Topic: Hello All....Introduction

Hi All,  I found your wonderful site to learn as much as I could to help my mom!  She has been diagnosed in the last 3-4 weeks and as I read from many of you our confusion over this disease is shared by all of you. Her story, quickly.  She went to see doctor after having some pain in her side and they found a tumor between her liver and pancreas (not attached or a part of either organ).  She had no other symptoms, nothing shows in blood tests, all markers are within range but there is a the tumor, I believe a lymph no shows some signs and of course the cancerous cells in the bile ducts where they believe this all started. No blockage at all in bile ducts at this point. She is being treated at MD Anderson (Orlando) and now has a port.  Supposed to start Chemo (not sure of cocktail), but is now being told she "may" qualify" for a trial.  We were told the chemo was to kill off anywhere else cancer may have spread.  Surgeon said he doesn't prefer operating unless it would cure and the location is "risky" to remove. I have been reading the forums and feel better prepared for next Dr. visit (2nd opinion with Mayo (Jax) next week, so already reaping benefits of all who are fighting this.

Some questions for you.....
1.  I see very few mentions of using radiation in posts, is this not used often with cc?
2.  Not that there is a "typical" but is it normal to attack the system with Chemo first and is there specific cocktails to attack the disease in bile ducts?
3.  If she qualifies for the trial Dr. says it is her choice to move forward with it or start with the Chemo. We are just starting the fight and we do not know what questions to ask regarding cost/benefit of clinical trials. Can you suggest things we should ask to help the decision.
4.  What makes someone "inoperable", location?  Spread of the disease?, WHAT?
5.  No mention of transplant by doctors so far, what conditions make someone NOT ELIGIBLE for tranplant.

Lastly,  very upset specifically after reading so much about all of you.  This past Monday mom asked the "how long do I have question".  The doctor said 12 months!  After all I have read I have spent all week trying to convince mom the doctor does not know!!!!  It seems no two cases of cc are alike, atleast that I can tell.  So few cases annually with no clear protocol, anything is possible. We are just beginning our fight, the fact he said this is already sending my emotions into a rage and willing to go with 2nd opinion whatever it ends up being next week!  How do you know after 2, 3, 4 opinions which one to go with! We just want to start treatment whatever it is, gotta do something, feeling like everyday not doing something is a day lost.

Your thoughts are appreciated and GOD BLESS YOU ALL!!

Re: Hello All....Introduction

Hi Sidig,

Welcome to the site. I am sorry that you had to find us all amd I am sorry to hear about your mum. But I am glad that you have joined us all as we will all give you a load of support and help as you go through this. I can so relate to what you are going through right now and how you are feeling as I was the same when my dad was diagnosed back in 2008.

I will try and answer some of the questions that you ask. You ask what makes someones CC inoperable and my dads CC was also deemed as inoperable. In my dads case, his tumour was too close to the portal vein so that ruled out surgery as his GI specialist said that if they tried to remove it then my dad would not survive the surgery. As I said, this is just me speaking about my dads case but I am sure that others have been told that thier CC was inoperable for similar reasons. I am sure also that others will be along soon to share their experiences with you regarding this. As to radiation, again in my dads case, radiation was ruled out as the docs felt that his liver would not be able to handle it.

As to the how long do I have left question. What I would say to that is to please try and not focus on that and think about the now. No one knows for sure how long anyone has and the doctor does not know how long someone will live for. You are right that you are at the begining of the fight, and once your mum gets a treatment plan in place then you will both feel a lot better about things. We have all been there and once the fight back begins then you will feel better. Your mum has every right to seek a second or even a third or fourth opinion. Don't give up hope, don't stop fighting and don't pay too much attention to statistics. We are all here for you.

My best wishes to you and your mum,

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: Hello All....Introduction

Hello Sidig and welcome to our wonderful family! Guess what? Everything you are feeling is normal, we have all been there, done that so you have come to the right place.  With that said, please make sure this ONC has had experience with CC. Very important to be with a doctor who knows that territory. As for no chemo or surgery, it depends where the CC is located. You might want to ask exactly where it is. Take notes, very helpful. How long do we have left? We prefer to know that we were not born with expirations dates on the bottom of our feet. We do not listen to time limits. My goodness, we have people on here for years that were given months. Attitude. That is the best RX, attitude. Yes, this is a monster but we can handle it and in some cases make it whimper! I am wondering how old your Mom is. Could that be a reason why the ONC says no surgery? How great you have been reading up here as to be forewarned is to be forearmed. You have come to the right place to vent, ask or advise. One more question, IF the ONC feels she does not qualify for anything, then why the radiaton? We do not take NO from a doctor. I am wondering how experienced he is and am glad you are going for another opinion. Sending you the best 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: Hello All....Introduction

Hello Sidig!
When I read that your mom was recently diagnosed, it took me back to how I felt when I was first diagnosed.  Overwhelmed, incredibly sad, and shocked.  Your mom probably is having some of those feelings, and I hope she is sharing them with you.  For me, it was truly the first time in my life that I felt I had zero control over my future.  Well, that was until I developed a real plan to start fighting this disease.  There are many ways to fight:  chemo, radiation, diet, exercise, with attitude guiding them all. Your mom has just begun her fight, so allow her some time to mourn the news and then develop the plan!
To answer some of your questions, in my experience, I was given chemo first because I was inoperable.  What made me inoperable was both the location of my tumor (1/2 my liver was cancer and it surrounded the bile ducts and veins), as well as it had metasticized to my lower  back.  Chemo can control the spread, as you mentioned.  But, I do not believe a surgeon would operate until the metastases was taken care of.  I do not know alot about radiation of the liver, but I know it can be done.  Again, each case is individual, so what might be "right" for your mom might be totally different than was is right for me or anyone else.  Regarding the transplant, I believe anyone with metasticized cancer is not eligibe for a transplant. Lastly, if the clinical trial is already in progress, please ask the coordinator about the other participants in the trial.  How old are they?  How are they responding to the treatment?  Are the tumors reducing in size?  Are their tumors/cancer similar to your moms for comparison purposes?   
I wish your mom the best of health.  Remind her to take it one day at a time and don't look down the road that someone has labeled "1 year long".  My road was labeled "6 months", that was 15 months ago, and I'm not going anywhere anytime soon, God willing.
Warmly,
chris

Re: Hello All....Introduction

Hello Sidig. You are certainly in the right place to get a lot of questions answered because there are a lot of "experts" who have experienced every variation of the CC story. I was deemed inoperable because of my lymph node involvement but I was feeling so well I was not that anxious to go through a major, major surgery for what might or might not work...rather would not work. I was given 6 months by my oncologist and 12 months by the surgeon but I am past that already in my 13th month, feeling great and doing all I want to do. I had chemo which did not work and a chemoembolization which did work with almost no side effect...that was directly to my liver tumor but the lymph nodes remain. They have not increased in size or number. I have friends and family all over the world praying for me so I must have some task left to do in this world.

One thing I do with my oncologist's okay is to take 10,000 IU of Vitamin D3 daily, initially for treatment of my MS (multiple sclerosis) at 2000 IU. There have been some articles on the benefit of the vitamin in bowel and breast cancers and a recent research article in the Journal of Cancer 2010 that discusses its use in conjunction with other treatments. I will post that resource when I figure out how to bring it to the site.It might be something to discuss with your oncologist.

Re: Hello All....Introduction

Sidig:

Welcome to the site that no one really wants to join, myself included!  Just about 3 years ago, I had never even heard of Cholangiocarcinoma, let alone how to spell it.  Now it is a common word in my vocabulary!

My husband Tom, age now almost 64.  He had been fairly healthy and had blood test every 3 months because he ws on cholesterol lowering drugs.  In Jan '08 his numbers were fine, in Mar '08 his liver enzymes were 10 times elevated.  Then after multiple tests, we got the word, cancer, cholangiocarcinoma.  His original tumor was just in the left part of the liver, just above where the bile duct splits off into the left part of the liver.  He underwent a successful liver resection where they removed almost 3/4 of his liver.  He had a bile leak where the liver was cut and had two tubes for 7 1/2 months.  After surgery we questioned about the need for chemo, but because they had clean margins, his doc felt that there was no need...(big mistake we now find out).

For 18 months life went on and in Nov '09 Tom started turning yellow.  I knew something was wrong and we went to the ER.  A ctscan revealed a new tumor in the remaining part of the liver.  It was inoperable because of the location and because it involved the hepatic artery.

After a failed internal stent placement, they placed a tube into his liver to drain the excess bile off into a bag.  He then underwent 18 radiation treatments to kill the tumor.  They have tried multiple times to place a stent, but between the tumor and the radiation, they suspect that the bile duct is destroyed, therefore he will have the internal tube and external bile drain bag for the rest of his life.

In Dec '08, his 'then' oncologist told him that radiation/chemo would be of no use and that he should go home and get his affairs in order, and gave him 6 months.  I would not listen to that (Never take NO for an answer).  We sought 2nd, 3rd and 4th opinoins and thank heavens we did.  Although everyone agreed with the 'inoperable' part they all gave us hope with radiation/chemo.

So Tom is still here and in Feb '11 we start the 14th month of life and we WILL celebrate our 10th wedding anniversary.  Tom has a tube exchange every 4 weeks, and may or may not continue IV Chemo.  After radiation, (28 treatments) he underwent an oral chemo with Xleoda.  In Oct '10 they told us that the cancer had metasized to the groin area, installed a port and started him on gemzar/cisplatin IV chemo.  About 4 weeks later, the mass in the groin area was gone.  (was there ever anything there in the first place?  We do not know).  Currently his numbers look good.  Bilirubin is 7,000 (normal is under 3,000) and his tumor markers are 106 (normal is under 30) and he has currently decided to take a break....he says he knows what 'terminal' means and right now has decided to choose quality over quantity.  And if he does not change his mind, I'm OK with that because only he knows how the chemo makes him feel.  I support him 100%.

As I have said before, no one has an expiration date stamped on their butt!  We did ask about a transplant early on in this journey and were told that given the current protocal for transplants, someone with cholangiocarcinoma would not be a good candidate for a liver transplant because even with a resection with clear margins, this type cancer can, and many times will reoccur.  And with Tom's age and other medical conditions, he would not be a good candidate for a transplant.

So here we are taking every day in stride, grateful for each day that we are given, building memories with each other and with our children and grandchildren and friends.  Prayers and faith will become good friends and most of all, attitude helps a lot.

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: Hello All....Introduction

Hi Sidig,

I am 61 and have a Klastin tumor (located where the left and right bile ducts meet).  There is portal vein and heptic artery involvement which makes me inoperable (would not survive surgery).  Half my liver is atrophied (shriveled up because of lack of blood supply).  Stage IV.  I was given 3-14 months to live.  I am now at almost 18 months with no cc symptoms (except chemo brain).

My GI doctor would have liked for me to have a liver transplant, but my tumor grew over the protocol size in one month.  I think you can find the Mayo protocol under transplant in the menu.


Unlike your mom, I do have/need a stent.  I only have one bile duct as the tumor destroyed the right bile duct. 


I was treated at Mayo Clinic in Rochester with daily radiation (except weekends) and 5FU chemo 24/7 (pic line)  for two months starting Sept. 09.  This was a very hard time  for me as I was sick the whole time, in bed almost the whole time, and ended up in a wheelchair when I was taken from the House of Hope to radiation (because of weakness).  During these two months I was also hospitalized with a blood infection.  This time taught me that even though it may not seem like it, you can get better.

I feel the radiation and chemo combo killed the tumor.  It has never shrunk, but it appeared to be a different color after my treatment.  At that time my oncologist said it might be dying from the inside out.

Chemo was suggested to me again a few months later, but I was feeling so good I turned it down.  There are people on this board who have stayed on chemo a few years with evidently good results.  I decided on chemo again a few months later hoping to keep this tumor from roaring up again and to slow the appearance of other tumors.  It's really a hard decision and everyone must do whatever they feel is right for them.  I am now off chemo and feeling very good.

As far as diet and supplements.  I don't take any supplements as I've always hated taking pills (and yet I agreed to have chemo - go figure).  My best friend is a dietitian who has non-hodgkins lymphoma.  When she was first diagnosed she really researched the "cancer feeds sugar" philosophy and found no scientific evidence for it and told me to eat a balanced diet and limit sugar as everyone should.  I probably eat too much sugar.  I do have my "probably false internet cure" which is asparagus twice a day.  Your suppose to mash 4 Tbls up and put it in tea, but I could not do that for more than a few days.  I just eat four long Green Giant stalks right from the can twice a day which is not very tasty.  I figure it has to be good for me, even if it isn't a "cure".  Who knows though, maybe it's part of my cure.  Everyone reacts differently to medicines and supplements.

At my appointments in Dec. my doctors told me I have beaten the odds.  They did not expect me to be here now, let alone with no cc symptoms.

It was hard at first as I would go into the pit of despair, but I didn't stay there long.  I found a couple of Bible verses that brought me much peace.  I also have a great support system and many people who pray for me. Another thing that has really helped me during the days of question about  surgery, a liver transplant, chemo postponed because of low blood counts, etc. is that I've put my treatment into God's hands.  I feel that He is my ultimate physician and will direct my treatment plan, stopping or blocking ones I should not have, so I don't worry too much about that.

I wish the best for you and your mom.

Kathy

Re: Hello All....Introduction

I would like to add some comments to the great responses you have already received.
1.  Radiation is being used frequently for the treatment of this disease.  There are however, some restrictions such as:  tumor location may prohibit the treatment or, tumor may be too large, amongst other reasons. 
2.  It appears that the Gemzar/Cisplatin combo has become  the standard of treatment for this cancer.  It does not mean however, that other treatments are not also being used.
3.  This link will lead you to an informative site.   It explains in detail everything you might want to know about clinical trials however, it does not address the cost issue.  There has been some discussion re: insurance companies to carry the added cost involved, but this is something you might want to find out.  You may have to bear the extra expenses for additional scans, blood tests, traveling, hotel, etc.
http://cisncancer.org/diagnosed/clinical_trials.html
4.  Has been explained well to you by the other members
5. Regional lymph node metastases, peritoneal metastases, or locally extensive disease preclude transplantation.
I could not concur more with what has been said to you regarding life expectancy.  Our members have proven their physicicans predictions wrong and they continue to do so. 
All my best wishes and good luck for the upcoming visit,
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: Hello All....Introduction

Hi Sidig,

I would just like to add my welcome to you and understand the confusion and overwhelming feelings you will experience.

I cannot add anything to your questions, my Dad had a failed resection June 2009 and never had chemo or radiation.

Wishing you strength on the journey with your Mum, please come back and update us.

The support you will get will blow you away, I can promise you that!! Welcome....

Katie

Re: Hello All....Introduction

Thank you to ALL who have responded.  All of your wonderful feedback, stories and suggestions are very appreciated. We have not learned anything new however are armed with even more questions to ask at the 2nd opinion appt. tomorrow and things to ask our original Onc. I will surely post what we learn tomorrow.  We are very hopeful and prayerfully look forward to beginning treatment whatever it may be.

Blessings to all of you!

Sidig

Re: Hello All....Introduction

I also had a large left lobe tumor with two enlarged lymph nodes, one between my liver and stomach and a second one lower in the abdomen. After much deliberation and evaluation with biopsies, a PET scan which did not light up the lymph nodes, and several CAT scans I was told my CC was inoperable. A second opinion agreed with the first surgeon. All of this occurred before I found this site. I was told I had 6-12 months and am currently in my 13th month with a recent CAT scan showing no increase in number or size of the lymph nodes and a receding tumor after treatment with a chemoembolization July 6th, 2010. I have taken 10,000 IU of Vitamin D3 (before I was ever diagnosed with CC ) which has been shown to be helpful with breast and colon cancer and I wonder if it has helped me as I have maintained a high energy level, good appetite and feel better than I did before diagnosis. I did have chemo in March which showed no effect on the CC and so was not continued. I found a research article in the 2010 Journal of Cancer "Vitamin D in Combination Cancer Treatment" regarding the benefit of D3. You may want to discuss it with your oncologist.

Re: Hello All....Introduction

The American Cancer Society web-site provided (esp. useful for those who are newly diagnosed.) a  very general and good info. for understanding about the  bile duct cancer and what  questions you should ask your doctor . I recommend to print them out and read it that way,it is easier.

http://www.cancer.org/Cancer/BileDuctCa … uide/index

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.