Many thanks for the information, Marion - that's a great help.

In fact we're based in England, and have been travelling to Germany for treatment.  TACE is only used in the UK for liver disease, not CC. We have already met some of Prof Vogl's other British patients, who are being given TACE for liver, kidney and lung disease.

The most recent paper we could find on TACE for treatment of patients with unresectable CC can be found here: http://goo.gl/TfRuy (full text may be borrowed on request if anyone's interested).

We're not sure of the correct terminology when searching PubMed etc. My wife originally had a Whipple after diagnosis June 2011; that was resectable CC. Now, with recurrence in the retroperitoneum (the new tumor has encased the superior mesanteric artery) this is considered inoperable; cyberknife would be high risk for neighbouring organ damage; nanoknife we're not sure yet - it's not commonly used in the UK.  All reasons why we considered TACE as an alternative treatment: non-invasive (well, reasonably), low risk etc.

Should the correct terminology for her condition now be unresectable CC or inoperable CC?  Or whether it's now CC? It's not entirely clear from the PubMed results whether 'unresectable' only refers to the 'original' disease.

My wife (Whipple 2011 for CC, post-adjuvant chemo, chemoradiotherapy for recurrence, and now recurrence in retroperitoneum) has just started transarterial chemoembolization (TACE), plus systemic Xeloda, with Prof Thomas Vogl in Frankfurt.

We're short on outcome data, survival stats and academic papers besides a 2011 study (Int. J. Cancer: 131 733-740, lead author Prof Vogl) on TACE in the treatment of patients with unresectable CC; not exactly my wife's case, but relevant.

Researching PubMed and Google Scholar produces numerous studies on TACE for liver involvement, but only the above paper for extrahepatic CC.

Could anyone direct us to published TACE research more relevant to my wife's case? Or institutions specialising in TACE for CC?

Contact with any of Prof Vogl's other patients, past or present, would also be appreciated.

Many thanks.

Many thanks - those links are useful.

The information is much appreciated, but I still can't see what RFA is - there's no mention on the link you posted.  I'm sure I'm missing the obvious but perhaps you could steer us in the right direction?

Many thanks for the information.

May I ask what RFA stands for?

It's interesting to hear (from another Forum member) that some oncologists are not interested in following C19-9 at all, and consider it unreliable.

I'm also interested in the units we are using. When we talk about C19-9 readings in the 0-37 range, are we using the same units as those who report in 100's or 1,000's?

My wife had an incisional hernia repair (with mesh) at the beginning of July, and has made a good recovery.

We're trying to educate ourselves on the follow-up bloodwork results, with  particular reference to CEA and C19-9. We've found quite a bit of information, but if anyone knows of particularly instructive websites, we'd appreciate the links.

We're not sure what a 'normal' range actually implies (0-37 on C19-9?), and the plus/minus errors on these readings.  We understand that individual readings don't give as much information as a trend.

Also it would be really useful to know whether C19-9, in particular, could be affected (in the short term) by a hernia repair and/or fairly heavy Creon dosage.

Any comments on the following treatment history would be really appreciated:

Whipple   4sep11
Post-adjuvant Gemzar chemo ran 6 months from Nov11 - April12
Incisional hernia repair 4jul12

CEA from 26oct11 though to last week has been steady at 3 or 4.

CA19-9 reduced from 13 (26oct11) down to 6 (+/- 2) (15may12), but last week blipped up to 25 (previous reading was 5 on 15may12). She had repeat bloodwork yesterday, but the results are not back yet.

We have total confidence in her consultant (Marsden UK), but we're keen to learn from anyone else in the same situation.

Many thanks.

Many thanks - just what we needed!

Many thanks, everyone, for the feedback.

We really need to get clear in our own minds the difference in use of CT, PET and MRI; when they're used, and exactly what for.

We're seeing her surgeon tomorrow, so hope to get that explained, and also to find out the options for the hernia repair. One thing appears certain, and that's hernias don't heal themselves.

After my wife's Whipple they didn't advise any restrictions on movement or exercise - just return to a normal life as soon as you can was the attitude. She remembers the exact occasion, lifting a box, that almost certainly initiated the hernia and its development.

Thanks, Randi.

Yes, I believe she'll be seeing her consultant and/or specialist nurse every 3 months, and it will be blood work every 3 months.

There was a blip before her final all-clear post-chemo, with hotspots showing on a PET scan, but they were false positives and anyway unrelated to CC and due to untreated dental problems which couldn't be dealt with during chemo.  They called them 'incidentalomas' (worth Googling if anyone's not familiar with the term - we weren't).

My wife is currently 9 months post-Whipple for CC, and 2 months post-adjuvant chemotherapy (Gemcitabine /Gemzar). Her scans and blood tests are clear, though she has a fairly severe incisional hernia repair in the next week or so.

Does a six-monthly CT scan and 3 monthly C19-9 etc. sound reasonable, or are any of you on a very different follow-up regime?

Many thanks.

Although only a preliminary result, this abstract, presented at the NCRI Conference in Liverpool (England) last week, goes some way to answer the question posed by this thread:

http://www.ncri.org.uk/ncriconference/2 … /PP39.html

Conclusion: There is a benefit for adjuvant chemotherapy in patients with clear resection margins (using, in this trial, GEM or 5-FU/FA).

However, it raises many questions, some of which I will try to get answered.

Many thanks for the advice. We're still waiting for the revised histology - should have it tomorrow, but suggested chemo now looks like Gem on its own.  BILCAP en route.

Kate, I'll send the BILCAP as an attachment (and anyone else is welcome to have a copy); as far as I can see it's not on the web.

2nd opinion recommendation for my wife was immediate GemCIS followed by radiotherapy, but our 2nd opinion hospital onco requested repeat exam. of the histology/slides and have (radically) revised the original histo report, so this advice may change. It just happened yesterday. Ist opinion was choice of either BILCAP or active surveillance (expectant management?).

PCL 1029, you're absolutely correct  about the 2-year figures.

Kate, I think you'll find this interesting: http://goo.gl/xE8lg

If you tweak it to give Bile Duct / Resectable Disease, there's some useful info on survival rates for 5 years, and there are enough references to keep me quiet for a day or so - I'm still wading through them.

Also, have you got the full BILCAP protocol? It's about 75 pages, and I've got it on PDF if you haven't.

Many thanks for the information and links everyone. I need to read thoroughly before replying.

We've noticed one interesting set of information to have come out of BILCAP: an interim analysis commented on survival of patients on the trial. 12-month survival rate was 86.4%, and 24-month rate was 82%. Not easy figures to interpret, as this includes both arms of the trial - those on Capecitabine and the control group who are not.

Does it imply that the live arm figures could be even higher? Do studies like this, even at interim stages ever break down the live arm and control arm differences?  Is there data to show survival figures for resected patients who've not had adjuvant treatment? If so, it would be interesting to compare with the interim data.

Those survival figures above come from the BILCAP poster ( see: http://goo.gl/0QPsY ) under the heading of Survival and Toxicity.

For a patient, after a Whipples-resected distal bile duct tumor, is there any evidence to show whether adjuvant chemotherapy or radiotherapy is more effective post-op (i.e. when no sign of recurrence) or when (and if) recurrence occurs?

In other words, with recurrence, is a patient less likely to achieve a cure after a period (months/years) of active surveillance compared with immediate chemo or radiotherapy?

We can't find any research which shows a difference.

Many thanks.

Many thanks, Malcolm. Just sent you a message.
Richard

Many thanks for the welcome, everyone.

A plastic stent was fitted 2 weeks ago, and replaced soon afterwards, as there was no sign of the jaundice receding.  Now the jaundice is decreasing, bilirubin level coming down (270 / 170 / 158 /115......) but the itching has been the worst symptom for her - her whole body, night and day, although worse at night. Ice packs have helped; Questran (colestyramine) 4g x3 per day; Eurax (Crotamiton) cream as well. We tried several other medications, but these have worked for her.

With a provisional diagnosis of a distal bile duct tumour, looks like a Whipple in a month's time, and hopefully the jaundice will have cleared by then, which we understand is important.

Thanks for the welcome, Lainy.  Actually my wife is the patient: diagnosis is a bile duct tumour, though whether malignant or not can't be confirmed; initially Princess Grace Hospital for investigations, but heading for a Whipple's at the Royal Free Hosp., both in London. We looked at keyhole rather than open surgery, but not suitable in her case.  We're still sifting through the information on this site - impressive!

I'm totally new to this, so please excuse these basic questions:

1) If a stent has been fitted in the bile duct to relieve obstructive jaundice, is the Total Bilirubin level expected to decrease daily over a period of a couple of weeks, or can there be occasional rises? 

2) In trying to ascertain whether the jaundice is decreasing (besides visual clues: skin, eyes etc.) are there any other of the dozens of readings in a liver function test on which we ought to keep a watch?

Thank you.