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(7 replies, posted in General Discussion)

Is everyone aware of the work of Dr. William C. Chapman at Washington University in St. Louis and Dr. Steven Rosen at the Mayo Clinic in Rochester Minnesota?

"Efficacy of Neoadjuvant Chemoradiation, Followed by Liver Transplantation, for Perihilar Cholangiocarcinoma at 12 US Centers."

Darwish Murad S, Kim WR, Harnois DM, Douglas DD, Burton J, Kulik LM, Botha JF, Mezrich JD, Chapman WC, Schwartz JJ, Hong JC, Emond JC, Jeon H, Rosen CB, Gores GJ, Heimbach JK.

SourceWilliam J. von Liebig Transplant Center, Mayo Clinic, Rochester, Minnesota.

They have a cure that so far shows a 70% recurrence free survival at 5 years if you make it through the program. They are also innovating new treatments for what were previously patients who could not qualify for their main program. Please spread the word. Many doctors and hopsitals will not tell you about this work that has been available for over 10 years. Call me if you want to discuss this.

Everyone who gets a diagnosis of CC should immediately have their biopsy report and imaging studies sent to Dr. William C. Chapman at Washington University in St. Louis, MO or to the Mayo Clinic in Rochester, MN to see if you qualify for the neo-adjuvant chemo-radiation therapy followed by liver transplant protocol. I am sorry to say it but there is no other treatment that offers more than a few months of survival. Chemo is ineffective. The studies prove that and I still read the papers. Amazingly to me, Dr. Chapman and the other 9 programs that provide this cure, still get few referrals from doctors who are treating patients with chemotherapy. The protocol has been around for over 10 years. Papers have validated its success. But doctors do not tell CC patients about it or they are negative about it. maybe that is because they want their patients to stay with them for reasons of profit? I just attended the Web seminar run by this group on the state of the art in treating CC. I was very disappointed in presentation. The fellow barely mentioned the protocol that Dr. Chapman is doing in St. Louis. All he did was show slides that confirm that nothing in chemo or radiation currently works against this extremely difficult and devastating adenocarcinoma. I have heard many "excuses" by oncologists about how they aren't sure that the Mayo protocol that Dr. Chapman offers "really works". They come up with unscientific suppositions that Mayo had better patients. That isn't true and a survey of the 10 centers doing this protocol shows that the statistics are great and very similar with an 80% or 90% cure rate predicted if a patient makes it through the program to transplant. It isn't just a transplant. They "sanitize" the patient's entire system with intensive chemo and external beam radiation. Then, if there is no metastasis, they transplant. I know the survivors. A young won=man under 50 who is completely healthy now and a young man from Ireland who got it done at his local hospital after Dr. Chapman trained the liver surgeons there in the protocol a few years ago. Timing is key. Patients who delay while getting totally ineffective standard chemo and radiation will die because their doctors withheld this information. My wife died of CC because she got into Dr. Chapman's program too late. She almost made it but for a delay in getting to St. Louis because the doctors at Memorial Sloan Kettering Cancer Center in NYC withheld even telling us about Dr. Chapman or Dr. Rosen even though they knew about the results of the studies that showed that it works. Ohio State just published a paper on CC treatment that barely mentions that there is a cure if you get into one of these programs. Honestly, nothing else works. I know that is a hard statement but it is true. Please please please in this group spread the word. Your doctors will not do it and they will downplay the results. There is a problem with doctors that they won't tell you about treatments that they don't do. Guess what, Ohio State has no liver transplant program to speak of so when they write a paper they hype the treatments that they do and they make money on. Sorry for the rant but people are dying who don't have to die. Dr. William C. Chapman, Washington University, St. Louis. He will return your call. He is famous but as humble as they come and he knows that people with CC do not need to die.

It has been a while since I posted on the neo-adjuvant chemo/radiation followed by liver transplant protocol that is being done at Barnes-Jewish Hospital in St. Louis by Dr. William C. Chapman, but he and other centers like Mayo Clinic in Rochester, MN, Jacksonville, FL and the University of Nebraska are curing patients with Klatskin's tumors. It is amazing that few doctors are referring their cholangiocarcinoma patients to Dr. Chapman or the other centers who do this procedure. (314) 362-7792

It appears to be a cure with a survival rate predicted at above 80%. Timing is crucial so don't let your oncologist say it doesn't work. I am in contact with and following survivors.

Call me if you have questions: 808-753-0290

Is anyone aware of Amla?  Amla (Emblica officinalis Gaertn), a wonder berry
in the treatment and prevention of cancer

Mass-forming intrahepatic cholangiocarcinoma with marked enhancement on arterial-phase computed tomography reflects favorable surgical outcomes
Journal of Surgical Oncology, 04/13/2011

Gemcitabine-based versus fluoropyrimidine-based chemotherapy with or without platinum in unresectable biliary tract cancer: a retrospective study

Mi-Jung Kim1 email, Do-Youn Oh1,2 email, Se-Hoon Lee1,2 email, Dong-Wan Kim1,2 email, Seock-Ah Im1,2 email, Tae-You Kim1,2 email, Dae Seog Heo1,2 email and Yung-Jue Bang1,2 email

1Department of Internal Medicine, Seoul National University Hospital, Seoul National University College of Medicine, Seoul, Korea

2Cancer Research Institute, Seoul National University College of Medicine, Seoul, Korea

author email corresponding author email

BMC Cancer 2008, 8:374doi:10.1186/1471-2407-8-374

The electronic version of this article is the complete one and can be found online at: http://www.biomedcentral.com/1471-2407/8/374
Received:     30 August 2008
Accepted:     18 December 2008
Published:     18 December 2008

Your doctor is correct that there is a debate about these approaches. Some research has shown that, for instance, antioxidants may help cancer cells proliferate rather than retard them. And the doctor is also correct that peer reviewed studies don't exist to support these approaches in a disease like cholangiocarcinoma. virtually no mainstream oncologists will support these approaches. Science argues that if one of these worked we would have a growing number of people with confirmed diagnoses who are still alive. We went through the nuitritionist and doctor exercises. In the end you must make the decisions and then find the treatments.

But the standard of care approach that you will get from your oncologist is only intended to extend time to death by a few months at best. Often those extra months (as opposed to doing nothing) are accompanied by the brutal side effects of the drugs. As I went through this with my wife we looked at quality of life as paramount and being proactive and not just taking standard chemo as our two main goals. Dane's approach is an option. It certainly isn't any worse than 5-FU or Oxiliplatin or Tarceva or Avastin. And who knows? Maybe it will hold the disease off for a year an then there will be a new treatment. I am with you each moment of this uncertain adventure. There is a way through it. Valerie and I didn't find it but we came close and we kept quality of life high. Valerie would have loved Dane's integrative approach. We hope that your mom makes it through. Our approach was that hope dies last. Good luck. We are all here for your family.

New study on Gemcitibine from Korea:

Gemcitabine-based versus fluoropyrimidine-based chemotherapy with or without platinum in unresectable biliary tract cancer: a re
Background:There is no standard palliative chemotherapy regimen in biliary tract cancers (BTC). Fluoropyrimidine or gemcitabine, with or without platinum, are most frequently used. We conducted this study to clarify the efficacy of palliative chemotherapy in BTC.

Methods:Patients with unresectable BTC treated with palliative chemotherapy between Oct 2001 and Aug 2006 at Seoul National University Hospital were reviewed retrospectively. Histologically confirmed cases of intrahepatic cholangiocarcinoma, gallbladder cancer, extrahepatic bile duct cancer, and ampulla of Vater carcinoma were enrolled. We analyzed the efficacy of regimens: gemcitabine (G) versus fluoropyrimidine (F) and with or without platinum (P).

Results:A total of 243 patients were enrolled. 159 patients (65%) were male and the median age of the patients was 60 years (range 26-81). Intrahepatic cholangiocarcinoma, gallbladder cancer, extrahepatic bile duct cancer, and ampulla of Vater carcinoma were 92, 72, 58, and 21 cases, respectively. The median progression free survival (PFS) was 4.3 months (95% CI, 3.7-4.9) and median overall survival (OS) was 8.7 months (95% CI, 7.4-10.0). Ninety-nine patients received G-based chemotherapy (94 GP, 5 G alone), and 144 patients received F-based chemotherapy (83 FP, 61 F alone). The response rate (RR), disease control rate (DCR), PFS and OS of G-based chemotherapy versus F-based chemotherapy were 16.7% vs.19.5% (P=0.591), 52.8% vs. 58.9% (P=0.372), 4.0 months vs. 4.3 months (P= 0.816), and 7.8 months vs. 9.1 months (P=0.848), respectively. Sixty-six patients received F or G without P, and 177 patients received F or G with P. The RR, DCR, PFS and OS of chemotherapy without P versus chemotherapy including P were 12.7% vs. 20.6% (P=0.169), 46.0% vs. 60.6% (P=0.049), 3.3 months vs. 4.4 months (P=0.887), and 10.6 months vs. 8.1 months (P=0.257), respectively.

Conclusions:In unresectable BTC, F-based and G-based chemotherapy showed similar efficacy in terms of RR, DCR, PFS and OS. The benefit of adding P to F or G was not significant except for DCR. Further prospective studies which define the efficacy of various chemotherapeutic regimens in BTC are warranted.

Tess: Interesting. When you say "cath" do you mean a drain tube was placed above the tumor to drain the bile as opposed to a stent (short tube placed in the bile duct itself to open up the flow)? a > 3-inch tumor is fairly large and maybe it is too big for the Yttrium 90 microspheres. The y-(0 microsphere treatment is a form of brachytherapy ca;lled radioembolization. Your dad is going to get Chemoembolization it sounds like where a chemo drug is sent directly into the tumor. The other problem with this particular adenocarcinoma type of tumor is that they tend not to reduce in size. But some do so let's see what happens with your dad. Gemcitibine is mild on side effects. Where is your dad getting treatment? It might be wortnh a try to send your dad's scans to University of California San Francisco (UCSF) or to Stanford for evaluation of cyberknife. Another new option (expensive and hard to get into) is "proton Therapy. Only a few centers exist. Huge amounts of energy can be put into a solid tumor without damaging surrounding tissue. Did the biopsy for your dad show cholangiocarcinoma and not metastatic colon cancer? It would be unlikely for mCrc to show up in the bile ducts but anything is possible. Let me know if there is anything I can do. Dr. William C. Chapman at Barnes-Jewish in St. Louis might be worth calling or sending scans to - give them my name. He is a great liver surgeon and he is a fighter when it comes to cholangiocarcinoma.

Where is the tumor in the bile duct tree? Is it classified as Klatskin? The elevated bilirubin is not uncommon and a blockage of the bile flow and consequent jaundiced is usually how cholangiocarcinoma is diagnosed. The first step after diagnosis in that situation is to have a stent placed endoscopically to open up the flow of bile and reduce the bilirubin to normal. Has that been discussed? I am surprised that your dad was rejected without someone seeing the scans. Blocked bile flow alone is usually not an exclusion and I can assure you that "intraheptaic" is not an exclusion for any of the transplant or radiation protocols. Is your dad really sick? A precarious health status can eliminate liver transplant because they look very closely at whether or not the patient can survive liver transplant and tolerate the neo-adjuvant chemo and radiation that goes along with it. Perhaps the other liver and kidney labs show too much going on and they don't think your dad can tolerate their prcedures. Valerie's tumor was at the intersection of major bile ducts and was 2.2 cm when diagnosed. It blocked completely one branch of the tree and that side of the liver was not functioning well, The portal vein was 95% compromised by pressure from the tumor mass. The other side of her liver had enlarged to accomodate the compromised lobe and additional blood supply had grown to accommodate the portal vein closure. Her bilirubin was normal. They stented her to keep things open while she did 5 months of preliminary radition (EGRT) and chemo (gemcitibine and then 5-FU during radiatiuon). The 5-Fu is also a radiosensitizing agent that makes the radiation more effective. She had several exploratory surgeries to confirm no metastasis to other nearby structures. The most common metastasis is to the liver, then to nearby lymph nodes and then the peritoneum or colon. During all of this valerie remained extremely healthy and had no liver function compromise. Maybe that is where your dad differs. I met other patients in the program at barnes-Jewish hospital and they all came in with jaundice and were stented. I provide this detail for those who are starting out in hopes that some of these facts may help understand or have a dialogue with doctors. I follow the Lance Armstrong philosophy and Valerie almost made it through this devastating disease.

Dr. Chapman who put my wife in the liver transplant rogram at barnes-Jewish Hopsital in St. Louis said that a key screening factor is how advanced the cancer is and the health of the patient. I know that Mayo does perform liver transplant on intrahepatic cholangiocarcinoma but many patients do not qualify. I am glad that Tess continues to ask questions and seek new treatments. Good luck.

My last post for the night. A very interesting positive result:

http://cat.inist.fr/?aModele=afficheN&a … t=19034335

Locally advanced intrahepatic cholangiocarcinoma successfully resected after transcatheter arterial chemoembolization with degradable starch microspheres : Report of a case
Auteur(s) / Author(s)
YONGYOU WU (1 2) ; SAIURA Akio (1) ; YAMAMOTO Junji (1) ; KOGA Rintaro (1) ; ASAHARA Shingo (3) ; KAMEI Akira (3) ; TAKANO Koichi (3) ; IKARI Takaaki (3) ; SEKI Makoto (1) ; YAMAGUCHI Toshiharu (1) ; MUTO Tetsuichiro (1) ;
Affiliation(s) du ou des auteurs / Author(s) Affiliation(s)
(1) Department of Gastrointestinal Surgery, Cancer Institute Hospital, JAPON
(2) Department of General Surgery 2nd Hospital of Soochow University, Suzhou, CHINE
(3) Department of Internal Medicine Cancer Institute Hospital, Tokyo, JAPON

R

Sorry to post so many messages but here is a study of Y-90 microsphere treatments of unresectable intrahepatic Cholangiocarcinoma tumors: http://www3.interscience.wiley.com/jour … p;SRETRY=0

Registry Study of Neoadjuvant Chemoradiation & Transplant for Cholangiocarcinoma
Patients
This study is currently recruiting patients.
Verified by Washington University School of Medicine September 2006
Sponsored by: Washington University School of Medicine
Information provided by: Washington University School of Medicine
ClinicalTrials.gov Identifier: NCT00301379
Purpose
This is an observational study intended to validate results of a previous study done at the Mayo Clinic.
Patients are treated with combination chemotherapy and radiation and maintained on oral Xeloda until
they can receive liver transplant. A staging laparotomy is performed before chemoradiation in order to
identify patients who will most benefit from the treatment and to improve outcomes.

Anyone you get at Mayo will be great. But even then the oncologists everywhere tend to be wary of recommending new things outside of standard chemo. just be sure to ask lots of questions and see if Dr. Rosen (liver surgeon) will look at your scans. You might also send scans and biopsy report to Dr. Kennedy. He can quaickly tell you if you are a candidate for Y-90 microspheres (radioembolization). There is also a "chemo-embolization procedure and Dr. Kennedy is using the Y-90 microspheres in a form that not only have radioactive liquid Yttrium, but also a chemotherapy chemical in the resin microsphere. Note that Mayo is not strong in microspheres. Kennedy (Wake Radiology in Cary NC) is the best and has done the most and as a young MD at the University of Maryland he worked on a lot of cholangiocarcinoma patients. I expect that the Mayo doctors will be non-committal or Poo-Poo the micrspheres.

John: If you go to Mayo Clinic to see an oncologist, the one I would recommend is Dr S. R. Alberts, Mayo Clinic, , USA. Tel: +1-507-284-8694; Fax: +1-507-284-1803; E-mail: alberts.steven@mayo.edu

He worked with native Americans early in his career and they suffer a much higher incidence of cholangiocarcinoma. With the expertise that Mayo has with diseases of the bile duct tract you can't go wrong in Rochester. I have met with him and he is extreemely nice and knows everything. You must be aware that oncologists have no answer to cholangiocarcinoma. The treatments are weak against this adenocarcinoma. They are therefore quite negative about options and prognosis. But at Mayo they may have combinations of drugs that slow the disease while you get into programs, like liver transplant, that offer potential cures.

One more note. My wife got 5-FU (Flouroracil) which is widely adminstered against BDC. It is an old and rugged chemo. Because of its toxic effects it can only be administered in low doses and over limited time. Xeloda (capecetibine) is that pill form of 5-FU. There is research that suggests that BDC may respond (i.e. slow disease progression - not cure) to higher doses of 5-FU. But the body can't tolerate the levels administered. A new drug Davanat that Valerie got access to through a long battle with the FDA, combines with 5-FU to eliminate the adverse side effects of 5-FU. Valerie received huge doses of 5-FU with only minor side effects. Unfortunately her cancer had metastasized by the time she got the Davanat and it did not slow the cancer. I wish she had received the Davanat and 5-FU while the cancer was confined to the tumor in her bile duct. There is research going on with DAVANAT in Newton, Mass at Pro-phamaceuticals with new combination therapies. You may want to Google this drug. It could buy time.

Mayo is excellent. They know more about BDC than other ceters because they have a long history with all bile duct problems. They have a liver transplant protocol (Dr. Steven Rosen) that has a projected 80% cure rate if you qualify. Barnes Jewish Hospital/Washington University in St. Louis is also a leader in the transplant protocol. Dr. Andrew Kennedy in Cary NC destroyed my wife's Klatskin tumor (intrahepatic cholangiocarcinoma) with Y-90 microspheres. Brilliant technology with almost no side effects. But you must act quickly. Doubling time on cholangiocarcinoma is 3 to 6 months and it is highly resistant to chemotherapy. By far your best bet is at Mayo and the liver transplant protocol. If they will use the Cyber-knife (gamma knife I believe is used for head and neck tumors) - no difference, all a type of stereotactice radiosurgery (SRS). SRS was invented at Stanford in the late 80's. If you are on the west coast I would check out UC Davis that does both SRS and the Y-90 microspheres. Do npot go to Sloane Kettering. Despite the fact that it is probably the greatest cancer hospital in the world the top cholangiocarcinoma surgeon there could not do convential surgery on my wife and also did not tell us about tje liver transplant protocol at Mayo, SRS or the Y-90 microsphere treatments that were being successfully implemented at Mayo, with Dr. Kennedy etc. this was really bad and the delay probably allowed my wife's cancer to metastasize to her peritoneum before Dr. Chapman in St. Louis could get her to transplant. Doctors like Kennedy and Rosen will quickly tell you if their treatments will work. I think the most impiratnt step is to quickly neutralize the main tumor with radiation (SRS or Y-90) and then get into a transplant program. They usually start with 4 or 5 months on chemo and external beam (EGRT) radiation before transplant. I have lobbied with Dr. Chapman to use a more modern radiation approach to neutralize thye tumor and get to tansplant sooner (cancer is a race against time). I believe Mayo moves more quickly to transplant. There are people out there who have been cured with the transplant protocol. The chances are that the cancer will return even if the initial tumor is dtsroyed or removed. The Mayo protocol is more successful although the jury is still out. They sanitize the system with chemo and radiation. Contact me directly 808-753-0290 if you want more information. I have a lot of materials. Wayne Parsons - Honolulu

I have posted on this topic before but there are new studies verifying that even though the surgeons can't remove the tumor because of its size or loication, a brachytherapy treatment where micropsheres are injected into the tumor blood supply accomplishes the same thing in a simple 2 hour outpatient procedure. My wife had it done and I can verify the results. Unfortunately the cholangiocarcinoma had spread outside of her liver into the peritoneum before we utilized this procedure. Here is a recent paper on the treatment. Not only can you now partially or completely destroy the tumor with few side effects so quality of life is better. Here is an excerpt from the article published in 2008:

"Treatment of Unresectable Cholangiocarcinoma Using Yttrium-90 Microspheres

I do not know what the final diagnosis was. He may have told me in an email but it is buried in a huge set of emails. If I find it I'll let you know.

When was your husband treated at Ohio State? Was it part of a clinical trial or data collection study? Who was the main doctor? Was it the Mayo liver transplant protocol? And was the brachytherapy used against the bile duct tumor? Was it chemo or the radioactive microspheres?

Your husband's story is significant. As you can see from the various Forums here at chlangiocarcinoma.org, most people are put on palliative chemo and left to die. Recently diagnosed patients should immediately get brachytherapy and then try to get into a transplant program. I am interested in whether the Ohio State doctors are going to publish anything on this treatment? These results will also help with insurance coverage.

I am really glad that you are doing well. You do havean unusual form of cholangiocarcinoma. I wonder if the cell type in the biopsy is indeed adenocarcinoma. I corresponded with a gentleman last year who was diagnosed with BDC and then found out later to not have the disease. Anyway, enjoy life and one thing that Valerie and I learned was that if you don't need treatment it is best not to disturb the body. Good luck and if you ever need anything please feel free to call or write.

My wife also saw Dr. Alberts at Mayo. He is tremnedously experienced and used to work with Native Americans who are the highest risk for cholangiocarcinoma. Did he discuss with you the liver transplant protocol the Mayo (Dr. Steven Rosen) has pioneered? I posted info on that protocol separately. You may want to send your scans to Dr. William C. Chapman at Barnes-Jewish Hospital in St. Louis, MO. He is also doing it and it may have as much as an 80% cure rate. I also strongly suggest that you contact the University of Utah, Northwestern Uuniversity and Dr. Andrew Kennedy at Wake Oncology in Cary, NC. Dr. Kennedy destroyed my wife's Klatskin tumor in a 2 hour outpatient procedure using Y-90 microspheres. Unfortunately Valerie's cancer had metastasized to her peritoneum by the time we found Dr. Kenedy. Good luck. Call me if you want to talk. 808-753-0290. I am in Honolulu.

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

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

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(7 replies, posted in Clinical Trials)

Yes. It is a brilliant treatment. My wife had it last year in July at Wake Oncology and it destroyed her Klatskin tumor in a 2 hour outpatient procedure. Unfortunately by the time we learned of the procedure the cancer had spread to her peritoneum. You must find a doctor who does a lot of these and don't be discouraged by doctors who are negative about the treatment. The top doctor in the country for SIRT is Andrew Kennedy at Wake Oncology in Cary, NC. The university of Utah has also recently published a paper on success of this treatment for unresectable cholangiocarcinoma as has Northwestern University. Call me if you have questions (808-753-0290). I am in Honolulu. Act swiftly as the doubling time for cholangiocarcinoma is 3 to 6 months. Also look into the liver transplant innovations at the Mayo Clinic in Rochester under Dr. Steven Rosen. They think they will have an 80% cure rate. Other Centers doing this are Barnes-Jewish Hospital in St. Louis (Dr. William C. Chapman) and the university of Nebraska. I will post that information separately. My wife died needlessly. We learned about treatments too late. The doctors didn't tell us about these well accepted treatments. Dr. Kennedy at Wake Oncology will quickly review scans and get back to you. You can use my name with both Dr. Kennedy and Dr. Chapman.

Wayne Parsons
wparsons@hawaii.rr.com

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