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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.

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

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.

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.

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!

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.

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.

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

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!

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

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