Introduction

Again, since surgery isn’t on the table for me yet, my only experience is the chemo and chemo /radiation part. I’ve seen a number of chemo combinations talked about around here. One of the most common is a combination of gemcitibine (Gemzar) and cisplatin (or some other form of -platin). I did the gemcitibine/cisplatin combo for 4 cycles (chemo 2 weeks in a row, then an off week). They also gave me fluids and a steroid and anti-nausea with the chemo. I tolerated it well. After 4 cycles, my doc did a MRI/ct (I’ve still never had a pet) and felt it was working really well. Not that he could see the tumor change by the MRI or CT, but he said all the teeny tiny inflamed bile ducts in my liver had cleared up and the inflammation was gone. That and the blood numbers told him it was working.

So, instead of just finishing another 4 rounds of chemo, we moved to radiation with chemo to try to kill the sucker dead. I go to radiation 5 days a week. My chemo changed then because the gemcitibine doesn’t mix well with radiation. Instead, I’m taking something called 5FU, which I get through an infusion pump that I wear Monday – Friday. I get my cisplatin and fluids on Monday, just as I used to.

Next week is my last dose of chemo. I finish my 30 days of radiation 4/15. Then I wait a month for internal inflammation to go down before I do new scans. They will be the key in deciding next steps.

I’ve felt pretty good through most of this. Minimal nausea – that’s the worst for me. My work has been supportive (thankfully).

I asked my doctor why I’d never had a pet scan. He said that he didn’t think it was necessary. Mine hasn’t spread. He said that if he were looking to see where there was metastasis elsewhere, he’d order a pet, but that it didn’t show anything any better than an MRI or CT on the bile duct.

I agree, you guys are getting confusing info. They need to spell out what it is they recommend.

My doctor mentioned two different chemo protocols when we were starting out, told me what they were and why he recommended the one I did. Doesn’t mean if it stops working, I can’t try another one.

Good luck.

My klatskin is extremely difficult to see on any scans as well. They aren’t always a definitive mass. I guess I used to think of a tumor as something solid, like an egg. Mine is more like an amoeba – with little tentacles. My radiation oncologist showed me my scans in January and I understood why they said it was so hard to see. And, despite an ERCP procedure months ago, they were unable to get a tissue sample.

I’m all for 2nd and 3rd opinions. I had a second opinion before I started with my chemo here, because I was initially told no surgery. That doctor (Dr Chapman at Washington university/Barnes hospital) came highly recommended. He agreed with what my docs here said and I am within blocks of a major facility that sees a fair amount of this.

As to the last question, if chemo isn’t curative, why consider it? Honestly, that’s one each of us has to answer personally. I hope my chemo, etc. will lead to surgery. It may not. If not, I hope it leads to quality of life for as long as I can have it. And I’m talking years. I have young grandchildren. I have too much to do to go at 56. For me, chemo/radiation has been a slog, but I have been fortunate that it seems to be working and isn’t kicking my butt so much that it’s not worth it. That’s not true for everyone. And that’s why I think each person has to make that call. Chemo can be started and, as some have found, stopped if they can’t handle it. It is really rough on some people.

I have a friend (my age) with stage 4 mesothelioma (probably from breathing fibers her dad brought home off ships when he was in the navy). She’s opting for a naturopathic way to have quality over quantity and I respect her decision. She’s single, no kids, no immediate family.

Other than the arthritis (and, of course, the cholangiocarcinoma), how is your friend’s health. What does he think? It’s all overwhelming at times. I know.

Hi, I’ll add my welcome as well. This is a great source for info and support. I can’t comment on all your friend’s issues, but I have a klatskin tumor too (diagnosed early October 2013). I’m 56. Mine was not operable due to location (wrapped tightly around common bile duct and arteries). I have done chemo and then chemo+radiation to shrink/kill it. I am finishing up my chemo/radiation in the next two weeks. We’ll see what’s next. All that to say, chemo is often given before surgery. There are plenty of others on this board who have had chemo and then surgery (I hope that’s in the cards for me, but we’ll see). Everyone reacts to chemo differently. Some have a really tough time and others seem to not get the worst side effects. But, I do echo getting him somewhere with experience in this rare cancer.

I can also comment on the bile drain tubes. He’s not alone in having them changed out and, in fact, he’s doing good in terms of time they are in. I got the drains in mid October. I’m 7 changes in, my last was last Tuesday and it was only two weeks old. I do everything I’m supposed to do, they just get clogged really easy. There is a whole thread on the tubes in general discussion.

Lisa

Dear Chrisna welcome to our remarkable family, you have come to the right place. I too am surprised what the Doc said about low survival rate. When my husband had his Whipple surgery he was 73, the ONC Surgeon said it is a huge surgery but not life threatening like heart surgery. I have been on this Board 8 years now and have never read of anyone dying on the table. I also do not like a Surgeon assuming! I would get a second opinion ASAP. As far as the stents go, if they are plastic they do need changing about every 2 months or they can get clogged. Wishing you the best and please keep us posted.

Chrisna….our Peter used to say: “welcome to the club no one wants to belong to” and I would like to add: “and is happy to have found.”
Princess Margaret Cancer Hospital, Toronto, sees a high volume of Cholangiocarcinoma patients; if I were you, that is the place I would look for an additional opinion. Quite frankly, I am a bit shocked to hear that 50% to 60% of surgical patients die of complications. I am wondering: is there a possibility that you have misunderstood the physician making this statement?
Neoadjuvant (prior to) chemotherapy is administered frequently for reduction of tumor load. Subsequently many have the opportunity to undergo a resection.
I am sure that others will chime in real soon to share their thoughts and experiences with you.
Again, thanks for joining in and please stay in touch.
Hugs,
Marion