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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.

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.

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

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.