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Here is a summary from our meetings last weekend. Some of it Stacie already mentioned, and some of it is new:
Stacie, Rick, and I joined Dr. Kaseb, Dr. Javle, and Dr. Wolff from MD Anderson for dinner on Friday evening. It was a great dinner, with many potential growth opportunities discussed. Overall, the doctors were happy to see how well the website looks (Great job, Rick!), and are optimistic as to what we can do to help in their efforts. Worth noting, the recommended that we consider developing a national treatment database that would be restricted to doctors, and that could be updated by the specialists in the area of cholangiocarcinoma. We will proceed with this endeavor, seeking grant money from pharmaceutical companies to support this effort. Rick, of course, will guide us in the technical aspects of the database, and Stacie and I will work like mad to get the funding needed to support a great database.
Additionally, the doctors commented on possible grants that we could award to young researchers generate interest for these researchers to spend their careers on cholangiocarcinoma research. Foundations like PanCan and Komen have similar programs, and both foundations can trace recent developments in research to researchers that have received grants in the past. (this is a long-term project, so results are generally in the 5-10 year timeframe rather than 1-year)
The doctors were receptive to the idea of hosting web-based conferences to highlight clinical trials, new treatment options, etc. We will begin developing these conferences soon. Sara is heading this function, and we will work hard to properly promote these events so the community can participate.
Gary – I think that is pretty common with any cancer patient. The treatments take a toll on your system, and there will be times when your red or white blood count is low. Normally the doctors can find ways to stimulate production so that you can proceed with chemo once the levels come back to normal ranges.
While y’all are meeting in Seattle on the 8th, the foundation board will be meeting in Houston. Perhaps November 8th will need to begin carrying some significance in the future!
If you have a camera handy, and you are comfortable with it, I’m sure people on the boards would love to see pictures from your meeting!
These are all great suggestions – thank you very much. We will start working on lining up appropriate experts to be guest speakers.
Kris – I know some nutritionists at the National Cancer Institute (NCI), and I forwarded your question to them. (along with a request for a nutritionist to host a web conference call) They are investigating the issue, and will be in touch soon. I’ll forward the information to you, as well as sharing on the board. At least to me, it appears to make sense that such a reworking of your digestive system may result in gas. Rudy Pena, one of the board members, is also a cholangiocarcinoma survivor. He had the Whipple surgery approximately 10 years ago, and he has had to modify his diet to compensate for what the surgery did to his digestive tract. I will forward you his email address, in case you would like to contact him.
Sure – do you have specific questions regarding MD Anderson? Or are you looking more for a general summary?August 22, 2008 at 8:44 pm in reply to: Would like 2 send letter like this 2 Oprah but don’t want to misinform #21492
The above graph represents the survival percentages, and is taken from the NCI SEER website: http://www.seer.cancer.gov. The graphics did not turn out great, but if you look closely, you will see Liver and intrahepatic bile duct cancer is 3rd from the bottom. Pancreatic cancer is last.August 22, 2008 at 8:30 pm in reply to: Would like 2 send letter like this 2 Oprah but don’t want to misinform #21491August 22, 2008 at 8:27 pm in reply to: Would like 2 send letter like this 2 Oprah but don’t want to misinform #21490
Agreed with Kris and Joyce – Pancreatic Cancer has a slightly worse prognosis than cholangiocarcinoma.
I have some good graphics that might be helpful to include in the letter. Let me see if I can make these accessible online.
Big hugs to you, Kris. I’d love to say to wait and try not to let your mind run down the rabbit hole, but I am 100% positive I would be having similar thoughts if I was in your shoes. I offer you all my prayers from across the ocean, and every good thought I can muster.
These cholangio doctors (or any doctor, for that matter), while extremely smart and amazingly dedicated, just sometimes don’t get it. They appear to completely ignore the patient’s perspective, and it is cruel. We try and talk to them about it, but they just never seem to fully grasp the anxiety and stress that comes with waiting, and how much of an impact it has on the patient’s health. And for 3 weeks!!! Wow. Again – big hugs.
My heart goes out to you and your family. May your mom have peace, and your family have comfort.
I did not get that impression from the article you linked above. Rather, the protocol listed in the Table indicates that transplant is not an option if there is extrahepatic metasteses, lymph node metasteses, and local estension of the disease to adjacent organ or tissues. Those are all indicators that the cancer has advanced, so my interpretation is that advanced cases of hilar cholangiocarcinoma may not be able to get a transplant. Of course, that is something for the surgeon to decide. I merely present my interpretation.
As far as whether or not transplant may be an option if the tumor returns, I don’t know the answer to that question. Among other factors, I imagine it would depend upon the extent that the tumor has returned, as well as what chemotherapy or radiation treatments the patient has previously had. That is a good question for your doctor, and is likely very case-specific.
This popped up today on the radar, and seemed pretty appropriate to include on this discussion:
Liver transplantation for cholangiocarcinoma
Cholangiocarcinoma (adenocarcinoma of the bile ducts) can be hard to diagnose and even harder to treat. It preferentially grows along the length of the common bile duct, often involving the periductal lymphatics, and commonly metastasizes to the lymph nodes.
For hilar cholangiocarcinoma (tumor above the cystic duct), surgical resection is the treatment of choice in the absence of associated primary sclerosing cholangitis (PCS). However, approximately 10% of patients with cholangiocarcinoma have undying PSC, and the results of resection in this setting are dismal. Furthermore, cholangiocarcinoma in the setting of PSC is frequently multicentric, and is often associated with underlying liver disease with eventual cirrhosis and portal hypertension.
This scenario led transplant centers to consider liver transplantation for hilar cholangiocarcinoma; however, the results were disappointing, with three-year survival rates less than 3%. The situation improved with the inclusion of neoadjuvant chemoradiation, which was based on the concept that the growth of hilar cholangiocarcinoma is locoregional.
Neoadjuvant chemoradiation for cholang-iocarcinoma was introduced by the transplant team at the University of Nebraska in the late 1993 by the multidisciplinary team at Mayo Clinic protocol, which begins treatment with external beam radiation therapy, followed by protracted venous infusion of fluorouracil (5-FU) and brachytherapy (Iridium), and then abdominal exploration for staging with endoscopic ultrasound and finally capecitabine for two or three weeks until the final option of liver transplantation. The five-year survival rates for patients undergoing liver transplantation at Mayo Clinic after completing the neoadjuvant cholangiocarcinoma treatment protocol are excellent, at approximately 70%.
According to an associate professor of surgery at the Mayo Clinic College of Medicine and Chief of Liver Transplantation with the Mayo Clinic Transplant Center in Rochester, Minn., of 90 patients who underwent transplantation according to the Mayo Clinic protocol between 1993 and 2007, five-year survival was 71% and disease-free survival was 65%. For 15 patients, disease recurred after the transplant, with a mean time to recurrence of 25 months. Current eligibility for the Mayo Clinic protocol based on the presence of an unresectable tumor above the cystic duct or a resectable cholangiocarcinoma arising in the PSC; radial dimension of the tumor should be 3 cm or less, intra- or extrahepatic metastases should not be present and there should be no history of prior radiation therapy or transperitioneal biopsy.
Combined chemoradiation therapy and liver transplantation achieves excellent results for highly selected patients with early-stage hilar cholangiocarcinoma; five-year patient survival after transplantation with this protocol 71%, and exceeds the results reported with resection for hilar cholangiocarcinoma. These results approach the survival after transplantation for chronic liver disease and HCC. Operative staging is essential, as positive findings preclude transplant in about 20% of patients.
Transplant can be a successful treatment option for early stage cholangio. That being said, surgeons are very selective on who is a candidate for transplant. Mayo developed the protocol for selecting candidates, and many hospitals are now following this protocol when determining whether or not the patient is a candidate.
The issue that you may run across is that most patients are fairly advanced by the time they are diagnosed with cholangio, and may not be a candidate for transplant. The organ bank is extremely reluctant to make a healthy liver available for a transplant if it’s just going to be subject to liver cancer cells still present in the patient’s body. Therefore, you can see why doctors are very selective on who can receive a transplant. If you are going to be looking into this further, I would encourage that you inquire whether transplant is an option for recurrent tumors.
Good luck with the research, and if you have time, please share your findings here.
Kris – indeed. Rice University has the go-to experts on nanotechnology in Texas, but they have been working on nanotechnology extensively with researchers, industry, and government alike all around the globe. I am encouraged that everyone seems to be pulling together to ascertain how nanotechnology can help numerous industries, specifically in finding a better treatment for cancer.
My heart breaks for you all, and you are in my prayers. Perhaps there are some alternative treatments that can help alleviate some of his symptoms and make him more comfortable.