Sunday, June 10, 2012

Melanoma Stage IV for 32 months, NED for 18...

We had a busy visit at Moffitt.  Labs were good.  LDH was the lowest it has ever been...for what that's worth...since even when I had tumors it was never particularly elevated...but low is good.  IV and blood draw accomplished easily by one of the CRU's great nurses!!!  Weber agreed with B and the local radiologist that my scans were clear. So, permission granted to continue treatment.

The News:
I have another full year to go in the MDX 1106/peptide trial.  Somehow, Brent and I had managed to get a bit confused, thinking the trial covered 2 years of therapy.  Instead, it entails 6 months of every 2 week anti-PD1 infusions combined with additional...two years of anti-PD1 infusions every 3 months, which means rather than completing those in December, I will not be done until a full year from now in June.  Don't know how we missed that, but...that's the real deal.

Weber categorized my status as a "long term non-recurring Stage IV" patient.  This is basically equivalent to being described as a "responder", but since I entered the trial as a resected patient "with no evidence of disease", and there is no definitive proof that my tumors shrank or disappeared,  I cannot be categorized any other way.  It was also clear that he anticipates that I will complete my remaining year of "maintenance therapy".  So...all in all...very positive.

In that vein, Weber spontaneously brought up what I would like to do, or possibly have the option to do, after my last year of therapy is completed.  He said that some of his patients had indicated that they would like to continue on BMS anti-PD1 infusions indefinitely.  He said that if they (or I) would like to do that, he would "go to bat for them".  He is not sure that BMS would agree to continue to supply the medication but that "they probably would".  IF they did agree, and the patient wanted to continue, one would have to sign a new trial amendment and continue in my same every 3 month pattern of scans, blood draws, followed by infusion. When asked what he thought would be best, he said that of course no one can know, but he found it hard to believe that after two and 1/2 years of medication, further benefit could be attained. Not sure what I think about all that, but I have another year to ponder on it.

He and Brent had a rather esoteric, scientific discussion of the meaning of a Kaplan-Meier curve that delineates the outcomes of untreated melanoma patients as well as one showing outcomes for melanoma patients treated with resection. The question being whether or not I have reached the plateau indicating conditional survival equivalent to that of a "normal" person.  (Well, right know I'm not going to fit into that!!! Sorry, just a joke...but when those two squirrels get together.....)  The issue being exactly WHEN that point occurs...Brent pushing for 2 years....(no vested interest here!!!)...and Weber leaning more towards 3.  Anyhow, clearly I have broken my prior pattern of a new "something" every 2 seconds, so that is good.  And....I have clearly outlived my "expected" outcome given brain mets, etc.  And...the longer I can keep that pattern, the more likely that:  a) I have, in fact, responded to treatment, and b) that response is probably durable.  Of course, my cynical side says...."Experts told me that someone with my size and depth of initial lesion would NEVER have a positive node...but I did.  They said someone with my microscopic bit of melanoma within that node would NEVER develop additional disease...but I did.  They were adamant that after 5 years I was from worry of recurrence...they were wrong."  It's not that I am unhappy with this data.  It is not that I don't believe the numbers...they are real, and for the moment they are on my side.  It's just that there are lies, damn lies, and statistics.  I have been burned before.

Regarding the other peeps in my trial (as best we could ascertain from various take this info with caution):  The folks in my 1mg/kg group continue to do well, losing no more patients other than the two we lost early on.  It appears that two patients in the 3mg/kg group progressed, one with a skin lesion and another with a tumor in the colon.  And in the 10mg/kg group, one withdrew due to inability to tolerate leg pain related to the vaccine injection sites, but does continue to receive anti-PD1 alone.  It seems that 1 or 2 other patients have progressed in that cohort as well.  Take away message from well as other data coming out regarding anti-PD1....response occurs at all levels of dosage and larger doses do not seem to illicit improved response least thus far.

TWO OTHER PIECES OF follow!  Take a break if your eyes are glazing over!!!! - c


  1. I'm sorry the extension to June brings more treatment and trips to endure, but it will bring more time to ensure the "long term non-recurring Stage IV" status. I do love that! I also REALLY love the possible option to continue infusions!==love Kik

  2. This was the most info packed trip yet!