My brother recently had surgery, which went pretty well, except that he has developed a complication involving a leaking bile duct.  When they removed the left side of his liver there was a apparently a small bile duct that was left "dangling."  This bile duct is leaking bile and will not seem to stop.  They have installed several stents and removed the sphincter to try and coax the bild to flow towards the intestine.  They have been trying this for about 2 weeks without any luck.

Does anyone know if other solutions or of any doctors hat have resolved this issue before?

Thanks,

Brian

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(4 replies, posted in Events & Fundraising)

Angela,

Did you ever get any info on this? I am interested in doing a golf tournament.  I think that should be pretty easy to set up, but we're not sure what to do with the money.  We want to make sure that it goes directly to cholangio research.

Thanks,

Brian

It's been a while since I checked in, but my brother recently completed his fifth round of Gemzar + Cisplatin.  The tumor was down to about 60% of its original area, when he found a doctor at UPMC in Pittsburgh that would operate.  His surgery was last Friday.

It took almost 9 hours, but he came through with flying colors.  The pathology report came back today and reported negative clearances (i.e. the they think they got the whole tumor).

He still has weeks of recovery and probably some more chemo, but we are feeling happy for now.  I was really happy to hear the stories of long term survivors.  I hope and pray that my brother will get to join those ranks.

Thanks for to everyone for their support over the last 6 months.

Brian

Sorry to hear about your fiancee.  My brother is 53 was diagnosed last Nov.

From what I understand, you don't want it in your lymph system.  M brother';s lymph nodes were also swollen, but a biopsy did not reveal cancer cells.  He has done over four rounds of Gemzcar + cisplatin.  His tumor area has been reduced by about 60%.  The nodes are no longer swollen.

He was initally diagnosed as inoperable, but we have found a couple of surgeons that are willing to operate now.  We are meeting with Dr. Kato at Columbia-Presbyterian in NY.  He does a surgery where he actually removes the affected organs from the body, cleans of the cancer and puts them back. See article below:

http://childrensnyp.org/mschony/kato-tr … alist.html

We have also talked to Sloan-Kettering in NY, MD Anderson in Houston and Mayo in Rochester.

We are also doing major diet changes (organic only, cruciferous vegetables, less meat, no refined sugar or flour, whole grains only).  We are also using citrus pectin, turmeric, ultra mar and mushroom extracts of off-chemo weeks. "anti-cancer: a new way of life" is a great book.

Hope this helps

I did  alot of research on alternative treatments.  My brother's doctor is very traditional and told us not to do anything (even diet changes).

My brother decided to do the diet changes anyway.  Lots of cruciferous vegetables (broccoli, cauliflower and kale)  and fresh shitake and maitake mushrooms.

He also does some supplements, but only takes those on his off-weeks from chemo,  He has been taking ultra-mar and citrus pectin and milk thistle and turmeric.

He has had a 50% reduction in tumor area and minimal side effects, so we're pretty happy with the first three months since his diagnosis.

He is also off all refined sugars, white rice and white bread.

My brother is also on Gemzcar + Cisplatin.  His tumor area is down 50% from his first scan.  He is on the third round with a new scan next month.

Keep it up !!!

Hi All,

We came up with the list of supplements for my brother from two different nurtritionists and lots of on-line research.  The Sloan-kettering site seems to give a very scientific and relatively unbiased view of hundreds of alternative remedies and supplements.  I did forget that he is also taking milk thistle.

I set up a free yahoo group which contains the files that I have and some helpful links.  The address for that site is: http://health.groups.yahoo.com/group/Bile_Duct_Cancer/

Thanks for all the helpful info.

Brian

Kristin,

My brother is relatively new to cc.  I would love to get the same news about him next year.

Can you tell me what treatment you are using and where you are being treated.

Thanks,

Brian

After my brother was diagnosed, we did some research on foods and supplements with anti-cancer properties.  The Sloan-Kettering website has a great on-line glossary.

His doctors were OK with most of the diet changes (although they were skeptical of the benefit).  They suggested that he NOT take ANY supplements during chemo.  As a compromise, my brother has only been taking his supplements during his off-weeks from chemo.

He is taking Ave Ultra, Essaic tea, mushroom extracts, citrus pectin and turmeric (circumin) and quercetin.   So far he has had very few side effects from his chemo and got a 25% reduction in the area of the tumor, just from the first round.

I have seen some doctors on-line that say that it is actaully better to take supplements during chemo when they are most effective and may also reduce side effects.

Does anyone have any experience with this issue?

My brother just finished his first round of chemo with Gemzar+Cisplatin.  He received a 10% reduction in one direction and 16% reduction in the other direction, for a total 25% area reduction.  Not sure why they didn't measure the third dimension, but it seems like the volume reduction might be even higher.

His surrounding lymph nodes also went back to normal.

We're not sure how long this we'll keep up, but it made a very nice Christmas present.