(13 replies, posted in Introductions!)

Hi Karen,

I can't really comment in regards to Peter Mac as we never had any dealings with them.

But during my father's illness we did deal with a great research team as Royal Melbourne, who were behind a number of clinical trials targeting specific mutations.

May be worth speaking to them also.


(6 replies, posted in General Discussion)

After thinking about this for so long and hoping I'd never have to make this update, my dad unfortunately lost his battle with this awful disease a week ago today.

At last update, dad was scheduled to commence the PENAO trial a few months back - however after this had been delayed we were offered a trial for a new FGF inhibitor TAS-120. Genomic sequencing we'd done showed that he had this mutation so it seemed a logical choice.

He'd been on the trial for around 6 weeks when he developed the dreaded itch again on his 67th birthday. Subsequent scans showed that the cancer had grown and next steps were to try and stent the main duct or put in a drain to stabilise his bilirubun levels.  After a bout of cholangitis which put him in hospital, we managed to fast track an MRI so we could get the ball rolling, as the doctors said he was fit and well enough to pursue other treatments. 

The mri unfortunately showed what we weren't expecting... And that was that the main duct wasn't the issue, but the smaller little ducts in the biliary tree and been infiltrated with tiny satellite lesions stopping the flow into the main duct.  There was nothing they could do.

His oncologist gave us weeks to short months - and dad left us on the 5th week.

I take solace in knowing dad was in no pain and didn't suffer much  at all until his final day.  And that he remained at home this whole time, passing surrounded by his family, mother and sister. He even woke up to look at us all one more time before going which I'll never forget.  On his final day, he still had his mischievous humour and grin and managed to watch one more AFL game with us.

Our hearts are broken and I know life will never be the same.  But I also know he'll always be with us....

Thank you to all on this site, who have been such a valuable support over our 3 year journey.

RIP Dad.

Hi All,

Thanks for your responses, it's very much appreciated.

Just wanted to give a bit of an update... We met with the trial team, and provided Dad gets through all the testing (heart, liver, kidney's etc) - he's going to be admitted into the PENAO trial towards the end of this month. The doctor advised that they had done molecular testing on dad's resected tumour however no mutations were found. They seem to have had positive results in maintaining stable disease with this trial thus far - so hopefully we achieve the same. Essentially from my understanding PENAO is the second generation of the GSAO drug (but significantly more potent), that aims to inhibit glucose update and blood supply to tumours. The layman's translation about the drug by the doctor is that it's an organic form of arsenic - very interesting!

I raised the possibility of SIRT with the trial doctor and he too agreed that it should be considered as a legitimate option - however after consulting with his oncologist she advised that it wasn't for him. Not sure on the specifics of this however...

Theresa, thanks very much for that information - it's good to know that there are options out there. Will definitely keep that in mind, if things don't go well with this trial.

Ilias, can definitely understand where you're coming from... I think given this disease isn't very prominent here in Australia that the doctors just generally don't have much in the way of 'next step options' - especially when you're on a site such as this and you see the breadth of treatment options available around the world, we seem quite limited here.

On the positive side, Dad's still treating each day like a normal one and doesn't have any ill effects at all... I think he feel's better when he's receiving treatment as you feels like he's doing something about it rather than sitting around waiting for things to get worse.

Will be sure to keep you all posted on how it all goes.

Thanks for the insight Marion and Gavin.

I believe there was some molecular testing done when Dad initially met with the trial team last year, but I'm not too sure how extensive it was... so will be finding out more details tomorrow.

It's a strange one in regards to his onc's recommendations as when he first started FOLFOX she mentioned that we had SIRT up our sleeve if this didn't work... but now that the chemo is not responsive - she's recommending straight to trial? It's almost like now that the chemo's not responding she's not really interested in much else, her exact words were 'we didn't think you'd still be here...' - which I guess can be taken negatively and positively.

Definitely think we need to seek our some second opinions, I think Dad's been conscious of not rocking the boat too much in the past... but now that we need to make a good informed choice I think he'll be more open to seeking other opinions - especially if I make him! smile

Hi All,

Just wanted to give a bit of an update on where Dad's at...

He kept up with the FOLFOX until around November last year with really good results, his main tumour in the liver shrunk from 10cm to 2.5cm and tumour markers had dropped to around 120 (which was the lowest they had been in a very long time). After this his oncologist switched him to FOLFIRI due to a couple of reasons 1) was neuropathy of the finger tips and toes 2) as the tumour markers started rising again she felt his body had adapted to the FOLFOX combination.

He had a scan just before Xmas and no progression was shown, however his markers were still increasing... Fast forward to the now and his latest scan has shown a new 2.5mm lesion in his liver which was obviously causing his tumour markers to rise (there was still no progression in any of the other previous areas).

The positives to take from this I guess are that is hasn't spread to any other organs and that his liver function tests have all been fine, and despite this new lesion his liver function is still good and unaffected.

His oncologist has stopped his FOLFIRI treatment as it no longer seems to be working; and claims that there isn't anything else to try from a chemo perspective which I found strange? My concern is that by stopping chemo, it may speed up progression as from my thought process even though it may not be 'stopping it' per say - it may at least be slowing it down.

We've been recommended to partake in a clinical trial here in Australia for PENAO which we're meeting with the team with at the end of this week. Personally, I'm not overly keen on this option YET as it's still a Phase 1 trial and little is known as yet. Given that nature of his CC, I would have thought that something such as SIRT would be more applicable at this point? Particularly as he still has good liver function.

None the less, these are all the questions that I'll be asking this week! So hopefully will have an update for you over the coming days... I just feel that the next steps here a crucial and don't want to put our effort into something that still has so much of an unknown when there are recognised treatment still available that we haven't tried yet.

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.