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May 5, 2014 at 11:24 pm #21954
Just wanted to share that Jonathan will be starting the Merck AEP pd1 Wednesday! Don’t want to jinx anything by saying more until then.May 5, 2014 at 11:58 pm #64283jamesaParticipant Catherine,
So Happy to hear the good news for Jonathan.It has been a long time coming! I am praying that this drug is Jonathan’s “magic bullet”.
Thank you so much for the update. I will look forward to hearing that he got his first infusion
JamesMay 6, 2014 at 12:22 am #64284AnonymousGuest
Outstanding!May 6, 2014 at 12:32 am #64285BrendanParticipant Great news!May 6, 2014 at 11:46 am #64286 For me it also brings to light the injustice the Curetech folks did to melanoma patients not formally pronouncing their PD1 as ineffective and preventing patients from trying another. I think there are a few other drugs out there that are equally ineffective and need to be pulled from use.May 7, 2014 at 12:10 am #64287njreadersParticipant any idea what site he found it at? Thanks.May 7, 2014 at 11:46 am #64288 Yes, as we’ve posted, the Mayo Clinics all are up and running. Jonathan is at the Jacksonville, Fl location and getting his infusion today!! Closer to home (and New Jersey) I was told that both Jefferson and Penn were close to operating their’s.May 7, 2014 at 2:13 pm #64289jamesaParticipant Catherine,
I thought Jonathan was going to be get PD1 at Yale so he would be closer to home. Is he commuting to Florida every 3 weeks.
JamesMay 8, 2014 at 12:26 am #64290
He needed to get started and Yale was weeks away as most are, except Mayo and a few others. So he and Francoise are enjoying the beach and nice weather and he had his first Pd1 infusion today! He is having some issues that he had previously and may need bowel surgery. He will travel back if Yale hasn’t started yet.May 8, 2014 at 1:04 am #64291JonathanParticipant A couple of additions – all the places opening the EAP early were previously involved in the big clinical trial for MK-3475 (for a list, see the author list in the Hamid et al article last year in the NEJM, July 11, 2013 – open access). All their bureaucratic work had already been done and was in place once the EAP was announced. it’s on Idris’ website. My guy aT Yale has been working very hard to move as fast as possible, and they may open as fast as next week, which would be very fast for non-participants. Even though he was working hard on my behalf (and one other patient), he was relieved that we found the jacksonville seat and told me to take it right away- my kinda doc. As I look at the author list, I don’t nderstand why MSK, Pittsburgh, UPenn and Dana Farber are being slow, however….
I hadn’t read that paper closely (since I was disqualified – thanks again, CureTech), but the results are pretty amazing. While “only” 40% got a partial response or better, a partial response was defined as a 30% tumor reduction or better – a pretty tough criterion. Less than 30% actually progressed after treatment, and the other 30% showed some tumor reduction between zero and 30%. To me, that means 70% got a benefit. Even more impressive, all the patients who got some benefit continued to maintain that for the duration of the trial (and Dr Joseph says now for an additional year), and essentially all remain in treatment. Tell me if you think I’m reading it wrong. He thinks non-responders have a particularly heavy tumor burden.
Also, I feared it would be difficult to switch locales, but The Yale nurses checked with Merck and there’s absolutely no prob switching after even just one infusion. So don’t feel like you’d have to commute for ever to a distant center and bankrupt yourself. If your oncologist gives you a problem, he/she is being unethical and not looking after the patient’s interest (and I mean it – quote me if it helps). I got it all done (evaluation, labs, drug order/delivery from Merck, infusion) in 2 days in Jacksonville and likely wont come back. And I’m hardly the only one doing this. Worth it!
So count me as a believer – been waiting for this for at least 5 years..
JonathanMay 8, 2014 at 12:18 pm #64292rosa11Participant
I understand in order to qualify for the EAP trial you have to have failed Ipi and if you have the mutation, been treated and failed a BRAF and/or MEK inhibitor. Do you have the BRAF mutation? And if so, have you been treated and failed all these?
Wish you the very best,
RosaMay 8, 2014 at 7:03 pm #64293
if you don’t mind I will answer for Jonathan as he is probably traveling. He is BRAF negative so does not have to fail a BRAF therapy for the EAP. He did progress on IPI and so he qualified for the EAP. You must have failed the two approved therapies: IPI and BRAF type therapies.May 21, 2014 at 6:54 pm #64294dkmcParticipant
Finally!!!!!! Wonderful,wonderful news for Jonathan…Hope it works its magic! KarenMay 22, 2014 at 12:22 am #64295 I heard from him today and so far so good!
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