1

(4 replies, posted in New Developments)

Daisy....as Susie mentioned, adjuvant radiation therapy ( prophylactic) is likely to be recommended within a short period of time following resection.  However; the efficacy of this treatment has not been investigated in a phase III clinical trial setting and it is for that reason that experts agree or disagree on this approach.  This of course makes it difficult for the patients.  As you have experienced, the nature of the complexity of a biliary surgery prohibits some surgeons from attempting curative or palliative resections.  Often times this is coupled with the expert's opinion that based on the disease presentation, a surgery for this particular patient is of no benefit.  In your Mom's case, one must assume that she is cured and that vigilant follow-up care is adhered to. 
Hugs,
Marion

2

(11 replies, posted in Introductions!)

Sammi.....Contrary to the believe that a second opinion is based on mistrust of the diagnoses, it is widely recognized that a rare or life-threatening condition demands a consult with an institution specializing in a particular condition.  Not necessarily are these physicians smarter than others rather, they are comprised of a team of experts experienced with a larger volume of patients.  In addition to, these major centers will have the latest in technology available for treatment. 
Good luck today and please stay in touch.
Hugs,
Marion

3

(5 replies, posted in General Discussion)

Tabytha......Love, love, the report that everything is stable.  I also like the "imaginative" approach to this cancer in regards to the various treatments available to you.   In comparison to a few years back when little focus was given to our disease,  today's research on solid tumors allows for options far succeeding those of years ago.  Enjoy life, dear Tabytha.  I would love to share a Margareta (hold the salt) with you.
Hugs,
Marion

4

(4 replies, posted in Introductions!)

Jim....a warm welcome is heading your way.  You have reached out to a fantastic group of people eager to share their thoughts and experiences with you.   I much agree that  we must approach the diagnoses of this cancer with a good dose of hope as well as understanding of the complexity of this disease. 
Have you considered a "second" professional opinion from a surgeon "very" familiar with this cancer?
You may also want to consider a consultation with an interventional radiologist as well as an radiation oncologist and then an oncologist.

For a basic overview, the Cholangiocarcinoma Foundation offers a free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
I am sure that others will be around real soon and share their thoughts and opinions with you as well.  In the meantime, I am happy that you have found us.  We are in this together.
Hugs,
Marion

Thanks, Gavin.

soulman....welcome to our group.  So sorry to hear of your Mom's diagnoses.  As far as I know, this trial has been closed to biliary patients.  They only allow so many slots for our cancer type and I believe it filled up rather quickly.
This link lists the centers included.  Perhaps you want to call the numbers listed:
http://clinicaltrials.gov/ct2/show/stud … ocs=Y#locn
Hugs,
Marion

Using Patients’ Own Immune System to Knock-out Cancer: Adoptive Cell Therapy
Clinicaltrials.gov:   NCT01174121
Here is the link to the webinar and presentation about Adoptive Cell Therapy  that took place on Tuesday, October 21, 2014, 4 PM (EDT).

Dr. Steven A. Rosenberg, National Cancer Institute and Dr. Eric Tran, National Institutes of Health facilitated an online conversation about NIH clinical trial NCT01174121 using adoptive cell therapy, a technique that harnesses a person’s own immune system to battle cancer.  They outlined the background, objectives and frequently asked questions about the trial and explained how scientists at the NIH were able to grow billions of immune cells that were infused back into patients to melt away tumors.  There was also discussion about how this therapy could apply to a wide range of cancers.  Included was the perspective of Melinda Bachini who shared her journey as a cholangiocarcinoma patient and participant in this ground-breaking clinical trial as well as a Q&A session.
If you have questions for any of the presenters, please post them on the Cholangiocarcinoma Foundation Discussion Board in the “Clinical Trials” section under this topic and I will see that they are directed to the right person.
Marion

Here is the link to the webinar and presentation about Adoptive Cell Therapy
http://cholangiocarcinoma.org/new-upcom … l-therapy/

Dr. Steven A. Rosenberg, National Cancer Institute and Dr. Eric Tran, National Institutes of Health facilitated an online conversation about NIH clinical trial NCT01174121 using adoptive cell therapy, a technique that harnesses a person’s own immune system to battle cancer.  They outlined the background, objectives and frequently asked questions about the trial and explained how scientists at the NIH were able to grow billions of immune cells that were infused back into patients to melt away tumors.  There was also discussion about how this therapy could apply to a wide range of cancers.
Included was the perspective of our Melinda Bachini, Moderator and volunteer advocate for the Cholangiocarcinoma Foundation,  who shared her journey as a  patient and participant in this ground-breaking clinical trial as well as a Q&A session.
If you have questions for any of the presenters, please post them on the Cholangiocarcinoma Foundation Discussion Board in the “Clinical Trials” section where this posting has been duplicated,  and I will see that they are directed to the right person.
Hugs
Marion

Agree with Melinda...love your sense of humor and now have a better understanding of boy's talk in the back of the school bus.   
Hugs,
Marion

10

(12 replies, posted in General Discussion)

Erin....perhaps you can try to get in touch with the physician.  Although you have an appointment set for February,  he may want to see your mother in-law again or, he may suggest something else.  Either way, I believe that he should be notified either, by you or by the palliative care physician.  Doctors handle the procedures but unless informed otherwise, they expect everything to be in order.  Please stay in touch.
Hugs,
Marion

11

(12 replies, posted in General Discussion)

erine.....welcome to our site.   I understand your concern in regards to the lack of symptom relief.  Perhaps you should speak with her primary care physician and request a referral to a gastroenterologist.  Another good way to measure the success of biliary drainage is to compare the original count to the present count.  A blood test is required.  I agree, you need clarification as to why your mother in-law shows no signs of improvements.  Hoping for others to chime in on this as well.  Please share with us any further developments.
Again, thanks for joining in.  We are glad that you have found us.
Hugs,
Marion

Thank you, dear Barbara and dear Rob.  It was a beautiful event I wish to have attended as well.  Thank you for not only advocating on behalf of the Cholangiocarcinoma Foundation, but for all you do on behalf of the patients and caregivers touched by this disease. 
A special thought for Jacques and Becki, as they are the reasons behind this all.  They will never be forgotten.
Hugs and love,
Marion

Double and triple checked - clinical trial  Keytruda is closed to biliary cancer patients.  We now have to await the data report.   Hoping and wishing that the patient response was overwhelmingly positive and that a phase II/III can begin as well.
Hugs,
Marion

Genevieve.....love this topic.  Thanks for making it grow.
Hugs,
Marion

Genevieve......kudos to the aggressive surgeon, a strong patient and wonderful, supportive wife.
Fantastic news.  Hernias are nearly unavoidable in fact, we could have a second website focusing only on residual hernia patients.  But, in many instances, at one point, a surgery will correct this problem as well.
Hugs,
Marion

Vicky......excited right along you.  I want to believe that you are a good judge of your body...you feel good...good news is to come your way.
Hugs,
Marion

Become a member of the ACT Network, receive advocacy tools and make a difference on the State and Federal level. 
Take a look and sign up and have your voice be heard:
http://www.asco.org/advocacy/advocacy-tools

Thanks much, Heidi and Karen, for attending this important conference. http://pallonc.org/
Hugs,
Marion

That is so funny.  My computer intelligence is virtually non-existent.  In fact, a very good friend explained that he would prefer to swim in an icy lake then help me understand the basics of PC applications.   He speaks from experience based on my frantic late night calls asking for help.  Anyway, Lainy thinks of me as a "computer" genius and you think I am awesome.  Love it.
Hugs
Marion

Randi....have you tried: hold down "ctrl" and hit +?

21

(12 replies, posted in General Discussion)

Lorna....where is your oncologist?  With Sloan Kettering?

Michellle....I would like to follow the others and welcome you to our site.  In addition to the wonderful advice you have received and will continue to receive from our members, you may also want to take a look at our home page.  Here are some links :
For the newly diagnosed:
http://cholangiocarcinoma.org/the-disea … diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/

As the others have mentioned please don't hesitate from reaching out to us.  We are in this together.
Hugs,
Marion

23

(12 replies, posted in General Discussion)

Lorna.......hmmmm, not sure I like the explanation if indeed the tumor burden has increased as mentioned.  Take a look:
http://chemocare.com/chemotherapy/what- … EbMxE10xjo
Hugs,
Marion

You are so very welcome.
Hugs,
Marion

Until others have a chance to respond to your question I thought to pull up some previous discussions pertaining to Irinotecan.
http://www.cholangiocarcinoma.org/punbb … d=91383178
Hang in there, a tidal wave of good wishes are heading your way. 
Hugs,
Marion