everyone else, so sorry you had to find us. I am a CC survivor. I have an amazing story to share, please read it at www.catherine
dunnagan.com under the telegraph link. There is HOPE.
I was "cured" by Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. My tumor was also inoprable and my only HOPE was a liver transplant. I was told 6-8 months with out one and like your wife and many others in our CC family the diagnose came out of left field, I was fine on July 30,2008 and dying on July 31, 2008!! Several of our CC family have contacted Dr. Chapman for second opinions and I know of at least one that life was saved because he said yes to surgery when another said no. Dr. Chapman is an amazing doctor and person, he has a heart and soul.
Please contact me if you have questions or just want to talk.
Lots of prayers and HOPE-Cathy

Re: New Member

I just realized I never thanked everyone for responding to my post and providing all the useful information, so thank you very much.

To continue my wife's story, we met with the Ochsner oncologist on October 22nd and she told us that she was prescribing four cycles of the GemCis regimen followed by 5 weeks, M-F, of chemoradiation with 5FU and if she didn't qualify for the radiation, it would be six cycles of GemCis.  We saw the radiation oncologist the next week and she was accepted for radiation, so the plan was in place.

A port was installed, with an accidental punction of a lung, and chemo was started on 11/19/12.  As of 1/29/13, Margaret has finished day 1 of her 4th cycle of GemCis.  She has skipped one week during the third cycle because of a low mature while blood count. She gets GemCis on day 1 and day 8 and a Neulasta shot on day 9.  She's had a fever one time in each cycle which required going to the ER three time so far.  Ochsner sets a temperature limit of 100.4 for trips to the ER by chemo patients.  The first trip was 13 days after the cycle 1 first chemo day, her temperature got to 100.6 at 11:00 pm.  By the time they checked her at the ER it was down to 99.9 and they asked her what she wanted to do, and she chose to go home.  The second trip was at 11:30 pm,19 days after the second cycle first chemo day. Her temperature got to 101.3, they put her in a bed in the ER, ran a bunch of test to find out what was causing it and decided it was a  urinary tract infection. We came home at 4:30 am.  The third trip was at 6;00 pm, 16 days after the third cycle first chemo day, and her temperature got to 102.7.  They put her in a bed in the ER, ran a bunch of tests again, couldn't find anything, so they put her in the hospital for two days.  After the two days they still didn't know what it was but decided it must be cholangitis.

The fevers are getting worse with each cycle.  The oncologist, who we saw Monday, was getting ready to call quits to the chemo but after she saw how great Margaret looked, she decided to go with another round of chemo and she's playing it day by day now.  She did say that she was calling off any radiation because it's hard on the liver, but I guess we'll cross that bridge when we get to it.

Does anyone know what causes these fevers?  I asked her oncologist if it could be tumor fever, and she said no, that if it was, the fevers would occur every day.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: New Member

Hi Bruce,

My daughter, Lauren gets a fever every time she has Gemzar, but it only lasts for about 3 days right after chemo. It never goes higher than around 100.5, so she takes Tylenol to bring it down. Margaret's is different in that it happens so long after chemo and goes higher. I'm sorry you have to make so many trips to the ER and that I don't know what causes her fevers, but I think you have done the right thing. All the best to you and Margaret.

Hugs,
-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: New Member

Bruce.... Only the physician would be able to determine, but I remember someone mention that his unexplained fever responded to nonsteroidal anti-inflammatory drugs.
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: New Member

Thanks Pam and Marion. I think I read on these discussion boards that you shouldn't take NSAIDs, including aspirin & ibuprofen, when you're having chemo and my oncology nurse daughter said the same thing, so Margaret hasn't taken these since she started chemo.  She also won't take Tylenol because she read that it was bad for the liver.  During the second ER visit, the doctor suggested she take an ibuprofen to reduce the fever and Margaret refused.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: New Member

Bruce....correct with your assumption of NSAIDs however; the person I was referring to was a febrile neutropenic patients with unexplained fever and he indeed had been given anti-inflammatories with good results.  Again, I am just mentioning this.  The physician is the expert. 
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

13 (edited by PCL1029 Fri, 01 Feb 2013 23:04:37)

Re: New Member

Hi,
NSAIDS ( ibuprofen,naproxen,Celebrex and aspirin ) are important medications for pain and fever. Acetaminophen is not NSAIDS but its effects may be related to inhibit the COX family enzymes as a COX inhibitor like Celebrex, a COX-2 inhibitor. NSAIDS  are anti-inflammatory agents while Acetaminophen is not.
For fever, ibuprofen works better than acetaminophen  . Recently FDA recommended acetaminophen dose to be lower to single dose not to exceed 650 mg and combination products such as Vicodin, Norco, Lortab etc. not to exceed 325mg in each tablet. Acetaminophen produces less GI side effects ( ie: stomach discomfort) than NSAIDS.; maximum daily dose should not exceed 4 gm total( in hospital practice ,most pharmacies even encouraged to lower it to not to exceed 3 gm / 24 hrs).
I do not take acetaminophen since it does not work for me as well  as ibuprofen or  naprosyn does. But I don't think it will cause any problem to the liver if you take it as mentioned above unless you have liver cirrhosis or taking it with alcohol .Anyway, in emergency case whereby you need to reduce fever in ER quickly and effectively , ER  will use the IV formulation of acetaminophen .
If you are on anticoagulant like warfarin, then the NSAIDS dosage may need to be adjusted by your GP  if you take them on a relatively regular basis, acetaminophen does not have the same precaution as NSAIDS with regard to oral anticoagulant  like Coumadin.
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.

14 (edited by 2000miler Fri, 17 May 2013 16:29:12)

Re: New Member

Marion asked me on another board how my wife was doing, so I'll respond here where I have her story.

In my last post on 1/30/13, I mentioned that, because of the fevers my wife had while she was on chemo, the oncologist decided to continue the chemo on a day by day basis, and to cancel plans for any radiation.  Well, that all changed.  My wife finished all four 2 wk on, 1 wk off, cycles of GemCis on 2/4/13.  She started 25 M-F radiation treatments with 5FU on 2/25 and ended on 4/1/13, the day after Easter.  She would have finished on Good Friday but Ochsner Radiation was closed on that day.

Since then she has gotten her life back, dancing 4 times/wk, playing bridge 3-4 times/wk, researching waste and corruption in Jefferson Parish politics and making presentations at the Jefferson Parish council meetings and other public meetings.  We traveled to Michigan to see our granddaughter graduate from Michigan State University earlier this month, are having a big birthday party  for her and her twin sister this June where our 4 children and 7 of our 8 grandchildren are coming to New Orleans, and are planning a cruise to the Panama Canal this October.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: New Member

WOW! Bruce this is what I call a bestest Post! We have another Super Hero in your wife. She rules CC but it is not ruling her. You have so many wonderful plans/goals she has a lot to look forward to. Wonderful happenings, wonderful wife, wonderful life. Thank you so very much for this and my wish is for continued success!

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: New Member

Fantastic, Bruce.  And you kept us in the dark about all of this?  Congratulations are in order, as life appears to have taken on normality again.  Don't need to remind you to enjoy life because; you already know how to do just that. 
Big hugs to you and your family,
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: New Member

Hi Bruce,

Thanks for your latest update and wow, it sure is a great one!! You all certainly have got your life back and from what you have said, life sure does sound good!! Keep on enjoying and celebrating with your family!

My best to you and your wife,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member

Youza Bruce!  You and your wife are very busy folks, I got a little exhausted just reading about all you do!!  This is great news as the job of life is what we really are all striving to have and you and your wife have certainly mastered it. 

Best wishes
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

19 (edited by 2000miler Sun, 19 May 2013 13:49:53)

Re: New Member

Thanks folks.  I guess after 57 years of marriage, we have it figured out.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: New Member

Bruce.....the 57 years of marriage itself is a miracle.  What is the secret?
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: New Member

Bruce
Thank you for haring such wonderful news....live and laugh often!
Lisa

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

22 (edited by 2000miler Mon, 20 May 2013 11:00:41)

Re: New Member

Marion - I think the secret is just keeping the vows made when we got married. Of course, my wife's vow contained the word "obey."  smile

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.