peter

Cholangio is typically very slow growing. It’s quite possible that waiting another week or two before starting chemo will not have any negative effect on the outcome.
It’s also true as others have noted that usually the first course of chemo does not produce the worst side effects. Chemo is cumulative.

I understand how difficult this is for all of you. Ultimately this is a personal decision as is so often the case with what we all face fighting this disease.

-Peter

Kim,
A good friend of mine has a saying: “Don’t bleed until you’re shot.” All of us here know how hard it is to put that into practice and i understand and sympathize with your fears.
When you do know what you are up against please know that there are options and therapies that can help. It’s a dreadful disease but each day we find ways to sustain ourselves is a day closer to finding new help and eventually cures.
Keep us posted. There is lots of information and experience here if the time should come that you need them.
My best wishes and prayers.
-Peter

Most of the time surgery is the best hope for longevity with this disease. If it is possible please give it careful consideration. I’d also consider consulting with a surgeon with as much experience as possible with CC.

Once they remove the tumor and usually common bile duct, perhaps part of liver, and maybe even some of portal vein etc they are able to sew a small bile duct fron the liver directly to the intestine to maintain a flow of bile.

Best wishes for a successful resection with clear margins!
-Peter

Soninlaw,
I may have missed something but it doesn’t sound like you have gotten a second opinion from a surgeon who has experience, preferably lots of experience, with CC surgery.
If this is accurate please considered having your mother in law (is she the patient?) evaluated by a surgeon with CC experience.
I have written a number of posts on this subject. If you search on ‘second opinion’ you should find more thoughts and suggestions. Note that it isn’t necessary to travel at first to get more feedback. Some surgeons will look at radiologist reports and imaging and let you know if it is worth your making a trip for them to evaluate you further for surgery.
Marion has done a tremendous amount of research on CC in the last couple of years and she sums up the difficulties well.
-Peter

I’m not sure you’ll ever get the clear and conclusive explanation of what the CA19-9 number means that we would all like to have!
In my case most of my doctors carefully say they don’t put much stake in the absolute number, we all respond differently. I have tracked all my labs for over 4 years now and my feeling is that the trend of the CA19-9 (up or down) is indicative of the course my disease is taking. Simply put it was up before surgery, lower after surgery, stable for a while then a slow increase until the beginning of the treatment I am now on during which time is has steadily declined. This also follows my clinical symptoms.
So my laymans deduction……..the trend of CA19-9 is worth watching to judge the progression of CC. Many, but not all, of my Doctors agree with this. The ones who do not endorse it simply remain silent on the subject.
Confused yet?
-Peter

Coleen,

You never responded concerning the CA19-9 marker. If they, you should be getting copies of all labs & tests, are then the trend may be indicative of how the treatment is working.

A scan after a couple of months isn’t unusual but I would consider 6 months a long time if that is what they are using to evaluate treatment. Every patient and treatment is unique. The other point regarding any imaging is that CC doesn’t always show up well. Solid tumors often do but small secondary ones can, sometimes, be more difficult to identify.

(edit 9/12 as I didn’t type what I meant about scan frequency)

Actually there are a few of us who continue to fight this disease still hanging around this website. : )

Most importantly get a second opinion on the surgery! It is the best course for a good outcome with this disease and it requires a surgeon with CC experience in many cases, and there are not a lot of them. Search this site for surgeons and cancer centers with CC experience, just being a good cancer center isn’t always enough when dealing with a cancer this rare and with so little research available.

Search also on my recent posts. I loose track but I recently wrote a response with more details on surgery and the importance of the second opinion. Surgery isn’t always possible but it merits every chance you can find for it.

Have you had a stent placed to relieve the jaundice? One thing in our favor with CC is that it is usually very slow growing. With a stent, often done with a procedure called an ERCP, to relieve initial symptoms you have some time to do some research and consider all your options.

Another key is to have an advocate. Sometimes we can do this for ourselves, often family members or friends step in as evidenced by the many care givers on this site.

I send you prayers, best wishes and courage. Know that you have kindred spirits out here still fighting this disease after a number of years.

-Peter

ps. Did I mention getting a second opinion on surgery…………..

Coleen,

It’s very difficult to find a knowledgeable authority on mixing herbal/mushroom therapies with western medicine drugs. Few oncologists have this experience although a good naturopath may be able to help.

I have been taking a pharmaceutical grade mushroom extract that I import from Japan with Xeloda for almost 8 months with good success but this should not be interpreted as an endorsement for what your Mom will do.

-Peter