Bile Duct Cancer

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

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

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!

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

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

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

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

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

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.

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

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.

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?