wayne
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I do not know what the final diagnosis was. He may have told me in an email but it is buried in a huge set of emails. If I find it I’ll let you know.
When was your husband treated at Ohio State? Was it part of a clinical trial or data collection study? Who was the main doctor? Was it the Mayo liver transplant protocol? And was the brachytherapy used against the bile duct tumor? Was it chemo or the radioactive microspheres?
Your husband’s story is significant. As you can see from the various Forums here at chlangiocarcinoma.org, most people are put on palliative chemo and left to die. Recently diagnosed patients should immediately get brachytherapy and then try to get into a transplant program. I am interested in whether the Ohio State doctors are going to publish anything on this treatment? These results will also help with insurance coverage.
I am really glad that you are doing well. You do havean unusual form of cholangiocarcinoma. I wonder if the cell type in the biopsy is indeed adenocarcinoma. I corresponded with a gentleman last year who was diagnosed with BDC and then found out later to not have the disease. Anyway, enjoy life and one thing that Valerie and I learned was that if you don’t need treatment it is best not to disturb the body. Good luck and if you ever need anything please feel free to call or write.
My wife also saw Dr. Alberts at Mayo. He is tremnedously experienced and used to work with Native Americans who are the highest risk for cholangiocarcinoma. Did he discuss with you the liver transplant protocol the Mayo (Dr. Steven Rosen) has pioneered? I posted info on that protocol separately. You may want to send your scans to Dr. William C. Chapman at Barnes-Jewish Hospital in St. Louis, MO. He is also doing it and it may have as much as an 80% cure rate. I also strongly suggest that you contact the University of Utah, Northwestern Uuniversity and Dr. Andrew Kennedy at Wake Oncology in Cary, NC. Dr. Kennedy destroyed my wife’s Klatskin tumor in a 2 hour outpatient procedure using Y-90 microspheres. Unfortunately Valerie’s cancer had metastasized to her peritoneum by the time we found Dr. Kenedy. Good luck. Call me if you want to talk. 808-753-0290. I am in Honolulu.
Yes. It is a brilliant treatment. My wife had it last year in July at Wake Oncology and it destroyed her Klatskin tumor in a 2 hour outpatient procedure. Unfortunately by the time we learned of the procedure the cancer had spread to her peritoneum. You must find a doctor who does a lot of these and don’t be discouraged by doctors who are negative about the treatment. The top doctor in the country for SIRT is Andrew Kennedy at Wake Oncology in Cary, NC. The university of Utah has also recently published a paper on success of this treatment for unresectable cholangiocarcinoma as has Northwestern University. Call me if you have questions (808-753-0290). I am in Honolulu. Act swiftly as the doubling time for cholangiocarcinoma is 3 to 6 months. Also look into the liver transplant innovations at the Mayo Clinic in Rochester under Dr. Steven Rosen. They think they will have an 80% cure rate. Other Centers doing this are Barnes-Jewish Hospital in St. Louis (Dr. William C. Chapman) and the university of Nebraska. I will post that information separately. My wife died needlessly. We learned about treatments too late. The doctors didn’t tell us about these well accepted treatments. Dr. Kennedy at Wake Oncology will quickly review scans and get back to you. You can use my name with both Dr. Kennedy and Dr. Chapman.
Wayne Parsons
wparsons@hawaii.rr.comI wonder if anyone has fabricated a drug of HDAC called MS-275. It showed powerful impact on cholangiocarcinoma cell lines in vitro back in 2006.
I sent the abstract of the German research to Dr. Steven Alberts MD, one of the top oncologists on cholangiocarcinoma (in his early years as an oncologist he worked with native American populations who suffer higher incidence of bile duct cancer – and Mayo has historically dealt with more BDC patients than any other center) and here is his response:
Dear Mr. Parsons,
Thank you for your e-mail. I hope you are doing well.
In regard to your e-mail, there is actually quite a bit of work going on with HDAC inhibitors in oncology with several agents in clinical trials. I am not currently aware of any work in pancreatic cancer or cholangiocarcinoma. However, I expect that this will occur at some point.
Best wishes,
Steven R. Alberts, MDYes, you can have SIR spheres after external beam radiation and with mets to the lungs. But you must pass an evaluation to make sure the the microspheres will be contained in the tumor. Email me privately for contact info to the best doctor for this.
Sorry for the delayed reply. Dr. Kennedy is fabulous and has a lot of experience with cholangiocarcinoma. He has done many liver tumors and my wife’s unresectable Kaltskin’s tumor is now out of commission. It took two hours and has almost no side effects. Send scans to Kennedy and he will quickly respond if treatment is possible.
My wife is receiving DAVANAT and 5-FU. The DAVANAT works wonderfully but all that means is that the side effects are minimal and she is receiving huge doses of 5-FU (875mg/m). But the CA19-9’s are increasin and that may mean that the 5-FU is not working. Now we want to switch her into a new DAVANAT trial that adds Leucovorin and Avastin. The oncologist wants her to switch to FOLFOX (5-FU and Oxaliplatin) and quit the DAVANAT. I highly recommend DAVANAT but everyone reacts differently to the active chemo drug which in this case is 5-FU. Any thoughts are appreciated.
My wife had an unresectable Klatskin’s tumor derstroyed with SIR spheres by Dr. Andrew Kennedy on July 25, 2007. The procedure last 2 hours, was done with local anesthesiua as an outpatient. Unbelieveable that no one told us about this procedure at Sloan Kettering!? I highly recommend it.
Wayne parsons
808-753-0290I got this from the cancer Compass discussion forum. Also check with Dr. Andrew Kennedy at Wake Radiology in Cary, North Carolina. His microsphere treatments are shaking the cancer world. Also mayo Clinic has a liver transplant protocol that looks very good for the right patients. Here is a description oif a new drug called Davanat that is specifically for cholangiocarcinoma.
“They have a new drug, well according to the FDA it is even though it has no bilogical activity, that encapsulates the chemo drug and delivers its payload to the cancer cells. The drug is called DAVANAT after the inventors and they got this drug after their 4th try at making it back in 2001. DAVANAT is a carbosome and encapsulates the 5-fu. Go to the website and check out the video. Anyhow, the DAVANAT has an affinity for the Galectin-3 lectins which are overly expressed on 75% of all solid tumors. Well guess what, in phase I humans they had a 70% response rate. Are you surprized – probably not. Well now you will be – this was done on stage III/IV patients after 30 days. That is how quick this works. Now let me throw you the kicker. In order to get into this trial you had to be refractory to 5-FU and failed every other therapy. Now sit down – There are ZERO side effects.
They are in Phase II for colon cancer – they met their primary endpoint and stopped enrollment after 15 patients. They have 2 Objective responses and more coming. Think about the number and compare them to AVASTIN. On stage III patients AVASTIN has only a 1% ORR! vs 14% and climbing every month as more responses keep coming. Everyone is stabilized.
What does this mean for cholangio patients. Well DAVANAT works on a wide range of cancers including Cholangio. There are 2 compassionate use patients with cholanio and I believe both are alive. One person was as Oshner and they lost track of her after the hurricanes hit. I believe she is 100% better but no one knows for sure.
Here is my e-mail if you want to contact me to discuss this more — Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html —- This board doesn’t get too much posting.
In my opinion this is the best hope right now for all Cholangio patients. Cancer is all about the receptors not cocktails of chemo.
I heard that the trials for this drug were terminated for an unknown reason. I spoke with a Center in Iowa that was doing the trials and they said they were just told to stop.
I would also look outside of the “Therasphere” brand name. The protocol is called radioemboilization and brachytherapy. They also refer to “microsperes” or “nanospheres”. At a recent summit on this treatment the leaders in the field prepared a standard for the use of these in treatment of gastrointestinal cancers and seemed to indicate that there may be big differences in the quality of application. Bad side-effects were attributed to centers applying the protocol in a haphazard way. Mayo Clinic and MD Anderson would of course be very good but I’d research the facility before undergoing treatnment. As I said in an earlier post, my conclusion was that Dr. Andrew Kennedy had sort of written the book on this resaerch and so he is my choice for my wife’s BDC. The liver studies he did were really impressive in terms of survival.
Washington University in St. Louis Barnes Jewish Hospital (Dr. William Chapman) is doing a follow-up data collection study of a procedure developed at the Mayo Clinic where they do intensive chemo (Gemzar) and external beam radition coupled with a second phase of chemo (5-FU) followed by liver transplant. The Mayo Clinic paper is readily available and I believe other centers (perhaps University of Nebraska) are also following up. They require no tumor spread at Barnes and they do a careful screening pre and post chemo radiation to assure that fact. They say that the statistics from Mayo look impressive. The problem with CC is that the cancer comes back when they resect and when they remove and transplant the liver, so Chemo is usually what is done but it is not considered a cure.
