younger sister diagnosed with advanced cc

I second the recommendation on the Mayo Clinic. I just got back from meeting with Dr. Steven Alberts to get a second opinion on my continuing treatment. I am not a candidate for surgery so it’s a matter of which chemo I take. His attitude is fairly aggressive which matches mine. He has a tremendous knowledge base. My oncologist is not as aggressive and has a very limited patient base to draws from. The Clinic is first-rate (with a few issues to be expected from a clinic with over 30,000 employees). That’s right, over 30,000 – just in downtown Rochester, MN.

If you do go there, the Clinic has a concierge service to help you plan your flight and hotel room. Use it (translation – don’t wing it like I did and make it much harder than you have to). I’ve also heard that there are some very inexpensive motel arrangements if you plan more than two Fridays in advance. If you fly into Rochester MN there are some (not all) nearby motels that have free shuttles to the airport and to the Clinic so you don’t have to rent a car.

I attached a copy of the Guest Housing list that we maintain. All of these options are great places to stay—patients particularly like the Nazarene Well House and the Mennonite guest home. These options are much more cost effective than many of our hotels.

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Following is from an email by Iowagirl:

There is one other option that is brand new for our Rochester area. In fact you are the first patient that I have shared this with. The American Cancer Society has partnered Nationally with Extended Stay of America hotels. Through this partnership patients will have reduced lodging options. There is some restrictions/rules that you need to know about—you must call 1-888-227-6333 to have them book the room for you—you can’t call the hotel directly.

~The rooms are only available Sunday-Thursday.
~Room rates vary depending on patients income—either the room will be free or it will cost you $12. The representative will verify your income when you call to make check on room availability.
~You will also have to plan ahead for this program. They need at least 2 Fridays (not 2 weeks) advanced lead time to process your request.
With the 2 Friday lead time this might not work your for first treatment if you make it up here for your day 8 treatment, but you can use this for any future treatments where you can plan ahead.

One other thing—if you haven’t already applied for financial assistance through Cancercare I would encourage you to do so. They will help with transportation cost related to treatment.

http://www.cancercare.org/financial
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All that is simply mechanics. What you and your sister have to focus on is a positive attitude. The best treatments in the world will not give you the best results unless you have a positive attitude. It is a struggle to keep up a positive attitude – by you and your sister and the rest of her family. Some days really suck. You (all of you) just have to get over it and fight on. You will read in these discussion boards stories that will make you cheer and some that will make you cry. Stealing from Lainy and others, this is a roller coaster. The highs are breathtaking and the lows are unbelievably painful. But these are the cards we have been dealt. Play them the best you can. Treat every day as a miracle and make it count with no regrets.

It will take days to go through the information in these Boards. Use the Search feature. Send emails to people directly if you don’t find what you need. We are in this together. When we get word of a success, we all celebrate. When one of us loses, we all lose a part of ourselves.

Sorry, I get a little preachy on this. But, if you don’t fight with everything you have, you will always wonder “What if?”. From your statements on going anywhere and doing anything, that doesn’t seem like a problem. Keep that in front of you at all times.

Duke

Thanks for reposting here as well Jayne. I replied to your other thread in the hospital part of the site too. Here is a USA specific link that will be of interest to you and your sister should you wish to pursue treatment options in the USA, my apologies for forgetting to post it earlier. It has lots of contact info in it as well.

http://cholangiocarcinoma.org/for-patients/major-cancer-centers/

As Melinda says, there are a lot of posts here on the site where members have talked about their treatment and where it was done etc.

My best to you and your sister,

Gavin