I’m at the beginning of this frightening journey.

Snezzie,
I welcome you to this site and am glad that you are here seeking information. We are also here for support and guidance should you need that. What many are saying, and I agree, that different chemos work differently on each person. Even though we really have the “same” cancer, cholangiocarcinoma, the chemos for some reason act differently on each of us.

I also had 40% of my liver removed (left lobe) Apr 1, 2009, with 1 node involved and clear margins around node and resection. The Drs. were certain that they had everthing. I came through resection wonderrfully. However, just to be on the “safe side” as they put it, I was given Gem/Cis. I had very little side-effects, but with the Gem / Cis (I was told) you really have to watch the white blood count a lot. Mine did drop low for a few weeks, then came back up and I resumed treatment. There is also a med. that they can give you for the low count that will force your bone marrow to produce more white blood cells. If they are aware of this issue, they give it to you following the chemo. infusion.

I just finished with a treatment of Oxalyplatin & Xeloda pills (see, yet another combination). I don’t know yet if that has been successful, but we’re hoping for a shrinkage of a recurring and new tumor and possible new surgery. I actually had more side-effects on the Oxalyplatin/Xeloda than I did on Gem/Cis, but have yet to see which one was more effective.

Each doctor will draw their own opinion based mostly on what their past patients have experienced. If they only have patients that are on one combination that works, then that will be their opinion.

And you need to ask what their definition of chemo “doesn’t work” is. Do they believe that chemo. would NOT shrink existing tumors thereby saying it “doesn’t work” for that reason? Or do they think that whether one had chemo or not, the tumors would eventually return (so why bother with chemo)? Or do they believe that just giving chemo for a preventative (for just in case) would not give the patient more time until a tumor returned? These are all different “it doesn’t work” instances that you could clarify with your doctors first. It might make a difference on your choices.

It is great that you have sought many opinions, but understand that there isn’t necessarily the “right” answer. You have to try one to find out if it will work for you. One may, while another may not. We just more-or-less guess, but it is your choice to do or not to do. You need to be comfortable in whatever decision you make. One way to gain more confidence in your decision is through knowledge. Search on this site, and ask your doctors tons of questions. Ask until you know what they are talking about. Don’t accept something if you don’t know what they mean. You are entitled to understand why they say and believe certain things.

I give you so much credit for getting out there and searching for the knowledge now. I didn’t find this site or even begin to learn about this disease until this March (almost 1 yr after my surgery). Keep on asking questions, and the best of luck to you. Come back here often and keep us informed too. We all learn from each other.

My best to you,

Linda Z. (sorry I get so lengthy, but hope it helps in some way)

Snezzie:

My husband Tom had a successful liver resection in June 2008. All his doctors at that time said no chemo was necessary because he had 1 in clear margins. However in Nov 09 he started turning yellow, he had a reoccurance with a new 2.5cm tumor blocking the remaining right biliary tree. It is inoperable. All his new doctors now say that if he’d had chemo after the resection he most likely would not be in the position he is in today. He has now had 28 radiation treatements followed by chemo (Xeloda) and the tumor is dead and he is considered to be in remission.

The good thing about Xeloda is that so far he has not lost any hair. (He said he’s grown that hair for 63 years and he’s kind of attached to it!) So he’s happy about that. The Xeloda does not make him sick, but after his 2 week on, 1 week off regeime, he’s pretty tired after the two weeks on.

And the Xeloda that he is on is pill form, so he does not have to travel to get his chemo and that works for us.

If I had it to do over again, I would have insisted on some form of chemo at the get go….

Go with God and KEEP KICKIN’ THAT cancer.

Margaret (My husband and cholangiocarcinoma)

Hello Snezzy….As a fellow Bay Area member I would also liike to welcome you to our site. Your consultation with 4 different phsycians is admirable. You are doing your homework. I agree with what has been replied and would like to also add that patients vary with their responses to treatments. Some do better with one combination and others do better with another. In many instances the physician will change the combination according to the patient’s response. Some people do not receive adjuvant therapies and feel good about their decision whereas some have regrets of not having done so. Either way, there are no guarantees. Have you consulted with physicians “very” familiar with this cancer? That would always be the first question asked. If I may ask, where have you been treated?

Best wishes,
Marion

Gemzar/Oxaliplatin shows fantastic results and it is less toxic than Gem/Cis. This is what Mayo Clinic recommends as a first line treatment. The Oxaliplatin is still a platin based drug like Cisplatin and is still effective in combo with Gemzar, but less side effects.

I was on that combo for about 6 months until I started getting a rash/reaction to the Oxaliplatin.

Rick

I would do chemo because I personally would want to know that I did everything possible to prevent a reoccurance.

For me, I had the easiest time on genzar/cis. It was such an easy combo for me to take.

Just my opinions.

Kris