What cancer center sees the most bile duct cancers?

Randi, did you ever hear about the Anti Cancer book? I just bought it as I can also use it for myself being diagnosed in October and also having surgery for another “rare” cancer group. Very interesting and a lot of people on our Board had recommended it. My daughter’s fiance was DX with Lymphoma 3 years ago and has been in remission after chemo and Vitamin C IV once a month with a natural pathic doc. He has also gone as Organic as he can. I say what ever works! And we would love to call you the Miracle Woman!

Hi Randi,

I am glad to hear that you have your treatment plan in place now and I wish you every success with your chemo treatment. Here’s hoping the next 17 treatments go as well as the first one!

My best wishes to you,

Gavin

Here is the strange part. Teddy doesn’t adhere to but one diet, the C Food diet. He sees food and he eats it!!!! Perhaps he thinks nothing will get this 77 year old Sicilian, don’t know. His ex wife didn’t get him, Korea didn’t get him, a very exciting and hard life didn’t get him so he feels he is invincible. Mmmm I see now why he goes to daily Mass, guess that is working also. Honestly, sometimes I feel he is 77 1/2 what would I stop him from enjoying now. I have told him its a good thing I think he is so cute, that is why I hang around.

So glad you have a plan Randi, that is a big part of it. Teddy had his Whipple 4 1/2 years ago and did not go the chemo route. A tumor returned last year where his duodenum used to be and they did radiation to bring it down in size then zapped it with cyber knife. Now he has 2 small suckers that returned last Fall but they are so small that the Radiologist & Oncologist wanted to wait and Teddy has another PET in March. The oddest thing is in December the PET showed they had actually become smaller! Very interesting to find out from both doctors that some people’s hormones have something (?) that really fights cancer cells. I guess that is why we call him the Miracle Man. Good luck on the chemo and just keep cyber knife on the back burner just in case for down the road. Its a 3 day walk in the park.

My husband is getting treating by a CC specialist at Johns Hopkins. He’s had second opinions at Mass General and at Mayo. Each of the three centers has CC specialists, and each offers insights and options that the others hadn’t noticed.

I hear that Hadassah in Israel is a great CC center as well, so if you’re up to doing serious travel you can write the trip off as a medical expense.

Marions

Thanks for the message. Here is the full story on me. 60 years old, married.

In September, 2008 I started getting jaundiced and went in very soon to see my family doctor. He got on step right away, and within that week I was given an ERCP and the diagnosis was CC. The surgeon recommended that I get into one of the main cancer centers since it was such a difficult condition.

My wife and I started calling the major cancer centers; we found many of them to be difficult to get appointments with, however with the Mayo in Rochester we got right in and had an appointment the next week. They reconfirmed the diagnosis and after some tests ruled out a resection since the damage to the liver had gone too far. At that point they discussed the possibilities of a liver transplant us and put me through quite a few tests. I got through those OK and was put on the waiting list for an organ. I also went through their standard (as I understand it) radiation and chemotherapy treatment, which lasted three weeks. Then after about ten days of recovery had an additional radiation treatment (brachytherapy).

We were told that it took about a year to work up through the transplant waiting list. That estimate turned out to be right on. During the year we waited we had multiple trips back to Rochester for regular check-ups in conjunction with ERCPs to change stents. I also had Ascites, and needed that dealt with about once a month, either at the Mayo or at my local hospital.

The waiting is a difficult thing since there is always the background concern that the CC would spread, or some other condition would come up that would preclude a transplant. I did work hard at exercising as much as I could to be as robust as possible.

In early September, 2009 I had the staging surgery at Mayo (they open you up to make sure that everything looks OK). At that time they recommended that we stay close by (within 12 hours of Rochester) since I was starting to get up on the list.

We were fortunate to obtain lodging at the Gift of Life Transplant house, which is very comfortable housing, at a very reasonable rate, for transplant patients and their caregiver. Their facilities at Gift of Life have recently about doubled in size, so they will be able to handle more patients now. You have the opportunity there to get to know other people going through all kinds of transplants and troubles, which helps to keep one’s perspective.

Out of the blue on a Sunday afternoon (Oct 4) we received a call from our surgeon and got the news that an organ was available, so about midnight that day I went into surgery. So October 5 is technically my second birthday.

Due to complications with the surgery I had a lengthy hospital stay of about 2 and half months, but I came out of it OK- kind of weak and pretty skinny, but OK nevertheless. As I understand the statistics, there is about a 70-80% chance of 3 year survival at this stage, maybe higher.

Since getting home I have regained about 20 pounds and am back on an exercise program. So far things are going good; we go back to the Mayo in March for a check up.

I cannot speak highly enough about the physicians and staff at the Mayo. Everyone there is very professional, and treated us extraordinarly well, with caring and sensitivitiy in everything they do. The nursing staff during my hospital stay was uniformly spectacular.

In summary, I have gotten this far because of the loving care and support of my wife and family, along with the quality of medical care received. Given the terrible nature of this damned disease I consider myself to be a pretty lucky guy.