Tuesday, April 8, 2014

And yet more evidence of plateau (cure) from another unrelated source...

A friend a fellow MM patient DH alerted me to an interesting article just published in an alternative means of testing for Minimal Residual Disease called Deep Gene Sequencing.  Evidently it is more sensitive than MFC tests for MRD.  The MFC test reports that I have "<.01%" (which means it cannot detect MRD with greater accuracy than 1 in 10,000 cells).  Evidently Deep Gene Sequencing is accurate to 1 in 1,000,000.   Not sure how I sign up for this!

It's not perfect, though, for the same reasons other MRD tests that rely on bone marrow are not.  MM cells are not evenly distributed throughout the bone marrow -- one could have negative bone marrow in one spot and find residual disease elsewhere.  A test needs to rely on circulating cells (i.e., in the blood).  This is still being worked on.

Since the test is imperfect, there were relapses among patients who were MRD negative -- though not among all of them.  And here is where it gets interesting:

No matter whether patients were MRD negative or not, after approximately 80 months, NOBODY EXPERIENCED RECURRENCE.   That's right, another plateau.

The full article, from the Myeloma Beacon, is here.

So in the last week, we've seen two studies -- one in Italy and this one in Spain -- demonstrate that after 8-10 years, the disease rarely if ever comes back.


  1. Thank you Nick. It's these types of studies that keep the light of hope flickering. Dr. Tricot, in Nov 07 when he paid me a visit as his new patient, that there was a 50% chance he would cure me. I said, you mean keep me around long enough to see a cure found? He said no, "I mean cure you." I trust that man with my life to this day and get a smile each time something he has done or said to me in the past is discovered by others. Thank you for staying on point...I appreciate your efforts more than you know. Out here......

  2. Hi Nick,

    I was diagnosed with mm in Jan 2014. I suffered for over a year, possibly as far back as June 2012 I now think, from lesions, but especially since April 2013, what I thought were injuries. I've been in incredible pain of course, but no need for surgery or chemo on my bones, not a lot of activity in the spine, more involvement in my arms and shoulder girdles.

    In any case, I am being treated at Dana Farber and am in a clinical trial. I am mid-way through my 3rd cycle of RVD with good results thus far.

    My situation is that I have been too susceptible emotionally to do much research. I am just starting to come out of my shock, though the Dex causes me to be very emotionally labile. YUCK!

    I am going to have my stem cells harvested after this 3rd chemo cycle. I would love to hear more about this and your input and ASCT as well....

    Again, perhaps there is a way I could write to you privately or call you or speak directly.

    Thank you, Katherine

  3. Nick, thank you for writing this blog. I am newly diagnosed, 50 yo. What have you heard of Kyprolis as a first line therapy, there is a clinical trial offered in NYC? WHat is your view on clinical trials in general?

    Many thanks,


  4. @Katherine, I sent you a message.

    @Adrian/Dino, Kyprolis is a highly effective drug that likely plays the same type of role in combination therapy as Velcade does, but with greater effectiveness.

    It depends on your philosophy and there are two things I'd probably point out. The first is whether or not you want a "Total Therapy" type approach as I had -- if you do, then the choice of Kyprolis is not as important as the choice of tandem transplants with aggressive treatment before and after. If you do NOT, then the second philosophical question comes into play, which is we know Velcade works in many cases, and Kyprolis works in many cases where Velcade does or (or where it has ceased to work). So one approach might be to use Velcade until that no longer works, and then switch to Kyprolis.

    Part of that decision might be informed by the specifics of your disease biology -- if you have a flavor of the disease that we know is not responsive to Velcade, then the decision as to whether (or when) to use Kyprolis would be considered differently than would be the case if you had disease characteristics consistent with Myeloma that responds well to Velcade.

    As for clinical trials in general, I'm all for them. We know that standard treatment for the disease is unlikely to cure it. At 50 years old, I'd want a crack at curing it or knocking it into deep remission for many years. You'll only get that with a clinical trial -- whether it be trying new types of therapy (e.g., immunotherapy), new versions of drugs (e.g., Kyprolis) or novel approaches (Total Therapy).

    I hope this helps, Dino!

    1. Dear Nick,

      Congratulations for the best informed and professional MMY blogs I could find. Would it be possible to have a conversation or Private email exchange with you? After 2 cycles of RVD, and 1 of VD, it seems the response was modest band I am weighing next steps.

      Many thanks,


  5. thank you very much, Nick! do you know anyone who was treated with Kyprolis?

    with all my gratitude,