Wednesday, July 24, 2013

When does a negative test not feel so negative?

When instead of saying "the original protein cannot be detected", as most of my tests from Arkansas have said, it comes back "the original M protein may be present.  Multiple indistinct bands are found in the gamma region in the area of the original protein."

CR at UAMS assures me it is negative.

I do not like it, Sam I am.  If I wasn't rushed here, I'd come up with some witty play on Dr. Seuss using the words "blood" and "protein" and "monoclonal" even though no rhymes come immediately to mind with respect to any of them.

The local test said there's no monoclonal protein.  The same blood tested at UAMS comes out as above.  So UAMS is more sensitive.  Ugh.

UGH I say.

Oh well.  Probably nothing, and there's nothing I can do about it even if it *is* something.  Come September, the MRI should tell all.  If those stupid pits are gone, perhaps I can breathe a bit easier.

Tuesday, July 23, 2013

Curetalk panel with Dr. Kumar from Mayo Clinic...any questions?

Hello folks.

I've participated in a number of panels over the last year with various Myeloma specialists.  Thursday of this week at 7PM Eastern, Dr. Shaji Kumar of Mayo, Rochester will be discussing updates from the most recent ASCO conference, as well as taking questions from the panelists, myself included.

If anybody has anything they'd like to ask, please let me know and I'll do my best!

Meanwhile, if you want to listen, you can register for the call here:

These calls are typically limited to 50 participants, all of whom can also ask questions, or can stay anonymous and just listen.  These are typically pretty interesting and informative so I would encourage those who are interested to sign up.

Friday, July 19, 2013

Only a false alarm. Immunofixation negative!

So I saw my Dr. GD out here on Tuesday, and explained to him I was uneasy about the immunifixation test.  He didn't seem to get the gravity of my concern -- deep down, he still thinks it's unlikely that I'm cured so for him, seeing a return of monoclonal protein is almost expected, just a matter of when.  I explained to him that I'm going after something different, and he said he understood...but I'm not sure he did.

Anyhow, he ordered a battery of additional tests, and I had them draw some blood to send to Arkansas as well.  I'm waiting for their results, but the local lab came back with "normal pattern, no monoclonal proteins detected" under the immunofixation test.

So I'll chalk this up to either a false positive, the oligoclonal noise that BB expects, or possibly my immune system ramping up in response to a potential cold that I may have been fighting off.  Didn't feel that bad although I had a tickle in my throat and my WBC went up to 5.8, which for me is high (it usually is around 4).  WBC will be recovering now that I'm tapering off my Velcade and not on Revlimid any longer, so that could also be the cause.

In any case, until I hear otherwise, I remain in profound remission and hopefully am cured.  Still waiting for those pesky pits in my spine to resolve but we'll see how those are on imaging in September.

I may or may not share some information about a patient I've recently become friends with who was in the care of JB (the anti-transplant guy) and had unsatisfactory results...but for now, accentuate the positive, which is to say, the test is negative.  :)

Have an excellent weekend, all.

Monday, July 8, 2013

Incomplete feedback from a couple of doctors on my labs

So in the wake of my alarming little reappearance of the word "monoclonal" on my labs the other day, I did a little inquiring.

BB told me not to worry, as previously reported.  That this was an oligoclonal band and a sign of marrow recovery.  This is corroborated by that article I posted.

BJ, BB's right arm, was kind enough to follow up with a summary of the immunofixation tests I've gotten from Arkansas over the past three years.  Several (early on, though) did indicate the presence of more than one monoclonal band.  They were not the original MM protein that was reflected by my disease, though, so it wasn't a recurrence.

However, these reports have likewise been clean the last several months.

Dr. GT, a MM specialist in his own right who used to work for BB, has been kind enough to answer a few questions of mine over the last year since my friend CP, whom is in his treatment, has been a great teammate in our little battle here and she referred me to him.

GT said that without knowing which specific protein (both light and heavy chain) this is, it's impossible to say whether or not it's a recurrence of the disease.

Which brings me back to the Arkansas comment that seemingly indicated my original monoclonal issues had both a light and heavy chain component, and since the light chain is the only one that was found here, that's another indication that all is well.

But unless Arkansas sees the detail behind the protein and confirms it's not the same, I won't be convinced.

So I'm going to get some blood sent to Arkansas the next time I'm back at the doctor's.  I'm supposed to be sending it to them monthly but I must confess, years of complete remission and a growing confidence (interrupted by a few crises of faith) that I'm cured has led me to be a bit cavalier about so doing.  I resolve to be better about this going forward.

The likelihood is that this is either (a) a false positive reading or (b) oligoclonal.  That said, as I wrote above, I'll still be trepidatious until it is confirmed.  Until then...I shall try to put it out of my mind.

Thursday, July 4, 2013

Another false alarm?

The Iron Law of Oligarchy.

I remember literally nothing else about a class I took in comparative political structures of developing nations during my junior year at UCLA except the professor's name (Edward Kannyo...I just looked him up and he's still kicking around, writing articles about post-Gaddafi Libya) and the fact that we read some book called the Iron Law of Oligarchy (or, rather, were supposed to have read it).  I just knew to throw that phrase around once or twice in a paper.  Somehow I did well in the class.  Hmm.

I should have been studying microbiology, instead, it seems.

Oligo = numerous, mono = one.  Oligarchy is rule by a few, monarchy is rule by a...wait for it...monarch.  One.  Oligopoly is control by a few, monopoly is...well, we all know.

Oligoclonal means several bands of duplicated protein.  Monoclonal is one.  One bad protein, reflective of cancer.

If monoclonal proteins show back up for me, it means the whole attempt at a cure is obviously shot, and more depressingly it means the disease is most likely drug resistant and high risk in its profile, given the experience in the still fairly low (less than half) of low-risk, newly-diagnosed MM patients that relapse under Total Therapy 3 (or 4, its successor therapy) at Arkansas.

I would, needless to say, not like to see a return of the monoclonal protein.

When one is recovering from a transplant, it is not uncommon to find oligoclonal bands in one's blood or urine.  This is actually a sign of a recovering immune system, and is in fact consistent with remission and the natural healing of the body.  Here's an abstract from the NIH on the topic.

I had this when I was first in remission, and it was noted for maybe six months.  Then, nothing.  Not a trace of anything untoward in my blood, for more than three years.  Good stuff.

Imagine my dismay, then, when yesterday my labs from two weeks ago were ready and there was no monoclonal protein in my blood under SPEP (Serum Protein Electro Phoresis, a relatively blunt instrument relative to the other tests but still capable of detecting low levels of monoclonal protein).  However, under the more sensitive immunofixation test, the following result came back:

Faint monoclonal lamba light chain observed in the gamma region.

That's not good.

I had IgG lamba myeloma.

Of course I immediately texted BB and reported the precise wording of the test, including the fact that SPEP was negative.  I ended my text with "should I be concerned?"   This is kinda like the Hindenberg reporter saying "uh, looks like sparks up there, hope it all works out."  In other words, I was already quite concerned.

The next fifteen minutes were pretty tense.  Thankfully, as busy as BB is, he checked he cell phone and within fifteen minutes he wrote back:  "No.  Oligoclonal."

Now...this MIGHT be the case.  It could simply be that the one band is so faint that others which could be there are even fainter.  It could also be that as a light chain (my light chains are normal and the ratio is in balance) versus blood, it might not be anything to be concerned about.  And I did a scan of the Internet and found a site where a doctor said that such a signature was, in fact, nothing to be worried about.

That said, it scares the crap outta me.

I tested negative for any disease with the extremely sensitive MRD test in Arkansas in March -- that's about 60 times more sensitive than immunofixation.  And my marrow was clean as a whistle.  So I'm probably worried about nothing.  Maybe, when I get my next test results back on or around the 23rd of the month, it will show nothing, again, under immunofixation.  It might be a plain ol' false positive, after all.  I've had friends with false positives for this disease.

But like I said, it scares the crap outta me.

Not much I can do other than wait it out and stay strong.  I am once again humbled by the bravery of those patients who struggle to stay in remission and watch their disease progress -- I have very little to complain about.

Have a jubilant Independence Day!