1 (edited by marions Mon, 08 Jan 2007 14:48:57)

Topic: Bile Duct Surgery

This is part of an interview with an Oncologist at a major clinical institutions.  He could not recount in detail the number of patients with CC he had treated however, he believed it to be around 250 to 300 people.

My question to him:

Even though bilary surgery is risky to say the least but more so, a guaranteed outcome of success is debateable, in your experience, where do you stand on this issue:

His answer:

Clearly, why would somebody with bile duct cancer die, it is usually because of the inability to maintain bile flow, and if you can take the tumor out and reconstititue the bilary tree with a surgical hookup.....your are way ahead of the game......

The mystery is, no one can predict who would do well and who wouldn't do well from the onset.  They just don't know.


Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Bile Duct Surgery

Marions - My wife, who has both a Klatzins tumor and a metastasis in her liver,  has been recommended for surgery after 10 months of chemo successfully reduced the metastasis to almost one-third its original size.  I would like very much to e-mail directly to you to ask some specific information and advice about surgeons, but have not put her profile and an e-mail address on site because we presently have to use our daughter's computer and she heavily uses it for work.  Is there a way Stacie could act as a go-between to privately give you the EMail address that I provided to log in so that we could have a few exchanges?  In this way my daughter wouldn' t have to worry about unexpected EMails.  Hopefully, we will have a computer soon.  Thank you so much, and our prayers and best wishes for your husband and you.

Re: Bile Duct Surgery

Please email Dr. Byers Shaw at the University of Nebraska Medical Center in Omaha, NE.  (bshaw@unmc.edu)  You may tell him in your email that I suggested you contact him.  UNMC has one of the two best liver programs in the U.S.  Please let me know what he says after you email him.  Thanks - Joni

4 (edited by marions Thu, 11 Jan 2007 21:21:20)

Re: Bile Duct Surgery

Hi DavidH,

I am looking forward to your e-mail. 

We made our choice based on criteria which may or may not be similar to yours however, I will gladly pass on to you what we have learned during this process.

Looking forward to hearing from you.

Our best to you and your wife
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Bile Duct Surgery

Washington University in St. Louis Barnes Jewish Hospital (Dr. William Chapman) is doing a follow-up data collection study of a procedure developed at the Mayo Clinic where they do intensive chemo (Gemzar) and external beam radition coupled with a second phase of chemo (5-FU) followed by liver transplant. The Mayo Clinic paper is readily available and I believe other centers (perhaps University of Nebraska) are also following up. They require no tumor spread at Barnes and they do a careful screening pre and post chemo radiation to assure that fact. They say that the statistics from Mayo look impressive. The problem with CC is that the cancer comes back when they resect and when they remove and transplant the liver, so Chemo is usually what is done but it is not considered a cure.

Re: Bile Duct Surgery

Cancer Compass sent me a weekly update:  FDA has approved intravienous vitamin c treatment trials limited to people who have exhuasted other means of treatments.  Stacie, I don't know if this is something you have heard of or not.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Bile Duct Surgery

Thanks Jeff, I do get the cancer compass update as well.  I'm glad to see them trying some natural things in addition to everything else.  It will be interesting to watch and see what happens.

Stacie

Re: Bile Duct Surgery

My father was recently diagnosed with intrahepatic cholangiocarcinoma. Unfortunately, his bilirubin went from 2.6 to 4.7 while waiting for Mayo Clinic to gather test results, etc. 4 weeks total... I am posting this message to see if anyone feels the way I do. I feel that there are a number of facilities out there that may be interested in the business aspect, rather than trying to take a chance on people. Tried to get him into MD Anderson, they wouldn't even look at him due to the fact his bilirubin was higher than 1.6(that is almost normal). So maybe the number 1, or number 2 hospitals dealing with CC are really weading through the tougher cases to keep their success rates high.
Just a thougt,
Lana

Re: Bile Duct Surgery

Hi Lana,

Found a similar thing with my wife after a visit to M D Anderson. Liver functions too high to get into clinical tests. What a surprise, someone with Liver disease has high liver functions. M D did recommend a triple cocktail for her,  5fu, irinotecan, leucovorin which we are going to try here at home. This cocktail has worked on Colon Cancer so this will be a new attempt on CC. She previously has tried Gemzar + Zeloda and they did not work. I wonder if any one else has tried these Chemos ? If so how rough were they and did you get any results?

Handyman

10 (edited by JeffG Fri, 11 Jul 2008 13:18:03)

Re: Bile Duct Surgery

Handyman....... I have just finished cycle two of this triple cocktail and start cycle 3 Monday.  Nausea, tiredness,low energy, and appetite are primary side effects of this regimen and I can also see sign of hair falling out again.  I have to take figrastim injection at home for 5-7 days starting day 5.  I wear a Cad pump of chemo after initial fill of chemo from day one until day 3. (46) hours.  Some increased pain, not much, in area of known tumors.  first couple of days runny nose and some eye watering and then eye dryness. Then some bone and muscle pain due to the figrastim injections.  Just as you get to feel half way good next cycle begins. Labs weekly.  Nausea med, I took day two twice daily to prevent vomiting.  Appetite I just forced myself to eat. lost and gained back about 10 pounds on each cycle. Don't hold back on the nausea med and be careful how much dairy products you eat or you'll be on the toilet dehydrating.  I don't think I left anything out.  Wish your wife the best!  Meditate, hot baths, listen to waves, rest but not to much. I really try to just take one nap during the day so I can sleep at night, but if I get so tired and start bumping in to things I take another nap.

God Bless,
Jeff G.
P.S. some flushing and minor breathing shortness comes and goes,just got to relax and not let anxiety build and it will go right away.

Take it to the Limit,One More Time! (Eagles)

Re: Bile Duct Surgery

Hi Jeff:  I have been writing for a couple weeks now on Vitamin C Intravenous.
My daughter's fiance has Lymphoma and has been doing the C for 8 months now along with his chemo. He NEVER got sick from the chemo. He is doing quite well and is in remissions. While not a cure, he does feel it has helped immensely. He has also met others with all forms of cancer and in fact one with CC and they all feel the C has helped. Usually the Naturalpathic doc works right along with your ONC and the only downside is Insurance Companies have not approved it yet. There is a clinic in Phoenix (Scottsdale) called Envita. Their web site is interesting.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Bile Duct Surgery

Hi Lainy... Great to hear about the Vit C helping and more so of your daughter's fiance in remission.  Vit C seems to keep coming back around to this site.  I know vit c is very effective with detoxing the body and helping the immune system to fight.  I drink the 130% no sugar added grape juice full of vit c. Great to hear all is stable.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Bile Duct Surgery

Hi Jeff G (Moderator),

Thanks for the advice, it helps to know what to expect and what to try to alleviate associated symptoms. I wish you the best for your next checkup.

handyman

Re: Bile Duct Surgery

hi jeff:I drink the grape juice full of vit C too.I try avoid dairy all together.Ilove cereal so I drink soy milk. I was wondering if you know of any one else that is strickly on Gemzar with nothing else.That is the treament I get.I do a round,which is once a week for 2 weeks, then get a 1to 3 week break do another round(2 more weeks) then usually scan and then start all over.No ill effects from the chemo.I eat high fiber low fat and eat small and often.I have had a 5 pound weight loss and it goes up and down..I guess I am just asking is there any one else that has no other type of treatment..I am blessed I know and do not question, but I would love to hear from someone has the same treatment.I am not even sure what type cc i have or if there are different types..I am sooooo not medicallly minded.I don't ask a lot questions as long as things are going well and asI have always told everybody...God is the one in control and keeping me here...I was diagnosed 11-16-07 and was given 4 months...well here I am almost a year later and doing great..PRaise God is all i say and praise Him for giving doctors to us to help us.
lissa

provervbs 3: 5 & 6

Re: Bile Duct Surgery

Lissa

I was just reading an article about the use of Gemzar alone in resected pancreatic cancer with a 5 year follow up. It showed that 21% of patients given 6 months of Gemzar were still alive as compared to 9% who had observation only.  This was a phase III International trial out of Germany and involved 368 patients.  Gemzar increased disease free as well as overall survival.

I know it's not cholangiocarcinoma but there are similarities between the two types of cancer.  Just thought it was interesting and wanted to pass it along.

So glad to hear how well you're doing!

Jean

Re: Bile Duct Surgery

Jean
Thank you so much.I don't question (i guess) my treatment because it is doing so well and I thank God.I have found by being on this site , that I haven't met anyone yet who is doing the same treatment as I. Thanks for the info. I am very pleased..and am very blessed.

provervbs 3: 5 & 6

Re: Bile Duct Surgery

Lisasa---  No ,other than some clinical trials, I can't say I have heard of gemcitibine as a treatment by it's self.   That's not saying it doesn't happen.  Logically I can see no reason why not, if it is doing you some good.  I would ask your Oncologist.  I know some Onocolgist like to approach treatments conservatively or start out slow then add too or change regimen if found not effective.  Again just ask your Oncologist ansd see what he has to say. I'm sure he /she can and will be more than happy to explain.  Do you have any other medical condition that could be bothersome with to much chemo?

Give the onco a call or ask the nurses if they can double check the treatment orders just to make sure there isn't anything else you are suppose to be getting.

Bless Ya!
Jeff

Take it to the Limit,One More Time! (Eagles)