Monday, March 18, 2013

Greetings from Little Rock

Boy, is it cold here...and rainy.  I'm currently hunkered down in the 8th floor of the cancer center, which is where the entire Myeloma team moved about six or eight months ago.  They've got a couple of computers here so I thought I would avail myself of the Internet connection and update you folks.

There's not that much to report just yet, other than the blood draw went off without a hitch for once (this means they knew to expect me on the 4th floor at the infusion center rather than at the blood lab on the 1st floor).  I had found the little topical freezing spray that my local oncology nurse had given me and a little spritz of that led to a painless port access.  I came back an hour later for a lab printout and everything that's back fromt he labs looks good -- the cancer markers will take another day or so but I'm anticipating everything will be consistent with complete remission.

The PET machine was out of service so my 9:30AM PET scan has been rescheduled.  They gave me the choice of 5:30PM today or 5AM tomorrow morning.  Astute readers will likely guess that I chose the former option.  Still being on West Coast time, even this morning's 7AM wakeup call seemed brutally early.  4AM is not in the cards.

I briefly visited with the irrepressible BJ, BB's right hand.  The visit was enough to answer a couple of questions I had about a new test, the Minimal Residual Disease test which is being done in conjunction with a group in Salamanca, Spain.

The link below addresses a study wherein this test was used to identify those "high risk" myeloma patients that lost remission versus those who did not.  I've not read this carefully enough to paraphrase it here but perhaps I'll do so at some point soon.

The second link talks about which of the two tests is more accurate, and what a typical measurement is.  The lowest measure was .001%, or 1 cancer cell in 100000.  The median was 14 cancer cells in 100000 and the high was 1100 cancer cells in 100000.  Notably, everybody in the study was in complete remission.  So some of us with complete remission could still have 1 cancer cell in 1000 cells.

In this study, they also establish the threshold of "minimal residual disease" being 10 cancer cells in 100000 (.01% cancer cells).  It seems like a subjective threshold, clearly, but it does serve a comparative purpose for test sensitivity.

I was told by BJ that the MRD test at MIRT is sensitive enough to detect one cancer cell in 6,000,000.  It's a bone marrow test using some type of flow cytometry but I recall BB telling me something about an "8-way color array" (this is almost certainly wrong...consider it a placeholder, perhaps referring to the "multiparameter flow cytometry" that the first link above mentions).  In any event, I shall be paying keen attention to the results of that test.

I'm off to the next appointment.  More when events merit and time permits.


  1. Hi Nick, check out the International Myeloma Foundations Black Swan Initiative on their site. It will explain the push to use MRD techniques to define cure, etc. My doctor at the NIH is one of five on the committee. Good luck. Terry

  2. Hi Nick - my name is Cheryl Parrish - i came upon this and joined your blog. feel free to join mine too.
    i was hit with MM in 1995 and underwent tandem stem cell transplants and had five years of interferon and 12 years of zometa - i have been in complete remission all these years - a long story - march 1, 2013, my labs showed .41 protein - scary -? is it back? i don't know for sure. I had bone marrow biopsy last Thursday and Friday the preliminary results show no evidence of MM in my bone marrow - final test results should be in this week - I look forward to getting to know you and let's kick this disease! i am not racing mountain bikes, after my femur broke in 2009 and i stopped zometa -

  3. Terry - thanks very much for posting that link! It's been underreported but the IMF is now acknowledging a cure fraction from older treatment, which presumably will only have increased over time with the use of novel agents. This is pretty remarkable and not to be underestimated -- the IMF now agrees that Myeloma is curable and that it's a question of determining who among us are the "black swans." This is big news! I was fortunate to have had two consults with Dr. Durie and I found him to be very measured, even-handed and calm. For him to be excited about this is very good news for all of us.

    Cheryl - thank you for your post and for visiting me here. I will sign up for your blog as well. If you had no M spike for 12 years but now there is one, it may be back...but there have been so many advances in the last 12 years that it's almost a certainty that you will get back into remission and remain there for a long time. Where are you being treated?

  4. Putting a blood cancer5k race together in Littl Rock. Would love to have you involved.
    Colin Hall