Sunday, June 10, 2012

New trials for Melanoma NED patients....

...are almost non-existent!  While it is obvious that Stage IV melanoma patients with non-resectable disease are in immediate need of is equally clear to me that if you don't treat the Stage IV NED melanoma patients, they will soon join the crowd!  When I began the trial I am in...there was absolutely nothing else available to me.  And once my trial begins to head down its final stretch, there is very little out there for folks in my shoes.  Much of this deficit comes from the fact that when you treat me....what have you learned?  My results are hard to calculate....and hard for drug companies to sell.  I did not have measurable disease at the start, so no one can tout a grand success story of decreased or eradicated tumors that show up on scans one minute and recede in the next.  Additionally, there is no "standard of care" treatment option for NED patients other than interferon and you all know what I (as well as most of the entire melanoma research community) think of that by now.  SO.....what to do???  Unfortunately...most of the drug companies...who are (sadly) the main drivers of such research...say...not much.

Brent and I read of a trial that may be starting for Stage III, resected, offering arms of ipi vs interferon, with or without kinase inhibitors.  It seems rather unconscionable to me...but again, because there is no standard "adjunctive" treatment option other than interferon...they can get away with it. I am sorry that I know no other information on that trial.

However, Brent and I were told the following Friday:  Moffitt will be participating in a "300 patient, international, NED trial" that will be a double blind study with patients receiving either BMS anti-PD1 or "observation" with placebo.  This means that every three months you will have to have scans, and blood drawn, and infusions...but you may be getting the drug or not.  This is the shit of a phase three might get something...or you might get nothing.  The shit of phase one trials (like mine) is that people may be giving you poison that will make you sprout three heads, but at least you know you are getting it.  I don't know if these will be Stage III or only Stage IV NED patients.  I don't know when it will start. I don't know if all the patients will have to travel to Moffitt, or if Moffitt is only one of multiple centers that will be participating.  I wish I could give more information...but when we are there...we try to absorb as much as we can from those in the know....and sometimes it is so rapid fire that we come out with more questions than answers.  At any is something...and if you are interested, I would definitely recommend that you call Moffitt for additional information.

Wishing all of you my very best - c


  1. The lack of options for those in this situation is unacceptable! Unfortunately, I do see the conundrum it poses for researchers... :( So frustrating!

  2. Could I steal parts of this for my blog, please.

  3. Knowledge is power. Steal away!!!

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