Mayo Clinic Protocol may achieve 80% Cure Rate for Kaltskin tumors
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- This topic has 21 replies, 11 voices, and was last updated 15 years, 3 months ago by raye.
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March 23, 2009 at 8:51 pm #23681falkol2002Member
I was diagnosed in Oct, 08. When they went to do the liver re-section, they found 3 lymph nodes. So they aborted the operation. I have been on Gemzar for 3 months. The scans come back showing no further spread, but the tumor is not responding. They now want to add Xeloda and Oxilaplatin as well. However, my insurance willl not cover the Oxilaplatin. “No evidence showing that it works”. I have United Healthcare. They want to see phase 3 clinical trials and there are none for cc.
I also just saw the surgeon again today. He is willing to go back in and resect the liver, but only if there is response to the chemo.
I feel very lost and scared. I have read the great results from the Mayo clinic trials. Not sure if I qualify with the lymph node issue. Other than that I feel great. I do not have any symptoms. The tumor remains contained in the left lobe at this point. The surgeon seems positive that if I respond to the chemo, I should do well.
I live in Connecticut, but will do anything or go anywhere to get help. Do you think I should contact Mayo?
March 21, 2009 at 8:18 pm #23680lainySpectatorYEA! Raye! Another Miracle Man! We love, love, love it. Doesn’t get any better than this.
March 21, 2009 at 7:56 pm #23679marionsModeratorRay, Congratulations. Your one-year anniversary with a clean bill of health is everything one can hope for. I share in your joy and I am looking forward to a yearly report identical to the one just presented by you.
What makes this board so successful is directly related to the sharing of information by everyone and for everyone in order to help and support each other. Due to the high volume of postings your information may easily get lost therefore, I encourage you to engage in conversations on this board. This allows everyone to participate in discussions and therefore, benefitting from the valuable knowledge you have acquired.
You have much to contribute and I thank you for that.
Wishing for continued success,
MarionMarch 21, 2009 at 5:15 pm #23678tiapattyMemberRaye,
This is inspiring news! Thanks for updating us, we need these stories.
Patty
March 21, 2009 at 4:54 pm #23677rayeMemberWell I just received great news during my 1 year liver transplant anniversary at the Mayo Clinic. I have a clean bill of health, a healthy liver, and my bloodwork and cancer marker are all really good.
I couldn’t be better, and haven’t felt this good in over 3 years. I’m very grateful to all the nurses and doctors and health care workers at the Mayo Clinic, my health care providers and friends back here in my local cancer clinic in Canada.
My wife Helen and I have had a ‘blip in the software’ the last 27 months and now our lives are back to normal ( what’s the definition of normal again??) and we’re so fortunate that everything turned out alright. My wife has been and always will be my advocate and best friend. This experience has brought us together in a much different way than we were before the cancer came into our lives. It has been a learning experience for all of us here. I won’t forget my sister Gloria who worried non stop for me all these months, so you can stop worrying now sis’. To quote a phrase George Costanza used all the time from Seinfeld,
” I’m back now baby!!”
Thank you all for the kind words and encouragement here on this site. I kind of indirectly have my own fan club now with people phoning me and e-mailing me for advice and to hear my story. I really try and give people the straight answers and hope that they need. You can beat this thing if you put your mind to it and the circumstances are right. I can also point you towards other contributors on this site who are subject matter experts of CC much more so than I am, and I can point you to these people for more technical answers. This is my mission now, paying forward.
Pleeeease… Anybody who wishes to contact me can e-mail me from here, or at raye.field@yahoo.com, or leave me a message on my land line at 519-351-4406.
My wife will transfer any calls to me by e-mail or phone since I’m working in Indiana right now.
Canadian residents please ask me about my story with the Ministry of Health here in Ontario and I can help you navigate your province’s system to apply for out of country coverage for evaluation and surgery.
October 29, 2008 at 6:15 am #23676rayeMemberI am a CC survivor using this method involving transplant. You may contact me to hear my story of my meeting with Dr. Gregory Gores, Dr. Jim Martenson, and Dr. Julie Heimbach. Truly wonderful people at the Mayo.
There is hope. My surgery was conducted March 20 of 2008 and I’m feeling just wonderful.
The 5 year remission rate now stands at 88% as of this posting.
Raye Field
Chatham Ontario Canada
raye.field@yahoo.comOctober 20, 2008 at 6:31 pm #1663wayneSpectatorEveryone 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 http://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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