Mom just diagnosed

Hello Trish, I was so glad to read your mom will be treated by a specialist in cholangiocarcinoma; they are hard to find. Sending positive thoughts for her appointment on Tuesday! Nancy

I went to a doctor at Roswell for a second opinion when i was deciding whether to have chemo after my Whipple surgery. I saw a woman doctor who was their expert on CC. She was very nice and altho we waited a long time she took a lot of time with us and did a lot of explaining. She actually wanted me to do a more aggressive chemo then was recommended by my local oncologist. She wanted to do xeloda and gemzar and my doc said it was too toxic for me and since I had had clear margins and no lymph node involvement (stage 2b) I chose to do just the gemzar. She did agree with me that radiation for me was a judgment call and I opted not to do it and she agreed with that.
I think Roswell is a very good cancer center and my experience was good. I have also gone to the Mayo Clinic in Minn. and I felt like they were really experts and had seen more CC. btw…I live in Rochester, NY.
Good luck to your Mom.

Hopefull Daughter, we are right there with you, can’t you feel us? Sometimes the waiting is just as bad as anything else but I swear once you hear what the prognosis is and a game plan is set in place your fright will turn to fight! Hang in there and be strong, we are all behind you!

Hi,
Roswell Park Cancer Institute in Buffalo New York initiated and provided one of the current clinical trial using Gemzar/Xeloda/Avastin protocol to treat ductal CC.
It is also a medical research center.
God bless.

Yes. It took about 3 weeks. Then the Surgeon said we can wait no longer it would be healed enough to do the Whipple. They had to cut the head of the Pancreas away so could not do that until it healed enough to cut. Anything that is “bothering” the Pancreas can throw off the sugars. After the Whipple Teddy was in the hospital about 10 days and he got insulin daily. When he came home everything with the Pancreas had come back to normal. The weird things was, the Surgeon said Teddy should have been ‘crawling’ on the floor in pain and he had no pain! He had a very high pain tolerance. There is nothing to help it heal, just has to do that on its own. But I can see now why they had to wait for your Mom. Hope this helps.

Hi Trish,

Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your mum. But you have come to the best place for support and help and you will get tons of each here. I can’t help you regarding your mums doctor or hospital as I am in Scotland, but as Lainy has said to you we do have a great search forum funtion at the top of the page and hopefully this will be of use to you. We do also have a great thread that was created by the members here regarding doctors and treatment centres and it can be found here –

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126

Also, just want to echo what Lainy says to you about major treatment centres and doctors who have experience in dealing with patients with CC. Has your mums doctor got a lot of experience with CC? We also have a list here of the major treatment centres in the USA which may be of use to you as well –

http://www.cholangiocarcinoma.org/majorcancercenters.htm

Did the doctors discuss the possibility of surgery with your mum? From what you have said about your mums plastic stent, it sounds like it is starting to work and I hope that this continues. Please keep coming back here, ask any and all questions that you have and we will do our best to help in answering them. And please keep us updated on how your mum is doing. We know what you are going through right now and we care.

Best wishes to you and your mum,

Gavin