June 17, 2014 at 12:27 am #83035jathy1125Participant
Duke I am a 5 year cancer free CC survivor thanks to God, 2 strangers and Dr. Chapman. Dr. Chapman saved my life twice. I was blessed by my first miracle, that the doctor who diagnosed me knew my only HOPE was a transplant trial with Dr. Chapman. I skipped all the nonsense that most CC patients must go through looking for HOPE and answers, because I had a gastronoligst who was educated in CC and all the options out there.
I have shared my story so many times as Wayne has that at least 4 families have had contacted Dr. Chapman and have had there whole prognosois changed. I also know of women in Texas who was told by her doctor, who one HOPE was to contact Dr. Chapman and see if saw something he didn’t, that is a sign of of a great doctor, the patient before his ego. Dr. Chapman couldn’t help her. Last week Dr. Chapman had 2 CC patients on the transplant floor (one for a resection and one for a transplant) because I could share my story on our site. The transplant patient was told he wasn’t a candidate for transplantation by the Mayo Clinic. I am sure Brenda will add more of her journey to save her husband later.
Duke I use this forum to let people know there is HOPE, I am not medically savey, I just know there is an educated kind and caring man out there who knows CC. I agree with Wayne, doctors should be helping us find educated doctors who have had success with curing CC, Thanks to Dr. Chapman I am not only a cancer survivor, I can say I am cured. The one thing my hero, Dr. Chapman, Wayne and I always want people to know have your options for a transplant or resection ruled out by someone who believes they are an option.
I HOPE more CC patients can run marathons 6 months later like Daisy’s mom, I HOPE more CC survivors hit the 5 year cancer free mark to say they are cured……
Thank you Wayne for being such an advocate for CC and all you do to let people know about our HERO even after your story didn’t have the perfect ending.
CathyJune 16, 2014 at 10:19 pm #83034darlaParticipant
I agree. This is totally unacceptable. Especially that doctor’s attitude. Good call not listening to him. Glad all is well and mom is doing good.
DarlaJune 16, 2014 at 9:03 pm #83041lainyMember
Amen to your Post, Daisy. Don’t use precious time in your life on what could have beens, Yesterday is past, tomorrow is in the future and today is the present, a gift. And I love that your are tenacious! That is meant as a compliment.June 16, 2014 at 8:39 pm #83040daisyParticipant
Just want to clarify it was Dana Farber and Hartford Hospital that missed the boat in my mothers case not MSK. In Wayne’s case I believe it was MSK. Crazy thing I neglected to mention…when our local doctor found out about our success he wasn’t even happy…..apparently he ego must of been bruised. He should of been excited and wanting to learn everything that took place to make his INOPERABLE TERMINAL patient not cancer free. And again YES I know reoccurrence is high but we have had a quality 10 months post surgery. Instead he scolded me as if I was an unruly child. Good thing for my mom I am and did not listen to that doctor!!!
It just sickens me that this is happening and we need to get the word out there that something can be done….maybe not everyone but some???
Another successful resection done by Dr. Chapman last month story similar to my mothers. This women’s son found Wayne’s article just like me….question is WHY AERNT OUR DOCTORS OFFERING THIS OPTION TO US?!?!?!!!! It took close to 8 weeks from diagnosis to surgery if our doctor sent us there right away it could of meant no lymph involvement?? We will never know.June 16, 2014 at 8:00 pm #83039dukenukemMember
MSK is supposed to be top shelf. Unforgivable that they missed this.
Which gets back to the importance of early diagnosis and treatment. And getting the word out to oncs who have little or no cc experience. And second/third opinions.June 16, 2014 at 7:30 pm #83038lainyMember
Hi Daisy! I am so happy to read how well your Mother is doing and how awesome that you ran together! I KNOW it is not scientific but I still believe that a lot of our decision are based on our gut feelings! Yours is just another story of HOPE and MIRACLES and a ton of gut! Enjoy every moment!June 16, 2014 at 7:09 pm #83037daisyParticipant
I need to chime in Duke. My mother was diagnosed almost 1 year ago to the day. It was June 19th. After close to a month of tests and surgery for stents we were told that she had a “Klatkins tumor” which we later found out was not the case and that she was inoperable. We had 4 doctors in Connecticut tell us that and a final opinion from Dana Farber saying the same. INOPERABLE 3/6 months with no chemo 6/12 with chemo. My mom had a 7 cm tumor on her liver/bilary duct. We were shocked to say the least considering my mother is a marathon runner who at the time just completed one not long before he diagnosis. It was very late one evening that I read Wayne’s article about his wife. I didn’t think much about it at the time but a few days later I read another from a double transplant CC survivor….both articles mentioning Dr. Chapman. I figured I had nothing to loose and if I did nothing I would be loosing my mother. I contacted Cathy and Wayne spoke to them about their experiences with Dr. Chapman and decided to contact his office at Barnes. I did just that and a week later my parents flew out there and I followed shortly after. My mother had a complete resection and followed up with 6months of chemo. In April we ran a 10k together and this past weekend she ran a 5k with my son. Yes the chance of reoccurrence is high but she has had an amazing year and as of today is cancer free. Big change from last year…if I listened to the CT doctors I would be planning a funeral around this time…..instead I am planning the next race we run together. Our doctor never told us that this surgery was an option EVER!! Hard to believe isn’t it???.June 16, 2014 at 6:15 am #83045wayneMember
My wife and I were not told about this treatment at Memorial Sloane Kettering Cancer Center shortly after she was diagnosed. She was 57 and in perfect health. I asked about “liver transplant” since she had a Klatskin tumor which was un-resectable. The doctors said that when they did a liver transplant, a technique that had been used for 50 years, the cholangiocarcinoma came back 90% of the time and so it would be illegal to do it now. I asked if there were any other clinical trials or new treatments that offered hope and the doctors said “no”. It was 2006, 4 years after the Mayo Clinic published the peer reviewed journal article recounting patients that appeared to have been cured with the new protocol. It isn’t just a liver transplant. That generally (90% of the time) does not stop cholangiocarcinoma. The protocol requires two courses of specialized chemotherapy and intensive external beam radiation to “cleanse” the patient of cancer cells in the blood and knock the tumor back prior to liver transplant. My wife was not metastatic when she was diagnosed because we caught it early through a blood test. Since she died I have received nearly 100 inquiries from patients who saw my post on this Forum and other cancer forums. None of them had been told by their doctors about this option. They only learned about it from reading my posts. For example a lady who was being treated at Yale University Medical Center immediately sent her files to Dr. Chapman in St. Louis and was put into the protocol. She received a liver transplant and is now alive and appears to be cured. She was given no hope at Yale. A patient at Dana Farber Cancer Center at Harvard called after reading my article and reported that she also was not told about the protocol. If your point is that doctors should not tell patients that there may be a cure for their cancer then I cannot agree with you. If you believe that doctors are telling their patients about the protocol then I can tell you that you are wrong about that from personal experience. Shouldn’t we all be helping newly diagnosed patients find out what their options are? That is all I am asking. At Mayo and Barnes-Jewish Hospital they also treat some cases with resection if it is possible to do that but the tumors are often near the portal vein and resection is not safe. For anyone on the this forum who wants a copy of the study refer to I will provide it if they email me at firstname.lastname@example.org or call me on my cell phone which is in my original post. Another easy option is simply to call Dr. Chapman or the Mayo Clinic and ask about the treatment. I hope that you understand that all I want to do is get the word out to patients and since I have received 10 calls or emails this year from patients who were not told about it, I know that there is a problem.June 16, 2014 at 4:21 am #83042dukenukemMember
Don’t take this personally Wayne, but I have issues with some of your statements.
From what I’ve read on this site, the majority of patients have metasteses which rules them out out at step one. Therefore, I don’t think oncs are hiding anything from patients.
When you read the stories on this site of long-term survivors, they seem to be primarily those who were detected before mets and were able to have resection(s). Even some of those were only temporarily successful. Clearly, a new liver into a body without mets provides the best chance for long term survival. But there just aren’t that many of those. Us “old people over 60” who were not discovered until Stage IV are just SOL. This is one thing I am hoping the Registry will shed light on: just who are the long term survivors and what do they have in common.
I found a summary of the article but it looks like you need to spend $35 to get the full article. Maybe Gavin can find it for free somewhere. Here is the Reader’s Digest version:
“We collected and analyzed data from 12 large-volume transplant centers in the United States. These centers met the inclusion criteria of treating 3 or more patients with perihilar cholangiocarcinoma using neoadjuvant therapy, followed by liver transplantation, from 1993 to 2010 (n = 287 total patients). Center-specific protocols and medical charts were reviewed on-site.”
“The patients completed external radiation (99%), brachytherapy (75%), radiosensitizing therapy (98%), and/or maintenance chemotherapy (65%). Seventy-one patients dropped out before liver transplantation (rate, 11.5% in 3 months). Intent-to-treat survival rates were 68% and 53%, 2 and 5 years after therapy, respectively; post-transplant, recurrence-free survival rates were 78% and 65%, respectively. Patients outside the United Network of Organ Sharing criteria (those with tumor mass >3 cm, transperitoneal tumor biopsy, or metastatic disease) or with a prior malignancy had significantly shorter survival times (P < .001). There were no differences in outcomes among patients based on differences in surgical staging or brachytherapy. Although most patients came from 1 center (n = 193), the other 11 centers had similar survival times after therapy." “Patients with perihilar cholangiocarcinoma who were treated with neoadjuvant therapy followed up by liver transplantation at 12 US centers had a 65% rate of recurrence-free survival after 5 years, showing this therapy to be highly effective. An 11.5% drop-out rate after 3.5 months of therapy indicates the appropriateness of the MELD exception. Rigorous selection is important for the continued success of this treatment.” Carefully read the last sentence. This is also referred to as “cherry picking” or “picking the low hanging fruit”. I could not find a reference to the 12 centers. For those fortunate to have discovered cc while it was still small and had not metastasized, count your blessings. We are happy for you. DukeJune 15, 2014 at 7:44 pm #10172wayneMember
It looks like there is a cure for those who qualify. The Mayo Clinic created a treatment in 2002 that produces a 65% cancer-free survival for bile duct cancer at 5 years. Dr. William C. Chapman at Washington University in St. Louis, MO has been doing this treatment successfully at Barnes Jewish Hospital and other centers in Ireland and Europe since 2005 and has cured a number of patients with unresectable Klatskin and other BDC tumors (intrahepatic cholangiocarcinoma). The treatment protocol is now performed at 12 US cancer centers.
Gastroenterology. 2012 Jul;143(1):88-98.e3; quiz e14. doi: 10.1053/j.gastro.2012.04.008. Epub 2012 Apr 12. “Efficacy of neoadjuvant chemoradiation, followed by liver transplantation, for perihilar cholangiocarcinoma at 12 US centers.”
Read that article and become your own advocate. The problem is that most oncologists do not inform their BDC patients of this option and most cancer centers that do not perform the protocol do not tell their patients about it. Why not? There are numerous peer reviewed papers on the subject all showing very favorable outcomes and high cure rates. Even on this website the treatment is mentioned but only with a lot of negative commentary that a patient may not qualify and no clear simple direction on what to do to find out if you qualify.
With a 5-year survival rate of less than 10% for standard treatments, shouldn’t every person diagnosed with cholangiocarcinoma be immediately told about the protocol and told to send their scans and records to one of the 12 cancers mentioned in the above article to find out if they might qualify? It won’t cost anything other than postage to do that and Dr. Chapman and others like him who are curing this devastating disease will quickly review the case at no charge to see if there is hope.
My wife died of BDC in 2008. We were not told about this treatment at any of the centers I contacted even though the studies have been widely known in the cancer oncology community since the first major peer reviewed paper was published in 2002 by Dr. Steven Rosen at the Mayo Clinic in Rochester, MN. I will admit it angers me that the first thing a BDC patient hears when they get the dire diagnosis and prognosis from their doctor, is NOT a reference to this protocol and to the 12 cancer centers, and an offer to assist in immediately transmitting the file to one of those centers for review. What is happening is that the treating oncologist withholds the information from the patient and gives the patient (very expensive) treatments that have little more than a 10% chance of success.
We all know at the outset that this diagnosis is a tough one. If the BDC has metastasized outside the liver the treatment is not available. If a person is old and has other complications it may be difficult to get a liver for transplant. But many BDC patients are in the 35 t0 60 years old range and healthy. There is hope and there is a cure and I know people who are cured today because they got the liver transplant after specialized “cleansing” chemo and radiation at one of these centers. Call Dr. Chapman in St. Louis or any of the Mayo Clinic Centers and they will quickly get your case evaluated. Or call me at 808-753-0290 and I will share my experiences with you and connect you with patients who have been successfully treated.
For the doctors who don’t give their patients this information they will have to live with the knowledge that, if that patient dies of BDC, the doctor let it happen perhaps unnecessarily.
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