Friday I wrote a post about how differently multiple myeloma can manifest itself in patients–and how different patients react to and follow their myeloma. I featured lifestyle columnist, Danny Parker, as on of my examples. Danny was kind enough to finish what I started in this month’s column:
Dear Pat and others,
I little more on my situation, since Pat brought this up.
I was diagnosed four years ago with hi-risk multiple myeloma (t[14,16, 1q21+) and had a stem cell transplant in January 2011. I have been in stringent CR since that time—at least until very recently.
As Pat alludes to,I am now paying close attention to the Free Light Chain Ratio (FLCR) which has gone out of the high bounds of 1.65 in the last two months. 1.80in May; 2.08 in June.
And yes I study myeloma deeply, and while not a doctor, have a fair understanding of the numbers and what they mean. Here is a very nice lay explanation for the Free Light Chain assay:
The FLC numbers are particularly important for several reasons which Suzierose and myeloma specialists are quite familiar with:
1) They are very sensitive and change quickly in response to excess production of free light chains. Thus, the FLC number can signal a response to therapy, progressive disease or the possibility of approaching relapse.
2) The FLC numbers are so sensitive that they often give an indication of changes in disease progression well before a serum protein electrophoresis (SPEP) or immunofixation (IFE) would.
3) If one’s myeloma is morphing to a type where the full monoclonal protein is not expressed, but light chains are expressed (Bence-Jones Proteins), the FLC test provides very accurate tracking of the disease progress.
Thus, when I alerted my oncologist last month to my elevated FLCR, he ordered a urine protein electrophoresis and urine IFE.
That was a good idea as we collected 4 mg of monoclonal protein that way in 24 hrs. The urine IFE also found a trace of kappa monoclonal protein, verifying the suspicion that something is cooking.
Of course, Dr. Jeff Wolf, my myeloma specialist at UCSF, is not yet excited by these numbers–“consistent with a very low level of myeloma,” but we are now on alert and have increased my maintenance Revlimid dose from 5 mg to 10 mg. There is even a chance that I am developing something like an “idiopathic Bence-Jones proteinuria”– the equivalent of smoldering (asymptomatic) myeloma and smoldering Waldenstrom’smacroglobulinemia in the light chain field. Idiopathic Bence-Jones proteinuria can belong to the benign light chain monoclonal gammopathies.
But then again, what is happening may be quite different. We’ll have to wait and see.
I remain without symptoms. My SPEP and serum IFE are both negative. No bone involvement, good kidney function and good health overall.
But if I plot my increase in Kappa light chains, the presentation shows that something changed after I had shingles in December-February– the kappa number started to rise– and in April rose further.
Take a look at the data in the plot:
What to see? My Kappa Free Light Chains in yellow and the Kappa/Lambda Ratio (KLR) in red. The high end for normal for these two parameters is 19.4 and 1.65, respectively which are shown as horizontal lines. The two vertical lines show the period from December – February 2013-2014 when I had a severe case of shingles (herpes zoster).
So, did having shingles help my myeloma to become active again? Possibly.
Dr. Ola Langren and colleagues have some interesting data on herpes zoster (and other infections) and myeloma, but it is a chicken and egg conundrum. Do shingles help bring on myeloma? Or conversely do people with developing myeloma often develop shingles?
Wouldn’t it be nice to know?
While not conclusive, looking over the Table 3 in the reference below seems to show a significant influence of Herpes Zoster on the possibility of developing myeloma:
So, infectious diseases may sometimes set us up to develop myeloma or to relapse. But what to do after that?
Even if simplistic, I still think of myeloma as a complicated fire. That’s my mental analog. It is hard to understand this fire; it is different in each patient.
Yet, it’s clear, with any fire, that they are easier to contain/control when small and not blazing out of control. And thus vigilance is important before clinical symptoms emerge.
I’m fine now, and quite different from Pat, I actually love numbers. I love statistics and statistical inference as well. And while I can’t say I love myeloma, I do enjoy learning about it with the idea that perhaps I can better help myself and others. That seems worthwhile.
Worried? Not yet. (In fact, ask yourself when the last time being worried was helpful?)
Proactive? You bet. And what would that be?
- Amp up diet and exercise (you can read my earlier columns).
- Watch my test results carefully and share with others. Stay abreast of the latest research results, particularly examining how treatments for relapse have evolved.
- Continue with a full and happy life.
Double down on that last bullet. And greetings to all of my friends out there.
Best of summer wishes,
Thanks, Danny! I guess I have a few questions for you and suzierose. How is FLC assay different than the free light chain number I get from my specialist at Mayo? Are they the same thing?
I emailed my good friend and trusted medical oncologist, Dr. Vikas Malhotra, about FLC assays. His response:
FLC assay is more sensitive but less specific. May be worthwhile to check it periodically. Even with low M protein level your disease moves fast. Best Wishes. You are in good hands with Dr. Roy…
I want to reassure those of you that don’t understand some of the more technical aspects of our cancer. Following test trends with the help of your doctor is one thing. Understanding how it all works goes above and beyond being a well educated patient. In my opinion, getting into this type of detail should be classified as “extra credit.” No reason not to learn the technical nuances. But don’t feel stressed if you aren’t interested or just don’t get it.
We’re fortunate to have a number of readers that are interested in doing the heavy lifting. Thanks!
Feel good and keep smiling! Pat