need support
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Margaret,
Thanks for your encouraging words. I am so happy to hear that your husband is doing OK. I hope it continues!!!
Thanks to everyone who responded. I have a couple of numbers and leads and forwarded them all to my sister so that she can get the ball rolling on some support for her husband.
KatHi Kat:
Although I do not have CC, my husband Tom does and I have been at his side for every ERCP, resection surgery, tube exchanges, MRI’s, CTScans, etc. for the past 2 3/4 yrs. So I know a lot about CC and can speak first hand about procedures, etc and what my husband has gone through.
Don’t feel helpless because the first order of things is to educate yourself and your sister should also do so! How old is your brother in law? My Tom was 61 when he was diagnosed and is now 63 and will be 64 in Feb. 2011. With good medical care your brother in law does have a good chance of outliving any doctors prediction. Tom was given 6 months just about 13 months ago!
If your brother in law’s doctors are not familiar with CC then try to get him hooked up with doctors that are familiar with CC! 2nd and 3rd opinoins are sometimes a necessity! Never take ‘no’ for an answer, and ask what else can be done instead! Do your research, this forum and the web in general is a good place to start. Have your sister join this forum as well!
Good luck to your brother in law. We are in Green Bay, Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer
Margaret
Kat, I know we have some people in that area. Give this post a day or 2 and I am sure some people closer to you will pop up. If not you can e mail to any of us who show an e mail under our name. Then after the e mail you can exchange phone numbers. We also believe strongly in 2nd and 3rd opinions. You would collect all his data and test results and get them to another doctor for another opinion. Hang strong something or someone will pop up here I am sure.
Hi Kat,
Welcome to the site. Sorry you had to find us all but glad that you have joined us. I think it would do your sisters husband some good if he could indeed find someone to talk to that knows what he is going through and how he is feeling. And Lainy’s suggestion of speaking to Dr Giles here is good. He can be found here –
http://www.cholangiocarcinoma.org/ask.htm
And if you could get him to join us all here then I think that that would also be of benefit to him. As far as some face to face support in your area, I have no suggestions as I live in Scotland, but I am sure that someone will be able to offer some thoughts on this. My dad used to go to a cancer day care centre twice a week for about 5 hours each time and he absolutely loved it. He was a bit unsure at first about going so I took him up to see what it involved and what they did there, but the minute he walked in the door he was hooked on it! And I have nothing but good things to say about the positive impact that this centre had on my dad, perhaps there is a centre like this in your area? I realise that this sort of thing is not for everyone, but it worked wonders for my dad.
Best wishes,
Gavin
Hi Kat:
Welcome to the forum. There are a number of ways your brother in law can connect to other individuals in treatment. He can always post here and receive a wealth of support from others, or he can contact an organization like Imerman Angels which will put him in contact with another patient with the same disease.
Hi Lainy, Thanks for your quick response. He is diagnosed with Stage 1V CC. He was having back pain and they found 3 tumors in his liver, thinking they were benign they planned to operated. They then did another MRI and found something on his spine which was biopsied. This is how they came to the diagnosis. He is being treated in White Plains, NY. Do you have any suggestions about a local support group, or someoone who would call him to talk??
Thanks,
KatWelcome to our wonderful family, Kat and sad you had to find us. Wht is his diagnosis? Perhaps you could try our own wonderful Dr. Giles. You can find him at the top of the page or go to the search engine and put his name in. You can ask him anything and he may be able to help. Where is your brother-in-law being treated? Please keep us posted.
Hi, My sister’s husband was just diaganosed with stage1V cc. He started chemo on Monday doesn’t want to go back because he feels so sick. He needs someone to talk to who has gone through the same thing. He is stubborn and very down (of course!) and discounts any encouraging news on the basis that the person doesn’t have the same disease. Is there anyone out there who he can talk to???? We all feel so helpless and sad.
Kat
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