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Advice Is Easy To Give–Not So Easy To Follow!

Posted on October 23 2009 by Pat Killingsworth | 1,033 views

This past week I questioned the need of some myeloma patients to become overly technical and obsess over their test results and labs. “Try and live for today” I wrote. “Don’t just watch and wait–Live!” My point? Once you are diagnosed with multiple myeloma, there isn’t a lot a person can do to change their lot in life. Like anyone else, you play the hand you are dealt, select your best treatment option given what you know at the time and get embrace your “new normal.” Advice like this is easy for an outsider to give–or for someone like me that has been in CR so long he starts to forget what it was like to be up all night the day before an oncology appointment! Other people rarely understand the anxiety and angst associated with hanging on the results of each month’s blood test. Will I need to switch to another type of chemo? Re-consider undergoing a stem cell transplant? Or, worse yet, begin to realize that the drug you were using was your last, best option–and your life may be coming to an end. Last week I was the advice giver.

Today everything changed.

For the past 18 months my M-spike results had come back “No evidence of any abnormal protein.” And every two months the news was good and the report the same. At one point the pathologist seemed annoyed with our testing frequency and wrote, “No need to submit new samples for at least six months.” In other words, I was fine, so don’t bug him! How cool was that!

Today everything changed.

The report read: “INTERPRETATION – Prior IgG Kappa paraprotein in far gamma region faintly visible today. M-spike too small to accurately quantitate given the polyclonal background. Daniel Hoefner, PhD”

“Faintly visible today?” No big deal, right? But before there was nothing. Nada. Now there is something, even if it is too faint to measure. Maybe the myeloma is back, maybe not. Maybe it was never really gone at all. It sure would be nice to know! Maybe one of the new, more sensitive tests would help me understand exactly where my disease progression is.

My apologies, guys! But I’m still going to try and follow my own advice. The velocity of my cancer has always been very slow. My oncologists guess I likely had myeloma for many years before my diagnosis. I have time (thank God!) to watch and wait and live my life. Two months from now, my M-spike may have re-appeared–or maybe this was a false alarm! Either way, there isn’t a thing I can do about it!
Feel good and keep smiling! I’m going to try! Pat

2 Comments For This Post

  1. Jerry Says:

    Pat, sorry your recent test shows a faintly visible paraprotein. What tests are you referring to as the new more sensitive test? Is one of them the Freelite test? My wife is a nonsecretor. She has Lambda light chain proteins only. However, many times the serium protein electrophorisis test will indicate a possible or weak monoclonal band. Then they do a immunofixation test and it normally indicates no monoclonal band identified. My understanding is that plasma cells secrete heavy chain proteins and light chain proteins. Then two heavy chain proteins and two light chain proteins combine to form a whole immunoglobulin but there are some left over parts which are the light chains. Since all the myeloma plasma cells are a clone then all the left over parts are either Lambda light chains or Kappa light chains. So your myeloma cells make an IgG Kappa type immunoglobulin with leftover Kappa light chain proteins. The Freelite test measures these free light chains. There is a normal range for both the Kappa and Lambda type and the ratio between them. It seems that this test may indicate a relapse sooner than the test for the M-spike since it is capable of measuring a small amount. However, I think you would need a few tests taken when you are in CR for a base line so you could detect the increase. The increase would be in only one type since the increase in myeloma cells would only produce one type. This is why the Kappa/Lambda ratio is more important If you had an infection your immune system would create more immunoglobulins that would increase both the Kappa and Lambda light chains but the ratio would not change as much.

  2. Patricia Says:

    The serum free light chain kappa & lambda with ratio is a very sensitive snapshot of possible myeloma activity. It can detect a problem before SPEP and immunofixation results indicate a relapse. My husband's oncologists always order it as well as SPEP and immunofixation to monitor his myeloma (IgG lambda).

    Pat, I hope you don't give a s&*#t whether or not the pathologist thinks your onc. orders blood tests too frequently. If the pathologist had myeloma, he or she would be monitoring the markers monthly, you can bet on that. If my husband's oncologist wanted to go to testing every 6 months, we would fire him in a New York minute.

    My husband has been in CR since his SCT in 7/07. Every quarter I dread the lab results that may come back "monoclonal protein detected" – so far we have dodged that bullet. I hope our luck holds out for many, many quarters more.

    I want to thank you for your wonderful blog, and wish you the best in your journey with myeloma.

    Patricia

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