Myeloma Lessons: Contradictions

I have always been fascinated by contradictions, especially in people.
I am myself a walking contradiction. Generally, I am as analytical and objective as they come. Just give me the facts, do the research, and come to a conclusion. If it cannot be explained scientifically, then it does not exist.
And yet I am extremely superstitious. I won’t pick up a “lucky penny” unless it is face up. One time I picked up a tails-up penny on my way into a courthouse for a trial, and we lost a case that everyone, except the jury, thought we would win hands down.
I will never do that again.
I am constantly knocking wood to avoid a jinx and, if wood is not available, then I knock on my “wooden head” as a substitute.
Fiancé Audrey is quite a contradiction too. She is extremely intelligent: a National Merit Scholarship finalist in high school, a bachelor’s degree from an Ivy League school, and a law degree from a top-notch institution. You would think that she would prefer PBS and the National Geographic Channel, and be an avid classical music and art fan.
But instead she is addicted to Taylor Swift and television shows featuring housewives of various cities, runway models, and brides-to-be looking for wedding dresses.
Fascinating stuff.
But where I do not care much for contradictions is in my medical care, particularly in attempting to understand and fight my myeloma.
When I was first diagnosed and met with my myeloma specialist, it all seemed pretty straightforward. Start with four to six cycles of Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone (VRD) induction to hopefully reduce the M-spike by at least 50 percent. Then, assuming no contraindications, the next step would be a stem cell transplant. Following transplant, the plan would be to do maintenance treatment for two years. If at least very good partial remission is achieved at some point in this process, then we wait until progression, defined as an M-spike increase of 0.5 g/dl (5 g/L). At that point, consideration must be given to a new line of treatment.
But a funny thing happened along the way. Things became fuzzy and this clear plan began to fray around the edges a bit.
It is true that, at first, all went swimmingly. The VRD was not too bad and my M-spike came down quickly and regularly. Three months in, when the serum immunofixation results showed two M-spikes, my doctor said to ignore the kappa spike since my clone at diagnosis was lambda. Subsequent reports showed an M-spike of 0.1 g/dl. At the time, I did not have access to the more detailed reports showing which clone was involved.
All was good since that M-spike number is very low and remained stable up to, through, and subsequent to transplant.
But then a troubling thing occurred – my M-spike went up to 0.3 and then 0.4 g/dL. Not in relapse territory yet, but also not a welcome trend. It was then that I got the more detailed serum immunofixation reports and noticed that the M-spikes since the time when I had two M-spikes were all IgG kappa. My clone at diagnosis was IgG lambda.
This set me off on a research expedition into the phenomenon known as secondary MGUS or atypical serum immunofixation patterns (ASIP). I have written about this before and I will not repeat it here, but this seeming contradiction, a rising M-spike, was unsettling. Even though I discovered a number of studies and was assured by my doctor and doctors who comment in the Beacon forum that this was actually a good thing – a sign of robust immune system reconstitution – it was difficult to absorb.
Unsettling, but I learned to live with the seeming contradiction.
And then more recently this previously stable “good” M-spike began to rise again. It went to 0.9 g/dL and then to 1.1 g/dL. This was no longer just unsettling, it crossed the line to concerning. I could see that my doctor was concerned as well. He said that, in his experience with secondary MGUS, the highest M-spike he had seen was 0.5 g/dL, although the lab had changed to a more sensitive test, which now tended to report higher M-spike levels than before.
Still, out of an abundance of caution, we did a bone marrow biopsy, which came up clean.
I also checked in the Beacon forum to see if anyone else had experienced a secondary MGUS M-spike over 1 g/dL. Beacon Medical Advisor Dr. Prashant Kapoor of the Mayo Clinic responded that, in a large group of secondary MGUS patients studied by his colleagues, about 10 percent had M-spikes greater than 1 g/dL (see related forum posting by Dr. Kapoor).
That was a relief.
But there are still so many unanswered questions.
Myeloma is a slippery devil of a disease. There are many clones that rise and fall with different treatments, or so it seems. This secondary MGUS thing, although the subject of a number of studies, still is not well understood. How do we really know that it is benign?
I suppose, as my doctor has said, if the disease is progressing, it will show itself. True enough, but this is far from comforting.
Why can’t it be clear – a low, or no, M-spike that remains stable?
These uncertainties are not limited to the myeloma results.
My AST and ALT liver enzyme levels remain elevated. Every other liver test, including a liver biopsy, has shown no cause for concern. So this condition is termed idiopathic – medical speak for ‘we don’t know why it is happening, but it does not seem to be a problem.’
Contradictions left and right.
Thankfully, I feel pretty good physically. But these tests show that something else may be going on.
Contradictions can fascinate and intrigue. Audrey’s contradictions (she won’t admit that she has any) are a large part of her charm. But when contradictions, or a lack of clarity, are part of my medical world, it is less than captivating.
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
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Thanks for the interesting column, Andrew! I found a 'lucky loonie' recently and was going to keep it ... also like four leaf clovers! Even in this age of science, some superstitions persist.
Also, did have two monoclonal values for a few months in 2013. My oncologist would add the values in order to get the 'M' protein total. Eventually the two spikes merged back into one, and the 'M' protein continued to climb until such time as I started treatment again.
It is spooky if you don't know what is going on in your body. I do wish so to get more distance from mm and not unwillingly relate every hiccup to our disease, it is tiring and it doesn't bring any relief for me. Thanks Andrew for your column, keep up the good work and keep alive the contradictions in your normal life. They make life so much more interesting.
Thanks for your column. This is a complex disease, and I agree that it is frustrating & tiring not to know "for sure" about various aspects. I
appreciate your sharing as this is new information for me about the double M-spike.
Hi Andrew,
I hope you are doing good. My husband and I are heading to the oncologist today to discuss what is going on with him. His M spike is 34.4. Scary, no symptoms other then anemia. I pray we have good news. Your column helps.