Re: 80% Survival Rate at Mayo Clinic

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!

-Tess

27 (edited by raye Sat, 31 Jan 2009 11:33:25)

Re: 80% Survival Rate at Mayo Clinic

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 raye.field@yahoo.com.

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!!

Thanks all,

Raye

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

28 (edited by marions Sat, 31 Jan 2009 12:38:02)

Re: 80% Survival Rate at Mayo Clinic

Hello Raye

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: 80% Survival Rate at Mayo Clinic

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!

Best,
Tess

30 (edited by equipmentlizard Tue, 16 Aug 2011 06:29:59)

Re: 80% Survival Rate at Mayo Clinic

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!!!

Re: 80% Survival Rate at Mayo Clinic

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.

Re: 80% Survival Rate at Mayo Clinic

I highly agree that the Mayo Clinic in Rochester and Washington University in St. Louis are in the forefront of liver transplants.  It's truly tragic if doctors do not tell their patients about this possible option.

BUT to say "...there is no other treatment that offers more than a few months of survival" is very discouraging. 

I go to Mayo Clinic and went through the protocol. Like many others I did not qualify for a transplant.  As a person with inoperable cc I am now almost 24 1/2  months since diagnosis.  Miracles do happen, do not loose faith.

Re: 80% Survival Rate at Mayo Clinic

Love it and you, Kathy!!!  I don't think we can live each day in a good way without hope. As much as Teddy went through we never talked about giving up even when told his options were nil. I would hate to look back now and feel should we have, shouldn't we have, maybe another doctor, maybe anything. We were always hoping something new would come along.  But it didn't envelop us. We used our time wisely with love and with smiles. And when he walked in to the kitchen to see me, 2 days before I had to take him to the Hospice Facility and 5 days before he passed....and he held his arms out and he said, "I want to dance with you" and he started singing our song.....that still breaks me up but what a wonderful memory that is. Anyone can walk outside and get hit by a car and not have the wonderful goodbyes that we did. I just hate to see anyone get CC but know what? I would be a Care Taker again to have the 4 months at the end that we had. We filled a lifetime in to 4 months. We had hope!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: 80% Survival Rate at Mayo Clinic

Thank you, Lainy.  My husband told me to tell you that he loves you.  We both cried as I read your post.

Re: 80% Survival Rate at Mayo Clinic

You must have another Teddy! Thank him. I am positive he is so very proud of you. Kathy, someone told me that if Teddy and I could make the last 4 months 'our precious time' that I would never look back and see CC as the monster it was but only see our precious time! It really worked. We were like newlyweds. Every time a new nurse from Hospice would come Teddy would tell them we were on our honeymoon. I can honestly say that I would have only done one thing different and that would have been to keep Teddy at home and not take him to a hospice facility as you know. Otherwise I would not trade those 4 months for anything. I have to be honest here and I have been looking at some dating sites. OMG! So needy and lost are these men over 68. I am not looking to be a nurse & purse! My own company is better than what I see! I say I am looking for a Godfather/Valentino as that was Teddy to me. I know I shouldn't be comparing but for me Sicilian is the way to go. I have only met a man once, for tea and in 10 minutes he was holding both my hands. NOT! I sat for 2 hours with my hands under the table. Too funny. My 2 Grandsons out here make much better dates. They are 15 and 17 and even open doors for me! Mmmm I just had a thought that they do that because to them I am old! smile:):)
Kathy, it doesn't matter if you live another 50 years and I hope you do....but make your precious time.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: 80% Survival Rate at Mayo Clinic

AMEN Wayne- I am living breathing proof that a transplant works!! I post on here all the time that I am alive because of Dr. Chapman. I can never say or put into the right words about this man. I can only keep  saying that I never even knew I was that sick, because of Dr. Chapman's positive attitude.
I never want to "ruffle any feathers" on this site, because we are here to help each other. It has been very hard to keep quite when negative things are posted about transplants by people who have not gone thru the trial or are just posting a research line from a medical journal. As much as we don't want it to be, a transplant is our only real cure. (80% is great odds!)
I know that not everyone will  qualify for at transplant and when I just visited with Dr. Chapman  the one thing we discussed, is that a transplant should be ruled out by a doctor who believes its an option.
I can not say enough about this man, I shouldn't be here, especially after my hepatic artery ruptured. I was given the last rites twice, that speaks for it self.  I am alive because of God, two strangers and Dr. Chapman. And once again I will say that is how Dr. Chapman would list it.
Lots of prayers for all fighting- Cathy

Re: 80% Survival Rate at Mayo Clinic

I'm posting on behalf of a friend who's recently been diagnosed with cholangiocarcinoma. He was diagnosed in April 2012, he has a single tumor that is impinging on the bile ducts, including secondary ducts, on the left and right sides of the liver (which is why the doctors at Moffitt Cancer Center have presently ruled out resection). It has not metastasized.

The initial internal stents seemed to work for a week or so, but then the doctors deemed the stent to have slipped, and inserted two internal stents, one each on the left and right sides. That didn't help much either, and now my friend has two external drains. The good news is that his bilirubin is finally dropping this week, slowly (now 8.5 or 8500).

We have been wondering why liver transplantation has not been considered as an option for him, and I came across this topic as well as this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3095469/
that references the "Mayo protocol" and it's success.

Since no one seems to have posted on this topic for a year now, I was hoping to rekindle the discussion - any recent experiences related to liver transplants, advice and/or opinions will be most welcome.

Again, thank you very much for all the help and support.

venkat

38 (edited by eli Tue, 05 Jun 2012 17:13:15)

Re: 80% Survival Rate at Mayo Clinic

Hi Venkat,

Only a small handful of hospitals do liver transplantation to treat cholangiocarcinoma. Off the top of my head: Mayo Clinic, Barnes-Jewish, University of Michigan.

So the first question to ask:

Does Moffitt Cancer Center use LT as a treatment option for CC?

If they do, ask them whether they considered him for LT.  If he is not eligible, ask them to explain why. The eligibility criteria is very strict.

If they don't, he must get a second opinion from one of the hospitals that do LT for CC.

Eligibility criteria should be fairly similar across all hospitals.  For the reference, here's University of Michigan protocol and eligibility criteria:

http://www.cholangiocarcinoma.org/punbb … hp?id=4527

Eli

ADDED:

Here's a very good article about liver transplantation for CC:

Curing cancer by replacing livers!
http://www.ksat.com/news/Curing-cancer- … index.html

The article touches on the eligibility criteria:

What are the criteria for a patient who would be able to have the transplant?

Dr. Sonnenday: Patients for whom we think liver transplantation can be a treatment for their bile duct cancer are subjected to two different levels of selection criteria. The first is about their cancer: is the cancer confined to the liver and the bile ducts itself? We do a series of tests to make sure that there’s no evidence of cancer elsewhere including the surrounding lymph nodes. The patient can’t have an appropriate surgical resection option. The reason that we exclude patients who have a resection option even though the outcomes could at least theoretically be as good or better with transplant is that we just don’t have enough transplanted organs available for all the people already who need one. To offer liver transplantation to people who have other treatment options at this point we don’t think it’s appropriate. So, appropriate patients have to have bile duct cancer confined to the liver and bile ducts and not have a surgical resection option.

Then they have to be a transplant candidate by all the traditional criteria. They can’t have other medical conditions that would prevent them from getting the most appropriate outcomes after transplant. Patients with other cancers, or patients with advanced heart disease or lung disease -- things that would make the recovery from transplant more difficult – are not candidates for liver transplantation. Those are the same criteria that we use for any of our patients who are being considered for liver transplant.

BTW, Dr. Sonnenday posts here from time to time. If you don't get the answers at Moffitt, consider contacting Dr. Sonnenday for a second opinion about LT.

Re: 80% Survival Rate at Mayo Clinic

Venkat-Welcome and sorry you had to find us. I am a CC survivor due to two liver transplants. I just did my 3 year cancer free birthday this month. I am alive because of Dr. William Chapman at Barnes-Jewish Hospital St. Louis MO. My CC was stage4 and inoperable, I also could not have a resection because of the location of my tumor. Liver transplants are becoming a more viable option now, but some doctors and hopsitals still feel it is a waste of good organ to give it to some one with cancer.
I suggest you consult with a doctor  who believes it is an option and let them rule out if your friend is a candidate. I highly recommend Dr. Chapman, he is one of the top 100 doctors and has a heart. I am leaving his phone number because he will take your call, 1-314-362-5376. (transplant department)
Please read my story at thetelegraph.com under christmas miracle or on my FB page (Catherine Sims Dunnagan). I also have another CC success story by Dr. Chapman on my FB page, and another CC success story of a 5 year survivor because of a transplant. Please feel free to contact me if I can help more. I am proof there is HOPE!!
Lots of prayers-Cathy

Re: 80% Survival Rate at Mayo Clinic

Eli and Cathy,

Thank you so much for Dr. Sonnenday's and Dr. Chapman's references. Cathy, your story is inspiring - thanks for sharing.

I have passed the details on to my friend, and we are all so very grateful to you for your quick and detailed responses

thanks again
venkat

41 (edited by eli Wed, 06 Jun 2012 16:19:51)

Re: 80% Survival Rate at Mayo Clinic

Hi Venkat,

Just wanted to add that Mayo Clinic is *by far* the most experienced hospital that performs LT for CC.

Here's a recent article written by Mayo doctors:

http://www.ncbi.nlm.nih.gov/pubmed/22504095

Note the stats:

They examined 287 patient cases from 12 US centers between 1993 and 2010.  All patients had liver transplant for perihilar CC.  Out of 287 patients, the vast majority (193 cases) came from 1 center.  The abstract doesn't say which one, but I'm almost certain that it was Mayo Clinic itself. After all, they are the ones who invented "Mayo Protocol" of treating CC with LT.

Fingers crossed that your friend is eligible for LT. Please keep us posted about his updates.

Best wishes,
Eli

Re: 80% Survival Rate at Mayo Clinic

In following Eli's great posting I would like to mention that soon we may see liver transplantation for intrahepatic CC patients also. (Not at Mayo.)  I will keep everyone posted on the ongoing developments.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: 80% Survival Rate at Mayo Clinic

My Daddi-->
Please give me some advice on this decision. I just talked to Dr.Chapman office and talked to nurse Velva specifically about my dads condition, she asked to send all his file and scan to the office. I would love to do so but before, I need to clarify something. Is my dad absolutely inoperable???. If he is, then the liver transplant would be the option to go, but what if the doctor will do the resection after CT/radiation? THen which is better, the resection or the liver transplant. Since i'm so new to this-- I'm not sure what to do in this decision. I do know one thing that the protocol for liver transplant is when patient is absolutely inoperable and should I just send my dads data in for Dr.Chappman to review and he will then determine from there? Dr. Chung which told me my dad tumor site is at the Y-site which is hard to resect, said that he want my dad to do Chemo and radiation and would review if my dad is operable or not later on. Should I wait for this, letting my dad go through this CT decision or should I just go straight to Liver transplant.?.. What if the size will go down and be resectable later, then is it a wrong idea to have the liver transplant be in process??>.. this is my biggest concern. Please respond, ANd how about the cost?> My dad has medicaid (molina)... so financial wise is a concern also..  SInce i live in michigan and Dr.Chapman is in MO, (what is the estimation $$)

Re: 80% Survival Rate at Mayo Clinic

huong-my, I am sorry but I think only Dr. Chapman can give you your answers, we are not Medical Professionals  and only he can decipher the LABs and test reports and will then give you all your answers. If possible perhaps you should get all that in to Dr. Chapman's and then he will guide you in the best direction. Your questions are good but not ones we can answer. Best of luck and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: 80% Survival Rate at Mayo Clinic

Hi,
I concur with what Lainy said above, only the liver surgeon like Dr. Chapman in MO or Dr. Sonnenday in Univ. of Michigan  or Dr. Gore at Mayo Clinics in MN can tell you exactly what is the best choice for your Dad.
The following link may help you understand how the surgeons making their decisions ,resection or liver transplant.

http://www.cholangiocarcinoma.org/punbb … 467#p61467

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: 80% Survival Rate at Mayo Clinic

Hi-I am so excited that you are in contact with Dr. Chapman, he is my hero. I hope you scroll up the page and read Wayne's post dated August 15, 2011, it is very true. I am alive because of God, 2 strangers and Dr. Chapman! The amazing part is that is how he would list it!!
I just sent you an email, look forward to hearing more from you. Also the cost of liver transplant is about $750,00!! My CC battle has cost almost 3 million dollars!!! I have stopped complaining about my premiums!!
Lots of prayers and HOPE!-Cathy