Topic: Hi

Hi everyone,

Boy, am I glad to have found an active community dedicated to cc - I am new at this and have been reading some of the posts here and found them to be very informative.

A few weeks ago my father was diagnosed with hilar cholangiocarcinoma. Resection was ruled out because of the poor condition of his bile ducts -- he had already been suffering from PSC for a few years -- and we were referred to the Mayo clinic in Rochester for a possible transplant. We are traveling there (from NY) for an evaluation in a week and a half, and I was hoping to hear from others who have made the trip to Mayo and what the experience was like..and perhaps some practical advice, like good places to stay and whether it's important to have a car for transportation, etc.

Thanks

Re: Hi

Hi, Mr. Goodbar.  I'm glad you found this site.  Perpetual thanks go out to the tireless creators - they have done great work.

Who are you seeing at Mayo?  I know that Val McCrea had a bad experience there, but I believe Dan Peterson has had ongoing treatment, and I don't recall reading any negativity regarding the treatment.  You might want to go check out his blog (found under the General Info section) for more information, and see if you can't contact his wife directly.  I'm sure they are a wealth of information.

My brother-in-law is an oncologist there, and he's currently treating several cc patients.  He focuses more on research of cholangio.  I will ask him who he recommends you see at Mayo, if you don't already have a doctor. 

Just from visiting there, Rochester is a fairly small town.  However, I think it would be beneficial to have a car at your disposal if you're going to be there for a week. I do know they (Mayo) have free lodging for patients receiving radiation at Mayo, but I don't know if it's open to anyone receiving any other treatment, or consulations from the hospital.  I would contact the hospital and explore further, as it's a potential large savings for you. 

I will keep your father in my thoughts and prayers.  I will also try and get back on here soon with a doctor referral, should you need one.

- Sara

30-something caregiver

Re: Hi

Thanks for your support and tips, Sara. We're going to be seeing Dr. Gregory Gores, one of the doctors behind this treatment. (I would also certainly consider any good leads from your brother-in-law.)

We were referred to Dr. Gores by a surgeon at Mount Sinai hospital in Manhattan and were told that a transplant under the Mayo protocol is essentially my father's only hope for a cure. (This is the same doctor Val McCrea saw, according to the blog.)

When I spoke with the Mayo referral coordinater who scheduled our appointment, she did not mention any free lodging options; the ones you mention and the ones listed on the Mayo web site that do provide free/low cost rooms seem to be tailored to people receiving daily radiation/chemo or those waiting for transplants. We don't exactly fit into these categories right now, since this is just an evaluation/consultation. So it looks like I'll have to book a room in a local hotel.

Thanks again!

Re: Hi

I just saw your message and wanted to tell you that we live in Phoenix but when my huband was diagnosed and had surgery we were out of town. He is now under the "surveillance" of Dr. James Cashman. He is the Director of Liver Transplants at Banner Good Samaritan Hospital downtown Phoenix.  IF the need ever arose for more surgeries
we know we found our Doctor!  Also Banner Good Samaritan has rooms  they rent for 55.00 a night. Just all an FYI   We wish you much luck and you are in our prayers. Lainy

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hi

Lainy, Banner Good Samaritan is in Phoenix, isn't it? We'll be in Rochester, MN..though during the recent heat wave it might've felt like Phoenix.

Re: Hi

Mr. Goodbar,

Dr. Gores runs the liver transplant program for cc, and is the doctor at Mayo to see regarding this course of treatment.  From what I understand about the program, it is directed towards cc patients with early discovery, and may not apply to the patients that have already begun exhibiting symptoms. 

Here is the lodging information my sister passed on:

Attached to Mayo:

Marriott Hotel 507.280.6000
Kahler Inn 507.281.6200

Those are both nice hotels, but I believe the rates may be higher.

Options near Mayo:

Residence Inn 507.292.1400
Courtyard by Marriott
Executive Inn
Hilton
Holiday Inn Express

She didn't give me phone numbers for the last four hotels.  She did say the same thing you said - the free lodging covered by the grant pertains to those receiving extended chemo and radiation treatments at Mayo.  However, she said that you don't necessarily need a car.  There is a shuttle service (I believe called Rochester Direct) that runs between Minniapolis airport, and many stops in Rochester.  (including the hotels listed, and the hospital)  It is only $18 for that trip.  There is also a similar shuttle service that runs between the Rochester airport, and the hotels and hospital.  There is a very extensive underground tunnel system, which should allow you to walk freely among the hotels and hospital system. 

I hope that information is of help!  Good luck with your dad's appointment. 

- sara

30-something caregiver

Re: Hi

Sara - great tips, thanks!

The shuttle service (Rochester Direct) especially sounds like a great idea.

My father has been having symptoms (esp. abdominal pain, weakness) but I assumed it was from the PSC, but I'm not really sure. I suppose we'll have a better idea if he's a candidate for the transplant after the evaluation.  I have looked at the Marriott and Kahler, and yeah, they were pricey. We'll probably go with the Holiday Inn Express or one of the lower cost options, since we would be staying about a week.

Thanks again!