Although I don't post too often, given this site has provided much support over the past couple of years I just wanted to give a bit of an update of how everything has been going and next steps...

Last update on my Dad was that he'd had a successful Whipple procedure (in July 2012) with negative margins and no lymph node involvment. After adjuvant chemo with Gem, he started showing an increase  in his tumour markers (although clean scans).

Update from this was that a 1cm tumour was found where the ends of his bile duct had been stapled together from his surgery (this was late last year). Given it's location and arteries nearby, surgery was not an option to his oncologist elected to go with radio therapy and xeloda. When prepping him for the radiotherapy, there was a suspect spot shown in his liver however the decision was made to treat what was visible and following treatment this tumour was classed as 'dead'.

Unfortunately a few months later (March this year), his tumour markers had risen to 3,000 and subsequent scans showed a 3cm tumour in his level. Given he had already been through a Whipple Procedure resection wasn't recommended, and his oncologist wanted to explore RFA treatment. In the period of time between getting the ultrasound done for the RFA his tumour had grown and 2 more spots had shown up. The oncologist had advised that it was spreading very quickly and aggressively and that he may not have much time left (tumour markers at this point had risen to 130,000).

His oncologist recommended FOLFOX as an option (with SIRT being a back up option should this not work). Luckily Dad hasn't experiences very many side effects from the FOLFOX some hairloss and pins and needles in his fingertips has been as bad as it's got. His placets have remained stable throughout his treatment and his tumour markers dropped quite rapidly. At the conclusion of his treatment (last week), his tumour markers had dropped down to 700 and both scans that he'd had during treatment had shown shrinkage of his tumour.

Given that he didn't experience any serious ill effects from the treatment, he's elected to keep going for the time being. In the meantime he's also been registered on a trial list for PENAO which I believe works by inhibiting glucose uptake by cancer calls. However, while his current treatment regime is working they see no need to go down this path at this stage.

Above all though, his health and spirits have been very good. He goes about every day as he used to prior to his diagnosis without any ill effects. I think this has been the positive to take out of all of this... Especially given that in March the future didn't look too great.

A positive update for those looking for some hope smile

Thank you for all the responses and well wishes.


We had a meeting with the surgeon who performed dads whipper, and he was a bit disappointed that he's levels hadn't come down given the success of the initial surgery and subsequent pathology. He too is of the agreeance that we need to wait and see what happens over the coming months.

Posting this on behalf on my father (64 at the time) who was diangosed with CC in July last year after suffering from jaundice and severe itching which I'm sure you're all familiar with. Subsequent scans showned a tumour in the lower 1//4 of the bile duct and Whipple Procedure was recommended and conducted in late July last year.

Recovery from the surgery was difficult initially, however he now suffers from no ill effects or complications (diet has remained exactly the same).

Post surgery we learnt that the 6cm tumour hadn't spread to any other organs and was contained within the bile duct (also no lymph nodes showed any involvement with which we are fortunate). We were presented with the option of continuing without any treatment or running a course of chemo (which I'm fairly certain was Gemza). For more peace of mind that anything else we decided to proceed with the treatment.

The treatment proceeded well; however in the second last week of treatment he's CA19 markers had increased to around 70 and then the proceeding week up to 100 which prompted his oncologist to order an urgent CT Scan.

The subsequent scan was clear and we were told to run another set of bloods in 6 weeks, which we have just recently completed and again there has been an elevation in his CA19 markers (up to around 200 I believe). Advice moving forward from here has been that he appears to have microscopic cancer cells present and that we should sit back and wait until it presents itself before looking into further treatment (further tests and scans scheduled in July).

This doesn't really sit well with me, as I'd assume there could be something done in the meantime to try and negate what's happening... Surely sitting back and waiting can't be the best option?

Other than that Dad feels fine and doesn't have any issues at all.... all other blood results with the exception of his CA19 are perfect.

Personally, I'd like to get a second opinion on the best way of proceeding from here, if more for our own peace of mind than anything else.

Does anybody know if there are any dietary adjustments that could be made in order to potentially help?

We're based in Australia and being a fairly rare condition there doesn't seem to be too much information available or that many oncologists that would specialise in this area.