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July 10, 2013 at 2:16 am #21437tsharpe2Participant
For anyone following along on the philly.com Patient #1 blog you already know this, but thought I would post here too. After progression following Ipi + TIL at Moffitt, I enrolled in Merck’s PD-1 trial for MK-3475 (now lambrolizumab) at Holy Cross Hospital in Fort Lauderdale – thanks Catherine!! Despite the downshift from a major cancer center to a small one, it looks like the immunotherapy is doing it’s thing. At my first (12 week) scan, the five target tumors decreased by 46%! We’re nowhere near out of the woods yet, but that initial regression was a huge sigh of relief for us.
Wondering, for those who are further along with lambrolizumab or nivolumab, if you had a good initial response, what happened next. Our doctors weren’t able to tell us *anything* (the downside of the small local clinic – they REALLY aren’t Moffitt) so hoping someone here has a little more anecdotal knowledge they could share.
Blogs about the results are here, if anyone cares to read:
http://www.philly.com/philly/blogs/patient1/Exhaling-after-verifying-the-scan-results.html ” class=”bbcode_url”> http://www.philly.com/philly/blogs/patient1/Exhaling-after-verifying-the-scan-results.html
Any PD-1 questions feel free to fire away!July 10, 2013 at 2:29 am #61757Celeste MorrisParticipant
That’s wonderful. I wish you continued improvement!!
I finished 2 1/2 years of anti-PD1 (Nivolumab) at Moffitt in their NED arm, after being diagnosed with brain, lung and tonsilar mets, which were all removed surgically (brain with SRS), in 2010. I started the trial in December of that year and remain NED today. My final follow-up at Moffitt (no meds) will be in September.
My story and all the data from that trial…including the arm with disease….is on my blog…Chaotically precise…..
I wish you the very best.
CelesteJuly 10, 2013 at 7:13 am #61758BrendanParticipant
Great news on the 46%! Many in my family and my friends read your blog. Thanks for taking your time to share your experience, spread the word, and help us all. Just be smart and save your optimism for PD-1 . . . don’t let the Phils suck you in.
BrendanJuly 10, 2013 at 2:07 pm #61759NYKarenParticipant
TJ and Celeste,
I’m so happy for both of you.
I had Gamma Knife on 11 brain mets (it only looked like 4 going in–the doc said not to be surprised if a FEW more showed up) last week, and I am very anxiously awaiting follow up MRI on 7/30 to clear me for Merck PD1 trial.
You both give me hope, especially as my onc gave me the same advice about brain mets as I always others about melanoma: stay off the Internet!
Thanks and continued good results to you both!
KarenJuly 10, 2013 at 4:02 pm #61760gostanParticipant
I have followed your story on your blog and this is great news. Here is hoping that the mets continue to shrink as your treatments continue. I have found it interesting that your doctors still allow you to have some alcoholic adult beverages as I was advised at Dana Farber that there could be no alcoholic beverages during the BMS phase 2 ipi/anti-pd1 trial because alcohol reduces ones immune system. Has anybody else been given this directive?July 10, 2013 at 5:33 pm #61761Catherine PooleKeymaster
You make a good point about alcohol consumption. One oncologist told me as little as one glass of wine a day increases a woman’s chance of breast cancer. I was also told that it does lower your immune system.July 10, 2013 at 7:22 pm #61762gostanParticipant Catherine
I have sworn off the alcohol even though my clinical trial has been delayed while I wait for my brain rescan. It has been a difficult couple of months. No booze
and waiting for 6 weeks to pass in order to have another brain MRI after SRS. It certainly makes sense that alcohol would affect ones immune system. Heck, if this is really true, TJ might have already got to a 50% reduction, but I am sure that he was not given this piece of information about alcohol. TJ, maybe when we are both NED, I will come to Florida and buy you a drink.July 10, 2013 at 8:58 pm #61763Catherine PooleKeymaster I found this study showing this effect: http://pubs.niaaa.nih.gov/publications/arh40/97-108.htm
Even in moderation, it hasn’t been shown to be good for us! The wine industry really pushed the cardio benefits, but grape juice had the same effect.July 16, 2013 at 7:51 am #61764DianapParticipant
I wished I hadn’t of stayed on the forum and read this one! For awhile I went completely off wine, however, recently I have one or two glasses every now and then. I think all taken into account sometimes we need a helping hand to relieve the stressful situation we have been placed in. Stress itself can be very dangerous to a person’s health. So weighing up the pros and cons I have decided to occasionally treat myself to a glass of wine, whilst continuing to eat healthily, taking as much exercise as possible and also laughing a lot
Lets hope this is good enough for my immune system to carry on working!
Best wishes to all
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