Bile Duct Cancer

Kellycampbell

JMKK said:

Hi Laura
My mom has been taking Gemcitabine and Cisplatin (chemos) since 7/6/09 every other week at MD Anderson Cancer Center in Houston. She had a stent placed in her bile duct in May and once July came she was very sick and we thought it was because she started chemo. However, we were first told that the plastic stent would be good for 4 - 6 months, but then another GI doctor told her that her stent should not have been in over 2 months and sometimes should be replaced after 2 weeks and that is why she was so sick (nauseous, fevers, chills, vomitting, etc). She got her stent replaced 3 weeks ago and she has been feeling great since. The chemo is not even affecting her (so now she is worried it isn't working). She got a CT scan on Friday and will find out all of the results on Thursday to see if they think the cancer is shrinking, staying the same or not responding to the chemo based on her CT scan, her ERCP results and her tumor marker. The Oncologist told me they just recently got a study back on giving Gemcitabine and Cisplatin to cholangio patients - which was king of surprising b/c they have been using these chemos for years, but the statistics are as follows: 30% of patients show tumor shrinkage, 60% show that it has caused the cancer not to spread, just remain the same and the last 10% it does not help. However, the shrinkage and cancer remaining the same only lasts for 6 months (on average). Her cancer has been said to be "locally advanced" with stages 3 & 4.

What abour your father? Is he getting any treatment?

I am not too excited about MD Anderson so far, in all honesty. I work in healthcare and I am not impressed. I have been researching alternative treatments, like IPT therapy, pure oxygen injections, natural supplements, etc etc. And ALL of them that I ask the Oncologist, he has no idea that they exist. It is quite concerning to me for a hospital that is supposed to be the leader in cancer care and research to be giving the same chemo for years and years that does not have a great outcome and no knowledge on treatments that seem to be working.

Can you tell me what your father is doing and how he is feeling?

My mom is not working, but she does everything besides that - swims, cleans house, cooks, etc. It is nice to see her feeling so well and looking so well because all that I read is terrible about this disease. She has been so healthy her entire life and is very young (53). I feel like if anyone has a shot at kicking this cancer to the curb it could be her. We just need to know the right thing to do.

I hope this helps.

Call me anytime - I will leave my number on this post so that anyone can contact me. I would love to know more about this cancer in hopes that we can help our loved ones through this. 281-788-1628.

Sincerely,
Julie

Julie, hi question for you
My mom was diagnosed a couple of months ago with Bile duct cancer. it has spread to her liver and lungs. I noticed you said you have checked into alternative methods. have you found anything you feel is helping? We found the same discouragement at Mayo clinic with alternative efforts. even diet. They did not recommend anything!

So just wondering if you have come upon anything!

Thanks,
Kelly

JMKK

Kellycampbell said:

Julie, hi question for you
My mom was diagnosed a couple of months ago with Bile duct cancer. it has spread to her liver and lungs. I noticed you said you have checked into alternative methods. have you found anything you feel is helping? We found the same discouragement at Mayo clinic with alternative efforts. even diet. They did not recommend anything!

So just wondering if you have come upon anything!

Thanks,
Kelly

Hi Kelly
Hi Kelly,

I haven't posted on here for a while, but I wanted everyone to know that my mom is doing well most days. She was diagnosed in May 2009. She has been on Gemcitabine/Cisplatin, but developed a severe lung reaction to Cisplatin. She took a break from chemo over the holidays and is now on Xeloda (Cepacitabine) and Gemcitabine. She had a PET Scan in the beginning of May and it showed great results (the leasion on her liver shrank, the scan showed no new cancer growth, and the enlarged nodes on her abdomen were smaller)!! Even her tumor marker went way down (from the upper 300's to the mid 100's). It has slightly risen in the past few weeks to the lower 200's. She gets fevers and doesn't feel well from the chemo, but some days she goes to work and does everything she can. (She feels great today, and is grocery shopping as I am typing this.) She still gets her stints replaced every 2 months (plastic ones). We had a scare in March that they had a hard time getting in to replace her stints, but her last ERCP in May went very well and they said the obstructions looked much better.

I just checked out the website www.cholangiocarcinoma.org and it seemed pretty impressive. I am encouraging my mom to register. As for natural supplements, she still takes some and has tried several different things. It is hard to tell what works and what doesn't when you are mixing them with chemo therapy. I have had several people call me from my previous posts and am working on setting up an email list. If you would like to be added to it, please let me know. My email account is thebalm@yahoo.com. If anyone would ever like to contact me regarding their cholangiocarcinoma or more details, my number is 281-788-1628.

Sincerely,

Julie

arood

judithpepin said:

cholangiocarcinoma survivor
Hi Tammy: my 47 year-old brother was diagnosed Nov 2009 with Stage IV inoperable cholangiocarcinoma with mets to the lung. He, was "given" a prognosis of 6-9 months but is hanging onto the hope that there are people out there who have survived longer. I know it has been 6 years since your post above, and forgive me, I don't want to open up old wounds, but can you please tell me how your mother did on her chemotherapy and if she took any other alternative/complementary therapies? My brother is taking gemcitabine/oxaliplatin but I'm looking for any other therapies that might help. He is so depressed and I'm ready to do anything to help him both medically and emotionally. TO that end, I've been searching the databases for anyone who survived past 2 years to tell him their story, just to give him hope. Thank you. Sincerely, Judi

Hi Tammy, I also have been
Hi Tammy, I also have been diagnosed with bile duct cancer that has spread to the lungs. I am 46 years old and already did the gemcitabine/oxaliplatin but the cancer is back. We are currently seeking anything option available to keep me alive in hopes a mircle or new cure comes along. I have been given a time frame of 6-18 months.
I am wondering how your brother is doing, with hopes he is still alive and you have found some sort of treatment for him, and if so wondering what that might be.
I am getting a scam next week which will dictate my next steps. Thanks Art

balboa

Kellycampbell said:

Julie, hi question for you
My mom was diagnosed a couple of months ago with Bile duct cancer. it has spread to her liver and lungs. I noticed you said you have checked into alternative methods. have you found anything you feel is helping? We found the same discouragement at Mayo clinic with alternative efforts. even diet. They did not recommend anything!

So just wondering if you have come upon anything!

Thanks,
Kelly

my father was also recently
my father was also recently diagnosed with bile duct cancer that has spread to his liver i am searching for what to do

fiddlemeister

balboa said:

my father was also recently
my father was also recently diagnosed with bile duct cancer that has spread to his liver i am searching for what to do

Mother and Grandmother died from this cancer, now..
I'm 28 years old,and my mother passed away from what was likely Bile-Duct Cancer that had metastasized to her liver. They never really confirmed the source, and my father didn't allow an Autopsy to find out. This was 2 years ago and she was 50. Last October, her mother passed away at 74 from metastasized Bile-Duct Cancer, original source discovered by an autopsy.

I didn't know this until yesterday cause everyone had forgotten to tell me the source cancer in all the craziness of the last two years.

Now I am my Mother's only daughter, and I'm experiencing symptoms of a gallbladder problem for the last week and a half. I have yet to see a doc, I'm a professional musician and don't have insurance. I carried an individual policy for a while and got burned by the company.

Anyhow, when I told my Mother's only sister of the symptoms I was experiencing and my suspicions of a gallbladder problem, she told me that the source cancer for my grandmother and possibly my mother was Bile Duct Cancer. This was the first time I was told this.

Now I'm trying not to freak out, cause I'm so young and in good shape, eat healthy, etc, and shouldn't be having symptoms like this anyway. Now that I know it was the type of cancer that my grandmother and possibly my mother had, it's really scaring me.

I don't know whether to go to the doc now, or get insurance first before going, or if it would even matter if I got insurance at this point.

So, any advice? I know I probably shouldn't freak out at this point, but...

Thanks!

RayLogu

fiddlemeister said:

Mother and Grandmother died from this cancer, now..
I'm 28 years old,and my mother passed away from what was likely Bile-Duct Cancer that had metastasized to her liver. They never really confirmed the source, and my father didn't allow an Autopsy to find out. This was 2 years ago and she was 50. Last October, her mother passed away at 74 from metastasized Bile-Duct Cancer, original source discovered by an autopsy.

I didn't know this until yesterday cause everyone had forgotten to tell me the source cancer in all the craziness of the last two years.

Now I am my Mother's only daughter, and I'm experiencing symptoms of a gallbladder problem for the last week and a half. I have yet to see a doc, I'm a professional musician and don't have insurance. I carried an individual policy for a while and got burned by the company.

Anyhow, when I told my Mother's only sister of the symptoms I was experiencing and my suspicions of a gallbladder problem, she told me that the source cancer for my grandmother and possibly my mother was Bile Duct Cancer. This was the first time I was told this.

Now I'm trying not to freak out, cause I'm so young and in good shape, eat healthy, etc, and shouldn't be having symptoms like this anyway. Now that I know it was the type of cancer that my grandmother and possibly my mother had, it's really scaring me.

I don't know whether to go to the doc now, or get insurance first before going, or if it would even matter if I got insurance at this point.

So, any advice? I know I probably shouldn't freak out at this point, but...

Thanks!

bile duct cancer
get to the doctor pronto! ask a case worker to set you up for medicade if you don't have insurance, you may qualify.
My bile duct cancer was in the ampulla of vater and I had surgery within 4 weeks of finding the mass. Was very fortunate to have a successful Whipple surgery and recovering well. My surgery was 5/15/10 and I am already back at work. ( male age 77, working part time as design engineer) I had family history of other cancers and consider myself very fortunate to have early detection.
Ray
North Carolina

RayLogu

JMKK said:

Hi Kelly
Hi Kelly,

I haven't posted on here for a while, but I wanted everyone to know that my mom is doing well most days. She was diagnosed in May 2009. She has been on Gemcitabine/Cisplatin, but developed a severe lung reaction to Cisplatin. She took a break from chemo over the holidays and is now on Xeloda (Cepacitabine) and Gemcitabine. She had a PET Scan in the beginning of May and it showed great results (the leasion on her liver shrank, the scan showed no new cancer growth, and the enlarged nodes on her abdomen were smaller)!! Even her tumor marker went way down (from the upper 300's to the mid 100's). It has slightly risen in the past few weeks to the lower 200's. She gets fevers and doesn't feel well from the chemo, but some days she goes to work and does everything she can. (She feels great today, and is grocery shopping as I am typing this.) She still gets her stints replaced every 2 months (plastic ones). We had a scare in March that they had a hard time getting in to replace her stints, but her last ERCP in May went very well and they said the obstructions looked much better.

I just checked out the website www.cholangiocarcinoma.org and it seemed pretty impressive. I am encouraging my mom to register. As for natural supplements, she still takes some and has tried several different things. It is hard to tell what works and what doesn't when you are mixing them with chemo therapy. I have had several people call me from my previous posts and am working on setting up an email list. If you would like to be added to it, please let me know. My email account is thebalm@yahoo.com. If anyone would ever like to contact me regarding their cholangiocarcinoma or more details, my number is 281-788-1628.

Sincerely,

Julie

www.cholangiocarcinoma.org
I had whipple surgery 5/25/10 for amuplla of vater cancer. Fortunate I had surgery within 4 weeks of discovery of the mass, CT scan in March showed nothing and another in april showed mass. I am 77 years old and have already returned to work part time, as a design engineer. It is a very difficutl surgery as the doctor warned, but when I look back and then look forward to better days am so thankful for early detection and a wonderful medical staff. Was interested to learn of the web site you stated, as I had never heard of cholangiocarcinoma and did quite a bit of research on my condition. I to am on Xeloda, only my 4th day and taking radiation, both as precaution to catch any microscopic cancer cells that may have remained from surgery. The maligant cells were contained in the center of the mass, margains were benign, with only one lymph node having cancer cells. I am hopeful the 5 or 6 weeks of treatment will
pull me through with no complications and a good clean report. One thing I did find in my research that I find insteresting is the risk of statin associated cancer. A study by american cardiology assoc states "cardiovascular benefits of low achieved levels of LDL may in part be offset by an increased risk of cancer." Since the statins change the way your liver handles cholesterol which is turned to bile I wonder if most patients with
bile duct cancer also took cholesterol lowering meds as I did. I was on lipitor for 10 years, stopped just short of surgery.. and will not continue with lipitor. the link for this study is htpp://content.online.jacc.org/cgi/content/full/50/5/409. Also when reading the lipitor prescribing info in detail I find concern there as well.


best to you and your family!
my personal email is: topnotchplus@yahoo.com

Regards, Ray Lagueux, North Carolina

kaito17

balboa said:

my father was also recently
my father was also recently diagnosed with bile duct cancer that has spread to his liver i am searching for what to do

My dad was diagnosed with
My dad was diagnosed with Bile Duct cancer last week at the age of 53. Right now we are just so discouraged and overwhelmed. We are looking into some different treatment options. Can anyone give us information of treatments that seem to be working for themselves or a family member? Right now we just need a little hope. Thanks.

Kait

ites

Bile duct cancer
Here's my story, it may help some folk here. I'm male and was diagnosed with bile duct cancer just before my 48th birthday. I'd been turning yellow, and they first placed a stent, took a biopsy, and did a lot of scans to verify the cancer hadn't spread. December last year, they did a Whipple on me, 9 hours of surgery and a month of pain before I could eat anything at all. I have to say, modern medicine is pretty awesome.

I'd lost a lot of weight (2 months without eating) and for the first two months after my operation, my insides were really confused. There's a lot of advice on what to eat, what to avoid, I just searched out whatever my body wanted. Yoghurt, kefir, buttermilk, grapefruit juice, water, then slowly solid food, eggs, cereals, and eventually meat and starches.

I had six months of gemcitabine until end July, which was quite fine. It made me tired for a day, and a little nauseous, but that's all. I've a portacath, so it was easy to hook me up each weak.

My lifestyle went back to normal pretty fast. I was able to work from February, and started travelling again, by train, then car, now plane. I spent the whole of August working abroad. I had a CAT scan after my chemo ended, in July, and they pronounced me clean, surgery had left no damage, and no sign of new tumors. I assume I'll go back for a scan every six months.

Now... bile duct cancer is really rare here (Belgium) and the doctors honestly could not say what I should expect. The surgery was aggressive (all lymph nodes removed) but after that it was pretty vague. They prescribed gemcitabine but kind of experimentally. There's never been cancer in my family, and my best guess is I got this from imported raw fish (liver fluke, typically hits males my age in some Asian countries).

Life now is a mix of good and bad. The bad is that I've got young children (8, 4, 1 year) and my wife doesn't work, so when I die she'll be really hard hit. Luckily my business recovered, and I'm earning good money again.

The good news is that living with the sword hanging over your head is really quite liberating. I was never much afraid of anything, but now I'm much more solid, calm, determined than ever. It's quite an asset in my work. Our marriage got much better. My wife is still somewhat in denial (and will always be, IMO) but she watches her husband playing happily with her children, and she's content.

Lessons: trust modern medicine, it's really gotten very good. Love your family and take every day as a gift. We all want to feel that way in theory, but having had cancer (or having cancer) makes it possible to practice it. Make every phone call sincere and real. Every goodbye could be the last one. Tell people you love them, and mean it. Do things you were afraid to before. Explore life, and other people.

To some extent, having had cancer gave me a second shot at living and that's a gift. We all die, usually without time to prepare or time to appreciate life. Facing death gives us a way to really appreciate life.

nflores2525

RayLogu said:

www.cholangiocarcinoma.org
I had whipple surgery 5/25/10 for amuplla of vater cancer. Fortunate I had surgery within 4 weeks of discovery of the mass, CT scan in March showed nothing and another in april showed mass. I am 77 years old and have already returned to work part time, as a design engineer. It is a very difficutl surgery as the doctor warned, but when I look back and then look forward to better days am so thankful for early detection and a wonderful medical staff. Was interested to learn of the web site you stated, as I had never heard of cholangiocarcinoma and did quite a bit of research on my condition. I to am on Xeloda, only my 4th day and taking radiation, both as precaution to catch any microscopic cancer cells that may have remained from surgery. The maligant cells were contained in the center of the mass, margains were benign, with only one lymph node having cancer cells. I am hopeful the 5 or 6 weeks of treatment will
pull me through with no complications and a good clean report. One thing I did find in my research that I find insteresting is the risk of statin associated cancer. A study by american cardiology assoc states "cardiovascular benefits of low achieved levels of LDL may in part be offset by an increased risk of cancer." Since the statins change the way your liver handles cholesterol which is turned to bile I wonder if most patients with
bile duct cancer also took cholesterol lowering meds as I did. I was on lipitor for 10 years, stopped just short of surgery.. and will not continue with lipitor. the link for this study is htpp://content.online.jacc.org/cgi/content/full/50/5/409. Also when reading the lipitor prescribing info in detail I find concern there as well.


best to you and your family!
my personal email is: topnotchplus@yahoo.com

Regards, Ray Lagueux, North Carolina

bile duct cnacer and cholesterol drugs
My mom was diagnosed with bile duct cancer Dec.10'She was on cholesterol lowering meds for a long time probably 4yrs. You made me rethink the causes of my mother's cancer for the longest I had a hunch that those medications might have played a role in her illness. Let me know if there is anything else you find on this subject as I am currently taking Liptor and am a cancer survivor.

Choloyubby

ites said:

Bile duct cancer
Here's my story, it may help some folk here. I'm male and was diagnosed with bile duct cancer just before my 48th birthday. I'd been turning yellow, and they first placed a stent, took a biopsy, and did a lot of scans to verify the cancer hadn't spread. December last year, they did a Whipple on me, 9 hours of surgery and a month of pain before I could eat anything at all. I have to say, modern medicine is pretty awesome.

I'd lost a lot of weight (2 months without eating) and for the first two months after my operation, my insides were really confused. There's a lot of advice on what to eat, what to avoid, I just searched out whatever my body wanted. Yoghurt, kefir, buttermilk, grapefruit juice, water, then slowly solid food, eggs, cereals, and eventually meat and starches.

I had six months of gemcitabine until end July, which was quite fine. It made me tired for a day, and a little nauseous, but that's all. I've a portacath, so it was easy to hook me up each weak.

My lifestyle went back to normal pretty fast. I was able to work from February, and started travelling again, by train, then car, now plane. I spent the whole of August working abroad. I had a CAT scan after my chemo ended, in July, and they pronounced me clean, surgery had left no damage, and no sign of new tumors. I assume I'll go back for a scan every six months.

Now... bile duct cancer is really rare here (Belgium) and the doctors honestly could not say what I should expect. The surgery was aggressive (all lymph nodes removed) but after that it was pretty vague. They prescribed gemcitabine but kind of experimentally. There's never been cancer in my family, and my best guess is I got this from imported raw fish (liver fluke, typically hits males my age in some Asian countries).

Life now is a mix of good and bad. The bad is that I've got young children (8, 4, 1 year) and my wife doesn't work, so when I die she'll be really hard hit. Luckily my business recovered, and I'm earning good money again.

The good news is that living with the sword hanging over your head is really quite liberating. I was never much afraid of anything, but now I'm much more solid, calm, determined than ever. It's quite an asset in my work. Our marriage got much better. My wife is still somewhat in denial (and will always be, IMO) but she watches her husband playing happily with her children, and she's content.

Lessons: trust modern medicine, it's really gotten very good. Love your family and take every day as a gift. We all want to feel that way in theory, but having had cancer (or having cancer) makes it possible to practice it. Make every phone call sincere and real. Every goodbye could be the last one. Tell people you love them, and mean it. Do things you were afraid to before. Explore life, and other people.

To some extent, having had cancer gave me a second shot at living and that's a gift. We all die, usually without time to prepare or time to appreciate life. Facing death gives us a way to really appreciate life.

Bile cancer
My wife has stage 3 billiary cancer. She was diagnosed September of last year. Things did go so good she has had to have over 20 tubal adjustment for her billiary drain. She had to go through weekly blood transfusions. We have now had to call hospice in. I do t want to this to be a downer post just don't feel alone caregiver and cancer victims. By the way my wife is only 38

Choloyubby

kaito17 said:

My dad was diagnosed with
My dad was diagnosed with Bile Duct cancer last week at the age of 53. Right now we are just so discouraged and overwhelmed. We are looking into some different treatment options. Can anyone give us information of treatments that seem to be working for themselves or a family member? Right now we just need a little hope. Thanks.

Kait

Hey
Lots of love and patience. Make sure that you keep them completely hydrate that's a big one and also make sure they eat you don't want them to lose weight. My wife has stage 3 billiary cancer. I take care of her.

DiannesDaughter

tsb said:

My mother was diagnosed 4 years ago with bile duct cancer, also as in your case, surgery is not an option. She went through radiation, the maximum amount that she can have, and she has been on chemo thru an IV, oral chemo (Xeloda)for 2 years, and now gemcitabine given to her by a port. She was only give 3-6 months to live four years ago, and she is still fighting. Hope this helps. Will help anyway we can, if you have any questions.
Take care.
Tammy

PLEASE CONTACT ME ASAP
Tammy,

If you login, please email me. I would love to talk with you about you and your families journey. My mom was recently diagnosed with cholangiocarcinoma. She is 56. Was diagnosed about 6 months ago. Has been through hell and back ever since. Not getting good treatment here in Lincoln, Nebraska. Already been to Omaha for a month with nothing positive to gain from UNMC except for a nasty blood virus that nearly killed her a month later (VRE) <- came from PICC line... has anyone else had this????

We are hopefully going to zion, illinois within the next few weeks to the cancer treatment center of america. Hopefully they can get something figured out. Her tumor so far they say is unresectable.... who knows no one here is well educated on this.

If anyone can help, I am looking for helpful information, a survivor that would be willing to talk to my mom. She's severely depressed, a very quiet person keeps everything in. I don't want her to feel alone. Also looking for anyone who has gone to Cancer Center of America in zion, Illinois.

How do you decide between the big name hospitals? MD Anderson, Mayo Clinic, Cancer Centers, John Hopkins, etc.?


jparker21988@gmail.com


ANYONE ... PLEASE...

- Jess

DiannesDaughter

JMKK said:

Hi Laura
My mom has been taking Gemcitabine and Cisplatin (chemos) since 7/6/09 every other week at MD Anderson Cancer Center in Houston. She had a stent placed in her bile duct in May and once July came she was very sick and we thought it was because she started chemo. However, we were first told that the plastic stent would be good for 4 - 6 months, but then another GI doctor told her that her stent should not have been in over 2 months and sometimes should be replaced after 2 weeks and that is why she was so sick (nauseous, fevers, chills, vomitting, etc). She got her stent replaced 3 weeks ago and she has been feeling great since. The chemo is not even affecting her (so now she is worried it isn't working). She got a CT scan on Friday and will find out all of the results on Thursday to see if they think the cancer is shrinking, staying the same or not responding to the chemo based on her CT scan, her ERCP results and her tumor marker. The Oncologist told me they just recently got a study back on giving Gemcitabine and Cisplatin to cholangio patients - which was king of surprising b/c they have been using these chemos for years, but the statistics are as follows: 30% of patients show tumor shrinkage, 60% show that it has caused the cancer not to spread, just remain the same and the last 10% it does not help. However, the shrinkage and cancer remaining the same only lasts for 6 months (on average). Her cancer has been said to be "locally advanced" with stages 3 & 4.

What abour your father? Is he getting any treatment?

I am not too excited about MD Anderson so far, in all honesty. I work in healthcare and I am not impressed. I have been researching alternative treatments, like IPT therapy, pure oxygen injections, natural supplements, etc etc. And ALL of them that I ask the Oncologist, he has no idea that they exist. It is quite concerning to me for a hospital that is supposed to be the leader in cancer care and research to be giving the same chemo for years and years that does not have a great outcome and no knowledge on treatments that seem to be working.

Can you tell me what your father is doing and how he is feeling?

My mom is not working, but she does everything besides that - swims, cleans house, cooks, etc. It is nice to see her feeling so well and looking so well because all that I read is terrible about this disease. She has been so healthy her entire life and is very young (53). I feel like if anyone has a shot at kicking this cancer to the curb it could be her. We just need to know the right thing to do.

I hope this helps.

Call me anytime - I will leave my number on this post so that anyone can contact me. I would love to know more about this cancer in hopes that we can help our loved ones through this. 281-788-1628.

Sincerely,
Julie

Julie,
please email me
Julie,

please email me jparker21988@gmail.com

i have a lot of questions about MD Anderson

Amnewt

tsb said:

My mother was diagnosed 4 years ago with bile duct cancer, also as in your case, surgery is not an option. She went through radiation, the maximum amount that she can have, and she has been on chemo thru an IV, oral chemo (Xeloda)for 2 years, and now gemcitabine given to her by a port. She was only give 3-6 months to live four years ago, and she is still fighting. Hope this helps. Will help anyway we can, if you have any questions.
Take care.
Tammy

Bile duct cancer
My 28 yr old brother was just diagnosed with stage 4 bile duct cancer. We don't have alot of info on this disease yet so if anyone could shed some light on this it would be much appreciated. I would like to know which treatments worked and what would be the best route to take. My email address is amnewton79@gmail.com. Thanks in advance to anyone that may be able to help my family get through this rough time.

Amnewt

tsb said:

My mother was diagnosed 4 years ago with bile duct cancer, also as in your case, surgery is not an option. She went through radiation, the maximum amount that she can have, and she has been on chemo thru an IV, oral chemo (Xeloda)for 2 years, and now gemcitabine given to her by a port. She was only give 3-6 months to live four years ago, and she is still fighting. Hope this helps. Will help anyway we can, if you have any questions.
Take care.
Tammy

Bile duct cancer
My 28 yr old brother was just diagnosed with stage 4 bile duct cancer. We don't have alot of info on this disease yet so if anyone could shed some light on this it would be much appreciated. I would like to know which treatments worked and what would be the best route to take. My email address is amnewton79@gmail.com. Thanks in advance to anyone that may be able to help my family get through this rough time.

heizizhang

DiannesDaughter said:

PLEASE CONTACT ME ASAP
Tammy,

If you login, please email me. I would love to talk with you about you and your families journey. My mom was recently diagnosed with cholangiocarcinoma. She is 56. Was diagnosed about 6 months ago. Has been through hell and back ever since. Not getting good treatment here in Lincoln, Nebraska. Already been to Omaha for a month with nothing positive to gain from UNMC except for a nasty blood virus that nearly killed her a month later (VRE) <- came from PICC line... has anyone else had this????

We are hopefully going to zion, illinois within the next few weeks to the cancer treatment center of america. Hopefully they can get something figured out. Her tumor so far they say is unresectable.... who knows no one here is well educated on this.

If anyone can help, I am looking for helpful information, a survivor that would be willing to talk to my mom. She's severely depressed, a very quiet person keeps everything in. I don't want her to feel alone. Also looking for anyone who has gone to Cancer Center of America in zion, Illinois.

How do you decide between the big name hospitals? MD Anderson, Mayo Clinic, Cancer Centers, John Hopkins, etc.?


jparker21988@gmail.com


ANYONE ... PLEASE...

- Jess</p>

My mom...
My mom (61 yrs)was diagnosed with bile duct cancer two month ago in China right after my first child was born. Life is good but not easy. Now she is taking some supplementary I sent back,such B17,curcumin. She went througth a radiotherpy(gammakinfe). Just a few days ago she felt uncomfortable after drunk a cup of milk. I am very worried about her. If possible, I want to save her with my life.

heizizhang@hotmail.com

dumbblondy

ites said:

Bile duct cancer
Here's my story, it may help some folk here. I'm male and was diagnosed with bile duct cancer just before my 48th birthday. I'd been turning yellow, and they first placed a stent, took a biopsy, and did a lot of scans to verify the cancer hadn't spread. December last year, they did a Whipple on me, 9 hours of surgery and a month of pain before I could eat anything at all. I have to say, modern medicine is pretty awesome.

I'd lost a lot of weight (2 months without eating) and for the first two months after my operation, my insides were really confused. There's a lot of advice on what to eat, what to avoid, I just searched out whatever my body wanted. Yoghurt, kefir, buttermilk, grapefruit juice, water, then slowly solid food, eggs, cereals, and eventually meat and starches.

I had six months of gemcitabine until end July, which was quite fine. It made me tired for a day, and a little nauseous, but that's all. I've a portacath, so it was easy to hook me up each weak.

My lifestyle went back to normal pretty fast. I was able to work from February, and started travelling again, by train, then car, now plane. I spent the whole of August working abroad. I had a CAT scan after my chemo ended, in July, and they pronounced me clean, surgery had left no damage, and no sign of new tumors. I assume I'll go back for a scan every six months.

Now... bile duct cancer is really rare here (Belgium) and the doctors honestly could not say what I should expect. The surgery was aggressive (all lymph nodes removed) but after that it was pretty vague. They prescribed gemcitabine but kind of experimentally. There's never been cancer in my family, and my best guess is I got this from imported raw fish (liver fluke, typically hits males my age in some Asian countries).

Life now is a mix of good and bad. The bad is that I've got young children (8, 4, 1 year) and my wife doesn't work, so when I die she'll be really hard hit. Luckily my business recovered, and I'm earning good money again.

The good news is that living with the sword hanging over your head is really quite liberating. I was never much afraid of anything, but now I'm much more solid, calm, determined than ever. It's quite an asset in my work. Our marriage got much better. My wife is still somewhat in denial (and will always be, IMO) but she watches her husband playing happily with her children, and she's content.

Lessons: trust modern medicine, it's really gotten very good. Love your family and take every day as a gift. We all want to feel that way in theory, but having had cancer (or having cancer) makes it possible to practice it. Make every phone call sincere and real. Every goodbye could be the last one. Tell people you love them, and mean it. Do things you were afraid to before. Explore life, and other people.

To some extent, having had cancer gave me a second shot at living and that's a gift. We all die, usually without time to prepare or time to appreciate life. Facing death gives us a way to really appreciate life.

Hope

I was just DX today!  I and my husband have never heard of this common bile duct cancer.  I turned yellow and they did an ERCP and placed a stent in.  I felt cured then today the doctor called and told me I had cancer that is what caused the occlusion.  I don't know if it is operable, the not knowing until sometime this week the University of Arizona Medical Cancer Center Team get a plan of action together...How do you get through this...

dumbblondy

Hwomble

dumbblondy said:

Hope

I was just DX today!  I and my husband have never heard of this common bile duct cancer.  I turned yellow and they did an ERCP and placed a stent in.  I felt cured then today the doctor called and told me I had cancer that is what caused the occlusion.  I don't know if it is operable, the not knowing until sometime this week the University of Arizona Medical Cancer Center Team get a plan of action together...How do you get through this...

dumbblondy

How are you?

Hi, my husband was diagnosed in November. We had never heard of it either, he is 44 with a tumor the size of an apple. What have they told you so far?

jquirk4444

nflores2525 said:

bile duct cnacer and cholesterol drugs
My mom was diagnosed with bile duct cancer Dec.10'She was on cholesterol lowering meds for a long time probably 4yrs. You made me rethink the causes of my mother's cancer for the longest I had a hunch that those medications might have played a role in her illness. Let me know if there is anything else you find on this subject as I am currently taking Liptor and am a cancer survivor.

Lipitor

Don't know if there is any connection but my wife was on Lipitor for high cholesterol for about 10 years and was diagnosed with bile duct cancer in March of 2015. She went to Dartmouth-Hitchcock  (Hanover NH) in May of 2015 for resection. Upon exploration they found that resection was not possible, which I have since learned is almost always the case. We went for a 2nd opinion with a surgeographic at Dana-Farber (Boston). He concurred that resection was not possible. We have heard that resection is the only proven cure. She started chemotherapy at Dana-Farber (Londonderry NH) in June of 2015. The chemo is a gemcitabine/cisplatin combination. She is still on this treatment. There has been no considerable improvement in her condition. She has developed neuropathy, supposedly due to the cisplatin, and is losing feeling in her extremities  (particularly her feet) which makes her very unstable. I do not see where this regimen is going to provide any long term benefits. Has anyone had a similar experience with this drug Combo? Also, are there alternative treatments which anyone has heard of?