1 (edited by marions Sun, 22 Jan 2012 18:32:50)

Topic: GI ASCO 2012, San Francisco

The purpose of the  Gastrointestinal (GI) Cancer Symposium is to bring together multiple disciples including The American Gastroenterological Association (AGA) Institute, http://www.gastro.org/, The Society of Surgical Oncology, http://www.surgonc.org/, The  American Society of Clinical Oncology, http://www.asco.org/, and The American Society for Radiation Oncology https://www.astro.org/.

The GI ASCO multidiscipline disciples gather in order to solve problems or redefine solutions and problems by drawing on the vast knowledge and experience offered by the experts of each specialty.    The three-day meeting presented the newest strategies in prevention, screening and the treatment of gastrointestinal cancers. In addition to the abstract presentations this symposium offers educational sessions for each type of GI cancer including the disease of most significance to us, the hepatobiliary tract cancer. 

I would like to extend my sincere gratitude to Tim and Lesley for volunteering their time and energy to our cause.  Without their selfless engagement representation at this conference would not have come about. Helping others in need is such an important part of the American way. It grants us the opportunity to change lives, including our own.  Amongst other benefits it can also provide us with a coping mechanism against trauma experienced or the frustration encountered when touched by this cancer.   Thank you, Tim and Lesley.

This is Lesley’s second engagement.  For those who don’t know, Lesley is a two year survivor of CC.  This conference provides her with the unique opportunity to engage in conversations, based on her own experience, with physicians and researchers alike. 

Tim, who lost his dear Mom to this disease a few years ago, has vast experience in the area of research and made good use of it by identifying lectures and poster board presentation relevant to the disease of Cholangiocarcinoma. Tim will post his personal commentary on the discussion board, including the abstracts within the next few days. 

Your donations to the The Cholangiocarcinoma Foundation have allowed us to contribute to research studies of the disease of Cholanngiocarcinoma via The Conquer Cancer Foundation, a branch of the ASCO organization. 
http://www.conquercancerfoundation.org/ … tor+Award. 

One of the two young investigator grants had been awarded to Dr. Flavio G. Rocha, who evaluated the significance of occurrence of CEACAM6 expression in biliary tract carcinoma. 

Tim will include this particular presentation in his upcoming posting.  Dr. Rochas study in its entirety will be posted on this board at a later time. 

As one of two advocates bringing the patient perspective to the development of Phase II/III in the NCI sponsored North American Hepatobiliary Task Force, my attendance
also was required at one of the two annual Face to Face meeting. Although we participate in a monthly phone conference nothing equals the special touch of interacting person to person. 
For those of you participating in a clinical trial there is a possibility that my input in the development of this trial allowed me to bring your voice to the discussion.   

Hugs to all,

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: GI ASCO 2012, San Francisco

Marion, sounds like a successful meeting and once again many thanks for representing all of us and CC. And a big thank you to Lesley and Tim. We couldnot ever do what we do if not for all of your dedication!

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: GI ASCO 2012, San Francisco

Hi Marion,

My thanks to you, Tim and Lesley for attending this symposium and also for all of the work that would go along with it as well. All of your efforts are so very much appreciated. It sounds like it all went very well and I hope that lots will come from it. Plus I am looking forward to reading more about it all.

Hugs to you all,

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: GI ASCO 2012, San Francisco

Right back at you, Gavin and Lainy.   Thank you for all you do.
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: GI ASCO 2012, San Francisco

Marion, thanks so very much for the update!!  I look forward to reading more!

Best wishes!

Susie

Re: GI ASCO 2012, San Francisco

Susie...it will be posted real soon.
Take care and best wishes,
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: GI ASCO 2012, San Francisco

Marion,

Just getting to some of the posts surrounding the conference.

All I can say is...you are awesome.

Carl

Re: GI ASCO 2012, San Francisco

Will be looking forward to seeing what Dr Rocha has to say. He was Mark's surgeon for his resection. He is a great surgeon and a wonderful man too. SO glad we were able to have him.
Can't wait to be able to go to some of these conferences when life settles down.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: GI ASCO 2012, San Francisco

I am working on the report, Kris.  Dr. Rocha and I meet up at numerous conferences and we did so this time as well.  I told him that he was mentioned on our site and he was rather surprised to hear that.  Happy surprised that is.
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: GI ASCO 2012, San Francisco

Percy, Kim and I attended the AHPBA conference, one day prior to GI ASCO.

Presentations focused on intrahepatic disease with special emphasis on surgical resection (graphic videos) and current updates of treatment protocols.
In contrast to US physicians, surgical resections in other countries vary greatly in their approaches. Some procedures put the patient at high risk in particular with those surgeries replacing delicate portions of the pulmonary artery invaded by cancer cells.  Japan, China, South America and Europe (to some extent) do not have to comply with the rigid regulations placed on US physicians. 

“Lunch at the movies” included the presentation of numerous, delicate liver resections.

Andrea, Jason, Sara (willow) Percy and I met up the following day for GI ASCO.  As mentioned previously little was geared to our cancer other than what Jason and Percy have reported on, but I attended a few poster session.

Analysis of the genomic profile of biphenotypic tumors compared to cholangiocarcinoma and hepatocellular carcinoma.
Poster session included a study on combined HCC/Cholangiocarcinoma.  These  tumors represent a minority of primary liver cancers.  Genetic information for HCC and Cholangiocarcinoma exist, but little is known of the combined version.  The purpose of this poster was to demonstrate the results of a targeted next-generation sequencing in regards to the genomic differences of these tumors. 

Breakdown of study:
15 patients with combined HCC/CC
7 patients with HCC
6 patients with CC

Variability in immune infiltrates and HLA expression in cholangiocarcinoma.

The study concluded that the combined HCC/CC patients expressed genetically complex tumor expressions shared with the individual features of HCC and of CC but that the specific CTNBB1 was isolated exclusively in Hepatocellular cancer. 

Another  retrospective study of 18 patients  was aimed on understanding whether patients develop an immune response against their own tumors.  All patients were resected and  showed  Tumor-infiltrating lymphocytes (white blood cells that have migrated into a tumor.)  The authors suggest that this reflects a patient’s immune response to his/her tumor  and their findings provide sound rationale for immunotherapy in the treatment of cholangiocarcinoma.   

Effects of the sequential administration of GEMOX followed by FOLFIRI in cholangiocarcinoma.

This study also was retrospective of 35 patients who had been treated with second line systemic therapy consisting of GEMOX and then followed by FOLFORI.  Their first line treatment consisted of Gem/Cis. 
This sequential treatment protocol proved to be beneficial with overall survival of 1 year.   

We must remember that these are relatively small studies warranting large scale studies to prove validity.

Chemoradiation for locally advanced perihilar cholangiocarcinoma.

This study included 52 patients from a single institution – 13 patients were treated with chemo-concurrent radiotherapy  and underwent resection.  Chemo consisted of gemcitabine or 5-FU.  These group of patients showed a significant survival advantage compared to the patients who underwent chemo and radiation alone. 
The study concluded that above mentioned treatment should be investigated in large scale studies.  A notable value of CA 19-9 after completion of 1 months treatment seemed to indicate a predictive maker of survival.
Further studies regarding the optimal chemotherapy regime and schedule of radiation are warranted. 

I attended a closed door session focused on concluded clinical trials in adjuvant setting. The data is expected to be released toward the end of the year.  Based on the outcome of these clinical trials subsequent research will conducted within the near future.  I believe that many of us would like to know whether adjuvant treatments truly are effective.

I am happy to announce that Sara (Willow) has accepted to take on my position within the NCI sponsored North American Hepatobiliary Task Force.  I have served two terms and believe that Sara is a perfect fit for this position as she has a degree in biology and a good understanding of the concept of clinical trials.  The physicians within the Task Force as those from the NCI were quite concerned with my stepping away, as it would leave no one representating the Cholangiocarcinoma patient community.  We will keep you posted on the developments and hopefully will be able to announce her appointment to the Task Force real soon.
Jason has shown great interest in research advocacy and you will receive numerous updates from him within the near future.  Already we are spoiled by his excellent reporting skills and his ability to assimilate clinical information. 

Andrea, Jason’s wife, will work with the foundation behind the scene.  She fills an enormous void for us and we can’t wait to get her started and learn from her. 

As always it was a delight to see Percy.  Although we communicate via e-mail or phone calls, nothing beats spending time together as a group focused on our disease. 

Although, we did not bring back much conclusive information, we are invigorated by numerous, upcoming developments heading our way.

And, most of all, we had a wonderful time hugging and treasuring the time spent at this year’s GI ASCO 2014.

Hugs to all,
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: GI ASCO 2012, San Francisco

Marion,

Thanks for the update and all the information. It does seem that little by little we are making our cancer know.  Seems there have been so many changes and more hope as time moves on. 

Congrats and thank you to Sara for accepting the position with the NCI.  It sounds like she is a good fit.  Also to Jason and Andrea who have already done so much and are willing to do even more.

So glad you were all able to meet up and spend some time together.  Yes,  meeting in person and all the hugs, is a good feeling.  smile

And once again Marion, thank you so much for all you do for the foundation. 

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: GI ASCO 2012, San Francisco

Many many thanks for that Marion and of course to everyone who was there as well. Congrats as well and thanks to you to Sara for taking on the NCI position. I know that you will do a great job with that! Thanks as well to Andrea for taking on the behind the scenes role, it is much appreciated too!

Real glad that you all got to meet up and it sounds like it was a great conference as well. Tons of hugs for all no doubt so here's some more too!

My thanks and hugs to you all,

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: GI ASCO 2012, San Francisco

Sounds like it was a very hopeful conference and many thanks and congratulations to Sara, Jason and Andrea. Also many thanks to Marion and Percy! I don't see how we can ever miss with the team we have and of course with the support of all our members. We are a force to be reckoned with!

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: GI ASCO 2012, San Francisco

Thanks, everyone.  A few additional notes I picked up throughout speaking with physicians:

In regards to diagnostic:

MRI rules out other diseases
MRCP - aids in the diagnoses
CT - clarifies vascular and distant metastases

Most of all though, much of the evaluation and consequent finding is center dependent.  Some prefer one over the other method simply due to the fact that a particular physician(s) is better qualified to interpret the scan results. 

In regards to biopsies:

Brushings account for no more than 20% of accuracy

Percutaneous Transluminal biopsy is a reliable technique for examining a variety of biliary tract lesions.  We might see less invasive biopsy procedures.

Resection:
The overall consensus appears to include the removal of 5 nodes while resecting.

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: GI ASCO 2012, San Francisco

I noticed that I placed my posting for 2012 rather than for 2014.  Yikes.  Hoping for Rick to be able to correct it.

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