August 15, 2011 at 10:16 pm #23660
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.August 15, 2011 at 9:35 pm #23659equipmentlizardMember
First off, I’d like to sincerely apologize for posting in a thread that’s clearly pretty old. I just wanted to come on here really fast to thank you all graciously for the positive words and logical messages. It’s true what they say — only fools live their lives in absolutes.
When you think about the number of people with different immune systems and lifestyles, people will react differently to various treatments. In short, you never know what will happen. Just try to stay as strong and positive as possible. I think Raye here is living proof of that! Getting a liver transplant (or any transplant for that matter) can be very hit or miss. Bless you for staying so strong! You’ll be in my thoughts!!!January 31, 2009 at 11:26 pm #23658
Great to hear from you Raye and congratulations on that big 1 yr. anniversary. To the rest of the cc readers, yes Raye is a wealth of knowledge & an inspiration!
Dad is holding his own, thanks for asking. He’s been doing chemo since since early Nov. & scans are due in the next couple weeks to determine how they will move forward with radiation (likely brachytherapy via the biliary cath). We’ll keep you posted.
Wishing you well Raye!
TessJanuary 31, 2009 at 7:35 pm #23657marionsModerator
Hello RayeJanuary 31, 2009 at 6:33 pm #23656rayeMember
Tess. How are you and your Dad? Sorry everyone for not attending to the forums more often but I’ve been busy here in Canada supporting lots of people from the U.S. and Canada during their CC diagnosis.
In answer to the Mayo being tougher with their standards for liver transplant, I believe it’s really based on the Liver Foundation of America’s acceptance of patients and their criteria for organ donation. Our family didn’t wait for a cadaver organ and we went the live donor method with my oldest daughter being the donor. I would have been waiting much longer for the MELD score to improve and we decided we couldn’t wait. By this time I was really a desperate liver patient and had been having red blood cell problems and receiving blood transfusions regularly, which was not recommended at the frequency I was having them.
Once again if anyone in Canada or elsewhere needs someone to talk to and/or get informed about CC in Canada and funding in any of the provinces, please give me a call at 1-519-351-4406 or e-mail me at firstname.lastname@example.org.
I have an information form ready for Canadian citizens, particularly Ontario, that may be quite helpful in dealing with out of country government funding. It will guide you to obtaining the proper Ministry of Health forms and procedures for your doctor or specialist to follow for funding purposes.
Remember, no question is not important.
On a bright note, my one year anniversary for my transplant at the Mayo is coming up March 20 and I’m looking forward to going back to the Mayo for my checkup!!
RayeDecember 30, 2008 at 12:24 am #23655
Hi Joyce. Very interesting about the Vietnam connections…. I sense that exposure to Agent Orange is continuing to catch up with many as well, in the form of new cancers. It is very interesting how the conflict continues to live on. I spent a couple years in South East Asia, in Laos, but my father was not in the war and has never been to the region.
My husband’s grandfather also died of cc, at 72 yrs. of age, in 1998. He was a long time farmer here in the area.
You’re right, this site is absolutely a great resource! Wishing you the best, neighbor!
-TessDecember 30, 2008 at 12:06 am #23654jcleggMember
I am sorry I didn’t get your e-mail – I don’t know what happened – maybe the spam filter worked too hard that day! I agree about the “Cancer ZOne” – there is a big one in Endicott – from IBM and EJ waste products, etc. However, I think my husband’s problem stems from his Vietnam service – I am pretty sure – parasites in the water supply are known to preceed CC.
You ARE close to me, as I am half way to Owego, just over the Tioga County border.
This site is a wonderful resource for information, and the people who correspond here are just the best people. I have derived so much comfort from communicating with them, in addition to learning so much about CC.
Joyce C.December 29, 2008 at 3:46 pm #23653
Hi Lainy, I wonder if the Foundation has any data on this, or if there is any formal tracking? I could imagine benefits to patient profiling (i.e. seeking potential commonalities such as the noted sugar substitute thread). Parameters of potential relevance may include location, diet, work, age, lifestyle, health history, etc. A challenge would be how to respectfully acquire such data, via this forum, from patients and families that are often in the emotive throws of despair, grief, hope, and the other 3 million emotional side effects! Today this cancer is ‘rare’ but one day the dots will more strongly be connected & answers/remedies/solutions will surface. .. I pray that will be sooner than later.
TessDecember 29, 2008 at 3:30 pm #23652lainyMember
Hi Tess. Funny you should say that about the “cancer zone”. I have watched where people are from and it seems heavier on the East Coast, then the West then central. Interesting.December 29, 2008 at 3:12 pm #23651
Hello Joyce, thanks for your note. I had sent you an e-mail a couple weeks ago (as opposed to a public posting), to say hello, thank you for sharing your website and to tell you how sorry I was to hear about Butch. The close proximity of our loved ones – for such a ‘rare’ cancer, raised a red flag in my mind… my parents have long argued that this region (particularly their neighborhood)- is a prosperous cancer cluster. I definitely think that these potential cancer zones deserve more research, the dots have yet to be connected, as cc catalyst remains undetermined.
We are down the road just a bit, in Waverly… but neighbors none the less!
Thinking of you in the new year Joyce, and wishing you strength.
TessDecember 29, 2008 at 11:51 am #23650jcleggMember
I was just reading this thread for the 1st time, and realized that you are in Binghamton. I am in Endicott! What a coincidence that we are so close when this is such a rare cancer! I just wanted to say hello and good luck to you and your Dad. May God bless him with his mercy.
PS – For everyone else – Binghamton and Endicott are next to one another in south central New York. They afre practically the same place!December 29, 2008 at 7:51 am #23649
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.December 29, 2008 at 5:57 am #23648
Hello again Dane, I wanted to touch base again on the I.V. Nutrition-integrative approach. I asked Mom to share your experiences with Dad’s doc. He indicated that he has heard of such an approach but is not in favor. His argument…. he asserts that not enough research has been done on which cells the nutrition supplements are feeding, further asserting that perhaps they are going to the bad cells – thereby defeating the purpose of the chemo. He does not recommend it for Dad. I asked Mom to please share your note with the hospital nutritionalist for additional insights. Can you direct me to any studies that may lend additional credence in support of the I.V. nutrition/chemo/radiation/resection integrative approach?
TessDecember 18, 2008 at 7:00 pm #23647
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.December 17, 2008 at 2:02 pm #23646
Dane, thanks so much to you for your thoughtful response. I sent the info on to my Mom, as she attends all of Dad’s appointments with him. She said that reading about your Mom was like reading about a miracle woman!
Dad’s doctors have had no suggestions regarding supplements (oral/IV) & she is going to share your note to both the oncologist and the nutritionalist.
It is so wonderful to hear about your Mom, and I’m so happy for your whole family.
My Dad can use all the energy sources he can secure, as he’s so very lethargic at this point.
You are right to say that so often patients and their families are on their own to do their own research…. and thank goodness we have this source to compile/compare/contrast the data- so that we can learn from each other.
Keep up the great work!
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