wayne

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  • in reply to: Mayo protocol has 65% BDC cancer free at 5 years #83045
    wayne
    Participant

    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 wparsons@hawaii.rr.com 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.

    in reply to: 80% Survival Rate at Mayo Clinic #23660
    wayne
    Participant

    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.

    in reply to: Ask your oncologist to look into this #49643
    wayne
    Participant

    It has been a while since I posted on the neo-adjuvant chemo/radiation followed by liver transplant protocol that is being done at Barnes-Jewish Hospital in St. Louis by Dr. William C. Chapman, but he and other centers like Mayo Clinic in Rochester, MN, Jacksonville, FL and the University of Nebraska are curing patients with Klatskin’s tumors. It is amazing that few doctors are referring their cholangiocarcinoma patients to Dr. Chapman or the other centers who do this procedure. (314) 362-7792

    It appears to be a cure with a survival rate predicted at above 80%. Timing is crucial so don’t let your oncologist say it doesn’t work. I am in contact with and following survivors.

    Call me if you have questions: 808-753-0290

    in reply to: Ask your oncologist to look into this #49642
    wayne
    Participant

    Is anyone aware of Amla? Amla (Emblica officinalis Gaertn), a wonder berry
    in the treatment and prevention of cancer

    in reply to: 80% Survival Rate at Mayo Clinic #23649
    wayne
    Participant

    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.

    in reply to: 80% Survival Rate at Mayo Clinic #23647
    wayne
    Participant

    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.

    in reply to: 80% Survival Rate at Mayo Clinic #23642
    wayne
    Participant

    Tess: Interesting. When you say “cath” do you mean a drain tube was placed above the tumor to drain the bile as opposed to a stent (short tube placed in the bile duct itself to open up the flow)? a > 3-inch tumor is fairly large and maybe it is too big for the Yttrium 90 microspheres. The y-(0 microsphere treatment is a form of brachytherapy ca;lled radioembolization. Your dad is going to get Chemoembolization it sounds like where a chemo drug is sent directly into the tumor. The other problem with this particular adenocarcinoma type of tumor is that they tend not to reduce in size. But some do so let’s see what happens with your dad. Gemcitibine is mild on side effects. Where is your dad getting treatment? It might be wortnh a try to send your dad’s scans to University of California San Francisco (UCSF) or to Stanford for evaluation of cyberknife. Another new option (expensive and hard to get into) is “proton Therapy. Only a few centers exist. Huge amounts of energy can be put into a solid tumor without damaging surrounding tissue. Did the biopsy for your dad show cholangiocarcinoma and not metastatic colon cancer? It would be unlikely for mCrc to show up in the bile ducts but anything is possible. Let me know if there is anything I can do. Dr. William C. Chapman at Barnes-Jewish in St. Louis might be worth calling or sending scans to – give them my name. He is a great liver surgeon and he is a fighter when it comes to cholangiocarcinoma.

    in reply to: 80% Survival Rate at Mayo Clinic #23640
    wayne
    Participant

    Where is the tumor in the bile duct tree? Is it classified as Klatskin? The elevated bilirubin is not uncommon and a blockage of the bile flow and consequent jaundiced is usually how cholangiocarcinoma is diagnosed. The first step after diagnosis in that situation is to have a stent placed endoscopically to open up the flow of bile and reduce the bilirubin to normal. Has that been discussed? I am surprised that your dad was rejected without someone seeing the scans. Blocked bile flow alone is usually not an exclusion and I can assure you that “intraheptaic” is not an exclusion for any of the transplant or radiation protocols. Is your dad really sick? A precarious health status can eliminate liver transplant because they look very closely at whether or not the patient can survive liver transplant and tolerate the neo-adjuvant chemo and radiation that goes along with it. Perhaps the other liver and kidney labs show too much going on and they don’t think your dad can tolerate their prcedures. Valerie’s tumor was at the intersection of major bile ducts and was 2.2 cm when diagnosed. It blocked completely one branch of the tree and that side of the liver was not functioning well, The portal vein was 95% compromised by pressure from the tumor mass. The other side of her liver had enlarged to accomodate the compromised lobe and additional blood supply had grown to accommodate the portal vein closure. Her bilirubin was normal. They stented her to keep things open while she did 5 months of preliminary radition (EGRT) and chemo (gemcitibine and then 5-FU during radiatiuon). The 5-Fu is also a radiosensitizing agent that makes the radiation more effective. She had several exploratory surgeries to confirm no metastasis to other nearby structures. The most common metastasis is to the liver, then to nearby lymph nodes and then the peritoneum or colon. During all of this valerie remained extremely healthy and had no liver function compromise. Maybe that is where your dad differs. I met other patients in the program at barnes-Jewish hospital and they all came in with jaundice and were stented. I provide this detail for those who are starting out in hopes that some of these facts may help understand or have a dialogue with doctors. I follow the Lance Armstrong philosophy and Valerie almost made it through this devastating disease.

    in reply to: 80% Survival Rate at Mayo Clinic #23638
    wayne
    Participant

    Dr. Chapman who put my wife in the liver transplant rogram at barnes-Jewish Hopsital in St. Louis said that a key screening factor is how advanced the cancer is and the health of the patient. I know that Mayo does perform liver transplant on intrahepatic cholangiocarcinoma but many patients do not qualify. I am glad that Tess continues to ask questions and seek new treatments. Good luck.

    in reply to: Gamma Knife at Mayo clinic #24853
    wayne
    Participant

    My last post for the night. A very interesting positive result:

    http://cat.inist.fr/?aModele=afficheN&cpsidt=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

    in reply to: Gamma Knife at Mayo clinic #24852
    wayne
    Participant

    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/journal/121392064/abstract?CRETRY=1&SRETRY=0

    in reply to: Gamma Knife at Mayo clinic #24851
    wayne
    Participant

    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.

    in reply to: Gamma Knife at Mayo clinic #24850
    wayne
    Participant

    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.

    in reply to: Gamma Knife at Mayo clinic #24848
    wayne
    Participant

    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.

    in reply to: Gamma Knife at Mayo clinic #24845
    wayne
    Participant

    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

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