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February 1, 2014 at 1:01 am #21780
I am hoping to seek advice/opinion on what might be my best option. Recent PET/CT shows I have built a resistance to the braf/MEK combo that I have been on since Sept 2013. (I was previously on Zelboraf for 7months & a couple of courses of radiation both at stg 3 & stg 4). I am in QLD, Australia & have been advised the PD-1 trial has closed here with no other trials available to me at this stage. I have two sets of Oncology care because I live in regional Townsville and travel to Brisbane every four wks for current treatment collection. The options it have been provided this week are:
Stay on braf/MEK combo as it will slow new growth and potentially buy some time until a better treatment option becomes available OR try Yervoy. One Oncologist prefers the latter but the other believes that the disease could take me before Yervoy actually works.
I know the chance of Yervoy working is marginal but shouldn’t I give it a go? My current disease includes skull, shoulders, humerous, cervical & lumber spine, ribs, pelvis, femur & intra-abdominal (growing beside liver & also spleen) with no vital organs compromised as yet, I’m thinking this might be my window to try something new…? I’m 35 with a young family & am struggling… Any advice is greatly appreciated.
BelFebruary 1, 2014 at 10:35 pm #63465
I believe the ADC trial is available there, I posted the locations previously. That is worth looking at.February 1, 2014 at 11:27 pm #63466 Thank you so much Carolyn. Unfortunately Victoria (4000km’s) is a long way away from where we live and relocation isn’t an option for us. We are trying to do the best with what we’ve got.
Bel.February 2, 2014 at 9:21 pm #63467
I saw that the NIVO (Pd1) and IPI (Yervoy) trial is listed under Queensland, Australia. Go to this link for a list of those studies including that one: http://clinicaltrials.gov/ct2/results?term=melanoma+queensland+australia&Search=SearchFebruary 3, 2014 at 5:57 am #63468 Thank-you Carolyn. We had pinned our hopes on this trial and had earlier moved my care to Greenslopes in Brisbane in the hope I could get better access to trials. Unfortunately my Oncologist has advised that it has now closed.
I do really appreciate your assistance, we are feeling that our options are now limited.
BelFebruary 3, 2014 at 1:11 pm #63469
If you call me Catherine I’ll keep looking! (a lot of people call me Carolyn) I would call that trial and get on a waiting list. You never know if someone may drop out or even you have a possibility of talking them into one more slot!February 4, 2014 at 7:17 am #63470 Oh my goodness!!! How terribly rude of me! I can’t believe I typed Carolyn- I was definitely thinking Catherine!!! Please accept my most sincere apologies!! I don’t even know what excuse I could use to justify the reasoning
I will give them a call and see what I need to do to get on the waiting list.
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