Topic: 80% Survival Rate at Mayo Clinic

Everyone with intrahepatic cholangiocarcinoma (Klatskin) should realize that there may be a cure for them. They call it Neoadjuvant chemo/radiation followed by Liver Transplant. Do not accept dire predictions from your doctors. Even at Memorial Sloane-Kettering Cancer Center the doctors did not even tell Valerie about this treatment. The reason? They don't do it. You cannot take your doctor's negative opinion about treatment as being true or even well-informed. My wife died of cholangiocarcinoma earlier this year. We learned about the liver transplant protocol developed by Dr. Steven Rosen at Mayo Clinic in Rochester MN that was having great success. I found it on my own. None of the many doctors who saw valerie mentioned it. For Valerie it was too late when she found it because she had to go through a lengthy pre-transplant protocol (approximately 7 months). Her cancer metastasized before she could get a liver transplant. For others the treatment hopes to achieve an 80% cure rate. Mayo started the program in the 1990's and published promising results in 2002. Then other Centers strted doing the protocol, notably at the University of Nebraska and at Barnes-Jewish Hospital Sitemann cancer Center in St. Louis, MO under the famous liver surgeon William C. Chapman. Other cancer centers are now doing this procedure. Look up clinical trial identifier at and Identifier: NCT00301379. Here is a quote from a leading Mayo Clinic paper published on cholangiocarcinoma that discusses this treatment option:

Liver transplantation without neoadjuvant therapy should
be avoided in patients with hilar cholangiocarcinoma, with
long-term patient survival in the range of 28% at 5 years
and a prohibitively high recurrence rate.38 Results are
equally disappointing with incidental tumors.39,40
The Mayo Clinic in Rochester, Minn, developed a transplantation
protocol for patients with hilar cholangiocarcinoma
or cholangiocarcinoma arising in the setting of sclerosing
cholangitis. The protocol excludes patients with
intrahepatic peripheral cholangiocarcinoma, metastases, or
gallbladder involvement. Patients are initially treated with
preoperative radiation therapy (40.5-45.0 Gy, given as 1.5
Gy twice daily) and fluorouracil.41 This initial treatment is
followed by 20- to 30-Gy transcatheter irradiation with
iridium. Capecitabine is then administered until transplantation.
Before transplantation, patients undergo a staging
abdominal exploration. Regional lymph node metastases,
peritoneal metastases, or locally extensive disease precludes
At the time of the last published review, 71 patients had
begun neoadjuvant therapy at the Mayo Clinic since 1993,
and 38 (54%) had favorable findings at the staging operation
and subsequent liver transplantation.41 Initially, 40%
had findings at the staging operation that precluded transplantation.
With adoption of endoscopic ultrasound-directed
aspiration of regional hepatic lymph nodes, most
patients destined to have occult metastatic disease are detected
before administration of neoadjuvant therapy. Currently,
less than 15% will have undetected metastatic disease.
The 5-year actuarial survival rate for all patients who
begin neoadjuvant therapy is 58%, and the 5-year survival
rate after transplantation is 82%.41 These results exceed
those achieved with resection even though all the transplantation
protocol patients have unresectable cholangiocarcinoma
or cholangiocarcinoma arising in the setting of
primary sclerosing cholangitis. These results are also comparable
to those achieved for patients with chronic liver
disease undergoing transplantation for other indications.
Hilar cholangiocarcinoma, once a contraindication for transplantation,
has emerged as an indication for liver transplantation
when combined with effective preoperative therapy."

The paper is entitled: "Treatment Options for Hepatobiliary and Pancreatic Cancer" Mayo Clin Proc. 2007;82(5):628-637

Results are very encouraging if the patient can make it to transplant without metastasis. I will post another note on how to destroy Kaltskin tumors without surgery (Y-90 microspheres used in a 2 hour outpatient procedure destroyed Valerie's Klatskin tumor but the cancer had spread and it was too late). If we knew of that treatment before Valerie started on the liver transplant protocol I think she would have been cured and alive and well. This crushing experience could have been avoided. Northwestern University, Wake Oncology and the University of Utah are using Y-90 microspheres successfully against Kaltskin tumors. Doing that as soon as a patient is diagnosed and then doing the chemo-radiation protocol for a short time and transplanting the liver is the best scenario. The trick is talking the doctors into putting that sequence together.

If anyone has questions they can contact me privately at 808-753-0290. I am in Hawaii.

Wayne Parsons

2 (edited by raye Sat, 08 Nov 2008 21:13:17)

Re: 80% Survival Rate at Mayo Clinic

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 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.


I'm a passenger on planet Earth and God is driving.

3 (edited by marions Sun, 09 Nov 2008 10:43:48)

Re: 80% Survival Rate at Mayo Clinic

Raye...good stories are uplifting for everyone....please, go ahead and let all of us share in your success.


Re: 80% Survival Rate at Mayo Clinic

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.

Re: 80% Survival Rate at Mayo Clinic

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.


Re: 80% Survival Rate at Mayo Clinic

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.


Re: 80% Survival Rate at Mayo Clinic

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.

Warm regards,

Re: 80% Survival Rate at Mayo Clinic

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.


Re: 80% Survival Rate at Mayo Clinic

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.

Re: 80% Survival Rate at Mayo Clinic

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, Tess

Re: 80% Survival Rate at Mayo Clinic

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.

Re: 80% Survival Rate at Mayo Clinic

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...


Re: 80% Survival Rate at Mayo Clinic

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.

Re: 80% Survival Rate at Mayo Clinic

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!


Re: 80% Survival Rate at Mayo Clinic

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 (5-8), 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


16 (edited by marions Mon, 15 Dec 2008 22:50:55)

Re: 80% Survival Rate at Mayo Clinic

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. 


Re: 80% Survival Rate at Mayo Clinic

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!


Re: 80% Survival Rate at Mayo Clinic

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.

Re: 80% Survival Rate at Mayo Clinic

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?


Re: 80% Survival Rate at Mayo Clinic

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.

Re: 80% Survival Rate at Mayo Clinic

Hi Tess,
   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.

Joyce C

PS - For everyone else - Binghamton and Endicott are next to one another in south central New York. They afre practically the same place!

Re: 80% Survival Rate at Mayo Clinic

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.


Re: 80% Survival Rate at Mayo Clinic

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.


Re: 80% Survival Rate at Mayo Clinic

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.


Re: 80% Survival Rate at Mayo Clinic

   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.