Topic: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

On Wednesday Percy, Kim, and I will be attending a one day symposium on multidisciplinary treatment of bile duct cancer. 
http://www.ahpba.org/assets/documents/2 … ochure.pdf

To say that we are excited is an understatement.  Finally, we are able to participate in an event solely dedicated to our disease and that of gallbladder cancer.

Taken from the AHPB website:

The focus of this consensus conference is the multidisciplinary management of patients with bile duct cancers. The aim of this conference is to review the current indications for surgical treatment, non-surgical interventions, and adjuvant therapy for bile duct cancer. This topic has not previously been discussed in a consensus conference format, and therefore, there is likely to be a high education yield for participants. The format will divide the conference into three sessions, individually focusing on Intrahepatic Cholangiocarcinoma, Extrahepatic Cholangiocarcinoma, and Gallbladder Cancer. The program features an expert multispecialty international group of speakers, panelists, and moderators with extensive experience in the diagnosis, staging, treatment, and research related to the state-of-the-art treatment of patients with bile duct malignancy. The goal of this meeting is to provide a forum to review, discuss, and establish current practice guidelines and consensus statements. At the conclusion of the conference, attendees should leave with a higher level of understanding and competence in the diagnosis and management of these disorders.

The following day we will be joined by Jason and his wife Andrea and Sara (Willow) in order to attend and to exhibit our material at the 2014 GI Cancers Symposium. 
http://gicasym.org/
The disease of Cholangiocarcinoma is not given quite the attention it has received in the past years, but that may very well be due to the fact that one day prior the AHPBA conference is so focused on our cancer. 
But, quite frankly, we take anything we can get and are grateful to the sessions focused on bile duct cancer.
We will make sure to report back to you and hopefully attach a picture or two as well.
Personally I am thrilled to not have to travel very far - 45 minutes on a good traffic day in my very own car. 
If your ears are ringing then it might very well be due to the fact that this year's crew is talking about you all and is sending tons of love 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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

Marion good luck at the conference and I hope it turns out very successfully we will await some good news. Don't forget to take some time to breathe and also say hello to our other members. That is great that Jason and Sara are going how exciting for you all to meet. Wishing you safe travel even by car!

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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

So grateful for you to be attending Wed. That's wonderful that there will be a session specifically addressing cholangiocarcinoma! I am so looking forward to joining you Thurs and Friday!

Willow

Re: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

Looking forward to hearing all about it.  I know you will do a good job representing our cause.  And the best part is that you will be meeting with other members of the "family".   Safe travels to all.

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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

I am going to have to look ahead at some of these conferences. I would love to go and San Fran is not that far away although I would travel further. I suspect our wonderful oncologist is going to be there since we won't get to see him this Friday. He said he was going to be in San Francisco. It you see Dr Picozzi, tell him Hi!
Have a good time and bring back lots of info for us.

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.

6 (edited by marions Tue, 14 Jan 2014 10:17:13)

Re: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

Kris...that is fantastic.  I never refuse an offer for conference attendance.  Our calendar shows all upcoming events:
http://www.cholangiocarcinoma.org/events.htm

I believe that I will need help for the Society of Interventional Radiology Conference - San Diego.

Thanks for offering your services to us.
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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

I hope the conference is a big success. And I hope you have a chance to enjoy some time in San Francisco. It's such a great city.

Carl

Re: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

One of our goals (supported by a great portion of the medical community) is for the disease of Cholangiocarcinoma to be separated in two distinct diseases.  I applaud the above conference stakeholders for taking this initial step by addressing intrahepatic vs. extrahepatic within this particular symposium and I hope for this trend to continue. 
Additionally Biliary Tract Disease includes gall bladder which we know is not related to CC on a molecular level - it just happens to be in the same vicinity of the body.
Ideally we would like to see separate clinical trials conducted on intrahepatic CC vs. extrahepatic disease. This however presents a problem with accrual for clinical trials, as the low patient base in the US simply won't accommodate such trials.  And, that is the reason for the success of the ABC trial conducted in the UK as Dr. Valle and his team were able to conduct this trial with the participation of other European countries.   
Ultimately we could achieve adequate accrual however; it would be based on a multinational trial which in itself is difficult to accommodate. Individual Government regulations hamper the cooperation of a multination trial and drug companies encounter difficulties with delivering the drugs to some; protocols cannot be adhered to for other reasons as well.
Rare diseases such as ours continue to encounter the same difficulties - we can't accrue due to lack of patient participation.  Cholangiocarcinoma has not borders - clinical research does though.
The Cholangiocarcinoma Foundation is vigilant and continues to increase the outreach to the global patient and research community in order to bring about the changes needed.  And, from what I have witnessed, the research community is supporting us in this endeavor.
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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

Hope that the conference goes well and that you learn much from it. Looking forward to hearing about and hopefully seeing some pics of you all too! Have a great time and my thanks to you all for attending this.

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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

Marion -
I will look into it but I guess I should qualify that by saying I probably won't make any decisions until after the 31st when we have the CT scan, Chest x-ray and labs to find out if Mark needs any further treatment. But without a doubt though I will be looking at attending.
The nice thing is I need CEU's for my nursing license and I can use any conferences usually as credits and then it's a write-off too. Triple bonus really.

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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

No pressure here, dear Kris.  If it works out then that is fabulous - if not - then we can try for another time.
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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

Thank you all for going and representing us. Can't wait to read the feedback.
Hugs
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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

Marion -
I didn't feel any pressure about it. I did look ahead at the calender and I see a couple that I would really look at once this part of the coaster is done for us. I think my head is going to explode right now.
My husband is part of the Long-Term Follow-up Study for Childhood cancer and has been since 1976-77 when he had his Hodgkin's. I finally remembered to call them about the second malignancy and they are all over it. I am in the process of getting medical records for them...Their doctor....Dr Greene called and was very interested because it's such a rare cancer and he did not think they had seen that in their study yet.
Phew....opened a can of worms there.
But I think there was one later in the year about Palliative Oncology and another Palliative conference that would interest me a lot and then a couple others.

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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

Sure, Kris.  Interesting about the Hodgkin's as my daughter just recently completed treatment for Hodgkin's Lymphoma as well. She was diagnosed last year and we are hoping that she is one of those lucky to not have a recurrence.
I will keep you in mind for anything dealing with palliative care.
Thanks for all the help that on the discussion board and that behind the scene.
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: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

Excited to see that you were going to the conference.  I saw where Dr. Aloia was leading this part of the conference.  He is the one that surgically placed the spacer in my husband Mark.  Then I saw today where the January 2014 edition of OncoLog talked extensively about the treatments for hepatobiliary cancer treatments.  One of the things that were mentioned was the IMRT after spacer implantation.  I know it must have given you a great deal of good info being there in person.

Re: Conference Wednesday, January 15, 2014 and GI ASCO, San Francisco

hisprazr.....I agree, the attention to our disease has dramatically increased within the last few years.  Much is discovered and numerous treatment options are implemented at present.  But, we need to see more (much more) beginning with understanding this disease on a molecular level, early detection, and life saving treatment options for all.  BTW:  Yes, I did see Dr. Aloia and many others focusing on this cancer.
So nice for you to share your thoughts on this.
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