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More about alternative ways to monitor myeloma

Posted on June 29 2014 by Pat Killingsworth | 1,040 views

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.

Dannys graph

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:

http://www.myelomacanada.ca/docs/u-freelite-eng_d2-web.pdf

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:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2275008/

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?)
Concerned?           Yes.
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,

Danny Parker

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

27 Comments For This Post

  1. Earl McKenzie Says:

    I would like to thank Danny for his excellent description of FLC Assays. I, too, am in the same category…watching my FLC’s very carefully but mine are rising faster than his, to my chagrin. For example, my latest Kappa results are at 140.2 and my K/L ratio is 13.48…way above Danny’s results! So far my physicians have not recommended any treatment and I have not received anything since my transplant~4 years ago! Time to take an aggressive stand methinks!

    By the way Danny, the IMF now says that if you have renal impairment the norms for the K/L ratio are .37 to 3.1.Any comments?

    Thanks again!

  2. Danny Parker Says:

    Thanks Earl. I do not (thankfully) have any renal impairment, but appreciate your pointing this out.

    My understanding is that until the K/L ratio is greater than 10, almost no one recommends treatment. They may, however, recommend a BMB to evaluate the marrow. K/L >50 generally gets more attention. And the trend over time is important.

    You should know that many myeloma doctors would indicate that my small K/L ratio (2.08) could even be nothing at all!

    So, very important not to over-react. Of course, I am pro-active.

    Are you still in CR with no serum m-spike? Have you had a UPEP to look for Bence-Jones proteins? So no treatment at all for 4 yrs after your SCT? If, so you are doing remarkably well.

    All the best to you!

  3. suzierose Says:

    Hi Danny!

    thanks so much for sharing your numbers. And for explaining why FLC ratios matter. It is interesting that shingles appear to have had an impact. Particularly, when we consider that the measles vaccine served as vector to enter MM cells and kill them as well as knowing that chicken pox is a precursor for shingles. Highly interesting.

    I am asking questions now about pre-emptive therapy based on MRD positive. Of course, this means we need to know what the depth of response the MRD negative was but I am thinking that rises in FLC ratios tell are a harbinger for therapy.

    Sometimes I do not see the value in waiting for therapy. I kinda view myeloma as Whack a Mole…as soon as there is any indication it is coming back, it is time to hit it hard before it can insidiously build up a tumor load that could overwhelm the drugs available. But the doctors will do what studies have shown. In that sense, I want a cowboy. Treat me now! Let me be decider of whether it is over treatment.

    It reminds of how they had to learn in the 80s that the glucose levels needed to be tightly controlled for long term survival and prevention of neuropathy, amputation and blindness with diabetes. Doctors debated that and some tightly controlled their patients glucose levels and others did not. Long term data showed that those with tightly controlled glucose levels did not go blind, get as much neuropathy and were able to avoid amputation.

    So, long story short…I don’t want to be guinea pig to prove them wrong. I want my therapy early at the slightest sign those myelomaphuckers are proliferating!!

    Just my two cents….
    suzierose

  4. suzierose Says:

    Hi Earl,

    I did read that if the individual kappa & lambda are rising but the K/L ratio remains in normal range this is indicative of renal impairment/involvement.

    suzierose

  5. Michelle Says:

    You guys are amazing. Your indepth knowledge of Myeloma makes me wonder why we need Drs?!!!
    Danny I would have thought your oncologist would have alerted you to the change.
    Although we all try to be educated patients, for those who are unable to digest a medical journal of Myelima it would be nice to know that our Drs are thoroughly reviewing blood/urine tests and are alerting us, the patients of any change.

  6. Danny Parker Says:

    Michelle,

    Don’t misunderstand. My doctor did see this change and ordered further testing. Urine protein electrophoresis and IFE.

    So, my doctors are very aware. Also important to realize how far patient information goes vs. that of a trained specialist. While I am well aware of what a changing FLCR means, it takes a knowledgeable doctor to know what is important and what might not be.

    That takes experience and is one reason why it is important to have a trained myeloma specialist on your team.

  7. Earl McKenzie Says:

    Danny…no UPEP or m-spike but my “edition” of myeloma wreaked havoc with my kidneys and vertebrae. I was close to the dialysis point before treatment and now my GFR hovers in 38-41 range. Thanks for your kind comments and all the best to you as well ! I enjoy reading your articles!

    suzierose…loved your Whack a Mole comment and the search for a “cowboy” physician ! Very appropriate . Keep up your analyses of the medical literature! I appreciate your interpretations.

  8. Danny Parker Says:

    Suzierose,

    Your “pre-emptive” strategy mirrors my thoughts. But I seem to be in a minority.

    While most of the myeloma therapy world seeks to “not overtreat,” there is part of me that sees it the other way. If one is headed for relapse (and most of us are), why not hit the disease hard once more and see if another long remission is possible?

    So, this might be a good question for a clinical trial I think.

    We spend a lot of effort looking at when to treat smouldering multiple myeloma. Might early treatment of relapse be as, or even more productive?

    Why would I think that? For one, because research data recently presented at ASCO by Dr. Antonio Palumbo clearly shows that continuous vs. fixed duration therapy is superior both for PFS and OS for myeloma patients:

    http://bit.ly/1qc6idg

    One could speculate that MRD positive disease might be calling for more aggressive therapy to head the bad guys off at the pass before they get a head of steam.

    I certainly am not qualified to answer that question,and I think clinical data would be needed to intelligently probe it.

    Still, I think it might be useful to begin to ask the question.

  9. DougC Says:

    If I understand the FLCA right, a high ratio is really only significant if your abnormal protein is Kappa. For example, my abnormal protein is Lambda. My last FRLA was Kappa .58 Lambda .33 K/L 1.76 (H) Since I’m Lambda, it means nothing. However, as stated, sometimes it means nothing even when the ratio marker is abnormal. On 10/19/12, my Kappa was .20 Lambda 1.00 and K/L .20 (L) In this case, my Lambda was higher than Kappa and the ratio was low. However, the counts were so low, the doctors felt it was nothing. The following 5 tests were all normal range. Anyway, my point is, a high ratio has a level of fear associated with it that for some is misplaced. Lambda types like myself need to be more concerned with a Low ratio. At least that’s how I understand it.

  10. Pat Killingsworth Says:

    Doug, there should be a Lambda ratio number, too. Doesn’t that help? I figure my specialists know which numbers to follow. But no reason we shouldn’t ask questions and understand what they’re looking for and why certain numbers help and when to disregard others…

  11. Doug. Says:

    Pat – I’ve always considered the lambda ratio to be the inverse of the kappa/lambda ratio. Where kappa types want to see their ratio go lower, us lambda types want to see our ratio go higher.

    But like everything, the FLCA is only one layer of the perimeter defense. It doesn’t provide the clearest picture, but can serve as early detection signaling a possible bad guy sneaking through the perimeter wire…or it could just be a nuisance alarm

  12. Pat Killingsworth Says:

    I’m posting more information about it tomorrow. Seems to be lots of confusion–some of it mine!

  13. Doug. Says:

    I know I’m confused…..I’d love some help understanding. If I were to plug my Lambda numbers and K/L ratio for the past year, my numbers would show a decline in Lambda and a rise in K/L ratio my most recent two tests. My abnormal protein is Lambda light chain

    Range lambda .057 – 2.63 mg/dL Kappa 0.33 – 1.94mg/dL. K/L ratio 0.26 – 1.65. ARUP Labs

    Lambda: 4/16/13 – 6/10/14 (1.07, 0.80, 0.93, 0.62, 0.33)

    Kappa: same period. (0.86, 0.71, 0.80, 0.80, 0.58)

    K/L: same period (0.80, 0.89, 0.86, 1.29, 1.76 (H))

    I believe my light chains correlate with a less than normal bone marrow function. Since my tandem in 2008, I’ve never reached normal IgG levels, low end cellularity, had several transient proteins during treatment and my light chains have never been very consistent thus my ratio has ranged from low to high depending on the kappa and lambda production. In Feb 14 I had a full workup with PET/CT, labs, urine, and bone marrow biop. The key element to me as related to this discussion, my urine/IFE were clear of monoclonal protein. Since the Feb testing, my lambda free lights have actually dropped and since they dropped at a higher rate than kappa, the ratio is high. Highly unlikely, in my mind, that myeloma has become active while my lambda has dropped. It’s more the result of bone marrow function. The chart on wikilite would lead one to believe myeloma is active unless a patient considers note 3 and considers the formula used K/L

    Thanks for any insight you can offer. The free lights have always confused me. Thank you for the service you all provide.

  14. DougC Says:

    I apologize Pat, I should have taken this question to the Beacon forum. Sorry to highjack your post…….Doug

  15. Danny Parker Says:

    Doug,

    Your understanding seems more correct than you suppose! As the involved light chain in your case is lambda, if myeloma was proliferating, your ratio would go low– not the case. Just the opposite.

    The fact that your K/L ratio is high is likely– as you surmise– because of your lower lambda light chains.

    A clear UPEP and U IFE reinforces that conclusion.

    My case is different of course; my involved myeloma was a Kappa type, so a high K/L ratio is more potentially significant.

  16. Doug. Says:

    Thank you Danny for confirming what I thought was right. It is often very comforting when someone outside your medical team, whom obviously studies the disease, confirms your belief. This blog has many of those types and I appreciate you sharing your insight. The wikilite chart made me challenge my belief/understanding.

    Thank you again

  17. nil desperandum Says:

    Doug,

    Maybe I’m the last to know, but thanks for mentioning wikilite. It’s a great resource! Even at diagnosis when my Lambdas were more than 50 times the upper normal my M-spike was barely 0.2, so I follow FLCs closely.

    Now that they are (usually) in the normal range I have learned not to ascribe too much significance to one or two assays. They are relatively small numbers that represent the near balance between two strong opposing forces: HRMM vs. continuous re-induction therapy, hence they bounce around considerably, sometimes quite a bit out of range and then back in. The ratio is noisier still.

    Nil

  18. Pat Killingsworth Says:

    Doug, I love the fact you brought it here. I’d like more reader interaction like this. I’m not the only one that was a bit confused. Turns out I was getting FLC ratio’s all along. Check out my post tomorrow…

  19. Nancy Shamanna Says:

    On the topic of SFLC testing, I have twice gone to talks given by Dr. Anne Sherwood, of The Binding Site. This company, out of the UK, that provides SFLC testing, will send one of their scientific staff out to myeloma support group meetings. Dr. Sherwood (PhD), is in charge of the Pacific NW of the US and also Western Canada. She encouraged attendees to bring along their lab reports and she went through them with people individually after her talk. She is very helpful…and the co. also has scientific people who cover other areas of the continent (and I am sure other countries, such as the UK, since it is from there). If you go to the talk, you will enjoy seeing the pastoral pictures of the farm in Vermont, where the antibodies are cloned in sheep.

  20. Nancy Shamanna Says:

    I first met Dr. Sherwood at a Myeloma Canada conference. We arranged for her to speak to our support group, working around her schedule of when she would be in Calgary as part of her regular work…hope that helps!

  21. Pat Killingsworth Says:

    I’m familiar with them, Nancy. Came to speak to our support group. There are more sensitive tests being developed all the time. Insurance issues and getting docs onboard seem to be major hurdle here…

  22. Nancy Shamanna Says:

    Yes, there is also a ‘serum free heavy chain’ test being developed by the Binding Site, which they are hoping is another way to track the monoclonal antibodies, but not the smaller arms of them, the heavier arms. Here, it would be getting the costs paid for by our provincial health care plan, for such tests. Don’t think that the new test is available yet though. I don’t know if new blood tests need to be approved by Health Canada…are the blood tests where you are approved by the FDA?

  23. Pat Killingsworth Says:

    I’m not sure, Nancy. I believe its more of an insurance issue–and getting hospitals and cancer centers on board. Medical professionals should love and embrace new things. A few do. But with so many overworked and often underpaid (at least they think so) change can be slow sometimes…

  24. Nancy Shamanna Says:

    Thanks Pat, sometimes reading in on the US scene is confusing and also like comparing ‘apples to oranges’. I have learned so much from this, and it certainly is useful to me, in terms of advocacy. I went to some interesting talks this spring by Dr. J. Michael (who is Canadian, but works now at the Mayo) and Dr. Leuleu, from France. They both said that myeloma specialists are continually conferring as to what is the best approach to treating patients. The international aspect of how they are conferring gives me hope too for the future.

  25. Pat Killingsworth Says:

    One of our regular readers, Susan, emailed me her thoughts and agreed to let me share them with you:

    Hi Pat,
    I read today’s blog. I am a minimal secretor and have had no m spike since round 3 of induction. Therefore I watch light chains carefully. Those are important for following my disease.

    AND…..there is a new test called hevylite assay that I learned about at the most recent IMF conference. It has just been FDA approved in the last few months. It is ready for IGG and IGA myeloma. ( see write up in Spring IMF magazine ) It compares “involved ” and “uninvolved “hevy chains , for example my IGA lambda ( involved) to my IGA kappa (uninvolved). It gives a ratio of the kappa to lambda which also has a normal reference range associated with it. I brought this to my local doctor, and she thought it a good idea. So one tube of blood later, sent off to Mayo, and my hevylite assay was normal. Supposedly, it is a more sensitive test than SPEP and picks up on relapse earlier. You probably know all this, but if not, it is an interesting and useful new diagnostic. Not to replace SPEP but in “addition “for those of us without m spikes!

  26. Nancy Shamanna Says:

    Thanks for posting Susan’s email. I do now recall that Dr. Sherwood said that hevylite assay testing is available, on special request from one’s oncologist. The testing is all done at the Mayo Clinic, from the samples sent in. Seems like it is used mostly for ‘non secretory’ patients?

  27. Pat Killingsworth Says:

    Correct, Nancy.

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