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Myeloma Cure Talk broadcast focuses on emerging myeloma therapies

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Myeloma Cure Talk broadcast focuses on emerging myeloma therapies

Last night I was one of four multiple myeloma patient panel members that participated on Cure Talk’s Myeloma Cure Panel broadcast.  The group included fellow Floridian and host, Gary Petersen, Jack Aiello from Northern California and Cynthia Chmielewski from New Jersey.

We had an opportunity to question myeloma experts, Dr. Shaji Kumar, from the Mayo Clinic in Rochester, Minnesota, and Dr. Edward Faber, from the University of Nebraska Medical Center, about emerging myeloma therapies and their treatment philosophies.

Cure Talk’s programs are actually webcasts.  Up to 50 listeners are allowed to call-in and possibly ask questions, although there never seems to be enough time to get to more than one or two.

The sound quality continues to be a challenge.  Program Director, Priya Menon, handles everything live from India.  I’m amazed the technology works at all!

But although Priya can be difficult to hear and understand, sound clarity of guests and panel members isn’t too bad.  The broadcast is streamed live.  Callers, guests and panel members participate by phone.  Then a recorded copy–and Priya’s play by play blog account of the event–is available online, too.  This way you can listen to the hour broadcast when its convenient for you–or rely on me to post my thoughts and feelings about what just transpired.

Here’s a link if you would like to listen to the broadcast now:

Dr. Kumar spoke first.  Unfortunately, his time was interrupted when his phone connection was lost.  He completed his presentation after Dr. Faber took over 10 minutes into the broadcast.  Here’s an outline the doctors used if you would like to have it as you listen along:

Dr. KumarDr. Kumar:

–          IMiD/proteasome inhibitors

–          Combination of these drugs and maintenance

–          New drug aspects

–          MLN9708

Dr. FaberDr. Faber:

–          Robert Orlowski’s data with KSP inhibitor

–          Daratumumab (cd38 antibody) results

–          BTK inhibitors

–          BAFF-1 inhibitor

o   Escalating R after relapse from MPR-R

o   Thalidomide/lenalidomide combination data

o   Potential usefulness of cereblon


As we continue to debate the pros and cons of using an “incremental treatment approach” vs a “hit it hard up-front” approach, I felt it would be enlightening if I asked this:

“Doctors, do you believe in using an incremental treatment approach, or are you buying into the latest theory that you should hit newly diagnosed patients with everything you’ve got up-front?  In other words, do you save a drug like pomalidomide or carfilzomib to use in relapsed patients, or do you use them right away?  And if you do, what then?”

From listening to their presentations, I had already determined that both of these doctors hold conservative treatment philosophies.  I expected that from Dr. Kumar, an established Mayo Clinic specialist.  Generally speaking, Mayo lands on the conservative side of the treatment spectrum.  Likewise, Dr. Faber seems to treat his patients the same way.

What do I mean by a conservative treatment philosophy?

While not necessarily incremental, I would define it as using a two or three drug induction to help get the cancer under control, followed by the option of a single autologous (patient’s own stem cells) stem cell transplant, or possibly harvesting stem cells and then waiting.  Consolidation and maintenance therapies might then be used on a patient by patient basis.

Dr. Faber referred several times to “Doublet or triplets.”  By doublet, Dr. Faber was referring to using Revlimid and dexamethasone or Velcade and dexamethasone.  Triplet would be Revlimid, Velcade and dex (RVD) or possibly Velcade or Revlimid with dex and Cytoxan or Doxil.

So while Dr. Faber agrees that going for the deepest response early-on is desirable, his treatment regimens don’t really reflect that–at least as compared to the University of Arkansas Medical center’s (UAMS) approach.

Both doctors admitted that it is difficult to individualize treatment today.  But they were optimistic a day is coming soon when they won’t have to “guess” about which therapy to use with each myeloma patient.  Dr. Faber did address this specifically.   He feels doctors need a reliable marker that can help them determine how well each individual patient will respond.  Hard to argue with that!

Look.  We can all go round-and-round with this.  But I think these types of broadcasts are very instructive.  For example, this format allows specialists from different parts of the country to learn how others feel about things like when and if to transplant, or whether to use continual maintenance.

I know many UAMS patients think Total Therapy–hit myeloma really hard up-front using multiple drugs and tandem stem cell transplants–is the standard of care.  But on the contrary, our panel discussion illustrated how many treating physicians are still using an incremental approach.

I suppose starting with RVD falls somewhere in-between.  Yet I still consider that  incremental.  Patient’s induction is RVD.  The patient transplants or waits.  Goes on Revlimid maintenance continually, starts and stops or stops taking maintenance altogether until relapse.   At relapse, Velcade and dex is added back into the mix to knock myeloma back.  Sounds incremental to me!   By the way, what I’ve outlined above is still the medical standard of care.

That doesn’t make it better, right or wrong.  It simply highlights how long it takes to change things in the world of oncology—at least is seems that way in myeloma time!

The sooner researchers can determine how best to time a patients treatment the better!  Yes, we need new drugs.  The more the better!  But using what doctors already have available more efficiently can and will add years to a survivor’s life.

Neither doc ever answered my follow-up question about whether to save new drugs like Kyprolis and POMALYST (pomalidomide) for relapsed patients, other than to note that the FDA dictates that; both are only approved for use in relapsed patients.  But I know for a fact doctors are already starting to use Kyprolis “off label” for maintenance, and probably in recently diagnosed patients, too.

WHEW!  That’s a lot of information packed into an hour broadcast!  I’ve had a busy three days.  Hosting the educational seminar at Moffitt on Monday, listening to Dr. Anderson’s 90 minute recap of ASH on Tuesday and this month’s Myeloma Cure Panel broadcast last night.  Glad this isn’t a weekly gig.  Too bad I don’t get paid to do any of this.  Pretty exhausting hobby!  Know anyone hiring six year myeloma survivors facing a second relapse, needing a hip replacement, kyphoplasty and munches on oxycodone like candy?  HA!  Think I can use a nap!

Feel good and keep smiling!  Pat