BB’s phone message, KA’s advice and sub-Q velcade

Some quick and sundry updates here.

First, although I had pried the information from his team last Friday, BB himself called me on Monday (I don’t know why but I didn’t see the phone “ringing” or vibrating).   I was hoping to actually embed the audio here but I can’t do it at this time (will do my best since the cadence is what makes this humorous).   Anyhow, the voicemail is:

“Hey Nick, this is Bart.  All studies are good and negative.  Okay?  Great news.  Calm down.  Thanks, bye.”

I feel like saying, in full Walter Sobchek mode, “I’m perfectly calm, dude…calmer than you are.”   And I am, in fact, pretty calm these days.

So the plan at present is to continue on single agent Velcade in a ~20% higher dose (1.5mg/m2) until those damn pits in my spine heal up, with a check-up (including bone marrow, PET, MRI, etc.) in six months’ time and cancer markers run every two weeks from blood.

I spoke with KA yesterday on a phone consult to validate this approach.  It was a very pleasant conversation, the highlights of which were:

  • He agrees that I should remain on something to ensure the full adherence to BB’s approach with its hope for cure
  • He agrees that Revlimid should be discontinued since I’ve had a ton of alkalyting agents (e.g., platinum, adriamycin, cytoxan, etoposide, melphalan in high dose) that alter DNA and it is in combination with these alkalyting agents that Revlimid use is most likely to lead to myelodysplasia and, potentially, Leukemia
  • He thinks Interferon wouldn’t do anything other than make me feel like I have the flu constantly
  • He thinks a proteasome inhibitor (like Velcade) could be a long-term option for me (as in potentially forever) and that in a couple of years there is likely to be an oral version (i.e., a pill) that would make it easier to take.  I think he doesn’t full subscribe to Bart’s confidence in a cure provided the MRI is clean.  We’ll see — this stuff remains poison and I don’t want to be on it forever.
  • He “wouldn’t sell the house simply because of the MYC gene.”  While it is no longer over-expressed, I still wanted KA’s thoughts on it.  He said that “with respect, [BB] is probably guessing about its responsibility for the remission loss” and I’m sure BB might agree, but I don’t know how extensive the regression studies are so it might be a very educated guess — or it could be statistically proven.  At any rate, the fact that it is normally expressed gives me some comfort — particularly when combined with BB’s voicemail.  I asked KA what maintenance drugs target MYC and he said “a few years ago, I’d have said none…but it turns out they all do.  Revlimid is particularly effective.”  So perhaps Revlimid is what caused the MYC to normalize over the last three years of therapy.
  • He noted that over time, the bones should resolve and the heterogenous marrow should probably even become homogenous but that he wouldn’t use the latter as a requirement of remission (he wouldn’t say cure, obviously).  He said that PET scans were extremely sensitive and the marrow funkiness could be caused by many things (e.g., an inflammation).  I didn’t bother to mince words and point out that we were talking MRI since clearly Arkansas and Dana Farber diverge on treatment long before this point.
I thought it was good that one of the world’s foremost experts on novel drugs (versus transplants) essentially concurred with BB at this point.  I’m going to continue with a couple more opinions because one other common point of commentary between BB and KA was that “we’re in uncharted water here” insofar as there are no studies to point to.  So it can’t hurt to get a couple more viewpoints to corroborate the approach.  Next up is BD.