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Friday, November 1, 2013

Richardson's Talk Radio Interview

While I was away last week, I missed Dr. Richardson's blog talk radio panel discussion.  Fortunately, I was able to access it when I got back and it did not disappoint.  He clearly established why he is one of the preeminent MM specialists in the world!  He addressed the question of when or if to do stem cell transplants in very direct and compelling terms.  He also addressed a number of related issues, such as consolidation and/or maintenance therapy after transplant.  For anyone who is interested in the entire episode, here is a link:

One of the major contributing factors to my decision to have an early ASTC vs. waiting until first relapse was Paul's reference to Dr. Polumbo's research from Torino, Italy, showing some benefit for early transplant vs. waiting until first relapse.  I blogged about that visit with Richardson on December 29, 2011:  yesterday-was-very-good-day-at-dfci.  Now, almost two years later, he still refers to that study as being relevant.  That's good news, as there have not yet been any data to contradict that presumption, although clinical trials are still underway to answer that question.  In my mind, the answers may never be definitive, and either choice may be fine.  In any case, I'm happy I made the decision I did, and I certainly can't complain as I am still in remission a year and a half later.

On the issue of consolidation and maintenance therapy, Dr. Richardson strongly recommended at least following a maintenance regimen after a transplant or even after successful initial drug therapy.  While all studies show a Progression Free Survival (PFS) benefit of maintenance (usually Revlimid), some studies don't show any Overall Survival (OS) benefit, which of course is the bottom line.  Paul suggested that the reason is that many studies only continued maintenance for 2 years and then discontinued it.  He reasons that this is a mistake.  A Polumbo study showed OS benefits for maintenance until first relapse.  Paul's take is that 2 years isn't long enough.  Revlimid has a slight risk of inducing a secondary cancer, but that risk is almost always in the first 2 years.  Why take the risk of the secondary cancer without continuing the therapy after the risk is no longer a factor?

Here's the thing. Unlike most cancers, MM is a cytogenetically active disease, where individual patients undergo mutations of the monoclonal proteins over time.  I have blogged about this in the past.  High-risk patients, such as myself, are even more prone to mutations that will create another monoclonal spike, which accounts for our more pessimistic prognoses.  Continuous treatment with an IMID (Immunomodulatory Drug) , such as Revlimid, helps keep these mutated clones under control.  Especially after a stem cell transplant, Revlimid helps the new immune system keep an active eye on these mutations as they occur and keep them at bay. This makes a lot of sense to me.

Some have argued that by continuing to give maintenance therapy over a long period of time, one can become resistant (refractory) and it won't work anymore.  That used to be a big problem when there were few options to replace the resistant drug.  But fortunately that's not the case these days. For example, the IMID Pomalyst has now been approved by the FDA for relapsed MM, which can substitute for Revlimid. Yay!  Now I don't have to worry that if Rev someday stops working, I have no other options.

I am currently on a clinical trial, which involves continuing my Rev maintenance therapy for 3 years.  If I am fortunate enough to still be in remission at the end of that trial, I will have a decision to make about whether to stop treatment all together or continue on some maintenance therapy.  That decision is a long way off, and I hope that all the ongoing research will give me good insight as to what path I should take going forward.  Right now, I just hope that is a decision I get to make.

I have other issues to blog about, including more on the Lyme Disease connection and other potential MM links, but I'll put that off until another day.  I have an appointment with Dr. Richardson on Monday.  I may have something to report about on that.


  1. Bill, my husband (Big EZ) has been on Rev for 3 years now following his stem cell transplant in August of 2010. Our oncologist at Duke (who is Italian by the way) and our local oncologist in Raleigh, are in agreement that EZ should remain on Rev until time of progression, if his body continues to tolerate it as well as it has. Sounds like both with the transplant and maintenance questions, we are on the same page! Thanks for the link and insight! Wishing you continued remission and good health!

  2. Thanks, Linda. I'm glad Big EZ is still doing well. That's encouraging to me that he has been in remission for three years now. We're both fortunate to have received the right treatment at the right time. Good luck!