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November 11, 2012 at 6:00 am #20761
Hello Everyone. Tyring to convince my brother who is Stage IV to make an appt. for the Anti PD1 plus Ipi trial at Sloan. He is hesitant because he feels like clinical trials are done to treat people like lab rats. I am gathering all my evidence to prove him wrong. I think the days of chemo working for him are coming to an end…hope I am wrong. I think the Anti Pd1 trials are the way to go. He failed Yervoy. Had it 12/2011…no response. Braf neg. Just seems like everything has been like hitting a brick wall for him. Nothing seems to be going right. I have a good feeling about this trial and hope it is not another brick wall we reach…again. I have other patients telling me to look into Moffett but then we are closer to Sloan. Just thought I would reach out for advice.
Is anyone doing well on the Anti-PD1 at Sloan and your experience. Also the same for anyone on the trial at Moffett. Thank you again for listening and helping with some advice or words of wisdom and hope…..
My regards to all…..SusanNovember 11, 2012 at 1:08 pm #57462
Your brother is very lucky to have you as his advocate. Clinical trials have been the way for melanoma patients to finally get the important advanced treatments we so desperately need. You actually get better treatment since you are followed very closely for any signs of progression by a team. There are two PD1s out there that we know the most about: one by Bristol Myers Squibb and the other by Merck. Both are in the process of opening several trials in many locations. I will be posting the new Merck locations as soon as I get them. BMS just posted theirs on
http://www.clinicaltrials.gov: udy -037: A Study to Compare BMS-936558 to the Physician’s Choice of Either Dacarbazine or Carboplatin and Paclitaxel in Advanced Melanoma Patients That Have Progressed Following Anti-CTLA-4 Therapy http://www.clinicaltrials.gov/ct2/show/… e=2&rank=1
Study -066: Study of BMS-936558 vs. Dacarbazine in Untreated, Unresectable or Metastatic Melanoma
So as soon as we get the Merck listings, they will be here on our forum and may include other locations. So it is a good time to get PD1.
PD1 is very promising and we hope will bring about many more long term remissions. It may also be combined with IPI for a greater response. Please look back on our previous posts on PD1 as we’ve been discussing it for a year or so. let us know how things go with your brother.November 11, 2012 at 1:14 pm #57463
I should also mentiont there are PD1 trials in early stages by Glaxo Smith Kline, (amplimune)
and by Genentech.November 11, 2012 at 3:21 pm #57464AnonymousGuest
I can certainly recommend that trial at MSK. My wife Rachel was enrolled in it but was excluded due to two tiny brain mets discovered on the last pre-screening scan. She was going to be in the post-IPI “arm” of the study, which had a window of 4-12 weeks after the finish of IPI to start the PD-1. Talking with the MSK folks, they were quite excited by the BMS PD-1 but were also very excited about exploring combining it with IPI, either concurrently, or sequenced shortly after IPI. Since your brother is a fair distance out time wise from the IPI last year, they may let you do either “arm” of the trial…or neither.
If your brother is doing a chemo now, he’ll have to wait about 4 weeks to start any trial. In the mean time you can always forward his records and tumor tissue slides to MSK and get a consult with them as it’s best, of course, to talk to them (they may have something else or “just” PD-1 neat).
They are a great, caring team and just having him sit and talk with them will go a looooooong way to removing that “lab rat” mentality. In fact he may well come away with the feeling that the clinical trial folks, in general, are the dogs that are finally cornering this deadly rat.
BTW I need to echo what Catherine said. I cannot tell you, actually I can and will tell you, how blessed your brother is to have you by his side and advocating for him. There is no greater gift that you can give to him than a part of your life to help save his. Bless you Susan.
JeffNovember 12, 2012 at 1:40 pm #57465
Thank you Catherine. I appreciate your response and info. These trials are confusing. I did look at some and wonder if he already may not be a candidate…he has had temodor, abraxane, and carboplatin. I saw some trials don’t allow that many chemo regimens. Also, the ECOG status..he is probably 1 at most. Will start some calls. Thank you again !!! I am sure i will have more questions to ask….November 12, 2012 at 1:46 pm #57466 Jeff, your kind words are very thoughtful. I appreciate your response and the info. I have to start the ball rolling and make calls. I said to my post to Catherine, I am worried something will exclude him. Now I am worried about the HLA testing. It feels like matching that is like trying to win the lotto. Thank you again. Hope to hear fromyou again in the future….hope it will be when I say he is in and has a response.November 12, 2012 at 1:56 pm #57467 Jeff, Forgot to say….my thoughts and prayers to you and your wife.November 12, 2012 at 2:21 pm #57468alankravitzParticipant You might also take a look at the BMS Biomarker Clinical Trial, NCT 01621490.
There seems to be increasing competition between Merck and BMS that mainfests itself in the design of the trials. Unfortunately, there is still randomization to chemotherapies and, seemingly. no provision for crossover for trial articipants whose disease progresses on the comparator arms. I know that crossover weakens the the statistical analysis; however, in the case of anti-PD-1 therapy we also know it would save lives.
Keep the faith, you need it and know that it helps us all.
AlanNovember 12, 2012 at 3:07 pm #57469
I would be happy to help you personally by email:
email@example.com call us on the helpline: 866-463-6663 toll free. I assure you someone (me) answers these calls personally and can help with any confusion. About 50% of the population has the HLA, but you only need that for Weber’s trial as far as know and one specific one at Moffitt where there is a vaccine. The list of Merck trials should be announced next week and I will have it on the board as soon as I get it.
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