Topic: Searching

Finally introducing myself as the sister of one diagnosed end of July with CC just two weeks before her 50th birthday. She has a young child and is naturally devastated at the thought of not being around to raise him. She is too afraid to even seek support on this site for fear of being exposed to really bad, tragic situations and scary information. Seems a natural coping mechanism. I, on the other hand cannot get enough information so we can arm ourselves with ideas and options, even for little things like managing side effects. I have noticed lots of new members who are relatively young and it makes me wonder what is causing this disease. Her symptom was pain mainly at night in upper right abdomen for 3 days. no jaundice. My sis has no known risk factors, lived a clean lifestyle and has enjoyed good health. She has intahepatic tumor with portal vein s d hepatic artery involvement but no lymph node involvement. Inoperable at moment but surgeon has not ruled out resection if tumor can shrink even a little away from blood vessel branch. She started Gem/Cis and has had to have the crazy expensive Neulasta (i think thats he name) shots due to low WBC counts since the first tx.  They also changed the chemo to every other week instead of weekly. She seems to be getting excellent care from at Stanford in Palo Alto, though this is not listed as one of your major cancer centers (??)
Several other newly diagnosed women who posted have spurred me to finally seek help and contribute any way I can since the stories are so similar.  Thanks for listening and I hope her story can help others not feel alone.  Willow

Willow

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Welcome to the site Willow and sorry you had reason to find it. 
I am sure others can answer some of your questions, but I wanted to make sure I said hello.

I was diagnosed with ECC December of 2009 and had a whipple and 6 months of adjuvant Chemo (Gemzar).  I have had some scares but I have been cancer free since my surgery. I just went to 6 month scans (before had scans every 3 months) and my next one is in December.

I hope for the best for your sister.

Take care,
-Randi-

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.

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Dear Willow,welcome to our remarkable family but sorry you had to find us. You are a HERO to step up for your Sister as knowledge is one of our most important tools for fighting CC. I too wonder all the time why so many younger people are getting this Cancer. My own thoughts are that it may be environmental and I have thoughts as well about the younger generation and its fondness for Sushi, since some raw fish has parasites called liver flukes and it is very common in Asia but how do we know some of this is not here?  For treatment we do recommend large Hospitals who have had more experience treating CC. We are also big believers in 2nd and 3rd opinions. I am sure it is very hard for some to accept their diagnosis and feel our Board may not be for them however, we do have Miracle stories as well. You have come to the right place and please keep us updated on your Sister as we truly care.

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.

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Thank you. I've wondered about the liver fluke/sushi connection myself. Do they test for that when you are diagnosed with CC and have no other risk factors? Maybe it's a moot point but you'd think they could reduce recurrences if so.
The hepatobilary surgeon has great experience and definitely wants to do everything possible to make it to resection. He said it technically could be done, but he preferred to do chemo first to kill potential seed cells on "good" side of liver and to shrink main tumor out of left side of blood vessel branch (it's mainly on right side). I feel my sister is so close to being operable if this chemo does the trick.

Willow

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Hi Willow,

I wanted to welcome you to this site. Sorry you had to find us. My daughter, Lauren is the one with CC. Hers is also intrahepatic. She will not come on this site either and doesn't want to hear the bad stuff, only the positive. That is her way of coping and I respect that. If she ever has a question, she knows I will answer truthfully. I read everything I can get my hands on, even if it is upsetting. I find the more I read what others go through makes me stronger and more prepared for what Lauren may have to face, although it is so heartbreaking at times. I wish everyone could get better and live wonderful lives. I think it is awesome that you are taking such an active role to help your sister. I wish you both all the best.

Love, -Pam

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.

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I truly appreciate your response. We do have lots in common. I've been following your posts and Lauren's story (saw your blog too and pics of your lovely family) lately but finally got the nerve to write. Now I know why you post instead of Lauren. I really can understand why she is afraid to join the discussion group/CC site yet there is so much in the way of support hope and great idea too. Yes, i feel like we have to be filters and only give info as it is asked of us. Thank you again, Pam

Willow

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Willow, you can Google "liver flukes" and read up on it, very interesting. It is a parasite found in certain fish in Asia and a lot of this fish contains this parasite. This fish (I forgot the name) is also not cooked properly which is another problem. My husband served in Korea and some others who have passed from our CC family served in Nam. This parasite adheres to the bile ducts and can live there 30 - 40 years undetected. Then it leaves and leaves behind CC. Because it cannot be detected we can't know if one has it.
It sounds like your Sister is in good hands with an aggressive ONC. This is good. Willow, listen to your gut as it will not steer you wrong. If at any time you feel you do want another opinion DOCS are not going to say no. Stanford is a great Hospital and they discovered Cyber Knife which my husband had when his CC returned. Sending out big prayers for the chemo to shrink that monster and make yhour Sister operable.

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.

8 (edited by marions Sat, 13 Oct 2012 03:28:50)

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Willow...I would like to follow Pam and Lainy and welcome you to our site.  Your sister is in good hands at Stanford - it is a NCI designated cancer center.  http://www.cancer.gov/researchandfundin … cercenters
We are in the process of identifying those centers actively involved in Cholangiocarcinoma research therefore; our list is incomplete and ever evolving. 
Having said that I  must admit that I still believe in obtaining second or more professional opinions from a center or physician treating a high volume of CC patients.  If anything it will confirm the diagnoses and treatment options in place already.
.
I so much understand her reluctance of coming to this site.  My husband (lawyer and psychologist) had difficulties also - it frightened him. Therefore, like you and Pam and so many others I came here to learn and to understand and to share my thoughts.  It helped me and that in turn helped him.   Mostly I appreciate the fact that this is an open and uncensored forum for all touched by this disease. 

Your sister has a wonderful sister in you. Your support is invaluable to her.   
Fingers are crossed for an awesome response to the current treatment.  Please stay in touch.  We are in this together.
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

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Dear Lainy,  I do not know how or where to post a new topic and I'm hoping you will help me.

I have been reading the prior posts regarding liver flukes.  We also brought this up to my sons Onc who said he was quite aware of them and this was not the case in my sons diagnosis.  He did brush the idea off.
Both of my sons have traveled extensively through Asia, Thailand, etc.  They have also spent a lot of time backpacking throughout South America.  They eat with and like the locals.  My 30 year old, health conscious, gym rat, anti drug son is so extensively covered in tumors chemo is our only option.  That's not what I'm writing about though.  It appears all our Western Doctors brush off liver flukes.  Is it possible on this site to start a page where people can say if they possibly could have been exposed?  And how.
Where would that information go after being compiled?  Also does anyone know how to test for this cancer before there are symptoms?  My youngest son lived in India for six months while studying and is even more adventure oriented then my oldest who has this horrid disease.  I am literarily in tears writing this with fear of losing both my children.

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Dear Willow,

You are so welcome and I hope to talk with you again.

Hi Notdoneyet,

I believe Percy did some investigating about liver flukes and said not to eat sushi in the US that comes from Vietnam. The weird thing about this is my oldest daughter and son both love sushi and eat it any chance they get, yet my daughter Lauren, who has CC would never dream of touching the stuff. Go figure.

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: Searching

notdoneyet, well, there is not a whole lot on liver flukes as it still remains somewhat of a mystery. You can do 2 things. Go to our search button at the top of the page and just type in liver flukes and see older posts that come up or Google liver flukes testing and I found a bunch of sites that can be read. Mostly, they talked about the flukes in animals. I still did not find how they test it in humans. But I do know that one of our brilliant family members here may know. Knowing how my husband ate and loved fish I would not be surprised if he did try this in Korea. Some wives have contacted the VA but to not much avail.   
To post under "proper" headings go to our Home Page and click on any desired topic such as Good News Whats Working. Then on the right it will say new posts and click that to get in to the proper site.
With all that said I cannot tell you how much my heart goes out to you to have so much going on in your world. As a Mother and Grandmother I understand. Weekends are slower on the Board but I know you are going to be getting some good answers here as you have come to the best place to be for CC, we just wish we didn't have to be here! Please, try to be very strong!

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.

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Hi,
I can only say this, the chance are very remote, that you should worry about the liver worms for your sons. It is a local eating habit in that area that takes decades of eating raw fish to develop CCA.  The CCA disease is more prevalence in the north of that country than the south part of that country .
Try to avoid inexpensive frozen fish from unknown place,skip raw fish preparations like sushi. Japan is also high on the list as well as all the south east Asia nation like Taiwan ,Hongkong, Thailand, Vietnam ,and China coast cities.
Here in the States, PSC is one of the risk factor that CCA is associated with.
In short, don't worry.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

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Percy, you are our hero! Thanks, I knew you would come through! I hope you are feeling good and perhaps enjoying your Fall colors? I love the desert but nothing changes much. Sand is sand. But we do have a lot of blooming Catus.

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.

14 (edited by PCL1029 Sat, 13 Oct 2012 09:54:22)

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Hi,
Thanks Lainy,
BTW, check out this link with regard to where in the world , which country has the highest stats and the lowest stats.
But as many of you know, stat is just statistics .

http://www.amepc.org/tgc/article/view/74/64

If the article is too much and too details for you, just scroll down a bit, and click at the map ,this  will give you an overall idea where is in the world the CCA comes from.


God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

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Very interesting, Percy, and very distressing that we are #3???  I have noticed that we get so many more CC patients from the East and West Coast than from mid America. I just wonder why. I do understand that at this point its just numbers but still very strange to me. I know you and I both believe in the fish and Sushi theory but who really knows. And you are right I have to admit I read just the first couple of articles.

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.

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Thanks, Percy. 
I did get much from that link that you sent.... though it really does open so many more questions about why the incidence is increasing even in western countries.  I wonder what causes Primary Scelrosing Cholangitis, ulcerative colitis and other predisposing conditions.  Seems chronic inflammation regardless of cause can lead to CCA. 
I am just beside myself with worry and grief that this has happened to my barely 50 year old sister, mother of a young child.  It's only been 2.5 months since she was diagnosed and she has a few more weeks of chemo treatments before we find out if she will qualify for resection. 
BTW: I found Dr Sonnenday's interview on liver transplant very helpful and hope that my sister will qualify for this relatively rare treatment if she is unresectable.  It's possible, since her tumor seems localized in the liver, though it's involving portal vein and a rightt branch of hepatic artery.

Willow

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Hi Willow,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your sister. But I'm glad that you have joined in with us all after reading the posts and stuff as you have come to the best place for support and help. And I know for sure that you will get tons of both from everyone here!

I came here after my dad was diagnosed and to be honest, it was the best thing that I could have done. You sound like me in that you want to know everything that you can about CC and to know what your sister is up against. Well I was like that too and wanted to know what my dad was up against. I can so understand your sisters reluctance and others as well in not wanting to know everything, that is just human nature I guess and we are all different are we not! No one way is right for all and we all do what we feel comfortable with. But for me, I felt that the better informed I was the better that I would be able to help my dad with everything and I think that you feel the same about helping your sister.

We are all here for you, we know what you are going through right now and how you feel.  Please keep coming back here and keep us updated on how your sister gets on. And if you have questions ask away and we'll do our best to help in answering them. We care.

My best wishes to you and your sister,

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.

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Thanks for that link Percy. I added it into my bookmarks, stolen you might say! smile

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.

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Thank you ALL so much!  Very informative and very much appreciated.  I feel I should stop just reading and researching in the "shadows" and contributing.  Everyone's contributions have helped me/my family so much possible we can help someone else.  Without this extrodinairy board I would have been lost!

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Notdoneyet,  I feel the same way.... afraid to share too much as I want to protect and respect my sisters privacy.  Meanwhile, I've found it extremely helpful to read and research on this site. The discussion boards are especially helpful emotionally AND practically. I am so sorry that you've had such a rough time.   

Gavin, Thank you for sharing your experience with your Dad.  It's helpful beyond measure to know that you understand the fear of "knowing too much" and comforting to hear that there is no right way or wrong way of dealing with such a daunting diagnosis.

Willow

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Willow-Welcome and sorry you had to find us. I am a CC survivor due to 2 liver transplants!!! Please read my story at www.catherinedunnagan.com under the telegraph link. I have an amazing story to share and there is HOPE.
I like your sister was only 52 and perfectly healthy. I remember when I first found this site and the more I got on it the more the more scared I was because it seemed to be more caretakers and people who had lost ones to the disease. My family and friends didn't want me to get on it. I was diagnosed on July 31, 2008 and in the last 4 years I really believe there is more CC survivors with positve stories and expierences posting.
I had many miracles in my story but my first was being put in Dr. William Chapman's care at Barnes-Jewish Hopsital in St. Louis MO. (Dr. Sonneday did his fellowship under him and call him his hero!)  I grew up in Sunnyvale CA. and no what good hands you are in at Standford, but I would start thinking about second opinions on transplant. I was Stage 4 inopreable because of location so transplant was my only option. Dr. Chapman is the kindest most caring man and amazing doctor and will take your phone call!! Dr. Chapman has at least 3 other transplant sucess stories that I have come in contact with. He believes transplant should be an option for CC.
Willow- there is HOPE, I am alive because of God,  2 strangers and Dr. William Chapman (that is how he would list it also). Please feel free to contact  me if you or your sister would like to talk.
Lots of prayers and HOPE-Cathy

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Thank you, Cathy. I did read your story a while back and am amazed! So happy you have had success at last though its been an unimaginably rough road for you. I will take your advice and gently suggest it once my sister gets her next scan and hears the TX plan . She is not eager to go elsewhere at the moment.
May I ask why you quote "2 strangers" saved you and who are they?

Willow

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Willow-I refer to them as "strangers" because when I recieved my gift of life they were. I am sad to say even though I reached out and sent both families a letter full of thanks and gratitude they still remain nameless. I am in the process of trying again because it is my birthday, anniversary and the start of holiday season, not only would I have none of those, this would always be a time of sadness for my family. Please CC family be organ donors (cancer doesn't stop us) because your gift keeps on giving and giving!! Everyday I thank God, 2 strangers and Dr. Chapman.
Willow-if your sister ever wants to talk please tell her to call. Remind your sister a second opinion is just that an opinion. I have always felt that it only validates what you already know or gives you more HOPE. Second opinions twice saved my mom's life!!
Lots of prayers and HOPE-Cathy

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Thank you, Cathy.  I feel a bit foolish forgetting that the "strangers" were your organ donors.  I forgot that you did not have two resections, you had transplants!!  They truly did give you the gift of life and everyone can feel your joy and gratitude.  Yes, I am definitely pro organ donation!!

Willow