Monday, January 27, 2014

Big week for tests coming up

So next week is a little more than the usual "poke 'n' prod" as I've taken to calling it.

To sum up where I am these days, at the risk of repeating material I've presented over the past several months:

* I have had a signature in my blood in the past, which is no longer present under LA lab tests but was present under Arkansas labs even when not present in LA labs, which is either a sign of an immune system rebuilding itself or a sign of disease return.

* Other lab tests would point in the direction of good news, but BB and team have not seen this particular signature before -- or at least don't know what to make of it.  This is in contrast to research from Mayo.  And the uncertainty is troubling to me, since BB sees more of this than Mayo and treats more aggressively than them and thus would likely see more evidence of profound disease suppression / eradication than they would.

* I have been waiting for more than two years for resolution of lingering spots in my spine that used to be hot spots for cancer but have been dormant for some time.  Several others formerly active lesions in my body have gone away completely.  It's interesting that most doctors don't believe these lesions resolve.  My doctor believes they do.  And they have in me.  Which makes me feel like my confidence in my doctor -- iconoclastic though he may be in some respects -- we well placed.

* If my disease comes back after the treatment I've been through, it may likely come back in an aggressive form which would have dire implications.

Next week, then, we'll have the usual complements of tests:  PET/CT, MRI, blood work, bone marrow biopsy, etc.  I'll also have the fairly recently introduced test for minimal residual disease, which tests literally millions of cells rather than the 40 that are typically looked at in bone marrow.

However, in addition to this, if the signature remains in my blood, we will try to devise a means of comparing that with the original protein.  This may not be possible, however, as I am told that a precise comparison requires bone marrow and my bone marrow is currently clean.  If I have Myeloma in my bone marrow, then we have our answer and it is not a good one.    If I don't, then they would need to compare my current blood against a sample that was originally taken (I think) and they may not be able to do this.

The other non-standard test they are doing are fine needle aspirations of the remaining lesions in my spine.  These are essentially precisely targeted bone marrow biopsies of the exact spots that used to be active for cancer.  It is BB's theory that if there are any cancer cells lingering, these spots are likely where they are hiding.  These will not be pleasant as they are deep in the spine and my bones are hard from multiple courses of the bone-strengthening agent Zometa.  I'm endeavoring right now to ensure I will be knocked out when these do these.  As barbaric as it sounds, normally one is conscious when this happens.  But I tried that once before -- for a comparatively innocuous FNA in my hip -- as it didn't work out well.  So now, I make them knock me out.

The best outcome here is for the blood and bone marrow biopsy to be clean and the lesions to be gone.  If that's the case, then the strange signature in the blood was in fact what Mayo believes it to be -- a good sign.  QED.  I won't need the FNAs done if this is the case as there This outcome might even result in BB telling me I'm cured.

If the blood is clean and the lesions are still there, the next best outcome is for them to be negative for MRD under the fine needle aspiration.  If that's the case, BB will probably continue to watch and see, but the belief will likely be that they are "shadows" rather than things to be actively worried about.  This keeps the sword of Damocles hanging, but essentially indicates that the twine that holds it remains relatively sturdy.

Anything else is pretty much a disaster so...I'll not even enumerate those outcomes.

Fingers and toes crossed.  Will likely update from Arkansas next week, which I gather is going to be one chilly trip!


  1. Best of luck, honey. Our thoughts are with you.

    Nan and Dom

  2. Good luck Nick. I also have my 6-month all scheduled for Feb and it will include PET/CT, biop, dexa scan and labs. I will also meet for the first time my new myeloma specialist. His area of expertise is immunotherapy. All the Arkansas alum have left the Huntsman. They still offer the tandem option, but now they offer several options and leave it to the patient to decide. I don't like it because we usually want the expert to tell us what we should do. Anyway, best of luck my man. May we both continue to sit high in the cheap seats.

  3. My thoughts and prayers will travel with you to Arkansas, Nick.
    Marilyn in Toronto Canada

  4. Prayers with you in Little Rock, Nick!
    Linda in Denton, TX

  5. Will be thinking of you this week, and hoping that you get nothing but good news in Arkansas!


    Craig C