Myeloma Lessons: Breathing Freely Again (For The Time Being)
You may recall from my last column that I was holding my breath. That was because I had a seemingly ominous test result that created some concern.
To recap a bit, for several years I have had an M-Spike that my doctor and I believe to be secondary monoclonal gammopathy of undetermined significance (MGUS). Assuming that we are correct – and all of the other test results seem to bear out that assumption – this M-spike is not a bad thing; it is benign.
The secondary MGUS M-spike was at 0.7 g/dl (7 g/l) in November, but in December it jumped to 1.4 g/dl (14 g/l). That is, it doubled. I was concerned. Maybe this was not secondary MGUS, since that phenomenon generally is fairly stable, not prone to significant jumps in the space of a single month.
I consulted with my oncologist and we agreed that this reading might well be an aberration, especially since no other marker had changed. So we held our breath and waited.
Since that time I have had two sets of blood tests. The first, taken a week or so after my last column, showed an M-spike of 0.6 g/dl – pretty much in line with the results prior to the “aberrant” one. Last week I received another set of results which showed an M-spike of 0.4 g/dl.
So that’s a relief!
Things seem to be moving in the right direction.
Or are they?
I discussed this in prior columns and in the Beacon forums. Secondary MGUS is not well-understood. There have been a number of articles written on the subject, but they are “snapshot in time” aggregations of medical records with little to no follow-up. The condition has been thought to be a positive prognostic indicator, but some of the authors writing on the subject have disagreed.
So what to make of all of this?
On the one hand, the reduction in this “good M-spike” may be no cause for concern. After all, from its first appearance in October of 2013 through July of 2015, it has ranged between 0.1 g/dl to 0.4 g/dl before jumping into the 1.0 g/dl area and remaining there until October of last year. So now we are back to the area in which we started with this phenomenon.
So why worry?
We who have multiple myeloma or care for loved ones who have the disease know one thing for sure: there is always something to worry about. It may not consume us or lurk in our every thought, but it’s always out there.
What concerns me now is a comment my oncologist made early on in our discussions about secondary MGUS. He is an experienced myeloma specialist and has had a number of patients through the years who have had signs of secondary MGUS. He told me that, in his experience, when patients who have secondary MGUS lose that benign M-spike, they tend to relapse relatively quickly afterwards.
Should I be worried now that this good M-spike seems to be receding?
I don’t know!
More importantly, no one knows.
One of the frustrating aspects of dealing with multiple myeloma is that so much is unknown. Why do certain treatments work for one patient but not another despite the fact that their circumstances seem to be identical in all important respects? Why do some patients relapse quickly while others have 20-year remissions even though their risk factors are similar?
There are theories out there in the myeloma medical community which may answer those questions, but they are only theories right now.
When it comes to divining the significance and impact of the benign secondary MGUS M-spike, the theories are based largely on correlations rather than provable scientific facts. And there is absolutely nothing I have seen or heard, other than the anecdotal experience of my oncologist, which speaks to what it means when the secondary MGUS M-spike begins to disappear.
If there is a lesson in all of this, it is to reinforce one of the fundamental things that we multiple myeloma sufferers and our friends and families all must learn: become comfortable with the unknown.
It is easy enough to say that, regardless of what life throws our way, we should do the best that we can with what we know and can control, and we shouldn’t sweat what is beyond our ability to affect.
Easy to say. Hard to do.
Many of you who are struggling with far more challenging physical and emotional impacts from multiple myeloma may ask why I cannot be grateful that I am, by all accounts, in complete remission and able to do most of what I want to do. The answer is that I am grateful – very grateful in fact.
But I am also greedy. Being superstitious, I hesitate to say it for fear of jinxing myself, but I want the current state of my health to continue. To continue next week, next month, next year, and for many years to come.
I say this knowing how unlikely that outcome is.
When I talk about multiple myeloma to people who know nothing about it, I tell them: “Everyone relapses.” That might not be technically true; there are people who are cured or who experience long remissions and eventually pass away from other causes. But it’s mostly true. Living with this reality – pushing through the uncertainty and continuing to breathe as deeply as possible – is the key for me to maximize the time that I have.
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Andrew - A great column, as usual, as you enlighten us about a topic that isn't discussed much, secondary MGUS. I would ask one question though. You state that, "there are people who are cured". I have yet to hear or read where a myeloma expert claims that the disease is curable. I'd be interested to know what you base that on, as I've lived with the disease understanding that it is incurable, but treatable.
Andrew,
OMG, I seem to be forever thinking I know quite a bit about this disease. Then somebody mentions something like "secondary MGUS". I have never heard of it. Quite frankly, it would have been OK with me if I didn't know about it now.
I'm guessing you feel the same!
Wishing you, and all of us, the best.
Aloha
Daniel
We always worry the most about things that we have no control over. We have no control over multiple myeloma. I would suggest we be conscious and on guard but not worry. What we can control we should actively manage, such as riding our bikes and going to the gym to increase strength and endurance and keep our mind occupied so we are not worrying. We can control that, so when (note I did not say if) relapse occurs, we will be ready for it and have the strength to fight.
Interesting articles. I hadn't heard about secondary MGUS until today. I have multiple myeloma and been struggling for 2 years since my stem cell transplant, thinking that there has to be something else going on as I have not been well thew hole time. I only had 3 months from transplant of not having symptoms like before the transplant. Yesterday we were told by my haematologist that I had mast cell leukemia as well. We are still in shock, but I am so relieved that they have hopefully found the missing link to my illness.
I never got into remission with the IgG and my IgA has always been very low.
So is this mast cell leukemia the same as secondary MGUS? I haven't got this sorted in my head yet.
Very interesting column, Andrew. Everything I have learned about MGUS I have learned from your columns. First, I am very happy for you that the M-spike in December was an aberrant test result. But not knowing what it really means must be very frustrating for you. My husband has multiple myeloma but is in "complete response" at this time while on a maintenance regimen of Revlimid, Empliciti and dexamethasone. Like you, we worry about the unknown, but not unnecessarily so. We try to approach every three-month checkup with optimism and so far, so good. That optimism was buoyed recently from an unexpected source. One of our sons lives in London and has friends who work at University College London. Recently he bumped into one of their myeloma researchers who asked him how his father was doing. When he responded well, the researcher said that she was not surprised since advancements in multiple myeloma research are extraordinary. While there might not be a cure today, there could well be one in the not so distant future.
Andrew,
Why say, "He told me that, in his experience, when patients who have secondary MGUS lose that benign M-spike, they tend to relapse relatively quickly afterwards," if it is a one-time "anecdotal experience of my oncologist?"
Steve - I realize that the issue of cure is a controversial one. In the case of successful allo transplants or extended complete remissions, it is my understanding that some doctors consider the multiple myeloma to be cured. In fact, I remember that on my first visit to my oncologist he told me that if a patient achieves complete remission and maintains it for seven years, he considers the patient to be cured. Not sure how I feel about that last point, since we have heard of people who relapse after remissions lasting longer than seven years, but it is those types of situations to which I was referring.
Daniel - True secondary MGUS is actually a good thing. I am glad that I heard about it since otherwise I would be worried that the M-spike indicates a relapse.
Ron - Well said and I completely agree. I try to be vigilant but not paranoid and live my life as fully as I can.
Raewyn - I am not familiar with the type of leukemia to which you refer, but it is not the same as secondary MGUS, which is a phenomenon which a small group of myeloma patients experience.
PattyB - You emphasize an important point: we live in a time where there have been many advancements in the treatment of multiple myeloma in just the past few years. We should be encouraged by the rapid rate of progress.
Craig - Perhaps I was not clear in reporting what my doctor said. His observation was not based on a single case but on his experience with a number of myeloma patients through the years who experienced secondary MGUS.
Andrew
The secret to keeping worry and anxiety under control is to take one day at a time. Don't look down the road to things that may or may not happen. We have no control over our disease other than to seek out the best care possible, then go with it. I have been living with multiple myeloma for 6 years, one day at a time. Anxiety and worry are kept in the background because I cannot do anything about the future ups or downs of this disease. Get the best care possible and go with it.
Never be anxious.
Dear Andrew,
Like other readers, I know nothing about secondary MGUS. I confess I still don't understand it, and I'm a nurse with a master's degree.
That being said, thank you for being honest with your fears. I believe worry just comes with the territory. I am glad that you are practicing breathing deeply. Sometimes breathing is all we can do. Plus, like other readers, I feel hopeful about the future. I was in dire straits in September and now I am experiencing a remission due to Darzalex, Velcade, and dexamethasone.
Maureen
Last summer my tests showed my IgM numbers coming up. A biopsy was done. Turns out my multiple myeloma is still in remission, but now I have a non-Hodgkins lymphoma, Waldenstrom’s macroglobulinemia, even rarer than multiple myeloma. 1100 people in the USA will be diagnosed every year. Instead of a quick shot of Velcade, it was an all day infusion, with lots of dex. Fighting cancer ain't for sissies!
Maureen - Happy to hear that you are doing better. Secondary MGUS can be a confounding thing. I am still a bit surprised that we don't hear of more patients who experience it. I wonder sometimes if that's because we don't look deeply enough at the immunofixation results and catch the switch to a new clone.
Bob - That is quite a road that you have been down. I am glad that you have that fighting attitude.
Hi Andrew,
So is your M-spike reflective of a different heavy and/or light chain from your initial diagnosis?
Gardengirl - Yes. I was IgG lambda at diagnosis; my present M-spike is IgG kappa.
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