1 Topic by jur777 (edited by jur777 Wed, 10 Dec 2008 15:45:15)

  • Registered: Wed, 10 Dec 2008
  • Posts: 49

Topic: Gamma Knife at Mayo clinic

Hi all - I'm new to the site. Last month I was diagnosed with PSC and last week they confirmed I have cholangiocarcinoma. My gastroenterologist was going to send me to Memorial Sloan-Kettering in NYC but after talking with the specialist there, he doesn't think surgery is the best option right now.

He has recommended I go to Rochester, MN to the Mayo Clinic to see Dr. Axel Grothey, a GI medical oncologist. I believe he's going to perform Gamma Knife stereotactic radiosurgery: http://www.mayoclinic.org/stereotactic- … knife.html

I read some accounts of Cyberknife treatment here on the site. I'm assuming it's the same treatment. But the accounts here all seem to be 2 years or older. Has anyone had this procedure recently? Anyone know anything about Dr. Grothey? Can anyone give me info about the Mayo Clinic and places for my family to stay for extended periods of time for cheap? We'll be traveling from NJ to get there.

Thanks
John

UC 1996
PSC 2008
CC 2008

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,215

Re: Gamma Knife at Mayo clinic

Hi John and welcome to the best little club in the world that no one wishes to join! My husband is scheduled for cyber knife next week, the 16th for 5 treatments. He had a Whipple surgery 3 years ago and the cancer returned where the duodenum used to be. His cancer was contained int he bile duct valve. I have heard of Gamma but do not know in what cases they used it. With cyber knife the mass must be 6cn or under. I know that someone on this board will be able to answer you better about Gamma but I do know that Mayo in MN is one of the best. Good luck and keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • JeffG
  • Moderator
  • Offline
  • From: Kansas
  • Registered: Mon, 16 Oct 2006
  • Posts: 1,242

Re: Gamma Knife at Mayo clinic

Hi John, their is plenty of places to stay at Mayo, MN.  The further out the cheaper and most provide free shuttle bus service right to the front door. If you go to the mayo site they will have a link to place where to stay.Wish you the best,
Jeff

Take it to the Limit,One More Time! (Eagles)
  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Gamma Knife at Mayo clinic

hello jur777....welcome to the site.  Cyberknife radiation differs from Gamma Knife.  You may read up on either Cyberknife and Gamma knife by using the google search function.  You may also want to seek out additional opinions by forwarding your records to other physicians specializing in Bile Duct Cancer/Cholangiocarcinoma.  Please, keep us posted about your upcoming visit. 
Sending tons of good wishes your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • Jean
  • All-Star
  • Offline
  • From: Seattle, WA
  • Registered: Tue, 13 May 2008
  • Posts: 163

Re: Gamma Knife at Mayo clinic

Hi John

Welcome...I wish so much that none of us were here!  But, I think you'll find this to be a wonderful, caring and supportive group of people with a lot of knowledge.

I wanted to respond to your post about Gamma Knife treatment.  It is only used for intracranial tumors...brain tumors or brain metastasis.  I think what you're talking about is the Cyberknife, as it can be used for a tumor anywhere in the body, including the brain.  Lainy's Teddy is having it done soon. His is following a course of external beam (IMRT) radiation treatments.  Cyberknife is able to very accurately target the tumor and spare the surrounding tissues.  A large dose of radiation can be given in just a few doses.  It has proven to be a very good treatment and people seem to tolerate it really quite well, with fewer side effects than external beam radiation. 

Anyway, I hope that helps!  I am wishing all the best for you and be sure to ask any questions that come up...someone here usually has an answer!

Jean

  • Registered: Tue, 26 Dec 2006
  • Posts: 40

Re: Gamma Knife at Mayo clinic

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

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,215

Re: Gamma Knife at Mayo clinic

EXCELLENT post Wayne. One of the best we have ever had. Right up to date on what one can do. Thank you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Chicago, IL
  • Registered: Sun, 15 Jun 2008
  • Posts: 710

Re: Gamma Knife at Mayo clinic

Lainy, I second that emotion! Great post, Wayne! You are right, cancer is a race against time, we have to take this thing by the lapels and show it who's running this show!

Patty

tiapatty's Website

  • Registered: Tue, 26 Dec 2006
  • Posts: 40

Re: Gamma Knife at Mayo clinic

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.

  • Registered: Wed, 10 Dec 2008
  • Posts: 49

Re: Gamma Knife at Mayo clinic

Wayne - Thank you so much for all of the great, detailed information. Gives me alot of hope. The oncologist that I was recommended to is Dr. Axel Grothey. My gastroenterologist initially recommended a Dr. Fong at Memorial Sloan-Kettering. After Dr. Fong reviewed my records, he recommended Dr. Grothey at Mayo.

I should be getting an appointment call from Mayo on Monday or Tuesday. I'll be sure to update everyone as things develop.

Many thanks again
John

  • Registered: Tue, 26 Dec 2006
  • Posts: 40

Re: Gamma Knife at Mayo clinic

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.

  • Registered: Tue, 26 Dec 2006
  • Posts: 40

Re: Gamma Knife at Mayo clinic

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.

  • Registered: Tue, 26 Dec 2006
  • Posts: 40

Re: Gamma Knife at Mayo clinic

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

  • Registered: Tue, 26 Dec 2006
  • Posts: 40

Re: Gamma Knife at Mayo clinic

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