richardl

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.

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?

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, 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.

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/2011abstracts/abstracts/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.

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?).

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.

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.