Tuesday, November 1, 2016

Udate on me and my ratties...from my 2 1/2 year, 2010 Opdivo/peptide vaccine trial at Moffitt - anti-PD1 as adjuvant

Here is the actual report, published 4 years after its start, in December of 2014, of the trial I and 32 other ratties participated in: C'est moi!!! Results from the 33 ratties in my Nivolumb/Opdivo trial...published!

My thoughts on same:  My Nivo (Opdivo) trial - first dose - 4 years ago 12/29/2010 - thoughts...

The last update I had, from September 2015:   Latest update on my Nivo/Opdivo study peeps and me...

The latest facts on me are these:  

158 months (13 YEARS!!!!) post my original melanoma diagnosis in 2003 at age 39
78 months Stage IV (more than 6 years!!!)
72 months NED (YEP! It is now 6 years since that nasty Halloween trick of melanoma in my right tonsil!)
70 months after starting nivo (Opdivo)
40 months (more than 3 years) since my last nivo infusion in June of 2013

I still work 12 hours shifts, run or elliptical 4-5 times a week, and do all my other crazy stuff.  I do STILL get occasional oral lesions to cheeks and tongue....though nothing nearly as bad as when I was on nivo.  I do still have occasional joint pain, similar to that which started in my trial....of course I'm 52 now...so....  I have had much fewer wheezing episodes since being off nivo...which I thinks speaks to the pneumonitis component that nivo was causing...despite my continuing asthma and exposure to sick critters.  My vitiligo remains unchanged.  Rashes are diminished, but crop up occasionally.

And now I've learned this:

Though plans for a visit to Weber in September were foiled by a schedule conflict, we were able to touch base with him via email.   Through that correspondence we were told:

"Especially glad to hear about the clean scans.  At this point, suggest yearly scans.  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!"

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!

And, thanks to the most awesome mouse I know....Edster!!!!  Here is a really cool review of immunotherapy, ipi, anti-PD1, ipi/nivo combo, immune related side effects, positive prognosis with rashes and vitiligo...the whole schmear...fo realz!!  By the Wizard Weber himself:  Great Immunotherapy for Melanoma Recap
(Sorry.  You will have to back the video up to the start.  Can't get the link to start it at the beginning.)

I cannot tell you how many times I have heard, "Weird!!!" during my office visits!  But....I'll take it! - c

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