First post past frustrated to desperate

Debbie….don’t worry. You make excellent points and if not for this posting, then it stands true for all others you have made. None of us are experts, we are here to help any way we can and that’s what counts.
Hugs
Marion

Hi, Tennessee! I live in Richmond, VA, but lived in Memphis a while back. (I’m the Susan Sherri mentioned earlier – part of the richmond CC lunch bunch!)
I have ICC, dx March 8, 2015, and my 3rd opinion was with a surgeon (Dr. Peter Kingham) at Sloan Kettering in NY. The tumor board decided they couldn’t do a resection at that time, but enrolled me in this Phase 2 trial. Dr. Kingham implanted the HAI pump and Dr. Kemeny is my Onc. there. At first, I’d see her monthly for treatment and scans, and now I go every 2 months. My tumors started shrinking from the beginning and still are shrinking, and I’m down to only 1 chemo – gemcitabine – systemically (in the port) here in Richmond every 2 weeks. I was diagnosed at stage 4, but that really doesn’t matter. I’m doing great, and am the ‘poster child’ for great chemo with minimal side effects. I had 2 metastatic tumors in my liver – and after the surgery – where some of the tumor was harvested for biopsy and storage, the big one was 12.0 cm x 11.3 cm and another was 2.2cm x 2.0 cm. One lymph positive, one neg. some other spots they were watching in the peritoneal cavity, as well. The 2 tumors measured 5.0/3.8cm and 1.1/0.7cm at my last CT scan March 6 2016. Even though it’s still shrinking, Dr. Kemeny thinks the tumors are mostly necrotic. My liver, which took some minor damage with the chemo, is now very healthy and rebuilding. We’re thrilled chemo is still working, and we hope to be able to become ‘resectable’ at some point. My Onc and Dr.s here in Richmond think my success with this trial will help this become standard of care for solid tumors. They have started implanting HAI pumps (now that they are ‘trained’ on them here because of me) in other patients with colorectal cancer, and are investigating using this method in other cases – MSKCC has used this method for years now, with that cancer. I can’t say enough good about this trial, Memorial Sloan Kettering, and my team there AND in Richmond at Virginia Cancer Institute. And it seems it’s easier to get into MSKCC with your own referral than with your Doctor trying to get you in. Here’s a link about my trial. Keep in touch. Check out the cholangiocarcinoma warriors page on facebook. Praying for you both. I know how difficult this is, but it really helps to stay positive each day.
https://www.mskcc.org/cancer-care/clinical-trials/13-066

Tnmikishell……not sure you need to leave Vanderbilt for subsequent treatments. Dr. Laura Goff, oncologist, and member of our general medical advisory board, specializes in gastrointestinal cancers with an emphasis on tumors of the liver and biliary tract. You would want to consult with her or her team.
As mentioned by others, obtaining a second opinion has become standard of care. For that you should consider a center treating a high volume of cholangiocarcinoma patients such as MD Anderson, Mayo , Sloan Kettering, John Hopkins. West Coast patients would look to UCSF and USC. Investigate insurance coverage prior to doing so.

Is your next visit with the surgeon? If so, then you should investigate the possibility of coordinating the appointment with the oncologist as well. You also want to ask the physicians about molecular testing and whether it is routinely conducted within Vanderbilt. If not so, then you would want to have tumor tissue sent to a certified lab such as Foundation One or Perhera or other labs of this kind.
Being that your husband has intrahepatic disease there is a 40% chance that he has an alteration (defect) in his DNA for which a biologic drug has shown great response. Sherri mentioned Matt, who had spectacular results.

Most likely your husband will be treated with gemcitabine and cisplatin, the standard treatment of care for cholangiocarcinoma. At one point though, the tumors will continue to grow and become resistant to gem/cis. This is when a follow-up plan should be in place.

Do others have additional thoughts?

The attached link provides information on clinical trials. Please don’t hesitate from asking any questions you may have. We are here to help you in any way possible.
http://www.cancer.gov/about-cancer/treatment/clinical-trials

Hopefully this info did not overwhelm you.

Hugs
Marion

Hi
I dont post on the site much but I do read it everyday. I felt I was reliving my first six months when I read your frustration and not knowing what to do next. My first chemo and oncologist turn out to be a disaster and I was left w no hope. That’s when I figured out that I had to pull on the big girl pants and take control. You have made the first correct step in finding this website I met a young man name Matt who post on this site and we both lived in Richmond. He met me for lunch and that is how I found out about cancer centers, foundation one to get mutations and much more. It but the fire in me to know there was hope. I found a onc in Richmond who was welling to help get me to the right cancer center and was willing to work with them. I see Dr. Shroff at MD Anderon. Once I had both doctors that I could communicate with I started to let some of the stress go. It’s a rough road but put in the work to find the right doctors.

I have read that Vanderbelt has some clinical trials and some doctors you might want to check out if you want to stay close to home.

Look on the site for others in your area. I now meet with Matt and Susan and it helps to have lunch and talk to others that understand what you are going through. Post all your questions and someone will answer. Marion, Lainy, Gavin and many others are the wealth of information and keep hope coming to us.

Sending prayers and thoughts your way
Sherri

Wishing you the very best on Tuesday! We will all be sending prayers and great thoughts and lot of good juju! Will be anxiously waiting for the good news!

So happy surgery is scheduled! Sending lots of good thoughts and prayers your way for both of you. Please keep us updated!
Melinda