Billy....Dr. Juan Valle presented on this trial at the 2017 Annual Conference
http://cholangiocarcinoma.org/misc/2017 … ery/page/2

Day 1, 4th presentation


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Marion

Thanks, Gavin.

Note: It's effective in liver tumors with low  concentration of blood vessels, used for palliation only, non-curative in nature.

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Marion

Gavin....perfect. 

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Marion

momof3.....that's fantastic news.  Few chemo drugs cross the blood brain barrier and I am happily surprised to hear of your husband's response to gem/cis. 


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Marion

5

(3 replies, posted in General Discussion)

momof3....I am excited for your kids.  This is a fantastic organization.

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Marion

This webinar is free to everyone.     Thursday, May 18, 2017,

Please use this link to sing in:
https://cbiit.webex.com/mw3000/mywebex/ … TEJJeA2%26

NCORP designs and conducts cancer prevention, control, screening, and post-treatment surveillance trials; conducts cancer care delivery research, including comparative effectiveness research; and integrates disparities research questions into clinical trials and cancer care delivery research.

There may be a clinical trial in a community setting.


https://ncorp.cancer.gov

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Marion

Hi, dear Gavin,

Subcategory:
Translational Research
Category:
Cancers of the Pancreas, Small Bowel, and Hepatobiliary Tract
Meeting:
2017 Gastrointestinal Cancers Symposium

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Marion

9

(4 replies, posted in Introductions!)

Lou.....I hope for many others to chime in on this conversation.  All of us can relate in one way or another.

I have learned that liver disease of any kind causes nausea and fatigue, hence not necessarily are your wife's symptoms  related to non-response to treatment. 

I will forward your posting to Karen, oncology nurse, for review of the medications taken for nausea. 

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Marion

Mary...agree.  Although we see a tremendous increase in research for our cancer much is still left to discover.  Physicians make choices based on their personal experience as well as of studies of related diseases.
All research studies are statistically averaged out, hence there always are patients fairing extremely well.  They way I look at it,  someone always is on top of the scale, anyone of us can be that person.


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Marion

NCCIH studies health interventions widely used by the American public, often with little evidence of efficacy and inadequate understanding of potential safety concerns. Their goal is to is to produce high-quality rigorous evidence to support the development of clinical practice guidelines,

Studies will focus on natural products and body intervention studies.

Read more: https://nccih.nih.gov/research/blog/clinical-trial-FOAs

You may access the presentations of the entire conference. 

Presentations are excellent and highly informative.

http://cholangiocarcinoma.org/2017-annu … ce-videos/

Perhaps we can engage in conversations pertaining to any subject.  I look forward to hearing from you.


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Marion

Brigitte.....good luck tomorrow.  Tons of good wishes are heading your way. 

I am quite familiar with the  study mentioned by Mary ( SWOG  S0809 ) as it was approved during the time I served on the NCI Task Force for Hepatobiliary Cancer.  It included extraheptic and gallbladder patients only. I believe you have intrahepatic disease, correct?

At this time we don't know how  qualified intrahepatic patients would fair with the same treatment protocol.

Tons of good wishes are heading your way for Monday's scan to reveal stable disease.

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Marion

Current ongoing clinical trials may very well show that patients harboring T-cells and the PD-1 pathway and are treated with when antiPD-L! antibody may fair well. 

Read more: http://meetinglibrary.asco.org/content/177054-195


Marion

This is a retrospective study.  Data combined from 10 institutions shows blood transfusion following surgery is associated with decreased recurrence free survival ( RFS ) and overall survival  (OS) after resection for distal cholangiocarcinoma,

http://meetinglibrary.asco.org/content/176818-195

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Marion

This is the first retrospective study describing survival rates in hilar cholangiocarcinoma with various disease presentations. 

The data is collected from 2000 to 20015.  Although, there may be disease recurrence at one point,  today's treatment options are much more advanced than those of 2015. 



http://meetinglibrary.asco.org/content/176835-195

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Marion

Don't beat yourself up - you did absolutely nothing to have this cancer.

The latest findings should help to reasssure people being treated for many forms of cancer that they likely couldn’t have prevented their illness. They also serve as an important reminder that, in addition to working on better strategies for prevention, cancer researchers must continue to pursue innovative technologies for early detection and treatment.

Take a look: https://directorsblog.nih.gov/2017/04/0 … #more-8082


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Marion

18

(8 replies, posted in Pain Management)

Fay....that makes sense.  I am just thrilled to hear your Mom is having a good response to the long acting drug and use of the short acting for breakthrough. 
Finally, she is having some relief.

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Marion

Julian....welcome to our site.  I am sorry to hear of your sister in-laws diagnosis. 
I hope for others to come forward and share their experience regarding FGFR fusion  as well as immunotherapy trials.
In the meantime you may want to take a look at our extensive clinical trials site.
http://www.cholangiocarcinoma.org/punbb … .php?id=14

I am aware of the International Clinical Trials Registry Platform
http://www.who.int/ictrp/search/en/

which lists the Chinese - Chinese Clinical Trial Registry (ChiCTR)

I hope this helped a bit, dear Julian.

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Marion

20

(101 replies, posted in Introductions!)

Joe .....I am so very sorry to hear of the turn of events. 

This Easter day will be unlike any others as you are together to cherish your togetherness.  This is a very precious time, which forever will be embedded in your mind and soul. 

Please understand that it’s only human to  tell yourself if only you had done something differently, this never would have happened.
We take on the responsibility of protecting our parents from illness and death and feel like failures when it turns out otherwise and it’s only human to  tell ourselves if only we had done something differently, this never would have happened. 
The reality, dear Joe, is that we have little control over the lives of those we love. You left no stone unturned to help guide your Mom's illness,  yourMom raised a devoted and beautiful son, she must be so very proud of you.

Tons of hugs,

Marion

21

(3 replies, posted in Members' Cafe)

Of course,  it will work and I too love the idea.
Would you like to contact our Development Director, Kathi?  I am sure you met her at the conference. 
kathi.wagner@cholangiocarcinoma.org

Gladly I will do it for you, Pat, but she will have questions, which only you will be able to answer.

Such a fantastic idea, I am so excited and love the title.

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Marion

Julie....Perhaps our Karen (oncology nurse) has some suggestions.  I will reach out to her.

Hang in there

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Marion

Vtkb........thanks for looking at it more closely.  It really is all about the intricacies of the data.  Let's see if I can find out more details.
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Marion

Lainy, Gavin...do you remember the posting regarding allergies to adhesives?  I know it's been talked about on this board?  My mind is blanking out on it.

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Marion

25

(6 replies, posted in General Discussion)

Also, we would love to have volunteers attend some conferences on behalf of the foundation. Depending on the venue prior training may  range from minimal to extensive. We offer that and welcome everyone with open arms.

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Marion