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January 14, 2014 at 4:36 am #21744MeldadParticipant
I don’t post much but read everyday.
My dad was diagnosed stage 3 in Feb2011 had surgery and 4 weeks radiation. Everything was good until March2012 when scans showed it had spread to lungs. He was on Zel for a good 10months with amazing results but became resistant in May2013.
Recently, he’s just finished ipi at the start of Decemeber and first scan showed 80% reduction/tumors gone but 20% had continued to grow. We just got more scans back this week and it shows continued spread. The Doctors here have said he’s only got a few months left!? I feel like they’re just giving up, he hasn’t tried anything else other than Zel and ipi. Does anyone know anything else he might be able to get into or try here in Australia? I’m desperate!
Good luck to you all xJanuary 14, 2014 at 9:31 am #63356lak1Participant
Has anti pd1 been excluded? this trial says its recruiting in Oz – not always fully up to date. Worth ringing the sites to see I think he would have to be arm A but ask – they may be opening a combo trialJanuary 14, 2014 at 10:22 am #63357lak1Participant
sorry on rechecking prior ipi is not allowed have you searched on the uS site for clinical trials.gov I seem to remember Jonathans trial was going on in OzJanuary 14, 2014 at 1:14 pm #63358 Yes, the ADC was available at: Peter MacCallum Cancer Centre, St Andrews Place, East Melbourne, Victoria 3002, Australia
They may have other clinical trials too. Let us know how things go for you.January 14, 2014 at 7:09 pm #63359
Here are some more contacts: Dr. Shahneen Sandhu, Peter MacCullum Institute, East Melbourne, Victoria
2. Dr. Catriona McNeil, Royal Prince Alfred Hospital, Sydney, New South WalesJanuary 15, 2014 at 12:09 am #63360MeldadParticipant
Thank you soo much for your replies, it means a lot. Everyone is such a great help on this website!
My dad is actually being treated at Peter McCallium Hospital with a Professior specializing in Melanoma. He’s the one that’s told my dad there’s nothing left to try!
Tafinlar has been put on the PBS over here in Decemeber. My mum called to speak to them about getting him on that and they said it wasn’t for the type of Melanoma he has. I’m confused by that as he has the Braf mutation?
Just seems like they’re giving up too easy.
I will definitely look at some US sites but I’m not sure how we would get accepted into them living in Australia?
Thank you both for your replies, knowledge and support.
XJanuary 16, 2014 at 12:25 am #63361
I would definitely ask about the ADC that is offered at both. Braf status doesn’t matter. Wishing you a smoother journey!@
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