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Hi Merille,
If I can help with more information re. the Clinic, you can email me at Betsy55047@gmail.com. I’d be happy to help any way I can.Thank You everyone, I still think we are in some shock, it seams surreal.
They could not get the stent in, so he has an outside bag. It went well and thankfully he got to go home. He sees the oncologist tomorrow for treatment options.
Spoke with the GI Malignant Tumor Coordinator at UH today and got my Dad to sign some realeases to look at his case, We will have the CCF look at them too. Thanks Betsey, I will use your name with Dr Sands.
Thanks Margaret, we were really hoping for the stent would work. The UH coordinator told me they had some special procedures with them too. I will keep Mayo in mind, not sure my parents have the stamina or resources for that just yet. I am just happy they are willing to get a second opinion in Cleveland.
I am sorry to be so self centered right now, I appreciate everyones thoughts and warm welcome. I am so glad I found you!
Dear Merilee – I’m popping on a bit late but I want to join the others in welcoming you to this wonderful family. My sister had trouble getting the stents properly placed to start with but has had no problems with them since they managed to get them in. Like some of the others, she had an external drain & bag for a few months.
Like you, I found the diagnosis a total – & very, very painful – shock; my sister went in for suspected penicillin allergy & came out with a diagnosis of something none of us had ever heard of. As you visit this site more & talk to the wonderful people here more, the shock fades & the fight kicks back in.
My thoughts are with you & your family. Please let us know how you are all getting on.
Julia
Merilee,
Glad you were able to find some info. on Dr. Fung. If you decide to contact Dr. Sands, feel free to use my name. He has been out for a couple of weeks but should be back in today.
BetsyMerilee:
Welcome to the site that no one really wants to join, but I’m glad you found your way here. Have you considered one of the Mayo Clinics? I’m kicking myself for not getting my husband there sooner. Doc’s here in Green Bay are also unable to place a internal stent for my husband Tom and we’ve finally got an appointment at Mayo for him.
The external drain bag is good for draining the excess bile off but one of the things that they don’t tell you is that without the bile getting into the intestional tract is that your body does not get enough bile into the system and they you don’t get all the nutrients you need from the food you eat and therefore you begin to loose weight. My Tom is now down to 121 lbs and looks like a walking skeleton. Very sad to see. His doc’s in GB have attempted the stent 5 times with no luck. From what I hear, Mayo has some very unique procedures for placing a stent including a type of laser treatment. We are going for broke on this one.
Best of luck to your Dad, Prayers from Wisconsin are coming his way!
Go with God and KEEP KICKIN’ THAT cancer
Margaret (My Husband and Cholangiocarcinoma)
Betsey, Marions, Jennifer,
Thank you all for the great resources.
Jennifer, thanks for the explanation, I hope he gets the stent too. He had the bag already for a few days, the first attempt at the stent, didn’t work. They actually sent him home to fill back up so it will be easier to get the stent in tomorrow. They did say he might not be able to get it in.
Thank you Betsey, exactly what I have been looking for, Dr Fung’s name has come up alot. I am not sure my dad is a surgical canidate, having three organs involved already?
I will definately check out Mark Sands.
Thank you from the bottom of my heart, my dad had a better day today.
I can recommend my team of doctors at the Cleveland Clinic – Main Campus. Dr. John Fung is my surgeon and Dr. Mark Sands is my interventional radiologist. I have been with them through many ups and downs since Jan. 2009. Goto the Cleveland Clinic website for more information on these doctors.
Betsy
Merilee….here are some previous postings you might want to look at. Not all present a name of a physician however, you may still call the center and ask for a GI specialist. Good luck.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=23593
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1939
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1428
http://www.cholangiocarcinoma.org/majorcancercenters.htm
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2757
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=255
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=42
Best wishes,
MarionHi
Thank you for all your kind responses, I appreciate you all taking the time to say hello. I am still serching the site and specifically looking for names of Dr’s in the Cleveland area for second opinion. So far I have not found much.
Monday they will try again for the drain and or stent. Is it the same? They are hoping to get a internal drain. He is really sick today. I hope Mondays procedure will bring him some comfort.
Hi Merilee,
Welcome to the site although I am sorry that you have to be here and sorry to hear about you dad’s diagnosis. I came here back in summer 2008 when my dad was diagnosed and we felt the same as you and your family are feeling now. Please keep coming back here as you will get so much support and help from us all.
My dad was similar to yours in that he showed no symptoms until the jaundice appeared and he was admitted to hospital for all the tests, MRI, CT scan etc and they found he had CC. He had a metal stent inserted and had PDT as his treatment. I hope that you manage to get your dad a second opinion from someone who has seen a lot of CC patients and is experienced in dealing with this. I can’t offer any help here as I live in Scotland, but I am sure that others will be able to help.
Please feel free to ask any and all questions and I am certain that you will get answers. There are no wrong questions to ask and the more you know about CC the better.
My best wishes to you and your dad,
Gavin
Hi Merilee,
I would just like to add my welcome to the site like the others have done.
I know what a complete shock it is to discover this cancer, it is insidious in its onset and progresses silently before any symptoms show.
I think looking for a second opinion is a good idea, I live in England so can’t help with recommending anywhere in USA.
Just to send you my best wishes as you and your family embark on this journey with your Dad…..
Katie
Hello Merilee…..I would like to follow dads daughter and welcome you to our site. I am sorry to hear about your Dad’s diagnoses. Is your Dad still in the hospital and have they been able to stent him in order to relieve the buildup of bile? Also, when using the google search function, on top of the page, I came across several postings from members in Ohio. You might want to take a look. There is a possibility that someone has written about a center closer to your Dad’s location. Please, continue to put out your questions. Almost always there is someone able to help you out with information needed. My heart is with you and your family.
All my best wishes,
MarionHello Merilee and welcome to our wonderful family! We are so sorry to hear about your dad and yes it is devastating news and you feel so helpless. I would suggest getting that second opinion, read up as much as you can and hopefully someone will get a game plan in place for you. As dad’s daughter sated, we have a great research engine and by typing in Ohio or etc you should come up with some possible hospitals you may want to try. Some of them will study your case if you send in the tests to them by Fax. You might want to ask them (where you are) if they have had much experience with CC or stents and if not, where is the next closest place you can go. Good luck and please keep us posted.
Thanks dads,
they are in Portage County, I am looking into UH, he is not a surgical canidate because of the involvement. Does not seem to be a specialist in this area.
Thanks
Hi Merilee,
I am so sorry to hear about your dad. It is devastating news but you have come to the best place for support and advice. There are wonderful people here and you will find a ton of information.Where is your rural hospital? My parents are out in Lake County. My dad had surgery at UH downtown. He did his chemo at the Ireland Cancer Center in Mentor.
You can use the search function on this site to find information on everything from chemo drugs to symptoms to recommended hospitals and doctors.
I am sure others will post with information as well. My dad initially had surgery to remove his gall bladder, bile duct and part of his liver. He had chemo but the cancer is back in his liver. He is currently at TriPoint Hospital being treated for fluid retention which I have learned (from this site) is common.
My heart goes out to you and your family.
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