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Black Swan Research Initiative (Part Three)

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Black Swan Research Initiative (Part Three)

Let me preface today’s post by admitting, I was a bit disappointed with the answers to our questions by the IMF’s Dr. Brian Durie, the creative mind behind Black Swan. I’m afraid I overloaded him with so many specific questions that he felt compelled to keep his answers general and brief.  After all, Dr. Durie is a very busy guy!

And to be fair, answers to a number of your questions are posted on the IMF/Black Swan’s website:

Here is the complete list of reader questions about Black Swan that I emailed to Dr. Durie this summer.  I asked the first one.  His answers are highlighted in BOLD:

Dr. Durie1)  Doctor, I understand that a major focus of Black Swan is to develop a more sensitive way to test for residual disease.  (MRD-Zero, the eradication of Minimal Residual Diesase) How will doing this help those of us that are already battling myeloma now?  Can MRD-Zero be achieved in a patient with relapsed multiple myeloma?

The tests for measuring minimal residual disease will be available for all myeloma patients, from those with early myeloma to those with relapsed myeloma.

2)  After reading Frequently Asked Questions About The International Myeloma Foundation’s BLACK SWAN RESEARCH INITIATIVE™ (BSRI™)  on the IMF website, Steve Cochran asks:

 If finding a cure is “not a competition” as they are saying here, then why are the IMF folks also saying some of their “research is proprietary” and thereby can’t be discussed at this time?

And for that matter, why can’t the IMF and similar research groups just go on over to the MMRF and join forces with the other “open source” researchers?  I mean, it’s all about the patient, isn’t?

It is absolutely all about myeloma patients—which is why collaboration among researchers is the lynchpin of the Black Swan Research Initiative. Patient organizations may differ in their approaches. However, the key is for investigators to collaborate and this occurs through the IMWG, as evidenced by the outcomes from the recent IMWG Summit Meeting in Stockholm.

3)  One of my readers, a researcher at Purdue University named Gary Blau, feels individualized dosing is an easily achievable way to improve patient quality of life and improve performance of the drugs doctors already have.  Gary and his colleagues have developed a way to discover the optimum dose – and when best to give it – for gabapentin and they are working on dexamethasone.  Cost would be minimal and testing only involves a few extra blood draws.  Any chance Black Swan might look at this type of thing, too, or only the “big stuff?”  Must be hard to stay focused with so many directions the group can go…

You said it! Our focus now is finding the pathway to reach MRD-Zero in myeloma patients. And to the extent that each patient’s myeloma is unique, we are looking at individualized approaches.

Now on to some technical questions.  The sophistication of myeloma blog readers is mind boggling!  Here goes:

EDITORS NOTE:  I’m sorry to say that Dr. Durie did not address any of these questions in his response.  He did write this as an explanation why he wasn’t more specific:

As the different steps and milestones for the Black Swan Research Initiative are reached, the details will be presented and discussed.  Fortunately, we have an aggressive timeline so we will be able to share updates with the myeloma community on a frequent and regular basis.

So if your questions aren’t answered on the Q/A page on Black Swan’s site, maybe they will be answered in time:

  • What is the specific name of the molecular level test called (AS0-PCR?).
  • What is MRD zero defined as on this molecular level test
  • What DNA probes will be used on this molecular level test to rule out myeloma given there are so many clones.
  •  On FCM what is the immunophenotypic (CD) profile they are looking for?

             CD38, CD56, CD19, CD45?

  • What is the  CD (immunophenotypic) profile that defines MRDzero?
  •  Which ones need to be negative and which need to be positive.
  • What antibodies will they screen for to make the test specific for myeloma.
  • How will the molecular level and FCM tests have to be in accordance for the outcome to be MRDzero?
  • While this is not on BSI, I would like to know what is the specific pathway for pomalidomide to be effective in lenalidomide refractory patients.  What pathway other than cereblon binding does pomalidomide use?  Dr. Durie has mentioned this several times without specifically stating what “other receptor” pomalidomide acts on.

I cut-things-off there.  I could have passed-along even more questions; you had a lot of them!

BS logoPersonally, while I’m excited about the project, I do have a number of concerns.  Will the project lose momentum once the group gets busy or hits a wall?  Once Black Swan establishes MRD-Zero as a clear path to a cure, will the IMF fund clinical trials specific to Black Swan?  For example, if the group decides that a combination of one or more stem cell transplants, bracketed by a specific combination of drugs gives patients the best chance of achieving a cure, will the group help fund and promote a study to confirm their hypothesis?

Like my readers, I could go on and on.  But I’m going to stop here and take this opportunity to thank Dr. Durie for his work with Black Swan.  I’m sure he would like to know all of the answers now, too.  It must be frustrating to have a clear vision in mind, knowing it will take years to implement.

Stay focused on the end-game, good doctor!  Keep your eyes on the ultimate prize; a cure!

Feel good and keep smiling!  Pat