Topic: How to manage getting care at a distant hospital

What do patients do when they decide to get care at a hospital that is far away?  Do they just move there with their families?  We have a son in fourth grade, so it would mean going to a new school.  We live in VA, but have had people suggest going to MD Anderson.  I was just wondering how families cope with this decision and what they do.   Our son has type 1 diabetes and we have been very happy with his care at his current school, so I am hesitant to move him.  My husband has advanced CC.  He is retired and I am a stay at home mom.  He was in a trial at Georgetown, but we found out yesterday that it didn't work and the cancer has gotten worse.

Re: How to manage getting care at a distant hospital

Oh, Bluebird, I can only tell you what I would do and I am not a professional. If the  CC is now in an advanced stage I would not relocate thereby uprooting everyone. I feel that everyone would be more comfortable in their own familiar surroundings. BUT, perhaps your ONC could do some consulting with one from MDA or Sloan allowing you to stay where you are. I am so sorry you are all having to go through this, please keep us updated and lets see what others respond. I also want to say, you are in the driver's seat, you are doing the best you can and when I got to that point I listened to my Gut and others will never understand CC like we all do. I know they are trying to help but they will never know. BE STRONG!

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: How to manage getting care at a distant hospital

Hi bluebird,

We travel a fair distance. We are in the eastern part of Ohio and travel to University of Michigan Hospital which is 3 1/2 hours away. The great thing about our situation is that my oldest daughter and her husband live about 15 minutes from the hospital. So we stay overnight and go home the next day. My daughter, Lauren is the one with CC. There are many on this site that travel long distances. A lot of them see doctors near them for chemo and travel every 3 months or so to MDA for scans and consults. I don't think you would have to move there. Maybe just talk to someone at MDA and set up something where you only have to go once in a while for a few days and then have a doctor near home. I know things can be so overwhelming and sometimes you just don't want to deal. I hope some of the people that travel far distances will offer you advice. Take care and all the best.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: How to manage getting care at a distant hospital

Bluebird...so sorry to hear of the turn of events.  I am wondering: who made these suggestions, friends, physicians? 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How to manage getting care at a distant hospital

Hi Marion,

Friends have suggested MD Anderson.  We just met with Georgetown and they recommend seeing if he is a candidate for targeted chemoembolization, then start a trial in four weeks.

Re: How to manage getting care at a distant hospital

We travel from Alabama to MDA in Texas. I go every 3 months for scans and to see my doctor. He gives the orders to my local onc and I see her every week. I'm most of the time in Texas for 3 days.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: How to manage getting care at a distant hospital

Bluebird....are you consulting with a radiation oncologist?  Have you also consulted with other physicians and centers familiar with this disease?  Second, professional opinions are really important to obtain when it comes to this "rare" cancer.  You would want to consult with a physician treating a relatively large amount of bile duct patients.  Gladly, the members of this site will help you with suggesting names or centers.   
Do you know the protocol of the clinical trial suggested by the physicians at Georgetown? 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How to manage getting care at a distant hospital

You live fairly close to Johns Hopkins.  They have an excellent reputation for CC.  I live in Philly and I take my mom to Sloan Kettering in NYC for her scans and the onc there calls the shots.  She receives chemo close to home.  As the doctor put it to us, anyone can dispense chemo.  It's the skill of a surgeon or radiologist that is really important where you go.

Re: How to manage getting care at a distant hospital

When my husband was diagnosed in June, we went to Johns Hopkins (Dr. Pawlik), George Washington University (my husband's cousin worked there as a head nurse and recommended someone), and Georgetown (Dr. Marshall).  Johns Hopkins advised against surgery since it was already in nearby lymph nodes and recommended the GEM/CYS chemo combo.  George Washington University basically told him there was nothing that could be done.  The head of the liver transplant center at Georgetown felt he could remove most of the 6-inch tumor in his right lobe, but when he operated, he found rice-grain sized tumors in the left lobe, so he closed him up.  He had to heal for 4 weeks then entered a trial of Xeloda, ceterizine, and temsirolimus (I think I got the names right).  He had 7 out of 10 treatments, but his platelets were taking a beating.  We found out Monday that it didn't work, and the cancer had grown.  It is pushing his liver over to the left and against his stomach, which is now compressed to half the space it should occupy (so he is eating small, frequent meals).  He meets tomorrow with the interventional radiologist at Georgetown to see if he is a candidate for targeted chemoembolization.  He has to wait 4 weeks after the last trial to enter the next one.  The next one is NCI 8735:  A Multi-Institutional Phase II Trial of the Akt Inhibitor MK-2206 in Refractory Biliary Cancers.  It's from Ohio State.

Re: How to manage getting care at a distant hospital

Bluebird....thanks for the explanation. Sorry for making you go through this. 
I am crossing my fingers for a positive outcome with the radiation oncologist.  Please keep us posted.

The clinical trial you are looking at is:
http://www.cancer.gov/clinicaltrials/se … ofessional

I am thinking of you and again tons of good wishes are heading your way for tomorrow's meeting.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How to manage getting care at a distant hospital

Dear Bluebird, I am sorry to hear of the latest reports. I will be praying and wishing for an option for your husband that will show improvement on this next round. Is his stomach causing pain? Please let us know how the meeting at Georgetown goes!
Be strong!

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.