Topic: LIVER TRANSPLANT FOR CC

After my own families ordeal I stay on this website to try to educate on the transplant option. ( thank you Wayne Parsons and Raye Field from this board for telling me about this option)  Please consider looking further to see IF transplant could also be an option. You want to have as many options as possible! Usually once surgery is done transplant is no longer an option  so you  need to know all your options up front.   Also remember some Docs may know little about transplant only because it is not offered at their hospital. Mayo, U of Neb, U of Utah and others offer transplant.  I have to correct Marion ( sorry!) but resection  is NOT the only chance for a cure. Statistically speaking transplant is the best cure IF you can make it through. ( reoccurence is always possible but less likely with transplant vs. resection). Again, only a small percentage can qualify for transplant so please look into this option.
   
For my mother, a NYC surgeon thought she was resectable when Yale did not. Then we sent her to the Mayo and they said she could do the transplant.  I hope your dad may potentially have two options.

Here is an interesting excerpt from the NYC surgeon in an email he sent me last summer:     

" It is a long road to transplant. The ones who make it through the entire process- chemo, radiation, waiting, the transplant procedure- have proven themselves through trial by ordeal, and it is indeed true that that group does well; when you figure in all those that drop out along the way, resection starts to look a lot better. It is really a case of rolling the dice- going for the big jackpot knowing that the odds are less that you will hit, or doing a resection that, while somewhat less-likely to be curative than a transplant, is considerably more likely to actually happen since it is just scheduled and done. I'm not sure what I would do. The trouble is that you have to make a choice and live with it- once you commit to one path, it is rarely possible to turn around and head in another direction"

so - Please be informed that transplant may also be an option.
ashley

Re: LIVER TRANSPLANT FOR CC

I'm copying an earlier post from Raye re: transplant

I wanted to remind those who have any questions on Klatskin tumors and information on liver transplant therapy as a solution that they can e-mail me anytime or phone me at 1-269-598-1861.

So far I'm a CC survivor, and for those who don't know my history I am a Klatskin tumor survivor and liver transplant patient. As of March 20th I celebrated both my 34th wedding anniversary and the second anniversary of my liver transplant. My CA19-9 marker is 40 and blood work and kidney functions are all normal. I'm very fortunate to be here because of an early diagnosis of the tumor and excellent care at the Mayo Clinic.

For those of you in Canada I can help point you to several US centres for treatment such as I received and also the McGill University Hospital in Montreal Quebec who has now been appointed as a centre for CC in Canada.

Call anytime.

Raye

Re: LIVER TRANSPLANT FOR CC

I'm also copying this posting from Wayne Parsons from December 2006.        (And as an update - Sloan Kettering has partnered up with another NYC hospital and they NOW do liver transplants for CC). 


Everyone with intrahepatic cholangiocarcinoma (Klatskin) should realize that there may be a cure for them. They call it Neoadjuvant chemo/radiation followed by Liver Transplant. Do not accept dire predictions from your doctors. Even at Memorial Sloane-Kettering Cancer Center the doctors did not even tell Valerie about this treatment. The reason? They don't do it. You cannot take your doctor's negative opinion about treatment as being true or even well-informed. My wife died of cholangiocarcinoma earlier this year. We learned about the liver transplant protocol developed by Dr. Steven Rosen at Mayo Clinic in Rochester MN that was having great success. I found it on my own. None of the many doctors who saw valerie mentioned it. For Valerie it was too late when she found it because she had to go through a lengthy pre-transplant protocol (approximately 7 months). Her cancer metastasized before she could get a liver transplant. For others the treatment hopes to achieve an 80% cure rate. Mayo started the program in the 1990's and published promising results in 2002. Then other Centers strted doing the protocol, notably at the University of Nebraska and at Barnes-Jewish Hospital Sitemann cancer Center in St. Louis, MO under the famous liver surgeon William C. Chapman. Other cancer centers are now doing this procedure. Look up clinical trial identifier at www.clinicaltrials.gov   and Identifier: NCT00301379. Here is a quote from a leading Mayo Clinic paper published on cholangiocarcinoma that discusses this treatment option:

"LIVER TRANSPLANTATION
Liver transplantation without neoadjuvant therapy should
be avoided in patients with hilar cholangiocarcinoma, with
long-term patient survival in the range of 28% at 5 years
and a prohibitively high recurrence rate.38 Results are
equally disappointing with incidental tumors.39,40
The Mayo Clinic in Rochester, Minn, developed a transplantation
protocol for patients with hilar cholangiocarcinoma
or cholangiocarcinoma arising in the setting of sclerosing
cholangitis. The protocol excludes patients with
intrahepatic peripheral cholangiocarcinoma, metastases, or
gallbladder involvement. Patients are initially treated with
preoperative radiation therapy (40.5-45.0 Gy, given as 1.5
Gy twice daily) and fluorouracil.41 This initial treatment is
followed by 20- to 30-Gy transcatheter irradiation with
iridium. Capecitabine is then administered until transplantation.
Before transplantation, patients undergo a staging
abdominal exploration. Regional lymph node metastases,
peritoneal metastases, or locally extensive disease precludes
transplantation.
At the time of the last published review, 71 patients had
begun neoadjuvant therapy at the Mayo Clinic since 1993,
and 38 (54%) had favorable findings at the staging operation
and subsequent liver transplantation.41 Initially, 40%
had findings at the staging operation that precluded transplantation.
With adoption of endoscopic ultrasound-directed
aspiration of regional hepatic lymph nodes, most
patients destined to have occult metastatic disease are detected
before administration of neoadjuvant therapy. Currently,
less than 15% will have undetected metastatic disease.
The 5-year actuarial survival rate for all patients who
begin neoadjuvant therapy is 58%, and the 5-year survival
rate after transplantation is 82%.41 These results exceed
those achieved with resection even though all the transplantation
protocol patients have unresectable cholangiocarcinoma
or cholangiocarcinoma arising in the setting of
primary sclerosing cholangitis. These results are also comparable
to those achieved for patients with chronic liver
disease undergoing transplantation for other indications.
Hilar cholangiocarcinoma, once a contraindication for transplantation,
has emerged as an indication for liver transplantation
when combined with effective preoperative therapy."


The paper is entitled: "Treatment Options for Hepatobiliary and Pancreatic Cancer" Mayo Clin Proc. 2007;82(5):628-637

Results are very encouraging if the patient can make it to transplant without metastasis. I will post another note on how to destroy Kaltskin tumors without surgery (Y-90 microspheres used in a 2 hour outpatient procedure destroyed Valerie's Klatskin tumor but the cancer had spread and it was too late). If we knew of that treatment before Valerie started on the liver transplant protocol I think she would have been cured and alive and well. This crushing experience could have been avoided. Northwestern University, Wake Oncology and the University of Utah are using Y-90 microspheres successfully against Kaltskin tumors. Doing that as soon as a patient is diagnosed and then doing the chemo-radiation protocol for a short time and transplanting the liver is the best scenario. The trick is talking the doctors into putting that sequence together.

If anyone has questions they can contact me privately at 808-753-0290. I am in Hawaii.

Wayne Parsons
wparsons@hawaii.rr.com

Re: LIVER TRANSPLANT FOR CC

Ashley,

Thank you for posting this.  I have done almost as much research on this option myself and all things considered it is a GREAT option if someone meets all of the treatment criteria.  I was SO very close to meeting the criteria and went through the protocol but was found at the end to have mets which disqualified me.

If someone wants to use me as a resource in addition to those above, I'd be happy to share my experience.  I think this option is the very best if you qualify and strongly recommend that a person gets a consult at Mayo Clinic if you think you may qualify for it.

Rick

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009