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- This topic has 23 replies, 9 voices, and was last updated 12 years, 2 months ago by willow.
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October 16, 2012 at 12:06 am #65656willowSpectator
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!!
October 15, 2012 at 5:48 pm #65655jathy1125SpectatorWillow-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-CathyOctober 14, 2012 at 4:48 pm #65654willowSpectatorThank 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?October 14, 2012 at 1:44 pm #65653jathy1125SpectatorWillow-Welcome and sorry you had to find us. I am a CC survivor due to 2 liver transplants!!! Please read my story at http://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-CathyOctober 13, 2012 at 8:42 pm #65652willowSpectatorNotdoneyet, 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.
October 13, 2012 at 8:06 pm #65651notdoneyetSpectatorThank 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!
October 13, 2012 at 7:45 pm #65650gavinModeratorThanks for that link Percy. I added it into my bookmarks, stolen you might say!
October 13, 2012 at 7:42 pm #65649gavinModeratorHi 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
October 13, 2012 at 5:41 pm #65648willowSpectatorThanks, 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.October 13, 2012 at 5:04 pm #65647lainySpectatorVery 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.
October 13, 2012 at 4:50 pm #65646pcl1029MemberHi,
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.
October 13, 2012 at 4:42 pm #65645lainySpectatorPercy, 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.
October 13, 2012 at 4:38 pm #65644pcl1029MemberHi,
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.October 13, 2012 at 4:15 pm #65643lainySpectatornotdoneyet, 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!October 13, 2012 at 4:13 pm #65642pamelaSpectatorDear 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.
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