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Myeloma Lessons: Contradictions

By: Andrew Gordon; Published: October 31, 2015 @ 8:03 am | Comments Disabled

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 [1] (bortezomib), Revlimid [2] (lenalidomide), and dexamethasone [3] (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 [4] 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 [5] 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 [6] 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 [7].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2015/10/31/myeloma-lessons-contradictions/

URLs in this post:

[1] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

[2] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid

[3] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

[4] have written about this before: https://myelomabeacon.org/headline/2014/09/30/myeloma-lessons-walking-the-walk/

[5] Beacon forum: https://myelomabeacon.org/forum/

[6] forum posting: https://myelomabeacon.org/forum/secondary-mgus-m-spike-levels-t6039-10.html#p36468

[7] here: https://myelomabeacon.org/author/andrew-gordon/

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