new with questions
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- This topic has 11 replies, 10 voices, and was last updated 14 years, 8 months ago by cinnamin.
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March 10, 2010 at 5:58 pm #36405cinnaminSpectator
Hello Bob, and welcome to the group. Your Dad’s story sounds similar to my Dad’s. He’s 78, was diagnosed a couple of months ago. You can read his still developing story under my name. I’m so sorry you and your family are going through this, and I’m glad you found this site. Everyone here is extremely helpful and supportive. My best advice is to learn, learn, learn and brace yourself for a fight! I have found it reassuring to have an idea of what’s around the corner. It’s made me a much better advocate for my Dad, and kept me strong for him. Feel free to ask any questions!!
SO happy the stents are working. My thoughts are with your Dad and you
Janet
March 10, 2010 at 11:32 am #36404scragotsMemberBob,
I live about 20 miles north of Indy! If you get a reference to IU Med, see if you can get in with Dr. Mary Maluccio. She was outstanding. Always helpful and always hopeful. No waiting on scan days, you always see her a couple hours after the scan and she reviews it with you. If you want her info, just let me know.
Glad your dad is feeling a little better. Going through CC was the toughest thing I have ever done, but having your family and friends around you (thanks CC.org!!!) REALLY makes a difference.
Hugs,
SueMarch 10, 2010 at 12:54 am #36403indianaboyMemberThanks everyone for the welcome. This looks like a great site with lots of good info. Dad is still waiting on the biopsy report. He said it could be as long as two weeks before he knows something. He’s feeling a bit better every day, appetite returning slowly.
The IU med center sounds like it could be a good bet for him. They live about 50 miles east of Indy, so it’s not a long drive.
Thanks again.
Bob
March 9, 2010 at 8:03 pm #36402scragotsMemberHi Bob,
Welcome to the site…sorry you need to be here. Yep, I have been treated in Indianapolis at the IU Med Center. It’s a fantastic med center and I was lucky to get the absolute right surgeon. I had surgery in 01/07 and I have been doing great since then. Like Kris said, you are more than welcome to search out my posts, or feel free to email me directly. We are all thinking of you and your family.
Hugs,
SueMarch 9, 2010 at 8:46 am #36401lalupesSpectatorHello, Bob – I cannot add anything to the others’ comments yet but I wanted to chip in & say hello & WELCOME to the family!!
March 9, 2010 at 1:38 am #36400mlepp0416SpectatorHi Bob:
Welcome to the site, my husband who is a vet received his original liver resection at the milwaukee VA medical center. He is currently undergoing treatment at the Vince Lombardi Cancer Center at BayCare Aurora hospital in Green Bay, Wisconsin.
Mayo Clinic does a lot with CC patients and Marshfield Clinic as well.
Prayers are with your dad and your family.
Return to this site often as you will find a lot of good information here.Go with God and tell your dad that prayers from Wisconsin are coming your way.
KEEP KICKIN’ THAT cancer.
Margaret (My Husband and Cholangiocarcinoma)
March 9, 2010 at 12:04 am #36399gavinModeratorHi Bob,
Welcome to the site. I can’t help you with anything regarding further opinions as to what doctors could look at your dad as I am in the UK, but I know that others will be able to chip in with recommendations. But I wanted to join the others in welcoming you here.
My dad was diagnosed in 2008 aged 64 with inoperable CC and he had a metal stent inserted and had PDT as his treatment. I am sure that others will come here with lots of suggestions of treatment facilities and doctors that will be able to help your dad. Keep coming back as you will get loads of support from us all, and there will be people here that can help you with any questions that you will have.
My best wishes to you and your dad,
Gavin
March 8, 2010 at 10:59 pm #36398lainySpectatorHello Bob and welcome to our wonderful family! I echo what the others have said but do you know where the bile duct the cancer is located. When you first hear the DX of CC it is a stunner but as you read and become more of an advocate for your father you will see that fight takes over for the fear. Please keep us posted.
March 8, 2010 at 10:14 pm #36397devoncatSpectatorHi Bob. Welcome to the site. Sue is from Indiana and is treated there and has been very happy with her treatment. Try the search function and search for Indiana and her posts should pop up.
Kris
March 8, 2010 at 10:04 pm #36396marionsModeratorHello Bob and welcome to our site. Perusing the opinion from several specialists I believe, is of most importance. Until others have a chance to respond you might want to take a look at the listing of major cancer centers, top of the page. The google search function may also lead you to previous discussions including, those from members residing in Indiana. In preparation for seeking other opinions you might want to make sure to receive copies of everything pertaining to your Dad’s disease including, blood tests, CT scans, doctor’s reports, etc. The requests may be signed by your Dad or, in order to make things easier, you might ask him to sign health care directives. Our Pam has listed some great information. Here are some links to help you along:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1749
http://www.cholangiocarcinoma.org/glossary-l.htm
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=8830
All my best wishes,
MarionMarch 8, 2010 at 9:48 pm #36395kathybMemberHi Bob,
There will be many people here who will respond and be very helpful. I’m rather new to the site myself, but feel most comfortable here. They are a wonderful group of people.
I am very thankful I am able to go to the Mayo Clinic in Rochester.
Kathy
March 8, 2010 at 9:32 pm #3288indianaboyMemberHi – I’m writing on behalf of my dad who has been recently diagnosed. Brief history – he’s 75 years old and had a blockage in his bile duct. The doctor performed a procedure on him to place a stent in the bile duct and he is recovering from that. The doctor told him last Friday that he saw a tumor in the bile duct, but did not elaborate on any details about it other than he suspected it was malignant. Biopsy results are not in yet, but I’m trying to get ahead of the game here a bit and find out where the best facilities are for treating bile duct cancer. He lives in the Indiana and would be willing to travel for good care.
Any advice is greatly appreciated.
Bob
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