Topic: Searching for Information

My sister, in her 40s, was recently diagnosed with Klatskins.  We have been told that if resection is attempted, but unsuccesful, liver transplatation is no longer an option, and that therefore it is important to think about transplatation before undergoing resection surgery.  Have others confronted this issue?  Is anyone familiar with the requirements for becoming a transplant patient at Mayo clinic or elsewhere?  Any information is appreciated.

Re: Searching for Information

Welcome and so sorry you had to join our wonderful little club. I don't know where you live, but here in Phoenix we have a fabulous doctor who was/is Director of Liver Transplants at Banner Samaritan Hospital. He is fabulous and while our bile duct cancer is not in the liver we would not hesitate one minute to call upon him. In fact a year ago we had a courtesy consultation with him. Dr. James Cashman. I know others on this site will also have some good suggestions for you.

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: Searching for Information

Paa...the following is an excpert:  You might want to use the link below for more information re: the Mayo protocol liver transplantation. 

The Mayo Clinic protocol involves careful selection of patients with early stage CCA which is either unresectable or arising in the setting of underlying PSC. Vascular encasement of the hilar vessels is not a contraindication to transplantation. The upper limit of tumor size is 3 cm, and there must be no evidence of intra- or extrahepatic metastases. The protocol specifically excludes patients with intrahepatic CCA or gallbladder involvement.
Neoadjuvant therapy includes 4000 to 4500 cGy administered by external beam, followed by 2000 to 3000 cGy transcatheter irradiation with iridium. 5-FU is given during the radiation treatment and capecitabine is then administered until transplantation. Prior to transplantation, patients undergo a staging abdominal exploration. Regional lymph node metastases, peritoneal metastases, or locally extensive disease preclude transplantation.

http://www.pubmedcentral.nih.gov/articl … id=2504373

Also, by entering "liver transplant" in the Search Function many discussions will come up.   Good luck and best wishes
Marion

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: Searching for Information

Hi Iam on waiting list for liver transplant. My tumor is in bile duct and only hope is transplant. I was diagnosed in July 2008.  There are only 2 places that do transplants for our disease, it is still considered a clinical trial. One is the Mayo Clinic and the other is Barnes-Jewish Hospital in St. Louis Mo. I am a patient at Barnes-Jewish. My doctor is William Chapman (google him, quite impressive). I had to complete 6rounds of gemcidabean chemo, 6 weeks of radiation with 5FU chemo pump, and a staging  surgery to make sure nothing had changed. All of my treatments were bearable, main complaint fatigue achy naseau and all managed with drugs. I then qualified for transplant. While I wait I take oral chemo, Xeloda. I am very lucky because most doctors don't know this is an option for our cancer.  I have been on list for 3 months. I had a MRI saturday and found out no change, which is good. That means for 8 months since diagnosis it has not grown or spread , which is what they want.  I can not say enough good about Dr. Chapman or Barnes Hospital, my symptons were just itchy and he knew right away after ERCP what was going on.  Dr. Chapman told me that Barnes or Mayo were the only places doing this trial. Good luck,  your sister is in our prayers. Cathy spraywedo@aol.com

5 (edited by marions Mon, 27 Apr 2009 16:35:22)

Re: Searching for Information

paa.....The University of Utah is conducting a clinical trial in re: to liver transplantation for CC patients. http://clinicaltrials.gov/ct2/show/NCT00708877.

I had been corrected once before but, you might want to check with the University of Washington in re: to liver transplantation. 
Also, there are many discussions in re: to liver transplantation in the Search Function, which are most informative describing the strict criteria followed for transplant.  You may use either function but, might prefer the one on top of the page, right hand side, using google. 

This one had been posted by BBFranson:

"My husband, Scott, is two months out from transplant and is doing fabulous. The University of Utah has adopted the cholangiocarcinoma protocol from the Mayo clinic with a few adaptations. It involves nitty-gritty screening, aggressive radiation and chemo, a staging laparotomy, and an agonizing wait for an appropriate liver.

"We were treated wonderfully at the University of Utah, and were impressed by their consistent advocacy on our behalf. I've not heard whether or not they treat recurring tumors. It's definitely worth asking, though."

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: Searching for Information

We are uk based, and my mum has just been diagnosed with a potentially inoperable cholangiocarcinoma in the perihilar region of the bile duct.  Her first and only symptoms have been 6 weeks of jaundice.
I'm sorry to bombard with questions but I'm interested to know if, in your experience, the jaundice is a 'late' sign of this cancer, or if it's an early sign?
I would like to know if anyone has ever had success with microwave ablation - a new treatment in UK which has had big success with other liver tumors?
Also my mum has just had a stent fitted and I would like to find out how long (on average) they last, and how soon her jaundice is likely to clear so that she is feeling better in herself.
Thanks so much for your help and support
Wendy

Re: Searching for Information

Hi Wendy,
I don't know about microwave ablation, but my jaundice cleared up in a couple of weeks or less with the sent put in.

Re: Searching for Information

Hello Wendy....I am so sorry to hear about your Mom.  Wendy, there are several others, on this site, from the UK.  Sometimes, it helps when knowing someone lives close by and this someone has been treated by physicians you might also want to contact. 
I will try to answer your questions but, am hoping for others to also share their knowledge.  In many instances, jaundice is one of the indicators for this disease.  At this time, the bile ducts are blocked therefore, the bilirubin is expelled through the body.  Once a stent has been inserted generally, the patient's jaundice will disappear.  If a plastic stent it used generally, it needs to be replaced every three months however, we have seen members who could go for 6 months and even more.  Metal stents last longer and can be cleaned out when clogged and the are  considered to be permanent.  Since it has not been determined whether your Mom could have a resection it is highly unlikely for any physician to use metal, at this time. From what I have seen, on this board, plastic outnumbers metal 3 to 1.  As long as the stent is working, there should be no yellowing of the eyes and her skin should be clear of jaundice.  Of course, jaundice can appear at a very late stage of this disease however, other symptoms would clearly define this.  Your Mom, at this point must be feeling better already. 
On this board we are big proponents of seaching out those physicians very familiar with bile duct cancer.  In most instances, we confer with 2, 3, or more specialists (of whom all may disagree with the other) in order to make sure that decisions in regards to this treatment are well supported by medical experienced physicians. 
I am so glad that you have found us and please, continue to reach out.  If anyone has CC, this is the place to look for support, advise, and sharing of thoughts. 
Welcome and please, stay in touch.
Marion

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: Searching for Information

Dear Wendy,
                 I am based in London and am trying to help patients with cc by getting information for them about treatments available etc and posting it on this web site. You have done the best thing by coming onto this site.
                Have a look on the hospitals section where I have posted some information to see if it's of any use. I have nothing to add on jaundice and stenting as Marion has explained it well. I don't think they do microwave ablation for cc but you might want to look into Sir- speres, which is a form of radiotherapy which is proving positive for cc patients. I f you would like to e mail me directly, please do. Let me know where in the UK you are based.
               Very best wishes
                     Pauline

Re: Searching for Information

just returned home from the hospital, was a very long day full of tension and high hopes....lucille had her scan done and then we waited to see the doctor who had an emergency and could not see her... so we saw his stand-in... the results from the scan showed no progression of growth or spreading, but did not show any shrinkage from the large tumor... the second tumor a smaller one was no longer visible and according to the doctor is completely gone...to me thats a success... one tumor gone and one at least stablie.... although its not what we hoped for at least its not any worst.....lucille is very disappointed and understandable so, she was praying for more shrinkage, to lead her to resection, everyone was....so she was not being receptive to what the doctor was suggesting... i didnt want to push the issue with her right there even though i know i should have... she has been under alot of stress so i figured i will wait until everything settles down and then we will talk....i hope iam doing the right thing...it goes against my thinking....well anyway the doctor thinks that she should have the procedure over again but she wants no part of it and i dont understand why not... right now we cant seem to be able to get thru to her..she tells me its her body and she will do what she wants and i only hope she comes to her senses and changes her mind.....the past 15 months has taken its toll on me and im beginning to weaken, i feel ashamed of myself for saying that.... let me take this time to thank all of you for listening to me and for all your support and prayers,and for giving me a should to lean on, i could never thank you all enough..........ron

Re: Searching for Information

Dear Ron, 
I so much understand your frustration.  From what I have experienced, one of the hardest things to do, is allowing the people we care for and love so dearly, to make decisions against what we think is in their best interest. Much control is lost when cancer enters our life and I believe, in my personal situation, for my husband to choose when and how he wanted to be treated was one way of exerting HIS control over HIS body.  There were times when the information received was either too much to comprehend or simply, to overwhelming, or disappointing.  Many times, after a few days, he might completely reverse himself from the position he had taken on previously.  This might very well be happening with your wife.  A few days of letting the news settle in, she might very well change her mind.
Though none of us would choose any different, the reality is, being a caregiver is an extremely difficult situation to be in.  We want the absolute best for our loved ones and we so easily forget to tend to our own needs.  After all, we are the healthy ones, right? 
I am glad that you shared your feelings because;  most of us, on this board, can relate so well to what you have expressed.
Hang in there, Ron.   Some days simply are better then other days. The little tumors shrank and that is something to be happy about.  The rest will fall in place.
I had posted this previously however, I think this is a good time to repeat it. 
And, before I forget, don

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: Searching for Information

Hi Ron,

Thanks for keeping us up to date on what is happening. I can relate to how your feeling right now as I went through a similar situation earlier this year. We too were hoping that my dads tumour would have shrunk with the treatment but it had not. Like Lucille's larger tumour, it hadn't grown or spread, but it had not shrunk as we had hoped for, just as you and Lucille hoped for also. It's not easy to take in news that is disapointing is it. What I tried to do was take the positives form the situation, that it had not grown or spread.

Hopefully like Marion says, maybe over the next few days once the news has sunk in Lucille will change her mind on further treatment. That is good news indeed that the smaller tumour has gone, and perhaps Lucille will in time think that this treatment worked on the smaller tumour so perhaps it is worth trying again on the larger one?

It's not easy being a carer for someone we love is it. Day in day out having to deal with this horrific illness, the highs and lows and also the impact it has on us as carers. I've been caring for my mum for over 5 years and since this monster reared its head, my dad since last summer so I know what you mean when you talk about how things can take their toll on you. You have absolutely nothing what so ever to feel ashamed about.

My very best wishes go to you both.

Gavin

And thank you Marion for posting that caregivers bill of rights, I'd never read that before.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Searching for Information

Dear Ron, Could any task in life be more hard that the job we do? Hooray for us! Sounds like you need a little Ron time as well. Go for a drive, take a walk. Honestly, as much as we love someone it gets to be a very bitter pill to swallow. We really do need some alone time. While you see the test outcome as mostly good, Lucille probably sees it as mostly bad. Usually after one has had a few days to think it over they tend to think more clearly about it. And remember, a lot is to be gained in your approach to her. Us girls are funny that way! Maybe do something different, together over this weekend. Good luck! Stay strong and we are so glad that you come to us to vent or to give your good advice. We care!

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: Searching for Information

Hi,
Marions, thank you for posting the caregivers bill of rights, like Gavin i have never read it before, its true that since the beginning of all this my life was put on hold. i felt taking time for myself did not exist and that if i did i was doing something wrong. well thank you for showing me how wrong i was, i find comfort in your words even when they are not directed at me and i thank you.
   Gavin, you are right, its not easy taking care of a loved one i think it takes some one speacial, some one who has that little something extra inside them that keeps pushing them forward. you are one of those people, i applaud you for what you are doing for mom and dad they have been blessed with a speacial son. thank you for your advice and best wishes.
    Lainy, your words are always upbeat, when i read them its like a melody goes off in my head and i should be dancing. you are right it is time for ron to take some ron time so tomorrow my son is taking me on a fishing trip just the 2 of us, im looking forward to it . today me and my lovely bride are going to a bbq, some fresh air, a few racks of ribs and probably a lot of brews, sounds like a nice couple days. all i can say to all of you is THANK YOU, enjoy the week-end.....best wishes and prayers .....ron

Re: Searching for Information

Hi Ron,

Hmm, bbq, fresh air and a few racks of ribs followed by a days fishing. Now that sounds like a good plan to me! Hope you have a great weekend and catch a few fish!

All the best.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Searching for Information

Ron,

The helplessness and lack of control I felt over the entire situation when my mom was sick tested me in a way I had never been tested before. I will say it again, this cancer is like going through trial by fire not just for the patient but for caregivers as well, it is unforgiving and in many cases unyielding. I don't have any answers for you but what you are feeling is completely normal. Take care of yourself and I hope the fish are biting.

Patty