Monday, March 25, 2013

Test results: good, but staying the course

I'm sure you have been waiting with bated breath for the update here...heh heh.  :)

Seriously, though, particularly for a couple of family members I'm sorry I didn't post an update yet.  Needed a little time to relax after four days of testing and long flights in both directions.  It's more work than it sounds like to walk around a hospital, going from tube to tube (MRI, PET/CT, etc.) and getting poked and prodded.

Here are the key results:

* MRI shows the same damn pits in my spine plus 1 cm lesion in my pelvis which I had not noted on previous MRIs.  Except this is the site from which the fine needle aspiration was done six months ago, so I suppose I should have recognized that much, at least.  In any case, that FNA was negative for myeloma so it is BB's opinion that these pits are "shadows" of former activity.  Nonetheless, he wants to see me continue on therapy until they have resolved.

* PET is negative (that's good) with essentially stable uptake of the sugary goop that I have to drink.  We could call that FDG-avidity or SUV (something uptake value, not sports utility vehicle) but Uptake of Sugary Goop will do for now.  In any case, this metric was 1.6 before in one area of my spine and was 1.5 on this test -- anything in this range is not considered an issue.  My original PET had an uptake of 2.4, and after a week of therapy during which all active focal lesions were suppressed, it went down to 2.2.   So anything under 2.0 is fine and dandy, I think, although these metrics are really more valuable in relation to each other, I think.   These numbers refer to metabolic activity -- the degree to which sugar-starved cells go nuts for the sugar.  So it's hard to directly relate them to cancer, per se, other than by noting areas which are abnormally active given baseline numbers.   When I was originally diagnosed, BB's right-hand BJ told me that my cells were doing the tango but not yet doing the Watusi.  This analogy is the qualitative equivalent of all these 2.4, 2.2, etc. numbers.  In any case, the dance hall has been closed down for some time now and the continued stability of the PET is a good confirmatory sign.

* Standard bone marrow biopsy: negative for plasma cell myeloma (whooppee!!) and negative for myelodysplasia (whooppee again!).  I don't have the results right in front of me but it also occurred to me that the MRI showed more homogenous marrow than before, which I think is good.  That means the recovery is more widespread.   I should add, though, that unlike previous BMBs, this one hurt like the dickens when I came out of my propofol-fog.  They had to give me 25mg of Fentanyl (superstrong synthetic morphine) and that barely took the edge off it.  Several days later, it's still sore.   As this was unusual, I asked the nurse in the recovery room to summon the nurse who did the work (a rather...well, let's say densely-proportioned woman) so I could find out what the issue was.  She told me that I had exceptionally strong bones and she had to use a particular amount of elbow grease to hammer the instrument into my hip.  Ouch.  I can thank the Zometa (the bone strengthening agent which I received several times via infusion) for that, I suppose.  But I wish it had done an effective job of helping the stupid pits in my spine fell in instead of just making my hip bone resistant to the hammer and chisel that they used on me!

* Back to blood for moment, and keeping with the theme of recovery: blood work showed rising levels of IgA and IgM (these are immunoglobulins -- cells in the immune system -- that help fight off infection) as well as IgG.  IgG was where my problems lay...the normal immunoglobulins were being buried beneath a tidal wave of monoclonal protein (malfunctioning IgG cells).   The Revlimid that I was on intentionally suppressed these cells in order to ensure there was minimal opportunity for the cancer to multiply.  Now that I'm off Revlimid, the immune system is beginning to return to normal operations.  It's still suppressed, but it's coming back to normal levels and that's a good thing as well.  At this rate, in another six months I can start thinking about getting reimmunized and also weaning myself off Acyclovir, the pill that keeps away the virus responsible for Shingles.  I've heard it's also given out like candy to the casts of all these MTV reality shows since it also wards off other manifestations of that same virus (cough Herpes cough cough).

* Most intriguingly, a new test for Minimal Residual Disease was performed.  This requires its own post with background information in order for it to make sense to y'all (have I been in Arkansas too long?)    Rather than make you wait for me to explain it, though, I'll just say that the test is far more sensitive than any other tests they have done.  One can be in complete remission according to convention tests (including Immunofixation and bone marrow) and still have 1 in 10,000 cancer cells.  The new test is accurate to up to 1 in 6,000,000 cells.   The bone marrow pull that was done for mine contained a hair under 1.5 mil cells.  The lowest designation is "<.01% myeloma cells" (they don't do "zero" simply because the pathologist wants to cover his booty).   Happily, I received this designation.  That means out of the 1.5 mil cells, I had less than 150 (and probably 0) myeloma cells.  This is enough, per BB's dictation, to qualify me for the "strictest definition of complete remission" which is great news!

* Now, to temper that...this is a new test and while they've been collecting data like mad over the last few months with it, BB told me that it's a nightmare to try to analyze it and they have to get things in order so that they can process it and determine exactly how significant it is.  Do people that lose remission ever have MRD of 0?  If they do, then it's a temporary metric.  On the other hand, if those with an MRD of 0 have experienced no recurrence, then it could be a more significant marker.  We wait and see, but for now, it's great.

The upshot: those pits in my spine are still a disturbing sign, and coupled with the lower-than-previously-thought cure fraction (recall a few posts ago) we need to keep up the assault so any remaining myeloma cells in those pits die off and those lesions fully resolve.  However, BB felt good enough about the tests in general (as well as the normal expression of the MYC gene from six months ago) that he was comfortable reducing my weekly Velcade from 1.5mg/m2 to 1.0mg/m2, which is the "normal" dose.  This should hopefully help with some of the GI pain, allopecia and other side effects.

On that topic, my fellow traveler JH happened to be in Little Rock and I had a great dinner with him and his father, who is a physician with an emphasis in hair loss (in addition to being a terrific guy).  He was kind enough to take a peek at the crown of my head and we collectively concluded that (1) I'm never going band, (2) I'm likely experience a normal pattern of hair thinning, and (3) it's possible that the Velcade has accelerated this.  Since the hair thickened when I elected to stop Velcade for a month, I think #3 is pretty likely.  We'll see how well it responds to a reduction in dose.

One last random comment that may be of interest to other patients.  The 80-gene test (or Gene Array) that is done on bone marrow at UAMS has many different characteristics that combine to form different "subtypes" of Myeloma.  There are maybe two dozen of these that help define the particular manifestation of MM in a given patient.  For example, two of my characteristics were hyperdiploid (this is a good means there are too many chromosomes instead of too few) and "Proliferation Subtype" (this is a bad sign, and means what we would surmise it does).  The high MYC gene is or was probably one of the contributors to this.

Anyhow, when looking simply at the proliferation index (a metric of this proliferation factor) the cut off for high risk disease versus low risk is 10.0.   Note this is not the sole factor contributing to high risk disease.   At any rate, when I showed up, mine was close to 10 but below it (I forget the precise number but it was >1 and <10 6.5="" after="" class="goog-spellcheck-word" hours="" let="" nbsp="" s="" say="" so="" span="" style="background-attachment: initial; background-clip: initial; background-color: yellow; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial;">Velcade
administration, it crept up to 10.3 or so.   Not good.   But a week later after a test dose of Melphalan, it was -6.0, and it stayed low in subsequent tests.   So Bart thought it was interesting that my own particular case showed an increase in this followed by big-time suppression and he asked his statistician to consider looking at this trend as a prognostic factor in other patients.
There's much more to report but I've gotta get to work here -- so I'll provide an additional update in the coming days.

Bottom line: yours truly is doing well, continuing therapy, and thankful for my clinical and therapeutic team as well as all of you!


  1. Congrats on your results. :) No one is more thorough in testing and explanations than you. Keep it up!

  2. I came across your blog while doing research. My step father has been battling this disease for over a year now and it is HORRIBLE. I cannot thank you enough for writing this. It has been so helpful and given me such hope. Although he is older than you and his cancer was detected at the latest stage...he underwent a bone marrow transplant in July and is feeling good but we now have an added issue of possible breast cancer..........I am sort of losing faith in the doctors here and the information you have provided is unbelievable. I am only up to February of 2009 but came here to read your latest post and to comment......This chronicle of your journey is amazing. Thank you SO MUCH.