1 (edited by marions Tue, 17 Jan 2012 14:00:49)

Topic: Important: we need your help

Unlike ASCO, The American Society of Clinical Onclology, http://chicago2012.asco.org/, and the World's Premier Oncology Meeting, GI ASCO, http://gicasym.org/ is disease specific to Gastrointestinal Malignancies.     

Tim Garlaneu, Lesley Morris, and I will attend on behalf of The Cholangiocarcinoma Foundation and all patients touched by this disease, nationally and internationally.

More information will come your way however, today I would like to ask a favor of you. 

Would you please be so kind and write why and how our site has benefitted you?

Your comments are important to us as it will be part of the I-pad presentation offered to physicians and researchers visiting our booth. 
In a special line please give permission to distribution of post.

I thank you in advance and please forgive me….I need it by “yesterday.”

Thanks and 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

2 (edited by Lainy Tue, 17 Jan 2012 15:11:40)

Re: Important: we need your help

My husband was Diagnosed with Cholangiocarcinoma August of 2005. In January of 2006, I found this site and have been addicted to it ever since. So many courageous, caring and loving people the world over helping each other to understand and cope with this monster, Cholangiocarcinoma. Because of this site I had the courage to make decisions and care for my husband for the next 5 years. I learned what to expect, I learned what questions to ask and I learned how to handle it all from the strength I garnered from this CC Family. Lainy Sardina
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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.

3 (edited by Gavin Tue, 17 Jan 2012 14:33:20)

Re: Important: we need your help

Hi Marion,

Many thanks for this and indeed for all of your efforts here, they are very much appreciated by everyone. And of course, my thanks also to Tim and Lesley for attending this conference with you and for helping run the booth.

Why and how has our site benefitted me? Quite simply for me without the site and all of the members here I would have been lost without everyone after hearing my dads diagnosis of inoperable CC. The information that I found here helped me and my dad so much, but perhaps more importantly was the support that I got from all of the members here helped me through this and continues to do so today. We have ordinary, everyday people here, patients, carers, loved ones, family members and friends, all touched by CC and coming here and helping everyone else in whatever way that they can. Someone reading something that I posted knows what I am going through on that day, and when I read a post by someone else I know what they are going through as well. In what ever way CC touches you, whether it be from a patients or a family members perspective, it is a tough and horrible journey to have to be on. But I am glad that we can all go through this with each other and that we have this site so that we can all go through it together. We will get there.

Thanks and big hugs to you Marion,

Gavin

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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: Important: we need your help

thanks Lainy and Gavin...I hope for others to join in also.  Forgot to mention something important:
would you mind editing your post?
Please give permission to allow for distribution of content of post.
Thanks.  I will edit my original posting above.

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: Important: we need your help

I too hope for many others to join in and share their thoughts as well Marion. I just edited my post, I hope thats what you were looking for. If not let me know and I will edit again.

Hugs,

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.

6 (edited by Pamela Tue, 17 Jan 2012 15:10:23)

Re: Important: we need your help

I did not know where to turn for support when my 25 year old daughter was diagnosed with Cholangiocarcinoma. I had never heard of this type of cancer and then read how rare it is on the internet. When I first found this site, I could only take it a little at a time. This cancer is so devastating and it seems like I was reading about someone dying every day. I slowly came around and found that there are some success stories as well as some of the most brave people I have ever known. This site helps me so much now. I can offer support, advice, and comfort to someone who is in my shoes. I also receive more support than I ever could imagine. It feels like I have a large extended family that knows exactly what I am going through. I feel so much gratitude and love for all the patients, caregivers, and loved ones that have been touched by this horrible disease. They will all be in my heart forever.

-Pamela Kunklier

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My beautiful daughter, Lauren Patrice, will live on in my heart forever.

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.

Re: Important: we need your help

Thank you, Pamela. 
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: Important: we need your help

When I first heard that I had Cholangiocarcinoma my first thought was - what the heck is that?  Then the doctor told me that it is very rare and mostly deadly, that the statistics are non-existent and the prognosis is very bad. So, being the technology addict that I am, I went to the internet and found so little about it and what little I found was so depressing. 

Then I found the cholangiocarcinoma site and things changed immediately.  I remember my first post. I thought that nobody would have gone thru what I was going thru but quickly realized that I was not alone. I was NOT ALONE.  That was so powerful.  The fact that people are so willing to share their experiences, their hopes, their dreams, their lives, and their support was humbling to me. I continue to rely on the support and love I feel from this site everyday.  I have been able to pay it forward by reaching out to others on this site as well.  I've made lifelong friends who I may never meet but who help me in ways that no one else can.

Thank goodness for this site.

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Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Important: we need your help

Thanks a bunch, Randi.
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: Important: we need your help

This website is probably the reason I'm able to be writing this post today.  I was diagnosed with CC in October of 2009.....as many have said the statistics are depressing to say the least...I had a first opinion from a very reputable cancer  center in NYC their prognosis was not very optimistic they deemed me inoperable....that is when I discovered this site and received a response from another member whos dear mother had been diagnosed with CC...I wrote my introduction explained my situation and my desire to get a second opinion...I received many responses of encouragement and then there was the one I received on Christmas Eve.  His name is Marc and he is now my angel...he urged me through e-mails to seek a second opinion with Dr. Myron Schwartz at Mt Sinai...that was 2 years ago.  I was able to have a resection and have had clean scans and bloodwork since.  To say the least this website is a God send..I think for me to have people who go through the same things I do is so comforting I know I will never be alone. This website is full of compassionate, courageous and I believe some pretty smart cookies!

Nancy
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Re: Important: we need your help

I was diagnosed with CC in July of this year.  Like others there is very little information about this deadly disease on the internet.  Doctor's don't recognize, the public doesn't know about it.  The "Unknown Killer" the "Assassin" is deadly, quiet and goes about it's business in the dark.  ( I've been reading to many terrorist novels  smile .)

The people on this board are friends, prayer partners, and confidants against the battle of our lives. We meet here for information and consulting to fight this battle together.

I know I have taken questions to my Oncologist that he has never had to answer before.  I challenge him with possible treatments, to make sure my care is the best possible.  God has his healing hand on me, and this website was placed before me as road map.

I certainly thank the persons responsible for creating this " CC Coffee House Meeting place " for the help it as given so many.

Grover

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Re: Important: we need your help

Thank you, Nancy and Grover...thank you all you wonderful people.  Please, keep this thread going as we will continuously update our I-pad presentation.  Your voices will be heard.
Hugs and love,
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: Important: we need your help

My forty year old husband was just diagnosed with CC in September. We were absolutely devastated.This site has been so helpful in providing resources, advice, support, and prayers. The people here know exactly what you are going through.There  aren't enough words to describe how horrible this disease is and what it does to your loved one.Thanks to this site and the wonderful people, no one has to suffer alone. Thank you, Tonya
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Re: Important: we need your help

I was diagnosed with cholangiocarcinoma in 2008.  I was terrified when I read the statistics about recurrence and survival rates.  The only thing that kept me from total panic were the people on this website.  In January 2009,  I had a liver resection.  Recovering from this surgery took many months and I felt isolated and lonely.  Participation on the patient discussion board helped me deal the emotional and physical task of recovery.  Becoming a member of the patient discussion board has also given me the opportunity to help others by sharing my experiences.  The Cholangiocarcinoma Foundation has been a tremendous source of information, inspiration and support.   

Betsy Kubbins

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Re: Important: we need your help

My beloved mother was recently diagnosed as metastatic intrahepatic cholangiocarcinoma (three months ago), i was really shocked and although i'm a physician i hadn't the courage to search the internet about this illness because of the discouraging words allover it but when i found that foundation it helped me much.Here, people are so cooperating they exchange their experiences, sufferings, treatments, side effects and how to manage. Really it is a very useful, updated and supportive site.

Fatema Al-Zahraa

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Re: Important: we need your help

I found this site a few days after my husband passed away from CC.  It all happened so quickly I didn't know much about it.  This site has help me to understand what & why this happened to him and the support I have gotten from all of the lovely people here has gotten me through  and given me the strength to go on and to be able to help, educate and support others whose lives have been affected by this relatively rare disease.

Darla Kondreck

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"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.

17 (edited by lisacraine Thu, 19 Jan 2012 20:11:36)

Re: Important: we need your help

This website and all the people involved are a blessing. When I was diagnosed I had never heard of Cholangiocarcinoma so I started searching the Internet for information. Most websites were confusing and alarming with such bleak survival rates. When I found this website I found peace, love and friendship. I found people like me searching for support and answers. Thank you to all those involved in making this website such a haven for people with cholangiocarcinoma.   Lisa

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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: Important: we need your help

Marion,

This website has been so helpful to me that if I write all the reasons it is helpful, it would easily take the entire time of the conference!

I feel it is so very important to have people who can relate to what you are going through.   When I was diagnosed I was on a mission to find out if there were others my age with this cancer (I am 32). Without this website, I would have been lost.  This is a place where you can be totally open and honest about anything you are experiencing. Through this website, I have received encouragement, advice, support and education, which I have found to be invaluable.  I have also made some wonderful friends along the way and appreciate being able to share my experiences with them.   

PS - My oncologist is going to be at this conference as well, Dr. Gina Vaccaro, from OHSU.  If you see her, tell her she's awesome!!

Thank you!

Susan Gaydosh

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Re: Important: we need your help

Thank you all you wonderful people.  I can't wait to show this to the physicians and researchers passing by our booth.  Well let me correct this.  It is impossible to pass by our booth without becoming involved in a conversation with us. And you will be heard.
Thanks again,
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: Important: we need your help

Susie....I will make sure to keep an eye out for Dr. Vaccaro.

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