• LindaR
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  • From: Downers Grove, IL USA
  • Registered: Fri, 02 Nov 2012
  • Posts: 63

Topic: Hello and thank you for this great resource

Hello everyone.  Although I just registered today, I feel as though I know some of you as I have been reading your posts for quite a while.  This site has been a wonderful source of information.
   My husband was diagnosed with intrahepatic cholangiocaracinoma in October 2011 and had an extensive resection.  Although the surgeon achieved clear margins, there was a positive lymph node so the oncologist recommended chemoradiation followed by an additional course of Xeloda.  All was well until September 2012 when a CT scan identified tumors in the liver as well as enlarged lymph nodes near the heart.
   The oncologist referred my husband for a clinical trial at a large university hospital but the oncologist there determined he was ineligible because of the radiation treatments. Both oncologists have consulted since and recommended a course of Folfox to be administered at our local hospital.  In addition, my husband had a new biopsy and samples of his tumors have been sent to Foundation Medicine for molecular analysis in an effort to identify the most effective chemotherapy.  These results should be back within 6-8 weeks.
   I have been encouraged to see that some people have managed to survive with inoperable CC for several years.  I have been reading everything I can find about this disease and it seems there are promising treatments under development that may provide some hope.  I'm particularly interested in Minnelide, the new pancreatic cancer drug announced by the U of Minnesota a couple of weeks ago that will begin clinical trials in 2013.  My husband is currently feeling very well and our goal is to keep him alive and healthy for as long as possible in the hope that a new treatment may come along that will make a difference. 
  I will appreciate any additional suggestions anyone may have. Linda

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: Hello and thank you for this great resource

Linda welcome to our elite club that no one really wants to join! You have done an outstanding job of learning about CC, with attitude, hope and everything I can think of. You are some kind of dynamo! While we wish you didn't have to be here, we are very happy you have found us. Will be anxiously waiting for molecular results and you are so right to keep hubby well until something new comes forward. That is our HOPE! Please keep us posted as we truly care.

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.
  • Registered: Mon, 27 Jun 2011
  • Posts: 432

Re: Hello and thank you for this great resource

Linda,

Welcome to the site.  Please keep us posted on your husband's care.  You will get a lot of information and support here.

Take care,

Susie

4 Reply by marions (edited by marions Sun, 04 Nov 2012 20:28:59)

  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: Hello and thank you for this great resource

Linda...although we would love to meet for other reasons than those that bring us together nevertheless, we are always thrilled to greet new members. Linda, I took a look at the mentioned drug and would like to share the information with all others:
http://www.health.umn.edu/media/release … /index.htm

FOLFOX consists of:
FOL= Leucovorin Calcium (Folinic Acid)
F    = Fluorouracil
OX  = Oxaliplatin

The most common complaint reported is that of Peripheral neuropathy caused by Oxaliplatin.  Reading this might be of help:
http://www.cholangiocarcinoma.org/punbb … 040#p63040

Additionally this link may be of help to you:
http://www.nccn.com/component/content/a … /1722.html

I wish the best of luck and please, stay with us.  We care.
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
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,487

Re: Hello and thank you for this great resource

Hi Linda,

I just wanted to welcome you to this site. I am sorry your husband has some new tumors. I hope they can pinpoint what will work best for your husband's treatment. Please keep us informed as to how he is doing. Wishing you both all the best.

-Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

  • From: Revelstoke BC
  • Registered: Sat, 01 Jan 2011
  • Posts: 552

Re: Hello and thank you for this great resource

Linda,  Sounds like you are on the right track, keeping updated with this disease and being such a strong support and advocate for your husband. Haven't heard about the new pancreatic drug but will be sure to read about it. I truly believe that one day one of these promising treatments will be the cure. Sorry, can't offer any other suggestions except healthy eating and exercise. Hugs. Nancy

Loving my husband from afar.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,831

Re: Hello and thank you for this great resource

Hi Linda,

Welcome to the site. Sorry that you had to find us all and I'm sorry also to hear what your husband has been through. But I am glad that you have joined us here as you've come to the best place for support and help, and I know that you will get a ton of both from everyone here.

There is not much that I can add to what has already been said to you here, but I just wanted to stop by and welcome you. I am glad to hear that you have been reading into and learning much about CC. Actually, I wish that you didn't ever have to learn about CC and that goes for all of us! But the more that you learn the better informed you will both be when it comes to making decisions etc. So keep reading and keep coming back here, ask questions and please let us know how things go for your husband. We are all here for you.

Best wishes to you and your husband,

Gavin

  • LindaR
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  • From: Downers Grove, IL USA
  • Registered: Fri, 02 Nov 2012
  • Posts: 63

Re: Hello and thank you for this great resource

Thank you for your warm welcome.  My husband's chemo started today and went well.  After further discussion with the oncologist, however, we are trying FOLFIRINOX rather than FOLFOX.  The side effects can be more severe but we are hoping for a more durable response.  Treatment may change after we receive the testing results and recommendations from Foundation Medicine but we are comfortable with this course of action for the present.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: Hello and thank you for this great resource

Linda, listen to your Gut, it will not steer you wrong. You can always switch down the road. Best of luck to your husband on his chemo and as always we will be looking for updates.

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.
  • LeeAnn
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  • Registered: Mon, 30 Jan 2012
  • Posts: 94

Re: Hello and thank you for this great resource

Hi Linda,
I was going to be on the FOLFIRNOX clinical trials at U of C but after genetic testing that I would not be able to tolerate it, so I'm on gem/cis.
Few weeks ago I was there for my chemo, I met a lady(also cc pt) who was on that clinical tirals  FOLFIRINOX for 6 months had a great responds and  she doesn't even take pain meds anymore.  But because it's so hard on your body and I think the duration of trial is only for 6 months, so she's on gem/cis now.
Hope your husband gets great results with little side effects.

  • LindaR
  • Senior Member
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  • From: Downers Grove, IL USA
  • Registered: Fri, 02 Nov 2012
  • Posts: 63

Re: Hello and thank you for this great resource

Thanks so much for your comment LeeAnn.  It was very helpful to hear about a CC patient who did will on FOLFIRINOX.  My husband has never had any symptoms from the CC and has no other health problems so the doctor thought he would be able to handle it for at least a while.  He was supposed to be in that clinical trial at U of C also but was ineligible because he had radiation after his resection.  Other than a little nausea the first evening, there have been no side effects from the chemo so far.  We know they will show up eventually but at least he is off to a good start. Perhaps we are in denial but we really do believe better treatments are on the way and we are committed to doing whatever is necessary to make sure he is still here to benefit from them.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: Hello and thank you for this great resource

Hi Linda, you are NOT in denial, if you were you would not be doing all the things you are doing. I prefer to say you are full of HOPE, without hope where would we be. Good starts for the chemo are great and who knows, they may continue all the way! Sending you a ton of good 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.