CSN Login
Members Online: 18

Cholangiocarcinoma

med1943
Posts: 6
Joined: Apr 2009

In August of 2007, I made an appointment with my doctor because my urine was bright almost neon yellow, my bowels were clay color and I would become very fatigued when I exercised. These were the first symtoms of the disease. Upon seeing my doctor, he told me my skin was very yellow, which I had not noticed and my tongue was covered with a yellowish coating, also gone unnoticed. I had no pain of any kind. He ordered a catscan which showed I had a tumor at the juntion of the bile duct going into the liver. Very little bile was getting through. After many ERCPs at Providence Hospital in Anchorage and a few at the Virgina Mason Clinic in Seattle, the doctors managed to insert two stents into my bile duct so bile could flow through. Every biospy of the tumor, about four, were benign. Through all of these tests, I started getting chest pain and the more they did tests, the more severe the pain became. After several trips to Virgina Mason, the surgeon decided to remove the bile duct with the tumor in it and my gall bladder. He also removed a few lymp nodes. The small intestine was attached to my liver, assuming a bile duct. As it turned out, the tumor was malignant but the lymp nodes were fine. I was diagnosed with cholangiocarcinoma. After 10 days in the hospital, I came back to Anchorage and recovered from the surgery and started radiation and chemo therapy. I've had three catscans and the same number of PET scans since July 2008 to January 2009. Everything looks good so far. But the chest pain still continues. I have since talked to a medical person and they said it could be nerve damage from all of the tests. The doctors cannot figure out what causes the chest pain. Does anyone have any idea what could be causing this chest pain? I am a female and 66 years old and sometimes I don't think the doctors really listen. Maria

schrums4
Posts: 2
Joined: May 2009

my husband is 45 and just now recovering from the same surgery at UPMC in Pa. He had his surgery May 8th and is still in the hospital. He also ahs complained on and off of chest pains. They did do an ekg but it came back normal. /just wandering if you had any problems with bile leaks after your surgery? He has alot of drainage from his right side bag.

ranger44
Posts: 3
Joined: May 2009

I was just diagnosed with cholangiocarcinoma and am 35 years old and in good shape. I don't know what stage the cancer is in but am presenting jaundice which seems to indicate that it's in the latter stages but I'm not sure. I'm trying to do as much research as possible prior to the battery of tests coming to prepare myself for whatever may come.

Does anyone have any information or suggestions?

Thanks.

Lau
Posts: 1
Joined: Jun 2009

Hi

My name is Laura, and I'm doing my MA in research. I've compiled some information, with reference to my dad's case. I've also checked up on the Wikipedia page, and it accurately represents the research!

My father was diagnosed with a Klatskin's Cholangiocarcinoma about a month ago. He is 63, and until about 2 months ago, he looked 50. He was healthy, happy and active; he is now having temporary percutaneous brachytherapy at a high dose rate (they insert an irradiated iridium seed via the tubes sticking out of his sides to the cancer site for about an hour for a given number of sessions). This is done to keep the bile duct patent or open so that bile can flow through the duct into the small intestine. In my father's case, the obstruction of the duct was complete; his jaundice and generalised itching, the first symptoms, alerted us to the problem. With complete obstruction of the bile duct (it's called the Common Bile Duct where the doctors think my dad's tumour is), the bile builds up and moves into the blood stream. From the blood, it gets into cells of the body, giving the patient jaundice (the whites of the eyes yellow too). It also starts to poison the liver, hence the need for radiation and stenting to keep the bile duct patent.

To get to the diagnosis (bearing in mind we are in a third world country, South Africa, and specialists are available but overworked) we had three ERCPs, several X-rays, a sonograph (abdominal ultrasound) and exploratory surgery. My dad's KCC is inoperable (or nonresectable), so his prognosis is poor. We think the next step will be chemo; we are also looking into photodynamic therapy (an experimental therapy that has shown promising results but may only be available in specific hospitals in the USA) and liver transplant. I am not optimistic.

In your case, I think the most important thing to find out is whether or not it is operable. The fact that you have jaundice does not necessarily mean you are far along. I would guess your treatment will be much like my father's (without the hiccups caused by lack of experience in the therapy types!): radiation (external beam or brachytherapy) and chemotherapy; these are used in conjunction with resection (surgical removal) as adjuvant therapy (post-op) or as palliative treatment (non-curative). The radiation is not too bad; with the Synap Forte our doctors prescribed, my father has managed the nausea and pain 90% of the time! Unfortunately, CC is a difficult cancer; our doctors in SA don't have much experience with it, so we're in a bad place to have cancer! But the USA has some of the best medical research and facilities and frankly, is the best place to get cancer!

Hope this helps,
Laura

LauraCAC
Posts: 2
Joined: Oct 2010

Hi Laura,
I just joined as my 63 year old Mother in Law was diagnosed with Stage 4 bile duct cancer. Just looking for information and answers. I hope that this finds your Dad doing well.

Thanks,
Laura

med1943
Posts: 6
Joined: Apr 2009

My first suggestion is to get yourself to a Virginia Mason Clinic. At age 64, I was diagnosed with cholangiocarcinoma. My tumor was in the bile duct outside of the liver so they were able to do a resection (at Virginia Mason). I am doing well, it's been 19 months since the surgery. I live in Anchorage, AK and there is a big difference in medical care between here and Seattle. After my surgery in Seattle, I went through chemo and radiation. It was tough, but I made it. Good Luck to you.

cathyhd
Posts: 8
Joined: Sep 2004

I have Colangeocarcinoma. It was resected. I had preventative chemo (gemcidabine/cysplatin) for several months. My CTs showed clear until last week. Now, it shows an enlarged lymph node in my stomach and the PET confirms a malignancy is likely (though my tumer markers are fine).

We are preparing for the next step. I'd love to talk to you since you had some success. I hope this finds you well!

My cell is 214 734-5023 and I'm really wanting to make the best choice since this is so chemo and radiation resistent!!

DiannesDaughter
Posts: 3
Joined: Jun 2012

My mom has cholangiocarcinoma. She was just diagnosed Dec 2011. We are hopefully going to cancer treatment centers of america in zion, illinois within the next two weeks. They are just making sure our insurance covers everything. My mom is only 56.... very quiet and to herself. SOOOO DEPRESSED. I am trying to find someone who has gone through this rare nasty cancer who might be interested in talking with her? Also, families and caregivers that can help give some insight to myself, my dad and my aunt who will be traveling there with her and we serve as her home caregivers while she is at home. (We live in Lincoln, Nebraska).

Would you be interested in emailing our stories? I have found that it is very hard to get ahold of someone going through this or a survivor or their family etc. Does anyone have any resources for this type of thing?

If you are interested, please email me jparker21988@gmail.com it goes right to my phone and I will respond immediately.

I am in serious need of some support! I know we all are.

- Jess Parker, age 24

moppa1982
Posts: 1
Joined: Jun 2012

My dad had cholangiocarcinoma, he was diagnosed in September of 2002 and, unfortunately, we lost him on November 4,2002. He was stage 4 terminal by the time they found the cancer and it had spread to almost every organ in his body. We went to Cleveland Clinic and they were amazing,even though he was so far advanced, they still treated all of us as a family, and even offered treatment options, which he refused because of the advanced stage.They said my dad was avery rare case in that he had almost no symptoms until that August, which is when he went to the doctor and they started testing him. I am very sorry to hear your mother has to go through this horrible disease and I promise you I will be praying for you and your family during this trying time.

tinabianco
Posts: 1
Joined: Jul 2012

Hi Jess,

My dad was also diagnosed December 2011 with bile duct cancer. His (we were told) is inoperable. They placed a stent and he is getting chemo when he can. His liver levels are always all over the place so sometimes he is unable to get chemo treatment. His dr told him last week it is incurable but they are hoping with chemo to slow it down. My dad is also diabetic and is not watching his sugars at all. He is in the hospital as I write because his white blood cells are so low he is neotropic and his stent canee out for the second time. I has been such an emotional rollercoaster. No one will give us straight answers. I too would like to hear from others going through this rare cancer. My dad is 63. Hope to hear back soon!!

Tina B

CrazywithFear19
Posts: 5
Joined: Apr 2012

My husband was diagnosed with Advanced Stage 4 Cholangiorcarcinoma, out of the blue in April 2012 and was given 6 months to live. We are seeking treatment at MD Anderson, Houston which has excellent facilities.

The doctor said his liver is covered with millions of small tumours and 2 big tumours, one as large as a shoe. He is deemed inoperable and doctor presribed "palliative" chemo consisting of gemzatabine/cysplatin, for every 2 weeks. Last week, his scan showed some slight improvement, which the doctor said the tumours shrunk by about 20% and the treatments will continue.

It has been hard on him as he has always been very athletic. His hands shake a lot, he forgets stuff and he gets tired easily. He quit his job and we are travelling around to see his siblings and friends. This disease has changed our perspective and he is determined to live life to the fullest before giving in to it.

As it happens, we are in Mount Zion, Illinois (small world) right now to see his his brother and will stay until about Aug 2. If you want to meet up to talk to us, we would be happy to. My mobile number is 719-306 9444, ask for YL.

mahipal
Posts: 2
Joined: Jul 2009

Bile leak post liver resection or biliary surgery is very common and it settles down in 8 weeks of time. the chest pain here could be becuase of the sub diaphramatic fluid collecion or serous or bile colection in due course of time mostly setel by it self with good antibiotics and drainanges . iam wondering the bile might have stopped by now
Dr Mahipal reddy

med1943
Posts: 6
Joined: Apr 2009

No, I didn't have bile leaks. My bile duct was removed with the tumor in it, as well as my gall bladder and a few lymp nodes. Small intestine was attached to bile duct in the liver. There doesn't seem to be an answer for my chest pain.

ranger44
Posts: 3
Joined: May 2009
mahipal
Posts: 2
Joined: Jul 2009

It is possible that the chest pain may be becuase of the nerve damage or alternativly there may be some kind of bile leak or sero sanginous discharge which might have been collected beneath the diaghphram and liver and later fibrosed which may some times cause pain in the chest more so on exertion and deep breathing or moovements . and this cannot be detected in usscan or mri or ct if the area is small . all the same you dont have to take it serious it is a small thing will settle down early. Dr Mahipal reddy

med1943
Posts: 6
Joined: Apr 2009

Thank you for responding to my question. Again the chest pain started after the first ERCP. Several more ERCPs were done and the chest pain grew worse. The chest pain continued for nearly a year. It was more painful than the surgery itself. It has improved over the last six months and because of a recent high level on a CA19-9, I returned to Virgina Mason to have an ERCP done so they could view the bile ducts in my liver. No cancer, thank god.

Upon waking from the ERCP, the pain was so severe in my chest, my blood pressure was 189 over 98 and climbing. I told the nurse I needed to stand to relieve the pain. Once standing, my blood pressure went down some. I had to take a pain pill and lorazpam and started to feel better.

sandysharer
Posts: 2
Joined: Aug 2009

It's nice to know that you are doing so well. My husband was diagnosed with Cholangiocarcinoma on July 18, 2009. He was transferred to the Mayo Clinic from a hospital in St. Paul, MN. We were told by the doctors at Mayo that his tumor is inoperable because it is in the neck (junction) of the bile duct. A stint was successfully inserted in the bile duct to aid in the flow of bile. We were also told that this type of cancer is unresponsive to chemo. They gave him 6-12 months to enjoy life. My husband is 56 and very healthy. He wasn't feeling well for a couple of weeks and then the color of his urine and stools changed and he became jaundice. He's taking Oxycotin to help with pain. I wish you well in your journey.

med1943
Posts: 6
Joined: Apr 2009

My tumor was at the at the juction and I was told it was inoperable by my doctor in Anchorage, and that I had a year to live. I went to Virginia Mason Clinic in Seattle and saw surgeon Dr. Biehl. After about three trips from Anchorage to Seattle, it was determined the bile duct with the tumor in it, could be completely removed and the small intestine could be attached to the liver so the bile could flow through. I came through the surgery well, and I did have chemo and radiation (hopefully it did some good) in Anchorage. Everything seems to be working well. The surgery was done on 12/4/2007 and so far I am doing very well. My doctor in Anchorage has a CAT scan done every three months. So far everything looks good. I wish you and your husband well. Prayers and a good attitude is the best advice I can give. Maria

clkempf
Posts: 5
Joined: Mar 2010

Reading your site.. this am.
I am wondering if your husband is still with us or has he passed on? 2 days ago I was suppose to pass my 6 months are over...I am in this stage too. My urine and stool are still ok, no itching so far, and so far everything is a go. Had a Sir-Sphere and chemoembolization last december, just waiting until next visit to Mayo to see if it is working...so far I know the tumors are shrinking, but will it give me longer life? I have no clue. I can only give it to God and pray for a healthy life. I am only 53. Sending prayers to your family.

nanonano88
Posts: 4
Joined: Feb 2011

I am so sorry to read about your husband. My husband passed away in January of Cholangiocarcinoma. He too was told his was inoperable and that our only hope was chemo and that was to just prolong his life. It didn't prolong his life, it only made him very ill. I pray that your husband will enjoy his life whatever time he has left. My husband was 57. The only sign that he had was that his stomache felt as though there was a brick in it everytime he would eat. Upon having a ultrasound they discovered spots on his liver.
Should your husbands stomache start to swell and he has increased pain insist on the doctor draining the fluids from his stomache. It does help the pain. I will keep you and your family in my prayers.

seli
Posts: 5
Joined: Jan 2011

I'm searching for survivors, please help me help my mom. These past few weeks have been very stressful for us. About a month & half ago, my mom was feeling ill while she was visiting in Ethiopia. Them she had to remove her gallbladder, it then they noticed the cancer. They said it was stage 3 gallbladder cancer. After a very stressful weeks, she finally made it here, We took her to University Hospital of Cincinnati & she was there for a week. Now she's home with us. They've told us there is nothing they can do for her except to put her on chemo for whatever time that she has left. They are giving us few months. I'm not letting them take away my hope & faith but at the same time, I'm terrified. I'm searching for survivors who've had the same case like my mom's.

This is her situation, her cancer happens to be Cholangiocarcinoma cancer. I was happy to find all of you who is familiar with this type of cancer. She had catscan & the doctors are saying that it's not operable. It's around & on her small intestine as well as on her liver blood vessel. Usually for this type of diagnose, a kind of surgery that is called Whipple surgery is recommended if I'm not mistaken; however, they are saying they won't be able to do that procedure for her 'cause the cancer is showing on her blood vessel. Has anyone had this kind of problem when they were diagnose? What Chemo cocktail worked for you? Where did you go? & where you able to have the surgery after wards or even before the chemo? Which surgeon did the procedure? I see that few survivors went to Virginia Mason clinic in Seattle, Is that the best place? If anyone has an idea where we can take my mom in Cincinnati, OH or Atlanta, GA from your experience, I would really appreciate it if you could let me know please. My mom will start her chemo by the end of next week. she's having hard time eating so she's eating very little & I would like to know from survivors, What should be good to feed her? The doctors are not helping a lot. I guess it's 'cause they already believe there is no hope for her. she's also a type II diabetic. I'm keeping my faith & hope 'cause that's all I have right now, & I don't want any doctor to take that away from me. Please I need help so bad. if it's easier, anyone with helpful information can email me at selibinu@gmail.com & put CNS-Info on the subject line.

Thanks

Angel322
Posts: 26
Joined: Mar 2011

To read that your Mother has the horrible disease my Mother had. I remember when we first found out that she had Bile Duct Cancer (Cholangiocarcinoma) and no one had ever seemed to hear about this type of cancer. It was so hard and so frightening for me and my family. Her Primary care doctor thought it was her gallbladder. We went from it being her gallbladder to this terrible cancer. It was devastating. We had to wait 4weeks to see if they could operate on her at Johns Hopkins Hospital. I lost 20lbs due to all the stress. My Mother was my life, my best friend, confident, the one always in my corner, who loved me more than life itself. I quit my job to help her, to fight this disease with her and she made it 2years. Please hold onto hope, Seli. NEVER GIVE UP!! Fight with your Mother til the end! Let your Mother eat whatever she has a taste for. Keep her favorite foods on hand and encourage her kindly. Try different things but nothing spicy or hard to digest. Have her drink green tea and keep plenty of bananas on hand because her potassium will most likely drop while doing chemo. Potassium is an electrolyte and its very important that it doesn't drop too low. I used to make my Mother tiny pastina pasta in chicken broth and highly recommend it because its very soothing and easy to eat. Also, be sure to have her drink ensure or carnation instant breakfast to help keep her strength up as best as possible. My prayers are with you and your Mother. Angel

ericamyers31's picture
ericamyers31
Posts: 11
Joined: Mar 2011

OMG! !!! Ur story sounds just like mine... And u must be from somewhere near me cause my mom is getting her treatment at the University of Maryland. I want her to go to Hopkins & get a second opinion. I am begging you please get in contact with me; I want to communicate and share with you... My mom & I are best friends just as you said you and Ur mom are she is my entire life and my hero. Just as I told my Mom, she & I are in this fight 2 gather I am there for her every step of the way. I am just having sooo many felling one minute I am mad, hurt, angry and do not understand why? I have never felt so helplessness in my life...I want to fix my mom but I am at the mercy of Cancer that has invaded my mom body... Please inbox me and we can maybe exchange numbers something. I look forward to hearing from you, I believe in this battle we need all the support & resources’ we can have. I will keep Ur mom in my prayers & please do the same for me.

hateusernames
Posts: 2
Joined: Jun 2011

Hi there, I am trying to make heads or tails of who says what and stuff...I am sorry I have MS and get confused :( I am wondering how your mom is and how her treatment is going? My mom was just recently diagnosed and I am trying to find out as much as possible from people who are going through what our family is going through. Is treatment working? What treatment is she doing? Have she tried multiple types of treatment? Were there a lot of different choices? I just don't know what to ask without sounding rude and imposing, I apologize....I am praying for your mom and hoping hoping that this reply finds her well. Thank you....

The Cancer Assassin
Posts: 5
Joined: May 2010

Hello there,
I was diagnosed out of the blue with stage IV, inoperable, incurable, cholangiocarcinoma on March 24, 2010. All statistics said I would be dead now. Im obviously not :)

I get chemotherapy now every other week and my cocktail is Gemzar/Cisplatin which has been studied to be the best combination of drugs to fight cholangiocarcinoma by the New England Journal of Medicine (study was concluded about a year ago). I also get a nutritional IV from a naturopath once a week. However, now the bank account is very low and I cannot afford to go that often to the naturopath as insurance does not cover it. I can honestly tell you that the naturopath is vitally important to me because it counters all the negative effects of the chemo, well not all of them but I fell incredibly better when I get the IV' than when I don't (the IV's have vitamins, minerals and glutathione in them) I also take many supplements (you can find the list on my blog at thecancerassassin.blogspot.com if you are interested). My blog tells my whole story and also has a ton of links to resources I have been collecting in the past year. My facebook page at The Cancer Assassin also has a ton of resources to share (more so than the blog at this point).

I too have an extremely hard time eating or even being hungry, I would recommend edible marijuana products for that. They really help with the pain of liver cancer (mine is often extreme) and they really help me to have an appetite and to want to eat. Eating is absolutely vital when you have cancer. Your body cannot fight if it is malnourished and most cancer patients actually die from malnourishment than from their cancer, so you can imagine how important it is to get her to eat. Avoid sugars (sugar feeds cancer) and dairy. For me dairy completely makes everything worse. My bile duct goes crazy and I wake up vomiting and with immense liver pain and very phlegmy and congested and coughing up nasties. all from dairy. There is a great cook book called The Cancer Fighting Kitchen that contains a bunch of recipes and even sorts them by symptom (nausea, fatigue, chemo week/day, after chemo, what to eat if you have no appetite, etc) and it is priceless to me.

Whenever you can, cook for her and make her food. Often I do not want to eat cause I feel so crappy and fatigued but if someone were to put food in front of me (make sure it is healthy and not full of chemicals, whole organic food) I would most likely eat at least some of it. Often on days when I have little energy and little appetite I will make a smoothie out of strawberries, blueberries, pineapple, yogurt, protein powder (I use diaryless whey and it tastes very good) coconut water (natures own gatorade and oh so good for you), almond mild (my milk substitute, no soy!) and whatever else sounds good. It is like a meal in a mug, so I know I get all my vital nutrients even though I don't feel like eating.

I could tell you so much, but I don't want to ramble....Please let me know if I can help in any way.
Many many healing vibes and prayers to your mother. And you are right! most doctors aren't extremely helpful mostly because they cannot recommend something that is not "scientifically proven" like the naturopath and pretty much anything "natural" at all. They usually stick to what they know and that is synthetic drugs.

I hope this helps.

Laura

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

I am caretaker to my husband who has been sort of newly dx with cholyangiocarcenoma. Actually had surgery in Sept, '10 and surgeon was sure he got it all and two subsequent CT scans confirmed that. We went to Florida for the winter and came back to his regularly scheduled appointments with surgeon and oncologist and new CT scan was a wreck. Stage 4 unresectable Choly... he will b getting Gemzar/Cisplatin chemo soon. Glad to hear it is working for you and hope it helps him. The oncologist calls it palliative chemo. Your story gives me back a little hope that he will make it ast least as long as you. Thanks, and as I said Keep up the good work!
Shirley

NaplesRI
Posts: 2
Joined: May 2011

Laura,
I was so happy to read of someone receiving the same Chemo I am now getting- Gemzar/Cisplatin. (I was on oral chemo pills last fall)
I just finished my 4th of 6 cycles (2 weeks of chemo once a week, 1 week off)
I am fortunate that I have had no nausea with the chemo and eat better now than I have in quite a while. I also have not lost my hair which makes me feel good.
I was diagnosed last summer and had my gallbladder removed. I was told no further surgery can help and that I have 6- 12 months to live, maybe longer. The cancer did spread from my bile ducts to liver.
My question to you is how long have you been receiving chemo? My Dr said that when I finish my 6 cycles I get a "chemo holiday" and she will watch what happens via cat scan results. It sounds like it's possible that she would put me back on this chemo in the future.
My pain comes from a cyst in my liver which I am considering whether to have it drained. Not sure what I will do there.
I just found this site today- it is so good to know others share my cancer- though I hate it for everyone as it is one of the nastiest cancers!
I look forward to hearing from you.
Linda

ericamyers31's picture
ericamyers31
Posts: 11
Joined: Mar 2011

I am very intrastate to know how you'll was able to get this kind of chemo because my mom was on the oral kind which has made her soo very sick. She just fished up 6-weeks of chemo which has made her lose over 60 lbs. she barley eats,(expect for pop cycles) everything makes her sick. O am willing to take any suggestions as to what to feed her? she has to stints on the outside draining her bile ducts.. PLEASE I am at my wits end i don't know what to do to help her. my mom is such a beautiful person she has been in the nursing field for over 30 years and its like she is just a shell of her self.. My mom is my best friend, she is my LIFE,MY Hero and i am willing to try anything to help her have just a little bit of a quality of her life back..Please email me at ericamyers31@aol.com or on here or reply to my message please!!!

NaplesRI
Posts: 2
Joined: May 2011

Laura,
I was so happy to read of someone receiving the same Chemo I am now getting- Gemzar/Cisplatin. (I was on oral chemo pills last fall)
I just finished my 4th of 6 cycles (2 weeks of chemo once a week, 1 week off)
I am fortunate that I have had no nausea with the chemo and eat better now than I have in quite a while. I also have not lost my hair which makes me feel good.
I was diagnosed last summer and had my gallbladder removed. I was told no further surgery can help and that I have 6- 12 months to live, maybe longer. The cancer did spread from my bile ducts to liver.
My question to you is how long have you been receiving chemo? My Dr said that when I finish my 6 cycles I get a "chemo holiday" and she will watch what happens via cat scan results. It sounds like it's possible that she would put me back on this chemo in the future.
My pain comes from a cyst in my liver which I am considering whether to have it drained. Not sure what I will do there.
I just found this site today- it is so good to know others share my cancer- though I hate it for everyone as it is one of the nastiest cancers!
I look forward to hearing from you.
Linda

(reposted because I think I posted to someone else's comment previously)

ericamyers31's picture
ericamyers31
Posts: 11
Joined: Mar 2011

where do you get the edible marijuana products, my mom is barely eating, she is always eating just Popsicle, and that's it..I am terrified she is making it worse by not eating, she has never ate milk products.Therefore i don't know what to cook her, we have always worked nights 2 gather so we did eat out allot.. and now that kind of food is just soo hard on her. she is always getting sick no-matter what she eats, and the pain med. have her all bounded up inside?? PLEASE PLEASE Anyone i will try anything!!

hateusernames
Posts: 2
Joined: Jun 2011

Hi Laura, I hope this reply finds you well...My mom, who was doing absolutely fantabulous was complaining about itching, and we noticed she was yellow (really sudden onset) anyways we took mom to the ER and they found that her heart rate was very low, and did a battery of tests, the doctors told us that mom has a softball sized tumor in her Liver. Her heart rate was extra low due to all of the poisons backing up in her system. They told us her liver was not draining due to the tumor pressing into the bile ducts and blocking them. She was diagnosed with terminal Cholangiocarcinoma. The doctors didn't give us a lot of hope, they pretty much told us my mom had a few months to live and we should look into Hospice, they told us they wouldn't do any type of surgery for this and any thing we did do, would be palliative care, it may buy us some time.My sister and I were dumbfounded, we had no idea what to do. We are still in shock, this was just a 5 weeks ago. We decided to seek the best care we could find. We are in California, and we hear that the City of Hope is the best. Let me back up, while still in the hospital, the doctor put a billiary bag directly into the good part of her liver to drain the toxins in her body. It seemed to work well and the itching and yellowing started to go away. She left the hospital and we immediately scheduled mom for any appointment. While waiting for her appt. mom went through a period where she wasn't drinking or eating as much as she should and ended up in the hospital again, b4 we could get her to the specialist. She was sent home and has been doing awesome, but Fri. had a problem with fever and we found ourselves in the ER again. I am so frustrated , she still has not seen the Oncologist. She finally will this Thurs. I was wondering what your CA-19 levels are and if you have heard of Chemoembolization? (sorry for the misspells) Mom is a 2x cancer survivor, her 1st time she had Uterine (she beat it) 2nd time she was diagnosed with stage 4 Colon cancer (she beat that too!)
I am confused because they tell us this is Bile Duct Cancer, but yet the tumor is in her Liver, they tell us the liver has no cancer and her Pancreas is clear.
I was wondering what ur treatment is like and how you are feeling. My mom doesn't have any pain, I was wondering if you do? I guess I am just trying to hear more about your story and what the doctors say your prognosis is. I was wondering if your treatment is making you terribly ill? I was wondering if you had to do any of it all over again, would you? I am sorry if I sound like an idiot asking you these questions...I just don't know what to do....I just need to know if any treatments are worth my moms quality of life. I pray for you and your recovery, I pray that the Lord touches and heals you completely. I believe in miracles. I pray for them....thank you.

Angel322
Posts: 26
Joined: Mar 2011

Please write to me at my private email. I would like to answer your questions and talk with you about your Mother. My Mother had choloangiocarcinoma. I was her nurse for two years and would like to help you. You sound very lost. I've been there. I only wish I knew about this site at the time. Please write me at angelbaby300000@yahoo.com I am praying for you and your Mother. Hugs.

Ishi
Posts: 2
Joined: Mar 2012

Dear Laura,

I m writing to you from India. My Dad has just been diagnosed with cholangiocarcinoma. He had Jaundice earlier which did not cure after repetitive attempts and has been suffering from last three months. Has lost his appetite and his health is detoriating day by day. I have not yet informed him of actual diagnosis. Shall update him with the same in a day or so. The doctors say he has passed the cureable stage and the disease can only be treated not cured. Still I dont want to loose any hope. Can you please suggest me a good Doctor who i can get in touch with. Also, he is a cardiac patient under gone a bypass surgery in 2010, he has a Blood Pressure and diabetes as well.

Let me know if you can help me for the same.

Regards
Ishita
ishita_dujari@yahoo.com/ishi.dujari@gmail.com

nkl2012
Posts: 1
Joined: Apr 2012

hello ishita.
first of all i request you to have will power and patience. I am also writing from India and based upon my past experience of a similar kind i would like to give you some information which i am sure will defifintely help you to clear your doubts . I lost my mother a month back she was also suffering from cholangiocarcinoma which was diagnosed in july 2010.Her cholangiocarcinoma spread to liver which resulted in her untimely demise.
1. In this disease there is obstruction in bile duct due to tumour which prevents the flow of bile from liver to intestine. The bile starts building up in liver and results in itchig, yellow discolouration of skin, yellow ness of eyes and is called jaundice.

2.Since your father was diagnosed with jaundice around three months back, you have not mentioned did doctor placed stnets in his bile duct to relieve him from jaundice. Placement of stents is usually the first step so as to relieve the patient from jaundice symptoms.

3. After placement of stents doctor decides whether surgery could be performed or not. if surgery can be performed chances are good . however in majority of cases the cancer is diagnosed only when it is in advanced stage and chances of surgery are almost nil.From my experience i would like to add one more thing that the placement of stents should be done by highly experienced gastroenterologist only otherwise there are chances of infection called cholangitis which is very difficult to manage.

4. I cannot comment on the chemotherapy / radiotherapy pros cons bcause my mother refused to go for it becaue of the side effects asociated with it. I can definitely give you some information regarding the hospital from which my mother got treatment a s well as some alternative therapies which can be useful in improving th life span.

5. we had a bitter experience of treatment in some hospitals of Punjab where infection developed after insertion of stents as mentioned by me.We therefore decided to take my mother to Medanta ,Medicity, Gurgaon in the gastroenterology Department where previous stents were removed and metal stents were inserted through a process called PTBD after which my mother was relieved completely of jaundice and infection in a few days. Although treatment is costly in this hospital but trustworthy and fruitful. I therefore suggest you to consult once at this hospital to know the exact stage and treatment options.
6. After my mother was discharged we decided to put her on alternative therapy. We started the medicine of Divya yoga Trust which included of aloevera juice , herbs , gomutra, tulsiras .After using all these medicines my mother regained her lost health in a months time . I dont mean that the tumour had gone but its growth was definitely arrested by use of these medicines . My mother remained fine for around 10-12 months but after that we came to know that tumour had advanced to liver which was an indication of advanced state and ultimately we had to prepare ourselves for this loss.After my mothers loss i decided to associate myself with some forum because if somebody is helped from my experience i shall feel highly satisfied and this is the reason why i am posting on this site .i also request you to stop sugarfree tablets if your father is using such tablets because these are also associated with tumours and are not safe at all. At last i can only say that there are certain things beyond our control but inspite of it our duty is to put in the best of our efforts and therfore i request you to have will power and take as much care of your father as you can . I am sending you a mail of the same post so that if you have any kind of query in your mind you can revert back to me. ok gud bye

Er Neeraj
India

sbaghwala
Posts: 1
Joined: Aug 2012

My Father is also diagnosed with cholangiocarcinoma we are at Medanta and Dr Baijal is scheduled to insert a stent,have you taken other opinion in Delhi I have heard the name of Dr G.K Rath(AIIMS).

Ishi
Posts: 2
Joined: Mar 2012

Dear Laura,

I m writing to you from India. My Dad of age of 53 has just been diagnosed with cholangiocarcinoma. He had Jaundice earlier which did not cure after repetitive attempts and has been suffering from last three months. Has lost his appetite and his health is detoriating day by day. I have not yet informed him of actual diagnosis. Shall update him with the same in a day or so. The doctors say he has passed the cureable stage and the disease can only be treated not cured. Still I dont want to loose any hope. Can you please suggest me a good Doctor who i can get in touch with. Also, he is a cardiac patient under gone a bypass surgery in 2010, he has a Blood Pressure and diabetes as well.

Let me know if you can help me for the same.

Regards
Ishita
ishita_dujari@yahoo.com/ishi.dujari@gmail.com

omayrap
Posts: 2
Joined: May 2012

Laura your story has just inspired me even more, I am going to get the cookbook and go on your blog and facebook page. My dad's cancer has spread to his liver and he has swollen lymph nodes around his stomach area. Only treatment at this point is chemo, he was told they would administor Cisplatin which he took at the Smilow Cancer Center in Yale New Haven, he is now being treated in Danbury, CT with another oncologist. His tumor is not operable and all we keep hearing is that chemo will only prolong life. I want to try all of these other remedies to see if we can keep him here longer.

Thank you.

clkempf
Posts: 5
Joined: Mar 2010

I too have had procedures done, and have mystery pain...mine is in my right side. Was also told "probably" nerve damage or aheasions....(do not know how to spell it but you get the jest), I am very thankful for the gift of surgery , but like you it hurts....I am 54, diag. 2009, Stage 4 w/mets in liver. Thank you Jesus I am still up and running.

ericamyers31's picture
ericamyers31
Posts: 11
Joined: Mar 2011

WOW THAT'S GREAT, you just gave me hope.. my mom is stage 2; but she has had soo many problems, and she has those stints in her bile duct which are on the outside and she has to drain them everyday. I just need help, hope anything to help my eat and get some strength. so was the cancer in your Bile duct/ WHAT HOSPITAL DID YOU GO TO? May God be woth you and keep you healthy & safe. Thanks

Angel322
Posts: 26
Joined: Mar 2011

to Cholangicarcinoma. She died in my arms. She took part of me with her when she let go that day. It was the most difficult day of my life. I still can't believe she is gone. I was her nurse for two years. I took her to every appointment, treatment, procedure and stayed overnight and at the hospital with her after her surgeries. I took care of her Biliary drain 7days a week and did everything I could to help her fight this terrible disease! I am the luckiest girl in the world because I had the most incredible Mother! She was an Angel on earth...so loving and giving to everyone she ever met! She adored me and I adored her. The bond my Mother and I had was so beautiful and will never die...it will live on and on forever!

I pray for all of you out there with this disease! My heart goes out to each and every one of you suffering with this terrible disease and to all the daughter's and children like me that love their parent so much and so desperately want to help them! Hugs! Angel

northa914
Posts: 89
Joined: Mar 2011

So sorry for your loss. She not only sounds like she was an amazing woman, she also has an amazing daughter who truly did and still is living up to her name. Thank you for your thoughts and prayers, they do mean a lot to we who are afflicted with cancer and those who care for us. Their love gives me the strength to fight for I fear the pain they would suffer more than my own death. My heart goes out to you today and everyday, words cannot begin to express how I feel for you. Take care, you are in my thoughts and prayers also!

Andrea

Angel322
Posts: 26
Joined: Mar 2011

Andrea,

Your reply means so much to me. What your wrote was very moving and brought me to tears. I cannot thank you enough!! My Mom would be so touched by your kindness for me and for her. I truly lost the best person I've ever known. I would give anything to have her back. She is my hero forever! I very much care about everyone affected by this terrible disease and want to carry my Mom's fight on by reaching out to others to give my support. She would be very proud of me for that. Always know you are loved, your family/kids would cure you or change places with you, if they could. I would've done anything to help my Mom. Please write to me anytime here or at my private email at angelbaby300000@yahoo.com. I would love to keep in touch with you. My prayers are with you and your family always.

Sincerely,

Paula

northa914
Posts: 89
Joined: Mar 2011

Hi Paula,

I sent an email to you, please let me know if you didn't receive it. Please use that email address to reply if you ever need to "talk", vent, share...anything anytime! I wanted to see how you were doing and thank you for all of your supportive messages to all of us. Hope you're enjoying the summer, it's my favorite season of the year!

Take care, you are in my thoughts!

Andrea

Jersey Girl
Posts: 3
Joined: Jul 2011

My mom, age 78 was diagnosed with Cholangiocarcimona in March, 2011. Her liver lesion was discovered by a fluke. She had fallen a few months back and was having persistent pain in her right side. Her doctors did x-rays which were negative and finally an ultrasound thinking it was her gallbladder. The first ultrasound was clear except for a chronic gallstone, however a repeat showed a liver lesion. From there she had a biopsy which was negative/inconclusive. I still had my suspicions so I had her ask her doctor for a repeat ultrasound. The liver lesion had grown! Her doctor wanted her to have a repeat biopsy, but I felt we were just wasting time. I went to the web site for Memorial Sloan Kettering Cancer Center in New York and obtained the number to speak with a case manager. From the nurse case manager we were referred to a MSKCC surgeon. Up to this point we thought it was Cancer of the Liver, but were baffled by the negative biopsy. The MSKCC surgeon knew right away what is was. In April, 2011 she had a Right Liver Resection. (Bile Ducts run thought the Liver). She had multiple post operative complications and now almost 4 months later, she is finally feeling well. Now we are faced with consultations with medical oncology for chemo and radiation and it has been frustrating. There has not been adequate research and clinical trials for adjuvant therapy following surgical resections for this type of cancer. We are told there are three post op courses one could take: Observation, (just follow up CT Scans), or Chemotherapy and Radiation or just Radiation. The statistics for survival/reoccurence appear to be almost similar no matter what avenue you pursue. My mom does not want to put herself through Chemotherapy or Radiation knowing the treatments may not prevent a reoccurence. Quality of Life is important to her as she always been a very active person. I found a physician at Mount Sinai in New York who specializes in pathology and Cholangiocarcinoma and we are going to get another opinion. Up to now what she have been told is that 5 year survival with just the Observation avenue is 36% and with Chemo and Radiation 40%. Not much of a difference after putting yourself through all of the side effects of Chemo and Radiation which takes months just to recover from them. The Memorial Sloan Kettering staff and surgeon was wonderful in my mother's surgical care and final diagnosis. She will continue to follow up with the surgeon periodically, and he is very supportive of the path my mother will choose for continued treatment, if any. I hope this info helps someone and their loved one.

Angel322
Posts: 26
Joined: Mar 2011

My Mother had the same exact disease as your Mother. Sadly, I lost her Father's day of last year. My Mom had a resection, then chemo and radiation. My Mom had 28 radiation treatments and was burned so badly internally from the radiation that she had to have emergency surgery to repair her whole stomach. How she survived that was miraculous. However, I truly believe the radiation not only caused her such destruction internally, but it brought the cancer back after the surgery and they opened her up. Her scans were all fine before this. You are doing the right thing by getting another opinion and being cautious before you put your Mom through anything else. I really commend you for that! Too many people put their lives in the doctor's hands and bad things can happen just like to my Mom. They do xrays once a week also when a patient is doing radiation, yet, everything always showed fine. All the while, the radiation was burning her insides, not keeping the cancer away! I have much regret with my Mom doing the treatments and always wonder what if she hadn't done them? We could've traveled, she could've had a better quality of life...and so and so on.

I wish all the best for you Mom and will pray for her and for you! Treasure her each and every minute of everyday, because when you lose your Mom, your world will never shine the same. :( My Mom and I were best friends and everything to each other, this disease robbed me of so many years with her. I'm here left devastated but I hold on for her and I'm here to help others as much as I can. You keep being the wonderful daughter you are and advocate for her and see to it that those doctor's do everything for your Mom. I took care of my Mom for two years and was her full time nurse and caregiver, there wasn't a thing I didn't and wouldn't have done for her. I must ask one thing...does your Mom have a biliary drain? I took care of my Mom's 7days a week. Stay strong and tell your Mom to keep up the good fight!! I am here pulling for her to beat this thing! My Mom is watching her and ALL the patients here with this terrible disease. Hugs, Angel

Jersey Girl
Posts: 3
Joined: Jul 2011

Thank you for your caring ad supportive words. I am so sorry for the loss of your mother. You must have been a great comfort to her. I am sure she is with you and watches over you everyday. I can only imagine the profound sadness you must feel.

My mom does not have a biliary drain, thankfully. It did take her almost 4 months after surgery to finally get back to feeling like herself. She did have several post-operative complications.

Cancer is such a heart wrenching diagnosis for a person to hear and their family. I can only hope that research continues to find a cure for all cancers and that the treatment options are not so debilitating.

The reaching out to others with similar situations is a great way to provide education and guidance and hopefully a positive outcome for someone will prevail.

I will continue to post what I learn about this cancer and I hope it will help someone else.

Warm regards,

Eileen

betzee
Posts: 3
Joined: Apr 2012

Hi--your post was very helpful. my husband was also just dx with cholangiocarcinoma...and we went to sloan. Dr. Fong will be operating on him. Who was your mom's surgeon? i'd like to hear more about your decisions etc. and if your mom is still alive. this is so heartbreaking, i'm still in shock. God Bless you.

Jigger
Posts: 2
Joined: May 2009

Hi Jersey Girl
I took Capecitabene Chemo pills and radiation after my 9 hr surgery for this cancer. I may not have chosen to do chemo if it was going to be intervenously but the pills were not bad. Still not great but not nearly as bad as through the veins. I also did 5 weeks of radiation while reducing my chemo pills percentages during the radiation. My surgeon who specializes in this area at LHSC in london, ontario was thrilled when i got to 3 yrs. Now it is 6.5 years. However he told me that in late stages of age, there is not a lot they can do depending on circumstances.
If you have any other questions, let me know. I wish all of your family well.
Jigger

omayrap
Posts: 2
Joined: May 2012

My heart goes out to you and your family. I am sure the pain is unbearable. God bless.

Jigger
Posts: 2
Joined: May 2009

Hello
If you took capecitabene chemo pills for treatment, they directly weaken your heart muscles, deteriorate your eye site, and leave you very open to diabetes. I am surviving 6.5 years now. I f you have any other questions, let me know. I hope it helps.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network