March 4, 2015 at 1:37 am #84496lainyParticipant
Hello, APK. When you think about it we literally become a part of the Medical World with this CC. Sometimes you feel like you are in Med School and other times one feels like they graduated “listen to your gut 101”. Just know that somehow what ever decisions are made seem to be the right ones as we honestly get so little would haves and could haves on our site. The right decision will be made and than you for keeping us in your loop!March 4, 2015 at 1:22 am #84495
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.March 3, 2015 at 12:03 pm #84494iliasMember
Sorry to hear of the latest news. I just wanted to say that I wish my mum was presented with any trial available at the time, but when you deal with drongo doctors, unfortunately you don’t get too far.
IliasMarch 2, 2015 at 4:45 pm #84493rainMember
My father is also battling this disease in Melbourne.
Just to let you know that his Oncologist has let us know of a phase I drug trial at the Austin and also Monash.
This is a met inhibitor like the drug that Kris is on from this website.
Mayvb you can also ask about this.
Regarding SIRT. My father also did this in December and to be honest the results havent been completely positive; his outside liver disease has grown and am not 100% sure if it has made a positive impact to his liver disease yet (CT positive; PET less so).
Feel free to ask any questions.
TeresaFebruary 19, 2015 at 6:25 am #84492
APK…..perhaps the size or volume of lesions are not conducive to radiation treatment. The cancer is systemic and reducing the volume of tumors may not be of any value when indeed others will pop up as well. Just a thought.
MarionFebruary 19, 2015 at 2:04 am #84491dukenukemMember
Based on my experience, one reason I can see to go right to a trial is that there is some requirement (like platelets >100,000) that you might not meet in a few months or some exclusion that you might meet that would rule out the trial. There were some trials I was eligible for in September that I am no longer eligible for because of low platelets.
DukeFebruary 18, 2015 at 11:18 pm #84490
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!February 18, 2015 at 6:49 pm #84489gavinModerator
Thanks for the update on your dad and I am sorry to hear this latest news. Has your dads med team say why they have ruled SIRT out for your dad? Has your dad thought about seeking further opinions from others as to possible treatments or is that something he would consider? Hoping that you get further answers to your questions and please let us know what is said.
My best wishes to you and your dad,
GavinFebruary 18, 2015 at 4:19 am #84488
APK…….Another possible option to discuss with the physician is molecular testing. Perhaps it will identify one or more biological marker for which a drug has been produced and which may or may not be of benefit to your Dad.
Thinking of you and sending tons of good wishes your way,
MarionFebruary 18, 2015 at 3:00 am #84487
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.September 4, 2014 at 2:32 am #84486mbachiniModerator
Thanks for the update and information on your dad’s treatment. I am so happy he is responding and doing better. Always love to hear good news and stories of hope!
MelindaAugust 28, 2014 at 6:15 pm #84485gavinModerator
Thanks for the update on your dad, and what greta news that you have to share! I’m well chuffed for you and your dad and hope that the good news continues to roll for him! Hoping as well that the side effects don’t get bad either and please let us know how everything goes here. A positive update indeed from you and thanks so much for posting this!
My best wishes to you and your dad,
GavinAugust 28, 2014 at 3:29 am #84484
APK…..You have been missed on this board and yes indeed it is excellent news, thanks for sharing it with us. Personally I like to compare this cancer to that of a chronic disease and as long as there a positive responses to treatment we can expect things to look up again. So glad your shared with us and all my best wishes are heading your way.
MarionAugust 28, 2014 at 3:23 am #84483lainyParticipant
Dear APK, I am so happy to hear about your Dad’s turn around for the good! My husband had a Whipple and his CC also returned to the area that had been removed. He had Cyber Knife which worked very well for another 2 years. it is noninvasive and a breeze compared to other treatments. The only qualifications are that the tumor must be under 6cm (if not it can be bought down by radiation) and there cannot b a ‘big’ spread of CC. Again it sounds as though your hubby is doing much better and for that we are thankful. Thank you for the update as well.August 28, 2014 at 2:26 am #10484
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
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