Topic: New member

Hello everyone,

My name is Liz, my mother in-law Josi, 70 years old. was recently diagnosed with CC.  She has Cirrhosis pt (non viral origin) with a mass up to 12.5 cm in the R liver with PV thrombosis.  We belong to Kaiser, and are seeking a second opinion, the doctors at Kaiser are saying that its Locally advanced CC, and it is inoperable and wants to start her on Chemo with 5FU base regimens HTN/Hyperlipidemia: f/u by PMD.  not sure what all this means.

We are in the process of a second opinion with the non-profit org.  The Second Opinion in San Frsncisco, has anyone had any experencie with this org? we live in Sacramento CA, are there any top places to get a second opinion regarding CC.  She was diagnosed in August 2012 she has not started any treatments as of date.

Thank you for taking the time to read my post.  God Bless to you all.

Re: New member

Hi Liz,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your MIL Josi. But, I am glad that you have joined us all here as you have come to the best place for support and help, and I know that you will get loads of each from everyone here.

I can't comment on the centers that you mention as I have no personal experience of them as I am in the UK. But I know for certain that others will be along soon that will be able to offer more specific advice to you regarding these places and others in CA. And our Marion is in San Fran and she will be of great help to you regarding doctors in your area that are highly experienced in dealing with CC and patients with CC.

In the meantime, there are some links of the site that may be of interest to you. This is a link of the major treatment centres in the USA -

http://www.cholangiocarcinoma.org/major … enters.htm

And this is a link of treatment centres and doctors that was created by the members here on the site -

http://www.cholangiocarcinoma.org/punbb … hp?id=3126

I hope that some of that will be of use to you.

You are doing the right thing in seeking second or even third opinions for your MIL and please let us know how you get on with this. Please also know that we are all here for you, we know what you are going through right now and we care. Keep coming back here and let us know how everything goes.

My best wishes to you and Josi,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member

Hello, Liz and welcome to our extraordinary family but sorry you had to join us. There are some excellent choices for other opinions in California, I am banking on some of our members to chime in on this. We are big believers in 2nd and 3rd opinions, I believe it helps us to feel secure in the decisions we are making. We also feel the more you read up on CC the better as knowledge is our best tool for fighting this Cancer. I have never heard of Second Opinion but it sure sounds like a good idea. I am wondering why it has taken so long for Kaiser to start treatment? You have come to the best place to be for this and please keep us posted as we truly care.

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: New member

Hi Liz,

I would like to welcome you to this site and tell you that I am sorry you had to find us. I am also sorry that I cannot suggest a place for a 2nd opinion in Cali since we live in Ohio. We do go to a wonderful place, University of Michigan Hospital for my daughter's care. Once you find the right place, you will know because you will see that the doctors really want to help and have lots of experience with CC. Like Gavin said, Marion is the one who knows her hospitals in California and everywhere else for that matter! I'm sure she will be along to help real soon. Feel free to ask any questions you have. Someone will almost always be able to answer. I wish you and Josi all the best and I hope to speak with you again.

-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: New member

Thank you for the kind words.  Lainy, my MIL, hasn't decieded what she wants to do, she's thinking of......... riding this out.... Kaiser has contacted her several times, I think she is avoiding them. Our family has gone through Cancer, 7 years ago my husband Alex, Josi's oldest son passed away from brain cancer and he went through chemo, it was very hard on our family.  I have asked her if I can help her with getting a second opinion and she has agread I am so grateful that she is trusting me with her information.  I want to find the best doctors and hospitals in CA.

Thank you so much
Liz

Re: New member

Liz, you are a wonderful DIL.  When I was first married MANY years ago I took care of my MIL who had Lukemia. I loved her so much. I think that prepared me to be my Teddy's Caretaker. At 70 years old if MIL is in good health otherwise there are still options that can be had. You want to make sure that where ever she is being treated they have dealt with a fair amount of CC patients. The ONC as well. Teddy was 73 when he was DX.  He had a Whipple surgery that bought him another 5 1/2 years. I am so sorry about your husband's son. I cannot imagine anything worse in life than when our children are sick. I am not versed in chemo as 5 Docs said it would not help Teddy although after surgery he had clean margins. Towards the end the ONC offered Palliative chemo and Teddy chose quality of life at 78 over quantity. I would not change a thing we did and I listened to my gut a lot! It won't steer you wrong. Feel free to visit us often and ask away, that is why we are here. Someone will always come up with an answer. This sounds wierd but weekends are slow. I know you will get a ton of support here. Attitude helps and always 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: New member

Liz....welcome to our special group and congratulations on taken an active role in your MIL's care.  Some time back (possibly years) I posted something on The Second Opinion.  I believe that it is free of charge to the patient; physicians and others volunteer their time.  We have not yet have received reports from anyone using this service though. 
Liz, as far as I know, while your MIL is in the Kaiser system, she is entitled to a second opinion.  The latest I heard and something you would want to check out is that this second, professional, opinion has to be received from a physician within their system.  Our Lesley however; managed to receive a second opinion from UCSF without charge.  This I was a few years back though.  By looking at the website of the organization you mentioned I noticed that Kaiser Physicians are involved and therefore it may not be possible to bend the current rule.  But then one never knows. 
Please keep us posted.  We care.
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: New member

Thank you Marion, and to all of you that responded.  Can anyone comment on UCSF, I am trying to connect with Dr. Alan Venook.

Thank you
Liz

Re: New member

Liz...Dr. Venook is on sabbatical. Taking his place is Dr. Kelley:
http://cancer.ucsf.edu/people/profiles/ … katie.3354
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: New member

Thank you...has anyone have any experience with Dr. Venook or Dr. Kelley?

11 (edited by marions Wed, 17 Oct 2012 01:29:23)

Re: New member

Liz...you might want to google Dr. Alan Venook.  His reputation speaks for itself as do his publications.  He is (in my opinion) one of the top hepatobiliary oncologists in the world and he is highly regarded by his peers.
Dr. Kelley is a junior faculty member at UCSF focusing on Hepatobiliary cancers, with Alan Venook as her colleague and mentor.
Dr. Kelley has high interest in this disease and also has  published numerous articles.   
My husband also was co-treated by Dr. Venook.

Until others have a chance to respond I thought to enclose a few more links:

http://www.cholangiocarcinoma.org/punbb … hp?id=5374

http://www.cholangiocarcinoma.org/punbb … hp?id=3786

.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2346

http://www.cholangiocarcinoma.org/punbb … hp?id=4535

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