August 25, 2014 at 8:42 pm #81888
Duke, I just want to say that your post to Olga was indeed brilliant as well as full of compassion! No wonder we all love you!August 25, 2014 at 7:28 pm #81887dukenukemMember
Remember, there are two studies looking for info, both supported by the CCA Foundation.
1. International Hepatobiliary Neoplasia Biorepository is the one collecting samples and cannot be viewed by participants. The Mayo Clinic sends out a paper form to complete and requests blood and tissue samples. (Chances are that if you had tissue samples taken, there may be additional material stored at the hospital. This was true in my case. I sent a consent form for them to send material to Mayo.) This is the one that that has had one webinar (accessible from the link). To access the forms and webinar go the the Home page and click on the light bulb on the bottom.
2. International Cholangiocarcinoma Patient Registry forms are accessed from the Home page by clicking on the branch with leaves. The forms are completed online. Information can only be viewed by participants. No analyses or summary reports have been issued as yet, only the raw information.
Much of the requested information is the same so it is confusing which one is being referred to. In my mind I separate them as the Mayo Clinic study and the Patient Registry.
Marion – there is no hereditary factor here. Patients are unrelated.
Cazgirl – I lived in Oswego six winters and remember Heid’s in Liverpool. Go there any time we get back Coney’s are great but not enough to offset the winters and stay.
So much for the prelude.
We won’t know the answers to your questions in this life. We have to have faith that there are answers There’s a million cliches I could write, but it all comes down to faith. Norbert’s, yours, your brother’s, his wife, family members, and friends. Mine wavers from time to time. I think, I’m not ready yet. There’s too much here to do and too much fun to have. Then I re-center and and focus on making whatever time I have left the best I can. It’s almost easier for patients than care-givers.
DukeAugust 25, 2014 at 3:34 pm #81886cazgirl71Member
Olga, and All!
I did not mean to cause confusion, or be insensitive either, as my family and I were where you and your family are, in March…we only had 16 days from beginning to end. Once you answer all those health questions, and submit the application for clinical research; you and your sister-in-law, if they choose to participate, will be contacted and at that time a release of information will be sent in order to obtain records.
It is so crucial that bile samples (to help establish diagnostic markers) and tissue be available for this research, and because this cancer is so deadly and quick, living participants are few, but can play a key role. Sadly, my husband is participating posthumously.
My prayers are especially with you & your family, at this time.
Cazgirl71August 25, 2014 at 4:55 am #81885marionsModerator
Olga…I believe you are talking about the Mayo Clinic Research Study:
I did not want to mention it at this time however; the fact that both your husband and his sister have been diagnosed with this disease is rather perplexing. One wonders: is there a genetic predisposition or is it by chance only?
Anyway, know that my heart is with you in this difficult time and please reach out to us for anything we may be able to provide.
MarionAugust 25, 2014 at 12:18 am #81884
How would I get my husband registered for the clinical research group? I did something here on this site where I answered a ton of questions. I don’t think that’s what you’re talking about because I didn’t submit any health records or specimens.August 24, 2014 at 4:09 pm #81883iowagirlMember
Olga, My heart goes out to you and your family. You’ve been through so much already and now your family has been hit again. My prayers are with you.
Julie T.August 24, 2014 at 3:36 pm #81882cazgirl71Member
As with everyone else, I too can’t believe you and your family are dealing with this terrible cancer times two family members. I lost my husband after only 16 days from diagnosis to his passing, earlier this year. He, too, was Stage IV upon diagnosis. He had no previous symptoms.
After his death, I decided that I had to know more about this silent killer and found the Cholangialcarcinoma Foundation and have gotten great support and some answers to some of my questions. I registered my husband for their clinical research group which is coordinated through the Mayo Clinic, and his case has been accepted for their research. This research would be best served with patients that are currently living, as tissue and bile samples would be freshly available.
Please pass this on to your brother, who, as you also, could get all of the records and diagnostic tests that the Foundation’s research group needs so badly, to try to eradicate this horrible cancer.
My Prayers Are With All of You!
Cazgirl71August 23, 2014 at 6:18 pm #81881gavinModerator
I am so very sorry to hear this news from you, words fail me at this time. I so wish that I had the answer to why such bad things happen to good people. I wish as well that I could say something that would help you all right now. Please know that you can always come here as much as you want to vent away and I hope that you do so when needed. And you know that we are here for you as well.
GavinAugust 23, 2014 at 5:31 pm #81880
Dearest Olga, I am so very sorry and for once I am at a loss for words. Why do bad things happen to good people? I wish we had an answer. I too hope your brother contacts us. My only suggestion is you might want to contact your clergy after Norbert is settled at home and have a chat with him/her and he might be able to give you some comfort and even some answers. I am sending you a ton of love and hugs and when you have a chance please let us know what is happening.August 23, 2014 at 5:07 pm #81879marionsModerator
Olga…words fail me. I am so sorry to hear of the newest developments – my heart goes out to everyone involved. I too question as to why such tragedy can touch your family in such a way. My wish for strength and hope wrapped in tons of love is heading your way.
MarionAugust 23, 2014 at 4:11 pm #81877darlaParticipant
Oh Dear Olga,
I can only imagine how hard this new news is for you and Norbert. It is just not fair to have two people so close to you dealing with this terrible disease. I too hope they will come aboard as although we can’t make it better, we can be here to help and support. Keeping posting and venting all you want & need to. We are all here for you. Keep us updated as you can. Thinking of all of you.
Love & Hugs,
DarlaAugust 23, 2014 at 1:22 pm #81878
How is this even possible???!!! Yesterday, I found out that my sister-in-law, my brother’s wife has cholangiocarcinoma stage IV. How can such a rare cancer hit the same same unrelated family members. I suspected that it was CC after visiting, Angeles in the hospital, when all they knew was cancer, but I was hopeful that it wasn’t. And last night, I got the news.
We are still in the hospital, and the last 2 days have been the toughest of my life. We made the decision for home hospice care after the oncologist explained that Norbert’s liver was enlarged due to the cancer and that most of what he is going through is most likely cancer related. His heart rhythms are irregular and the Dr’s decided to remove the monitors since there would be no treatment should anything happen to his heart. How ironic that we would be hoping for a quick and painless way to go with the heart when he spent most of his adult life concerned and taking care of his heart because his father passed of a massive heart attack. I can’t stop asking, “why is life so unfair?”. It was heartbreaking seeing them take off the monitors because it was reality setting in. A reality that I didn’t think I would have to face this soon. It’s just not fair.
I’m devastated for my brother and his wife. I want to tell them all I know. I’ve already told them about this website and hopefully they will be here reading and posting soon. I’m still waiting to wake up from this nightmare that just seems to be getting worse. How could God be so cruel?
I hope someday to understand what God wants me to learn from all this. For now, I can’t seem to get past, ” Why?”
I appreciate being able to vent here. Family and friends are remarkably supportive but it helps to vent here.
Thanks,August 21, 2014 at 4:38 am #81876
Oh. Olga I am so very sorry about another stroke. I hope the RV trip can take place but just in case is there anywhere you can RV it really close to home? I hope the hiccups leave quickly as they can just drain a person. Teddy had them for 3 solid months and nothing helped but Brioski. And it helped on the very first dose. So he used the rest of it if he had an upset stomach. Please let us know how Norbert is doing and if you will be RVing.August 21, 2014 at 4:11 am #81875
My sister found it and will bring the new stuff to the hospital tomorrow for me. Unfortunately, Norbert suffered another stroke over the weekend and has been in the hospital since Monday. We were supposed to leave on a 2 week RV trip on Saturday. The Dr. Is telling me that won’t happen. I don’t want to believe it won’t happen. Not yet.
One Day at a Time!!August 21, 2014 at 3:38 am #81874
Oh my gosh, Olga. Have you tried Walgreens and CVS? It is terrific and I don’t understand why they discontinued it. It is cheap enough and will not hurt him as we kept a bottle forever. Have not heard of the other one. I just googled it and I would feel safe ordering BRIOSKI from Amazon. One other idea would be to see if you have any Italian Markets in your city. It works where nothing else seems too. Best of luck.
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