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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.
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!
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.
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.
