One patient with glioblastoma still alive nine years later
by Flower1 on Sun Apr 01, 2007 12:00 AM
My name is Iris. I am 61 years old, married and we have two wonderful grown-up sons. Last week my husband (also 61) was diagnosed with a Klatskin tumor. He is a very sportive, young looking guy, who allways lived a healthy life. Having heard this Klatskin name, I went on-line and discovered this forum. In one way it scares the hell out of me, in another way it comforts me.
Some of the patients writing, had been diagnosed with this cancer in 2004 and 2005. That gives me at least hope that we can have another few years together.
I have not told my husband about this forum yet. Mondaymorning he will get a ct-scan and after that we hear whether his cancer can be removed by surgery. I want him to have a positive hope, so that is why I went on this board en not he. If the outcome of the ct-scan and surgery are bad, he will hear soon enough.
Thanks for listening to me and I wish everyone who has this cancer or has it in the family all te best and strength.
by Witchdoctor on Sun Apr 01, 2007 12:00 AM
A PET CT scan would provide a better anwer with regards to local and/or spread of the disease. Surgery if possible is the best primary treatment, but aduvant chemo and radiation may also be used.
by Evan14 on Wed Apr 11, 2007 12:00 AM
Hello Iris, I’m sorry to hear of your husband’s diagnosis. My wife Dawn was diagnosed with a Klatskin’s tumor in December of 2005. She had liver resection surgery in Jan 2006 and has is cancer free today.
by Flower1 on Wed Apr 18, 2007 12:00 AM
On 4/11/2007 Evan14 wrote:Hello Iris, I’m sorry to hear of your husband’s diagnosis. My wife Dawn was diagnosed with a Klatskin’s tumor in December of 2005. She had liver resection surgery in Jan 2006 and has is cancer free today. God Bless Richard
Thank you for your mail. This gives hope. My husband is due for surgery within 14 days now, but prognosis do not look to good. Still, he is strong and in fighting spirit. That too gives hope.
I pray that your wife will stay o.k. Thanks for your message.
by Honolulu on Fri May 04, 2007 12:00 AM
On 4/1/2007 Flower1 wrote:Hi,My name is Iris. I am 61 years old, married and we have two wonderful grown-up sons. Last week my husband (also 61) was diagnosed with a Klatskin tumor. He is a very sportive, young looking guy, who allways lived a healthy life. Having heard this Klatskin name, I went on-line and discovered this forum. In one way it scares the hell out of me, in another way it comforts me.Some of the patients writing, had been diagnosed with this cancer in 2004 and 2005. That gives me at least hope that we can have another few years together.I have not told my husband about this forum yet. Mondaymorning he will get a ct-scan and after that we hear whether his cancer can be removed by surgery. I want him to have a positive hope, so that is why I went on this board en not he. If the outcome of the ct-scan and surgery are bad, he will hear soon enough.Thanks for listening to me and I wish everyone who has this cancer or has it in the family all te best and strength.
My wife was diagnosed last fall and we went to Sloane Kettering un NYC where they told us that almost all Kaltskin tumors are inoperable. Before I go on don't get depressed because there is hope. They told us that there was no cure. They said that when they take these tumors out that they return over 80% of the time. I asked if they can transplant the whole liver. They said that when you remove and transplant the liver the cancer returns over 80% of the time. Slaone Kettering does do transplants any more for this cancer for this reason.
Now the good news. The Mayo Clinic developed a new technique for liver transplant that potentially could have over 80% cure rates. You should contact the Mayo Clinic and you should contact Barnes Jewish Hospital in St. Louis. Speak with Dr. William Chapman who is a world famous liver surgeon who is heading up a program that is using the Mayo protocol. My wife is in that program and we are very impressed. Ask your oncologist about it. Here is an excerpt from a recent paper from the mayo Clinic on their experiences.
Treatment Options for Hepatobiliary and Pancreatic Cancer
Hepatobiliary and pancreatic cancers account for 4% of all cancers in the United States. Traditionally, these cancers have had a high mortality rate and have been poorly responsive to therapy. Because of a growing number of reatment options, patients are now living longer. For hepatocellular carcinoma, a broad number of treatment options are available, including surgery, ablation, embolization, systemic therapy, and liver transplantation. Treatment options for cholangiocarcinoma include surgery, systemic therapy, and liver transplantation. For pancreatic cancer, surgery, radiation, and systemic therapy all have potential roles. This review provides an updated summary of diagnosis and assessment together with treatment options for this group of cancers.
by Flower1 on Sat May 05, 2007 12:00 AM
Thank you for responding my mail.
My husband had surgery yesterday-morning. The liver-specialists stopped almost immediately. The tumors in the bile ducts and the liver were too large and there already was a tumor going to the pancreas.
Our hopes have gone, but at least we'll have a couple of months.
But I still shall take the news you gave me to the specialists and who knows.
I hope your wife will respond well to her treatment and wish you and her the very best.
Kind regards, Iris.
by Honolulu on Fri May 25, 2007 12:00 AM
Do not accept a bad result. My wife has an inoperable Kaltskin's tumor. Memorial Sloane Kettering Dr. DeMatteo told her that there was no cure and that she had no chance of survival. She is now hoping to be cured at Barnes Jewish Hospital in St. Louis by Dr. William Chapman with a treament protocol that was developed at the Mayo Clinic. Below are my notes on this treatment. Do not accept defeat!
We are headed back to St. Louis next week. First we meet with the head of the team, Dr. William Chapman for an overall discussion of the upcoming events. That day Valerie will have full contrast scans of her entire trunk to see if the cancer has spread. If that test shows no spread, she then has surgery (laparotomy) on the 15th to allow the doctors to examine the liver and the tumor and the surrounding bile ducts. If she passes these two hurdles then she goes ona transplant wait list in early June and stays in St. Louis through the summer until a liver becomes available.
Thanks to Ken Cribbs we have a great report from the Mayo Clinic that shows why Valerie has chosen the protocol in St. Louis that derived from the earlier work dating back to 1993 at Mayo Clinic. For your information Valerie has a tumor inside the liver and inside her bile ducts at the base of the liver where the two major blood veins enter the liver. In the article they refer to her cancer as "hilar cholangiocarcinoma". The title of the paper is:
The authors are:
STEVEN R. ALBERTS, MD, MPH; GREGORY J. GORES, MD; GEORGE P. KIM, MD; LEWIS R. ROBERTS, MBCHB, PHD; MICHAEL L. KENDRICK, MD; CHARLES B. ROSEN, MD; SURESH T. CHARI, MD; AND JAMES A. MARTENSON, MD
The excerpts that refer to their results so far follows. Note that the highlighted red portion because that is what is happening to Valerie in the first two weeks of May. So far so good. May will be the last major hurdle. Then Valerie goes on the transplant list. Here is the Mayo Report segment:
"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. 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%. 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 transplantationwhen combined with effective preoperative therapy."
by Flower1 on Sun May 27, 2007 12:00 AM
Thanks again for your mail. I took the article with me at our list visit to the surgeon and the internist. They knew about this treatment allready. The hopeless point in my husbands case is that the cancer has spread and is going towards the pancreas. We were told that we have weeks to go, rather than months. We are trying to enjoy every day from now that we wake up together and he is feeling good. I can weep afterwards. We had a very wonderful marriage and two wonderfull sons, who are supporting us where they can (they are 29 and 27 years old).
Will you please keep me posted about the situation with your wife? I very much hope that all will work out good with her. I am no religious, but I think of her and you every day. And hope very much that everything will turn out fine. It won't be an easy time, going through surgery and treatments, but when it is worthwhile one can undergo a lot.
All my love, Iris.
by Mcikey on Mon Jun 18, 2007 12:00 AM
I just found this site. I am a 59 female who has a Klatskin tumor. I have had an ultrasound, CT scan, and MRCP so far. I will be having an ERCP this Friday to get a biopsy and see how much blockage there is. After extensive internet searches, I'm glad to find this site. I read this tumor is rare, but it sure sounds like there are lots of us out there with this type of tumor. I'd love to hear from some of you and how you're dealing with this.
by Flower1 on Wed Jun 20, 2007 12:00 AM
On 6/18/2007 Mcikey wrote:Hi, I just found this site. I am a 59 female who has a Klatskin tumor. I have had an ultrasound, CT scan, and MRCP so far. I will be having an ERCP this Friday to get a biopsy and see how much blockage there is. After extensive internet searches, I'm glad to find this site. I read this tumor is rare, but it sure sounds like there are lots of us out there with this type of tumor. I'd love to hear from some of you and how you're dealing with this.Mickey
I sincerely hope that your tumor has been detected in time and you can have surgery. For my husband it is too late. However, we are having wonderful weeks now, since he is without pain and doing quite well. He even went back to work and gained some weight.
Will you please keep me posted how things are going on with you? I wish you the very best and will think of you.
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