1 (edited by Jackson1 Tue, 29 Jan 2013 11:59:58)

Topic: Question about Mayo Scottsdale

First, thank you for having this wonderful forum. It is amazing to have such a wealth of information and support at one's fingertips. My deepest thoughts and best wishes go out to everyone here who is battling this rare and serious condition. I admire your strength and courage.
A dear friend was recently diagnosed with CC. Thankfully he will see Dr. Selby and Dr. Lenz at USC Norris next week, but from my reading here it seems that he might benefit from a second opinion at Mayo, Scottsdale at some point--particularly if a liver transplant is a consideration.
Does anyone have specific experience with an oncologist there that's been particularly rewarding? I'm just looking for a name as a starting point for an appointment. Any help would get greatly appreciated.
Thanking you in advance, J.

Re: Question about Mayo Scottsdale

Jackson....welcome to our site. I am sorry to hear of your friend's diagnoses however; I am thrilled to see your involvement in finding answers to this complicated disease.  Congratulations on the upcoming visits with Dr. Selby and Dr. Lenz, as both physicians are "very" familiar with this cancer and the opinions obtained will answer many of your questions. 
Until others come around and share their thoughts with you I thought to attach a link to a member established thread:
http://www.cholangiocarcinoma.org/punbb … hp?id=3126

The information provided is lengthy and time consuming it does however; share firsthand experiences with physicians involved in their care.

Good luck.  Your friend is fortunate to have your by his/her side.
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

3 (edited by Jackson1 Tue, 29 Jan 2013 23:14:32)

Re: Question about Mayo Scottsdale

Thank you for that link. I read through the entire seven pages and oddly enough there is not a single comment about Mayo, Scottsdale. If anyone has had any first-hand experience there, I would love to know. And thanks again for the link--what a great resource.

Re: Question about Mayo Scottsdale

Jackson....you might want to focus on a center treating a high volume of Cholangiocarcinoma patients.  This may involve some traveling though. 
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

5 (edited by Jackson1 Wed, 30 Jan 2013 22:34:27)

Re: Question about Mayo Scottsdale

I think Dr. Venook might be a good answer. He seems to be very highly regarded and San Fransisco is nearby. I'm just not sure my friend has the strength to travel across the country.

Re: Question about Mayo Scottsdale

Jackson.....please stay in touch.  When is your friend's appointment with the USC 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: Question about Mayo Scottsdale

Hi Jackson,

If you go to the page you come to first on this site, there is a Google search on the right side. I typed in Mayo Scottsdale and some posts came up. Make sure to look at the date they were posted as some folks are sadly no longer with us. Hope this helps for you to at least get a name. 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: Question about Mayo Scottsdale

Thank you Pamela and Marion. I appreciate your concern. My friend is seeing Dr. Lenz tomorrow. I am hoping and praying that he either says it's resectable or he thinks it will likely be recestable after chemo and/or radiation.
I now there are some cells in the lymph nodes, but apparently this is not unusual for when CC typically presents itself. I do not believe it is in his pancreas thankfully. He was told it's Stage 4, but this was by an oncologist who far from specializes in CC. And regardless, I know that others with Stage 4 have had successful surgeries and are in remission, so I am hopeful.
I'm just relieved he's seeing an expert tomorrow; I know Dr. Lenz and Dr. Selby are real fighters and don't give up. That's what he needs.
He is otherwise healthy, in his 50s, and this is just a shock to all of us. He's a very well-liked guy with many friends, and of course we are all worried. I am just glad I found this site. It's been a life-saver...literally, I hope.

Re: Question about Mayo Scottsdale

Jackson....my fingers are crossed for tomorrow's visit. Please stay in touch.
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: Question about Mayo Scottsdale

Sadly Dr. Lenz cannot take on new patients at the moment, but he agreed to monitor my friends treatment, and in fact he suggested a couple of modifications to the chemo protocol, and asked for three additional tests. What a great guy--I was thoroughly impressed--and as others have noted, his assistant Taline is truly exceptional as well.
My friend sees Dr. Selby Monday and I hope he is optimistic about the possibility of a resection. Does anybody have any input as to the parameters that make resection possible? I know adjacency to major blood vessels is a factor. I assume metastases are as well. Any input would be appreciated...especially if it helps me get through the weekend. Thanks, J.

Re: Question about Mayo Scottsdale

Jackson....pretty good news so far.  In regards to the resection I thought to incluse this link:
http://www.asco.org/ASCOv2/Meetings/Abs … ctID=10179

Definitely, enjoy your weekend.

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: Question about Mayo Scottsdale

Jackson:
Firstly, good luck to your friend. With you advocating, it gives him more time to fight this disease.
I believe he is stage 4 because of the mets to his lymph nodes. Cc actually has a 4a and 4b but I cannot remember the parameters. We do have a few members from California and I believe 1 was treated at USC and is cancer free. I just cannot remember who that is at the moment.
Hopefully if he cannot find a local surgeon he can at least find a local onc that will work with a more cc knowledgeable onc from another hospital. I have 2 oncs: my main one is in NYC and my secondary one is in Princeton. It's a little easier to get to Princeton when I am in treatment. He takes his "orders" from my main onc at Slan Kettering. That might be a good option depending on how things go Monday.
Unfortunately, your friend isn't alone in the healthy dept. many of us were never sick. I never went to the doctor because I was never sick. Unfortunately, this disease is silent until its advanced.
I hope your friend likes and believes in Dr. Shelby on Monday. That's very important, too.
Prayers for good news next week!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

13 (edited by Jackson1 Tue, 05 Feb 2013 01:29:03)

Re: Question about Mayo Scottsdale

Thank you so much for your posts Marion and Kris. I read your link with great interest Marion, and your input on having multiple doctors was very helpful Kris. I so appreciate it.
My friend saw Dr. Selby today and it was a very positive meeting. He feels my friend may be a candidate for surgery, and sooner than later. He needs some confirmatory data, but we are cautiously optimistic.
I have to say that the people at USC, both Dr. Lenz, Dr. Selby and their assistants have been absolutely wonderful, patient and explanatory. I can see why they are so highly thought of here.
They just might save my friend's life, and if that is the case, I will never be able to thank everyone on this site whose posts directed me to them. I will be grateful to the day I die, and I mean that.
You are doing such an invaluable service here...you are truly angels for the support, knowledge and comfort you provide. Now I only hope I can report good news tomorrow. Say a prayer please.
Best, J.

Re: Question about Mayo Scottsdale

Jackson....two thumbs up and fingers crossed for the most positive outcome imaginable.  Stay hopeful.  Your friend has a tidal wave of support heading his way.  (And so do you.) 
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