Back in 2010 I was one of first 10 folks who made up the 33 melanoma participants in the Stage IV NED arm of a nivolumab (now called Opdivo) with peptide vaccines (They did nothing!!! Here's that story: Peptide vaccines do NOT trigger effective immune reponse to melanoma!!!! Of mice and men....) phase 1 trial. Our NED arm was compared to folks with active disease. Ten NED peeps, and 10 with active disease, were given Nivo at 1mg/kg. Later, since we didn't die or grow three heads, 10 more NED, 10 more with active disease were treated with nivo at 3mg/kg. Finally, 10 more were added to each arm , this time at 10 mg/kg. We were all treated until progression or significant side effects, for a max of 2 1/2 years.
Here are the results, published in 2014, of my NED arm: C'est moi!!! Results from the 33 ratties in my Nivolumb/Opdivo trial...published!
Here is a related post: My Nivo (Opdivo) trial - first dose - 4 years ago 12/29/2010 - thoughts...
That trial morphed in all sorts of directions! Arms were added that stopped giving the vaccines after we learned they were worthless. Important in that those peeps got to avoid the torture of the vaccines and in that it opened the trial to many more folks as the HLA typing required for the vaccines no longer limited participation. Arms were created for folks who had already been treated with ipi. Additional arms gave the ipi/nivo combo to folks with active disease as well as those who were NED.
Having recently completed my annual scans, I duly contacted the person still managing the trial at Moffitt along with Dr. Weber and gave them the results. Hell, if I'm gonna be a rattie....I want the data to be followed!!!!!!!!!!!!!!!
The latest data I had was this from 2016: Udate on me and my ratties...from my 2 1/2 year, 2010 Opdivo/peptide vaccine trial at Moffitt - anti-PD1 as adjuvant. where I quoted: The tote is that [there were] only 7 deaths in 33 patients with no deaths this year. Only 2 deaths in the 40 subsequent patients. Great record!"
And wrote this: So there you have it, folks. From the wizard himself. These were 73 Stage IV melanoma patients, rendered NED via radiation and surgery, then treated with nivolumab (Opdivo). Though we have sadly lost 9 of our tribe of ratties, many of us have now lived 6 years post that diagnosis. Way past our previously expected shelf life! Anti-PD1 products SHOULD be available to Stage III/IV NED patients, should they wish to use it. We ratties have fought to prove its value!
I asked for any up-dated info on my rattie peeps from the manager at Moffitt. Don't know if that request was lost in translation, or if there just hasn't been any more tabulated, but the following is what she sent me:
Adjuvant nivolumab (NIVO) plus ipilimumab (IPI) for resected high-risk stages IIIC/IV melanoma (MEL).
P.S. Will post any updated data specific to my ratties if I get it. - c