Topic: First steps in the battle against the disease. We need directions pls

My sister and I found out 3 weeks ago that our dad ,71 years old, and best friend has cancer of the gall bladder and bile ducts. This has been devastating for us. He had an operation 1 week ago but unfortunately it was unresectable (I understand that means that they couldn't take it all out). I understand that they have cleaned a bit around the area but have left everything including the gall bladder. It appears for the moment that the liver is only affected in the area adjacent to the bile ducts and that the nodes around are not affected. We are wondering what to do next. We have heard of the Mayo and MD Anderson clinics as well as through your website of the Wake Radiology onchology centre in the US. Which one should we go to first? What treatment should he be put on? Oxaliplatin, Xeloda, Sorafenib, Herceptin (I hear there is a clinical trial about this one at Anderson for this type of cancer), Davanat? We are a bit lost and don't know what to do next? Please advise! We are also really happy to have found your website.

Re: First steps in the battle against the disease. We need directions pls

No knowledge on chemo regiments....but please get a second opinion on the surgery.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: First steps in the battle against the disease. We need directions pls

Thank you for the advise. We trust those that did the surgery as they are one of the best teams in Spain and they do the liver transplants in Spain (surgeon's name is Dr Moreno) but you are right we should get a second opinion. Not sure where though. Mayo clinic?

Thanks again.

Re: First steps in the battle against the disease. We need directions pls

I'd suggest contacting surgeons at some of the cancer centers listed on this site and talk to them via phone.   Some, perhaps all, will be willing to look at your Dad's records/labs and imaging and tell you if it's worth a trip over here.  As a side note you should begin the habit of always getting copies of all tests, results and imaging.

Since you're closer to the east coast of the US it may be simplest to concentrate there.  Some suggestions  I didn't see in your list would be Lahey Clinic in Burlington Mass and John Hopkins. 
You can use the search function on this site to find posts of others experience at different locations.
As CC is usually slow growing you probably have a little time to make informed decisions before choosing the treatments your Dad wants to try.
Best of luck and keep us  posted.

-Peter

Re: First steps in the battle against the disease. We need directions pls

I know that when I was having problems with my Swedish doctor, I was seriously thinking about visiting my friends in Britain and asking for a second opinion there and that way the swedish medical system would pick up the bill because of their EU agreements. I would check to see what the Spanish agreement is with other EU countries and see if that is beneficial.

I actually had my surgery in Edinburgh as I became ill when I was visiting a friend to be a bridesmaid in her wedding. Mr. Garden and the whole team at Edinburgh Royal Infirmary ROCK! Nothing but praise from me. When I was researching things there was also appeared to be a very good specialist in Denmark which is now escaping my memory. I will see if I can find a reference.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: First steps in the battle against the disease. We need directions pls

My father had surgery for an abdominal aortic anueryism in late July.  It was during this surgery that a mass on his liver was discovered.  The lab work came back as CC.  We feel fortunate that his  CC was discovered earlier than usual.  He has not had any outward signs of CC.  The Doctor's did go in and removed the tumor on his liver and were successful in getting clean margins.  They did remove his gall bladder at the same time.  The oncologist, Dr. Mandanas, seems competent, but clearly admits that there is little data to go on as this cancer is very rare.  My father who is a very healthy 82 year old will be starting chemotherapy soon.  The Dr. have decided to use Gemzar which is a pyrimidine atagonist (antimetobolite) and they will be administering it intravenously through a port that has already been put in.  I have put him on some supplements, which the Dr. does not want him on during chemotherapy.  Unfortunately, the Dr. cannot tell me why he doesn't want him on them, just that they might interfer.  I wanted my dad to go to MD Anderson, Mayo clinic or CTCA, but they seem to be comfortable using this Dr.  Does anyone have any comments or concerns about this course of treatment?  I appreciate your time.

Stephanie

Re: First steps in the battle against the disease. We need directions pls

We live in Minnesota and my wife has been well taken care of at Mayo Clinic.  HOWEVER, her key relationship is with her local oncologist and Mayo provides the technical expertise when required.  Like a couple others have suggested, I would get as educated on the range of options as possible and then get another opinion (closer to home) from a physician you feel confident in.   No two patients are the same nor is there one treatment  that fits every case so try to use this site and others to learn as much as you can before your next appointment.

Best of luck to all of you.

Re: First steps in the battle against the disease. We need directions pls

Thank you very much to all for the every useful advise. Once we have my dad's biopsy results I will contact other consultants for a second opinion (they all ask for a copy of the report which we don't have yet). I have also spoken with Dr Andrew Kennedy at the Wake Radiology Onchology department in NC under Wayne's advice and he told me that in his opinion the best first treatment for cholangiocarcinoma is a combination of: Extrenal beam radiation and chemotherapy (5-FU with Davanat) both for 5-6 weeks and both done at the same time. Has anybody experienced this particular treatment?

Thanks to you all and best wishes.

Re: First steps in the battle against the disease. We need directions pls

My husbamd had 5 weeks of external radiation(IMRT) followed by 3 doses of brachytherapy. He took Xeloda along with the radiation.He had VERY good results, the tumor has been gone for over a year now with no mets. The only thing they can see on his MRI is scar tissue where the cancer used to be. He had a klatskin tumor. I highly recommend that course of treatment. It won't wipe out your immune system like heavy doses of chemo does. Best wishes. Mary

Re: First steps in the battle against the disease. We need directions pls

Thanks Mary. This gives us some hope. If you don't mind me asking, was your husband's Klatskin tumor unresectable too , what stage was it? My dad's apparently is stage 4 although the lymph glands don't seem to be affected yet. Sorry one more question is Xeloda the same as 5-FU? and finally where was your husband treated.

Apologies for the avalanche of questions. I guess not two individuals are the same but just want to get as much feedback as possible.

Thanks very much for everything.

Katia

Re: First steps in the battle against the disease. We need directions pls

Yes my husband's tumor was unresectable. They tried but there was too much growth into the right duct to be able to take out the tumor and have clear margins. At this point I think he is better off with the way things are since he is doing so well. Yes Xeloda is an oral form of 5FU. He did not have the davanat. As far as staging we never really asked and they have never said but there was no lymph node involvement or mets to the liver etc. Everything still looks clear. He was treated at OSU, the James Cancer Center in Columbus Ohio. We also went to the Univ. of Pittsburgh after his treatments were over to basically get a second opinion. They took their own cat scan and confirmed that the tumor was indeed gone.They were very surprised because they assumed OSU's scans simply weren't showing up as well and they had more confidence in their own. We were happy to have both outstanding hospitals agree and feel that his tumor is dead. They all seem to think it will be back but hopefuuly not.Feel free to ask any questions. I think you should definitely go to Dr. Kennedy if possible. Radiation has not been given much as a treatment for this cancer but I personally think that is a mistake. It did not cause any real side effects. Like our radiologist said, a little scar tissue is better than cancer!!

Re: First steps in the battle against the disease. We need directions pls

Dear Mary,

Thank you so much for your prompt and so detailed reply. I am so happy that your husband's tumor is dead. There is no reason why it shouldn't stay like that. We will be thinking of him. We are currently considering the Anderson clinic in Madrid which is a branch of the Andersin clinic in Houston. We are trying to schedule an appointment. Fingers crossed they will have this treatment for him as the hospital where he is now doesn't. Just to let you know Dr Gregory Gores from the Mayo clinic also agrees with this combination (radiation beam therapy with the oral form of 5-FU) as the best option at this satge. Just a couple more questions (sorry for having so many questions) if that's OK. Did your husband have initial surgery like my dad to try to remove the tumor surgically? Did your husband have a stent put in like my dad is scheduled to have put in on Thursday? Is that stent compatible with the treatment? Finally, did your husband have the brachytherapy at the same centre?

Thanks again for all your precious help.

All the best.

Katia.

Re: First steps in the battle against the disease. We need directions pls

Katia,
  Yes my husband did have surgery to try and remove the tumor. They really thought they could but found the tumor to be creeping into his right duct too much. It would have been life threatening for them to remove that much duct. The interesting thing was that they tied off the portal vein to his left lobe and then left it tied off. His entire left lobe that was not all ready necrotic died and dissolved into his body so he only has the right lobe left. I wonder if that helped make his treatment more successful because they managed to cut the blood supply off to the tumor. He did have the brachytherapy at the Jamed Cancer Center also.Brachtherapy entails putting wires through abdominal catheters directly into the tumor site in the ducts and then sending radiation directly onto the tumor. It was not a pleasant experience with all of the tubes and wires etc but it was obviuosly very effective and only took three days of being in the hospital. He has one stent in his right duct which they change every three months. We won't agree to a metal stent because they can cause too many problems and are permanent! Nothing can really be done if they clog. His stents did not create any problems with the treatment. Dealing with the stent is his only problem right now and as long as he gets it changed in time he really doesn't have any difficulties other than a little infection occasionally. Let me know if I can be of any more help. I'm glad I can answer your questions. Take care and best wishes for your Dad and your family.  Mary

Re: First steps in the battle against the disease. We need directions pls

cksvelasco wrote:

MD Anderson clinics as well as through your website of the Wake Radiology onchology centre in the US. Which one should we go to first? What treatment should he be put on? Oxaliplatin, Xeloda, Sorafenib, Herceptin (I hear there is a clinical trial about this one at Anderson for this type of cancer), Davanat? We are a bit lost and don't know what to do next? Please advise! We are also really happy to have found your website.

I Just wanted to say I remember my positive encounters with MD Anderson...it is definitely a place to start.  Although we ended up not going there, the patient intake coordinator communicated with us via email for a few weeks to get my husband an appointment and find the best dr to consult.  At that time my dh was diagnosed adenocarcinoma of unknown primary...it was in his liver but the biospy suggested cholangio.  He ended up having surgery after chemo did nothing for him...and a local surgeon reviewed his case and was willing to give it a try and removed tumor which was in liver but then he typed it as cholangio.  Very strange turn of events...definitely investigate and have hope at this point...something so deep within the body, it is hard to know at first which is the best approach.

Re: First steps in the battle against the disease. We need directions pls

Mary - what good news about your husband!  Right now I am going through the same treatment as he did - Xeloda & radiation.  I pray that my results will be as good as yours! 

You give me hope!

Re: First steps in the battle against the disease. We need directions pls

Dear all,

Thank you so much for all your replies and information. Sorry I haven't been in contact lately but was in Spain with my dad and it was all a bit busy with no easy access to the internet. My dad has had the stent put in in hospital but I was a bit upset when they told us that the only one they could do was a pemanent metal one. They didn't know of any other methodologies. Dear Mary, is your husband's stent made of plastic or metal? What happens if my dad's clogs? We are now starting the process of going with the Anderson clinic to start the radio and chemio treatment and will let you know all of the progress. We keep our fingers crossed. I am just a bit worried that a month has gone by since the operation and he hasn't started the treatment yet. How fast does this thing grow? Dear Mary, it sounds like your husband's operation was very efficient. Unfortunately, both of my dad's bile ducts are taken at the moment so they couldn't do that. Anyways we keep our fingers crossed and thanks again for all your precious advice.

Best regards.

Re: First steps in the battle against the disease. We need directions pls

cksvelasco,

My husband had metal stent and it lasted 16 months before it started to clog up. Signs of clogged stent; jaundice, itching and referred pain on shoulder.
Good luck!

Edith

Re: First steps in the battle against the disease. We need directions pls

Dear cksvelasco,
   My husband has a plastic stent. We won't let them put in a metal one at this time. It does not seem necessary since he does not have any tumor growth. The stent is mainly to keep his duct open because of scar tissue from his radiation treatments. He goes every 2-3 months to have it changed and does fine. My fear is the same as yours- what do they do if the metal one clogs? In time he may need a metal one if the tumor is in danger of closing off the duct . Good luck and best wishes for your Dad and your family. Take care. Mary

Re: First steps in the battle against the disease. We need directions pls

Hi everyone - my dad has a metal stent that has clogged twice. The first time dad developed such an infection he almost died. The second time it was a bit less severe but still spent a week at the hospital.

The second time the dr's added a derivation(?). I had never heard of anything like that but this was about 4 months ago and he's still going with this.

I am already starting to insinutate it might be time for a checkup with the laparoscopist to insure we are not caught off guard. Dad is currently very thin and weak and an infection would likely be it.

Re: First steps in the battle against the disease. We need directions pls

When my husband's metal stent clogged up in Feb. '07, a new metal stent  (longer) was inserted in it. Never had anymore problems with the stent until his passing in August.