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http://www.youtube.com/watch?v=RFHad0T-KR0
22 Mar 2013 – Uploaded by Justin Stebbing
Professor Justin Stebbing – Imperial College (NIHR Media Competition). Justin Stebbing …These are just some clips of this wonderful man I wanted to share, Can you tell I am a big fan????!!!
You know, I had a lovely walk today with my youngest (she’s 2), my husband and our dogs and just watching my little girl take her dad’s hand and look up at him , drives all of this and those long days and late nights researching, but thank you for all your kind words.
Xxx
John we had 4 mutations noted but we didn’t haven’t KRAS, I know that’s a common one though.
Kirsty x
Gavin I was up for hours last night and it payed off, I had some lovely emails from Addenbrookes this morning.
We have had just a massive day, Professor Stebbing just blew us away, he is the same age as us and has children the same age, we connected on so many levels, we had such a positive meeting and my husband is on great form tonight. Everything people say about him is so true, his commitment, positivity and lovely nature could make you cry.
The main things that came from today are that we HAVE been referred for SIRT from prof Stebbing, he was PRO all my ideas and wants to use some of our foundation one trial drugs too. He told my husband he is going to keep him around for some great new treatments coming along. He had just returned from Harvard and he believes the way this disease is treated in the US is the right way and that we should throw everything at it. His trump card was that he wants to look further into my husbands cancer, he finds it a ‘little’ uncharactoristic for CC so he is going to do a Gallium scan to see exactly what’s what.
Off to Brussels still on Monday.
Having a calm Friday xxxGavin you are an angel!
I had contact from Dr Valle this week who referred me to his colleague Dr Hubner, they have offered me a consultation but I am yet to arrange anything. We are meeting prof Justin Stebbing tomorrow to discuss these foundation One options so I will run all this past him too, maybe he will know. The majority of the information I can find is suitability for ICC and ours was originally From the distant bile duct even though its now gone and all we are left with is the crap on the liver.
I will work my way through you links, really appreciate this. X
Thanks lovely, really appreciate it, struggling to find where we can do it our side of the pond, the doctor I have discussed it with ( who was amazing) was in minniapolis…….
Jayne I am so sorry to read about your sister and I hope you will continue to research and hopefully come up with options for her.
As you are in Leeds, why not start with Dr Juan Valle at the Christie in Manchester? He is doing amazing work with CC right now.
We live close to London and our doctor is at the London Oncology Clinic, Harley street I have met lots of people from Yorkshire there! They have a great website and lots of uplifting information.
Don’t be too disheartened that she may not be able for surgery now, there are lots of avenues to explore. My husband was diagnosed in June and was able to have surgery at Addenbrookes, he was told at the follow up that his cancer was clear but 6 weeks later it had spread to his liver and in hind sight maybe he should have held back from the surgery, had some chemotherapy and tackled it all from a different angle, who knows? Every case is unique remember that and your sister can hardly fall under statistics at her age and good health!
Good Luck Jayne, you will all get there. I have been thinking of you all day after I read your post this morning. Kirsty xx
Hi guys!
John I am happy to share the info I have on CTNNB1, it came to us via foundation one so I will share with you the bits I have. We have yet to discuss using any of this information either.
It seems that the inhibition of CTNNB1 is still in early clinical trials but it would seem that this mutation remains dependant on upstream Wnt receptors and Luganda therefore this mutation may confer sensitivity to therapies targeting Wnt Luganda and receptors.
Potential clinical trials
A phase 1a/1b clinical trial of PRI-724 targeting Beta Catin (CTNNB1 encodes Beta Catin) locations are Arizona, California,Florida, Minnesota
NCT ID 01302405A Phase 1 open label Dose escalation study of Oral LGK974 in patients with malignancies dependant on Wnt Ligands locations are Maryland,Massachusetts, Michigan,Texas.
NCT ID 01351103.That’s all I have John but I hope that these may help, I am so sorry to hear of your wife.
Lots of love
Kirsty xEvening All from a very cold England tonight!
John my husbands Foundation one showed CTNNB1 mutation too! It’s found in only 2% of Bile duct adenocarcinomas.
I have have 2 relevant trails if you need them.
My husband has recovered really well from last weeks infection and we are back on track for day 8 treatment on Tuesday.
Lots of love
K xxLainy wouldn’t that be amazing!!! We so need a break!
Gavin I feel so lucky having these as options close to the UK , my husband is 42 we have no choice but to throw everything at this.
XxxThanks guys!
Treatment went ahead yesterday at a reduced dose and he is now on oral antibiotics for his infection, we never got to the bottom of what the cause was but his inflammatory markers and liver function are now on their way back down and he is home, well, and ready to crack on with life again.
So the Vero consultation is in Belgium on the 13th and we have also sent his records to Milan as a back up and they emailed this evening saying that the team there will review his notes in the next few days then get back to us with a decision. I am praying we get the go ahead for this and I am so grateful to this site for all the brilliant aids I find here!
Stayed tuned for my post regarding Foundation One, results are back but I don’t want to hijack this thread.
Lots of love to all
Kirsty.Well after a very stressful weekend I have a confirmed consultation In Belgium for vero!!!
We have had a roller coaster weekend, my husband developed a fever Saturday thru Sunday and is in hospital on antibiotic IV, his platelets were low last week and we were unsure if we could do treatment this week but they are back into the 100’s and the temperature has gone, treatment was delayed today but going ahead tomorrow which will be day 1 cycle 2 Gem/cis. The Dr is concerned that the liver mets are causing all the problems so Straight after this cycle we are looking to do radio in the hope it will take the heat off the liver for cycle 3, I don’t have an exact number of liver tumours but the Dr described it as a pepper pot so the majority of radio treatments aren’t available to us right now. On the upside the tumour markers went down after only the 1st cycle!!!
I feel really positive even after this little setback and I am still determined to fight for my Happy ever after!
So excited about the Vero.
Lots of love to all.This looks amazing!!! I have just requested at consult on this for my husband in Brussells, praying we could have a go at this as his spread to the liver is so early and no other mets. They say we should hear within 5 days. Thanks so much for sharing this!
Lots of love to all x
Hello everyone and Thank you so much for all your kind supportive posts, I have actually felt such a lovely calm since my first post and it has really helped to keep me positive.
My husband is well today but a bit agitated, they give him Dexamethasone for 3 days after his treatment then he falls pretty flat for a couple of days afterwards, it’s so hard for him as he is still only 7 weeks post whipples surgery. We are on a break from treatment until the 29th.
Gavin… I too am a fellow scot! I am originally from Fife! I am so sorry to hear about your Dad, but I can tell you he would be very proud of you helping others in this way and I am so grateful for your welcome. My husband had his whipples at Addenbrookes in Cambridge but is now being looked after by Dr Peter Harper at the London Oncology Clinic In Harley street, we are very lucky to have him, he is very straight but also very positive with us and he does great things! He has been treating a lady with lung cancer for 12 years and she is well into her 80’s! I can’t ask for more at the moment, I am just praying that the Gem/cis is doing its magic as we have never had any good news so far.
Reacher… Thank you so much for your link, Belgium is very close to us and I am going to mention it to the clinic. My husbands scan will be around the 7th too so let’s pray for a double celebration, we need one!!!! Hope you are both ok this weekend.
Thank you once again for making me so welcome and to anyone lurking and afraid to post, this has REALLY helped and I wish I had posted sooner.
Lots of love to all xxxx
