December 16, 2008 at 5:35 am #23645
Dane….I know that you have addressed Tess but, I wanted to welcome you and thank you for your extensive posting. I am impressed with your Mom’s positive responsed to the treatments and am looking forward to many of your postings in the future and for your report of continued success in fighting this cancer.
MarionDecember 16, 2008 at 5:18 am #23644daneMember
Hi Tess. I see that you have received some great information from fellow users who appear to be very knowledgable and very helpful. I will share with you some additional information that might have already been explained that my family has experienced.
My mother who is a young 63yrs old and was in great shape physically and mentally was quickly inflicted with Cholangiocarcinoma. We also went to Mayo Clinic. The Mayo clinic is widely considered the best Cholangiocarcinoma Hospital in the world especially when it comes to Liver Transplants. The Doctors at Mayo were incredible and personable. The scheduling and administrative parts were lacking at least in our situation. But overall, the Doctors were honest and gave their best opinions. But their opinions were based upon traditional medical approaches to CC. They explained they could do chemo and radiation but it might only give her an additional 3-6 months to live. Once doctor gave us about 1 month to live (that was almost 3 months ago).
My mom was not a candidate for transplant either. The transplant procedure for CC has changed from a few years ago to today. It was explained that they just dont do as many as they once did. Today, there are several factors that determine transplant candidacy. The tumor is expected to be less than 2cm. No metestasis can have been found. Additionaly, they determine if you are strong enough to survive a transplant due to having to take anti-immune drugs for the rest of your life. Five years is usually the most you can hope for if the transplant is successful according to what the doctors explained to us.
I researched the internet including Pub Med for almost a month and found there are many success stories with CC disease. The only problem was finding a facility that would implement the treatments because many of them are new (it generally takes MD’s 5-10 years to implement new technology or new approaches or for the information to get out). In my research I found that an integrative approach including chemo, radiation, I.V. Nutrition, resection and other approaches are the keys to fighting CC. My mother is currently residing in Cancer Treatment Centers of America. She is one of the first patients in the nation to recieve this fully integrated approach. The first goal was to stop the metastis and growth of her tumor and to stop her billirubin from going to high. We have accomplished that and now are working on shrinking the tumor to a size that will be manageable to resect in a strategic fashion. We implemented High Dose Vitamin C IV therapy which is shown in clinical studies to stop cancer growth and even kill cancer cells. She gets high dose of Glutathione IV one day prior to Vitamin C Therapy to protect the normal cells from chemotherapy and Radiation and even damage that high dose vitamin C could do if there was no glutathione. The next day she gets her Vitamin C IV high dose (needs to be high enough where the vitamin c turns into hydrogen peroxide in the cells). After glutathione and Vitamin C days she usually has her best days. With the Vitamin C IV we also have her on large doses of Alpha Lipoic Acid, Vitamin D, Vitamin K, Melatonin, Vitamin E, B-12 and B-complex vitamins all at high therapeautic values that have research behind them. She is also on Probiotics, EFA, and targeted Homepathics. We started her on Oxyplatin thru the kidneys since her billirubin was so high. We now are increasing her Oxyplatin and all of the IV nutrients.
I am proud to say, that prior to this integrative approach my mother was bedridden, couldnt walk, couldnt get out bed by herself, couldnt lift her leg on the bed to put a pillow under it, could not take a shower or bath, was in incredible pain, couldnt eat, nausea, and no energy. She had not been outside for 2 months. She was expected to get worse.
Now my mother is getting up every morning and taking a shower. She walks to her appointments that are filled each day. She went to see a movie at a theatre two weeks ago. She went and played her favorite game of video poker at a local casino. She is going shopping and goes out to eat at restaurants. All of these things we take for granted were stripped of her and now she is able to cherish these simple acts we call normal living.
Today, my mom is still fighting this terrible disease, but we truly believe she is on the her way to beating this challenge. All of her blood work has turned back to normal including platelets, RBC, etc. The doctors even said if her billirubin levels were not high (5-, it would be difficult to know she has CC. The doctors at the hospital have been amazed with her results even commenting they didnt recognize her from her initial visit.
I have just finished additional research to lower Bilirubin which I will provide to the physicians this week. I have learned from all of this that there are options and solutions to these diseases if you take the time to do the right research and utilize knowledgeable people who can guide you in the right direction. I also learned you cant sit back and expect the physicians to do this research due to their busy schedules and just dont have time to read the vast amount of new research that surfaces each day.
Best Regards and Good luck
DaneDecember 16, 2008 at 3:02 am #23643
Thanks for the insights Wayne. Yes, by cath I mean the biliary catheter. For now, he has a bag, and it’s capped off when he eats. This will likely be modified at his next visit on the 23rd. The concern, is that because he has a systematic infection, stemming from the cath- they want to ensure that the bile/infection is not backing up at this site. The tumor is a partial obstruction of the bile ducts and of the left portal vein.
Wake Oncology denied Dad for microspheres, based exclusively on the high bilirubin levels, they didn’t even look at scans. I wasn’t aware that the brachytherapy treatment was a form of chemoembolization. The doc simply indicated that a high-dose brachytherapy boost will be sent to the area of the tumor bed, directly through his existing catheter. Dad is confident in his existing cancer team here at the Robert Packer Guthrie in Sayre PA, which is great, as he has refused to travel (though he’s also refused to hear about stages/prognosis, potential ramifications of radiation, etc.).
I will look more into the proton therapy & cyberknife as well, I think they offer the cyberknife here in Binghamton NY.
Yes, the biopsy showed cholangiocarcinoma & not metastatic colon cancer, according to the docs. His previous colon cancer responded to the chemo/radiation, my fear is what you’ve underscored here- that this sort of cancer is often resistent to chemo. I’ll touch base again if we decide to purse additional opinions, with Barnes-Jewish.
Thanks so much!
TessDecember 16, 2008 at 12:20 am #23642
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.December 15, 2008 at 9:05 pm #23641
Thanks for the note Wayne, and for sharing some of Valerie’s story. She was lucky to have you for the fight.
I’m not certain where the tumor is in the tree. As soon as Dad was diagnosed in early Nov., he had the biliary cath put in. This definitely helped with the jaundice. The next day the doc sent Dad home & told my parents that radiation & resection were not options, that he’d pursue chemo- but that typically this sort of cancer doesn’t respond to chemo. He told them to look into ‘experimental’ treatments.
From there we contacted docs at Duke, Roswell, Fox Chase, Sloan, the NIH & Wake. We overnighted CD imagery & doc notes to principals at all of these institutions. All docs (except NIH) said that based on the imagery, it is unresectable & they don’t recommend radiation. Wake wouldn’t do the microspheres based on high bilirubin.
Dad’s doc then decided to convene with a surgeon & radiologist. The radiologist wants to go through the biliary tube with Brachytherapy, daily for 6 weeks. Dad is 3 weeks into gemcitabine at this point). The surgeon says if they can reduce it even a bit, that he’ll attempt to resect it. At this point, he’s fighting off a cath/blood stream infection. He’ll resume chemo on the 23rd of Dec.
Dad’s been pretty sick the last couple weeks, but prior to that he was a strong healthy 64 yr. old man. Stomach pains & jaundice initially sent him to the doc, and he’s had lots of pain since the cath insertion. I’ve never heard/seen the term Klatskin come up in his paperwork, I’ve only seen it referenced here on this site.
But yes, Dad was rejected by Mayo without anyone seeing any of his scans or paperwork. The following excerpt reflects the information that the doctor at Mayo had, from which he rejected Dad as a potential candidate- indicating that everything I’d been told by the other centers & the previous Mayo doc was correct (the previous Mayo doc that said the site of Dad’s cholangiocarcinoma (intrahepatic) makes Dad an unlikely candidate for liver transplantation).
“Can you confirm for me that if my Dad’s form of CC is intrahepatic, that he would definitely NOT be a candidate for a liver transplant there at Mayo. There are no mets, it’s locally advanced, he’s two weeks into the original diagnosis & the mass is about 7cm. It’s been confirmed by a half dozen oncologists/surgeons that it’s unresectable & the general consensus is ruling in favor initiating Gemcitabine. Wake Oncology indicates that Microsphere is not an option due to elevated bilirubin levels of 15.8, & Sloan-Kettering notes that size and proximity to a major vessel prevent candidacy for Radio Frequency Ablation. Duke further notes that my fathers history (a few years back) with colon cancer would potentially eliminate his applicability to a trial protocol. The majority of others have also confirmed that radiation is too risky or not an option. Do you have any other thoughts/directions/treatment plans, based on your experience & the aforementioned information, that we should be considering?”
Thanks again Wayne for the note. I hope that Dad can gain some strength back & can continue with the chemo, & that the radiation isn’t too rough on him. It’s all happening very quickly…
TessDecember 15, 2008 at 8:34 pm #23640
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.December 15, 2008 at 1:09 pm #23639
It was your post Wayne, & correspondence with Raye that prompted us to initiate contact there at Mayo. Thank you for that. It is good to know that your experiences suggest there are potential opportunities there…
I corresponded with these docs via e-mail, they never saw Dad’s records or reviewed his imagery. Their decision that Dad is not a candidate was based on what I told them of his condition: It’s intrahepatic. There are no mets, it’s locally advanced, he’s two weeks into the original diagnosis & the mass is about 7cm, and has elevated bilirubin levels of 15.8.’ Perhaps it was the combo that inspired them to deny him & chalk it up to the ‘intrahepatic’ class.
Good luck to others and thanks for the additional insight Wayne. I was left to believe that this was not an option at all for intrahepatic cc, I’m glad to learn otherwise.
Best, TessDecember 15, 2008 at 5:04 am #23638
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.December 15, 2008 at 12:56 am #23637
Tess….I am impressed with your approach by searching out the different specialists in re: to a treatment protocol for your Dad. I believe for knowledge to give us the power to make informed decisions. You are a great example. Wishing for your Dad to rid himself of the infection soon.December 15, 2008 at 12:41 am #23636
Thank you for your kind words Carol. Every scenario is different, for every person… it’s so hard to predict anything and there is hardly a ‘norm’, from what I”ve been able to gather in these last couple weeks of being part of this community. We too are hoping for a resection, and taking things one day at a time. Charlie certainly beat the odds! Thanks for sharing.
TessDecember 15, 2008 at 12:22 am #23635carol58Member
Tess, I don’t want to throw any more confusion into the mix. Just wanted to relate Charlie’s story. Charlie, like your Dad has intrahepatic, diagnosed 5/07. He was told 3 to 6 months, no surgery, just chemo. Went for 2nd and 3rd opinions and a surgeon at UNC Hospital in Chapel Hill, NC performed a liver resection in 11/07 removing over half of his liver. Clean margins, everything looked very positive. Charlie just happens to be one of those people (no reason) that tumors came back pretty quickly. I wish you luck in your research. Let me know if I can help in any way. Best to you and your family.
CarolDecember 14, 2008 at 11:49 pm #23634
Hello, Per a recent correspondence (11/17/08) with two doctors at the Mayo Clinic, I was told that because my Dad has Intrahepatic CC- that he is not a candidate for liver transplant. Dr. Blechacz initially indicated that because my Dad’s cancer was Intrahepatic, this makes him an ‘unlikely’ candidate for liver transplantation. I then pulsed Mayo’s Dr. Greg Gores for confirmation that Dad would definitely NOT be a candidate, and he confirmed. Other clinics that said he was not a candidate for surgery or radiation included Duke, Sloan & Roswell. NIH said they’d consider a conformal mix of radiation & chemo. Wake oncology said he’s not a candidate for microspheres due to high bilirubin levels. We finally secured a team at the Robert Packer Hospital in Sayre PA that agreed to start with Chemo, work into radiation, & the surgeon said that if they can shrink it even a bit that he’d attempt to go in and resect. Mind you that originally, Dad was sent home after the diagnosis & told that he should go seek out experimental treatments.
Currently Dad is fighting off an infection, so everything is on hold for now.
It is very interesting how there are so many opinions & approaches, even over one single patient.
TessNovember 9, 2008 at 2:03 pm #23633gale918Member
My lead surgeon was the Director of Transplants for my liver resection in June 2007. He told me that if this resection failed, I would be on the list for a transplant. Having read the above information, helps me know that the surgeon/doctors involved in my cancer are capable and I’m comfortable in their decisions.November 9, 2008 at 4:33 am #23632
Raye…good stories are uplifting for everyone….please, go ahead and let all of us share in your success.November 9, 2008 at 4:12 am #23631rayeMember
I was a candidate for a liver transplant at the Mayo Clinic, and received my new liver section from my daughter who was the live donor.
Anyone wishing more info. by phone or e-mail can contact me anytime at firstname.lastname@example.org or by phone at 1-519-351-4406.
I have a good story to tell, so call me anytime. I’m on E.S.T. in Canada.
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