March 31, 2016 at 12:53 am #91894
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.
MarionMarch 31, 2016 at 12:49 am #91893
Thanks, Susan, for chiming in on this. Cholangiocarcinoma Warriors? I just love this term.
MarionMarch 30, 2016 at 11:55 pm #91897susanbradenSpectator
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/13-066March 30, 2016 at 11:45 pm #91896debnorcalModerator
Oops, my error on my comment above. I assumed current provider is a small community hospital, didn’t remember it was Vanderbilt. I should have taken a few more moments to read through prior comments to see where treatment was. Thanks, Marion for correcting that comment.
DebbieMarch 30, 2016 at 8:55 pm #91895
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.
Hopefully this info did not overwhelm you.
MarionMarch 30, 2016 at 4:22 pm #91892debnorcalModerator
I’m sorry that the surgical attempt didn’t go the way you had hoped. I know how devastating an aborted surgery can be, as we experienced the same thing with my husband. Please don’t give up hope though. You are right to seek a second opinion and now is the perfect time to do so. You can use your husband’s recovery time to arrange for a second opinion. There are other good treatments out there and one of the major centers listed on this website will be in the best position to guide you to the best appropriate treatment at this juncture. Please don’t agree to any other treatment from your current medical provider until you get your second opinion, as certain treatments (radiation, for example) may preclude your husband for undergoing treatments or trials recommended by the cc experts. Keep fighting!
DebbieMarch 30, 2016 at 3:26 pm #91891sherriMember
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
SherriMarch 30, 2016 at 12:25 pm #91890
Well surgery didn’t go as planned, biopsies on all lymph nodes came back negative (very positive) however, 4 hours in to the surgery and after they made the 12 inch incesion, they aborted the surgery because they found both left and right portals were both involved with the cancer. Sothe surgeon felt it would be more harmful than helpful to continue. So now I need from you wonderful and helpful people. Your prayers. We have 2-3 weeks healing before we can start on any other treatment. Here what I need. I have researched moffit, mayo,MD Anderson they all say wonderful things about their treatment for cholangio carcinoma. Where should we go? I don’t know where to go next! I am heart broken. And when I read about these clinical trials it I a foreign language to me. What have you heard and any suggestions?March 28, 2016 at 3:31 am #91889lainySpectator
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!March 28, 2016 at 3:10 am #91888
I assume you are referring to the CA 19-9 tumor marker, which is elevated in up to 85% of patients with cholangiocarcinoma. A grade 5 is very low.
Most often this marker is used as baseline measurement prior to chemotherapy treatment, as increase or decrease may indicate treatment response.
I am pretty sure, but you would want to ask about molecular testing and whether it is conducted at Vanderbilt. It’s a conversation you would want to have with the surgeon.
Sending a ton of good wishes your way
MarionMarch 28, 2016 at 2:43 am #91887
Just an update my husbands surgery was moved up a day. So Tuesday the 29th is the big day! He and I are very nervous. Drs starting with a laproscopic look first and if all is clean he will go on with the resection. Just to be on the safe side he doesn’t want to make a 12 in incsision which means he would have to wait 3-4 weeks recovery before chemo. We are praying phase 2 happens. We have so many people praying for us. One question I do have is we God the blood work back this week and we got our first tumor marker number and I don’t know if it is good or bad. It is 5. Is that good or bad and what does it mean?March 19, 2016 at 4:02 am #91883
Great news. Surgery is the first choice of treatment and offers the best chance of a cure. Have you investigated hotel accommodations? Perhaps Vanderbilt has connections with places nearby? If so, hopefully this includes a price reduction.
Sending tons of good wishes your way.
MarionMarch 18, 2016 at 5:26 am #91886mbachiniModerator
So happy surgery is scheduled! Sending lots of good thoughts and prayers your way for both of you. Please keep us updated!
MelindaMarch 16, 2016 at 5:07 pm #91885lainySpectator
YEA! We love the word surgery and so glad you are at Vanderbilt. It is true that no surgeon can know exactly what is going on until they see first hand. Learn to take one step at a time. Take each day at a time. You will be at the Hospital, that is for sure, but you will not need to be care giving, just to be giving loads of support and love. What you husband will be going through is not life threatening but it is huge. We will all be cheering for him and it will be a crowded surgery room with all our spirits in it. You never know how strong you are until “strong” is the only choice you have!March 16, 2016 at 4:18 pm #91884
Thank you all for your support. We are at Vanderbilt as of the first week in February. It seems we have had every test in the book. However yesterday after having a specialized CT (started with a 3) the surgeon called and spoke with us. He has decided it is worth going in lapricopically just to make sure but he believes once he does barring seeing nothing the scans didn’t show he will continue with the resection. He will be removing about 75% or more and rebuilding by bringing up his small intestines to connect with the bile duct in the right side ( left side completely encased) he told us it is aggressive so we are having surgery on the 29th of this month. When in January his cancer had not t spread. Just so scared they waited too long. Praying all goes as planned
Now my issue is how do you prepare for a 2-3 week stay as caregiver in a hospital? Lol my mind is boggled!
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