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    My onc has been doing them monthy, but I brought it up today (sitting in chemo now, drugs done, getting last bags of magnesium and potassium and I can leave) and he did order it again. I think I get a liver function panel on the 2nd dose of the cycle, and each one has shown completely normal liver function so I’m pretty good there. Yes, 22 on the CA19-9 is good, I’ll find out next week what the test from today shows.


    As a general comment, I see my onc every four months, and she typically orders eight to 12 panels (Chem 20, CA 19-9, liver function panel, CEA, etc., etc.). BC I’ve had some blood test anomalies, I’m getting most of them monthly when I don’t see the onc. During chemo, I had a bunch of tests weekly, and the local onc decided go or no go on that weeks infusion based on the most recent blood work. Any time there’s any reason for uncertainty is time to increase the blood test frequency. BTW, I wouldn’t read too much into one or two CA 19-9 results. I would just be happy it’s < 37.


    I did have another CA19-9 test done on 1/27, one month after the other one. It was 22 (other was 37). Downward trend?? Not sure. I will ask about the frequency of this test. My liver function tests show everything is fine also…


    I’m going to have to ask my oncologist about that for sure. My local oncologist has and will consult with the oncologist at Sloan, so maybe another call from my local guy up there wouldn’t be a bad idea.


    Jim, I so agree. After Teddy’s Whipple he had monthly LABS for at least 2 years then he went to every 3 months of LABS along with the ONC visit for another 2 years. I had a GIST (another rare Cancer) 2 1/2 years ago and still go every 3 months with LABS to the ONC. Glad both you guys are doing well!


    Derin, I’m really surprised you have not had monthly CA 19-9 tests, along with liver function panel, etc. For nearly the first year after my resection, I had lots of CA 19-9’s. You should be getting that one at least quarterly, along with an occasional CEA marker test. About the only reason to not prescribe the CA 19-9 is some patients with cc don’t have any meaningful response to it (I have a friend in that category)


    See my earlier post on your thread… I’m similar to you in that I had clean everything but couldn’t start chemo until my drain was removed, bile leak stopped, and I was off antibiotics. 1/13/12 was the first day of Gemzar chemo for me. I did one cycle of Gemzar only (cycle is 2 weeks on, one week off) and one cycle of Gemzar/Cisplatin and my second cycle starts this Friday. I didn’t start chemo until 4 months after surgery, almost to the day (surgery on 9/14/11). My CA19-9 number when they did the bloodwork in January was 37, in the normal range, and it is the only blood test that I’ve ever had the CA19-9 checked so I can’t compare it to anything.

    Jim makes some very good points in his post above also. We have to trust our doctors. Eli’s points are also just as good. With clean margins, chemo is almost a personal decision. My wife and I didn’t want to have something happen 4 years down the road where the doctors said “if only you did chemo, this may not have happened” so we decided to do the chemo. I’ve been remarkably lucky with no side effects whatsoever at this point. Sounds like Eli has a good read on the situation regarding a ‘kneejerk reaction’ with your oncologist, but maybe it is ‘making your decision’ for you regarding the chemo. In any event, I sincerely wish you luck with your treatment!


    Thanks you everyone for your support. I feel much better today since I had some time to digest.

    Eli, I agree with you. At least, now she’s going to stay on top of it instead of looking at the data only.

    Curious to see what kind of chemo cocktail they have in mind…..



    The way I read your story, your oncologist got spooked by seeing two relapsed CC patients so close to each other.

    As others have said: CA19-9 tumor marker going from 94 to 74 to 121 doesn’t mean that your cancer is back. CA19-9 test is not fool-proof.

    It’s good that you are scheduled to do both PET/CT and CT. The combination of two scans is fairly accurate at detecting recurrence.

    Best of luck with the scans.


    LeeAnn, I’m going through something very similar. I had a successful resection 4/2009 with clean margins, followed by six months of Gemzar. Blood tests were all unremarkable and normal through 8/2011, when I decided to use my standing order for blood tests. CA 19-9 and bili numbers were high, and have continued to be high (CA 19-9 highest was 160ish and total bili ~ 1.4).

    The approach my onc has decided upon is to increase the frequency of PET/CT and followup visits to 4 months from six months. You should be aware that the CA 19-9 marker test is subject to some amount of random variation and is influenced by any inflammation or infection you may have. So far, all my PET/CT and CT’s have not shown any recurrence of cc. I’ve decided to just not worry too much about the blood tests, as long as the PET/CT do not light up. I’m putting myself in the hands of some pretty smart people and I just have to trust them.

    BTW, a PET/CT is particularly good to find recurrence of cc, since active cancers growths illuminate green on the scan (areas the have significant glucose uptake). The blood tests are bothersome, though.

    Good luck with the scans.


    LeeAnn, I hear you on the wish it would all go away! Don’t panic too much though. You were wondering if getting chemo and radiation would be the better choice and here you are! Now you don’t have to think “maybe I should have”.
    Tumor markers are not always indicative of the return of the cancer. My girlfriend had ovarian cancer 5 years ago and her markers went up in the fall. She was checked out thoroughly and nothing was found.
    I’m glad your oncologist is on top of things. Also glad you have those beautiful kids to avert your attention. Wishing you smooth sailings through your chemo and radiation. You are in good hands. Hugs. Nancy


    LeeAnn….and, that is why we call it the great roller coaster ride – we never just know what hits us next. I like that your doctor moved quickly and that everything is lined up to go. Hang in there. You are ready for the counterattack.
    Hugs and love,


    I was feeling almost back to normal (physical and mental) but I got a call from my oncologist to come in for blood work. It’s been 6 weeks since last ct and blood which were normal so she wanted to see me in 6 month to follow up.
    I was wondering and worrying why she wants to see me so soon. So I went last Friday for blood work and met with oncologist. She said she saw 2 new patients last 2 week with recurrent CC and wants to compare tumor maker since last check up and not to worry. Well I got a call Monday and said my tumor maker has gone up from 74 to 121 and wants me to get new pet/ct and start chemo and radiation. What the heck happened? Last Dec. was 97 and Jan. was 74. So I have appt for pet/ct and ct this Friday and Monday they are going to put port and Tuesday I’m meeting with radiologist and oncologist.
    My head is spinning so fast and don’t know what to think anymore. I thought I was lucky one with sucessful surgery with clean margin and no need to get chemo. I have been so worry for last 2 days and things are happening way too fast. Now I have more anxiety than the day before the surgery. Ahhhhh I wish this whole thing would just go away.
    Thanks for listening.



    I’m guessing you had perihilar CC, a.k.a. Klatskin tumor. NCCN Guidelines view them as extrahepatic CC.

    A quote from page MS-25 of the Guidelines:

    In these Guidelines, extrahepatic cholangiocarcinomas include perihilar cholangiocarcinomas (also called Klatskin tumors) which occur at or near the junction of the right and left hepatic ducts…

    Based on this comment, I’m guessing you should be looking at slide EXTRA-2, which gives you 4 options. I understand that it’s not very helpful. You are right back at square one where you are not sure if you made the right choice. You might want to seek 2nd and 3rd opinions.

    Ask your oncologists to review your post-surgery pathology report one more time. Ask them to look for risk factors *other* than positive margins and positive nodes. Two additional risk factors I’m aware of:

    * perineural invasion (cancer cells invading the space surrounding nerves)
    * poor cancer cell differentiation (differentiation refers to how different the tumor cells are from the cells from which they originated)

    I recall reading medical papers that linked these two factors with worse survival. If your pathology report mentions either one of these factors, ask your doctors whether you should give more serious consideration to chemoradiation or chemo.

    Best wishes,

    ADDED: Government databases that track cancer statistics classify Klatskin tumors as intrahepatic CC. In the past, they used to classify them as extrahepatic CC. This change in classification created a lot of confusion. That said, NCCN Guidelines seem pretty clear. They put Klatskin tumors under extrahepatic CC.


    Hi Eli,

    Thank you so much for your information. According to my oncologist I had intra/extrahepatic cholangiocarcinoma. I’m confused….so which one am I??


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