Myeloma Lessons: Holding My Breath
When we multiple myeloma sufferers were first diagnosed, we all heard from our doctor something like this: “You have multiple myeloma, a type of blood cancer that is incurable but treatable.”
And so the waiting and fretting began.
No matter what type of frontline treatment we chose, the questions that we had were all the same.
Will it work?
How long will it take to see results?
Can I achieve a partial, or a very good partial, or even a complete remission?
These questions began to be answered by the results of periodic blood tests, bone marrow biopsies, and scans of various sorts.
But we did not receive that information instantly. We had to wait for the results to trickle in, figuratively holding our breath until we knew how we were doing.
Some of us get our results at visits with our doctor, which may occur days or even weeks after the tests or scans. I am fortunate that the cancer center where I am treated has an online patient portal where results are posted soon after the tests or scans.
So I can have the results as soon as they are available. Yet this just means that I am holding my breath for shorter periods of time. The blood test results are not all available at once. First the blood counts, blood chemistry, and nutrition results are posted. Then others – like liver enzymes – show up. Next, the immunoglobulin numbers (IgG, IgM and IgA) are available. They are followed by the serum free light chain numbers. And, coming in last but certainly not least, are the serum and urine immunofixation and electrophoresis results, including the ever-important serum M-spike.
Over the three and a half years since my diagnosis, I have experienced much breath holding waiting for the latest reports to be posted. It is not an easy thing to go through. Tom Petty must have had us in mind when he wrote that famous lyric, “The waiting is the hardest part.”
As I have gone through the cycles of induction treatment, then a stem cell transplant, and finally two years of maintenance therapy, I have learned to deal with the waiting and wondering.
I was been fortunate that my first line of treatment – Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone – was very effective in bringing my numbers down quickly. Still, I waited impatiently for each successive set of results.
Next was an autologous stem cell transplant, a scary prospect under the best of circumstances. Immediately following the transplant, blood was drawn daily for a period of several weeks, and each time it was nerve wracking waiting to see how I was recovering and whether the transplant would be a “success.” Similarly, the post-transplant bone marrow biopsy was an important hurdle, and waiting for those results was taxing.
But luckily the results were good for me. Although I continued to show an M-spike, as I have mentioned in earlier columns, the M-spike was different than the one present at my initial diagnosis and through the early months of my treatment. So the persistent M-spike was considered to be secondary MGUS, a phenomenon not well-understood but apparently benign.
Through my time on maintenance, the blood test numbers, PET/CT scan results, bone marrow biopsies, and bone scans all pointed to a complete remission. I didn’t exactly relax, but I wasn’t holding my breath nearly as much as I had during the early months following my initial diagnosis.
In fact, sometimes I actually forgot to check my results for a few days after a blood draw. Then something would jog my memory and I would say to myself, “Geez, you better go online and see the numbers!”
So I was merrily cruising through life, numbers good, some even improving. Then last month I went for my regular vein tapping.
The results came in slowly. First, the CBC numbers were posted and they were very good. Better than they had been in forever. Then came the other early returns, all in range and as good as they had been. The IgG, IgM and IgA results were all excellent. Free light chain levels came next and they were perfect.
Then it happened. The M-spike was 1.4 g/dl! This after the previous month’s reading of 0.7 g/dl. In the space of one month, it had doubled.
Granted, it was still presumably the secondary MGUS M-spike. Nevertheless, this was at first alarming. I quickly remembered, however, what I had told other myeloma patients who suddenly got seemingly bad results: view it in its proper context.
This M-spike result seemed to be at odds with all the others. My hemoglobin, calcium, and creatinine levels were all normal. My IgG number, which one would expect to rise in concert with a sudden increase in M-spike, was little changed from the prior month and the recent past. All scans and biopsies had been clear. I had no bone pain.
All of this led me to conclude that this result could well be an outlier, not indicative of relapse. But I was concerned. Concerned enough to call my doctor to discuss it with him. His reaction was consistent with my conclusions. This latest M-spike result may well be an aberration.
So we agreed to do nothing immediately. The plan is to see what the next set of results shows. If at that time we still have concerns, the next step would be a bone marrow biopsy and, perhaps, a PET/CT scan.
This seems to be the prudent course to follow given my history.
I am an analytical guy, even when it comes to my own life and health, but I do worry.
Sometimes now in the late afternoon when I lean back in my “napping chair” and close my eyes, I find myself thinking “Breathe, breathe, the answers will come soon enough.”
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 .
Ah, the wait. It is sometimes worse than everything else.
Andrew, a lovely column that captures how the waiting is so challenging. I love data, and after 6 years, I am good at the interpretation. What I'm not any better at, is the waiting. Yet your reminder to breathe is what I practice. I also like that you have a "napping" chair.
Maureen
Thanks Andrew – good column and a nice reminder to all of us. I feel that I hold my breath a lot in anticipation of my husband's test results. At times when I read the Beacon as contributors recount their first diagnosis or a temporary turn-for-the worse recollection, I feel as though I have stopped breathing. Like you, I am quite analytical and so the numbers have meaning and I want to know them sooner than later. My husband is content to let me review and "interpret" the test results. I will remind myself to breathe – breathe – breathe.
Andrew, yes the waiting can be vexing! I too go to a facility that provides me a portal to see my results as soon as they are available. So your description of the timing and the sequence within which they arrive elicits familiar, though not necessarily fond, memories.
While I in no way want to diminish your message, which I think you summed up aptly – "breathe" – I do want to point out that in some cases our seemingly borderline hypochondria does serve us well. Mine is a case in point.
Like you, I'm IgG. I'm also kappa as well as del(17p). I was diagnosed in January of 2013, had a stem cell transplant in June of that year, went on maintenance with Velcade through sometime around the middle of 2014. I was off all treatment for about 8 months. All seemed good. My IgG was around the middle of the normal range. Yes, my IgA and IgM were below the bottom of the lower range, but I could live with that (literally).
Then, like you, my M-spike began to creep up. Nothing to be concerned about, or so I was told, but surely not the direction I would prefer. Unlike you, my IgG also began to creep upwardly, again nothing to be concerned with, still well within the normal range. Also apparently unlike you, I began to feel that something was wrong. Nothing obvious mind you. Just a vague sense or notion that something was awry.
Based on my verbal reports, combined with the fact that my M-spike and IgG continued to creep ever so slowly, my doctor ordered a PET/CT in late November of last year (2015). All clear. No indication of active myeloma anywhere. What a relief! Perhaps I had been a hypochondriac after all.
However, come late January of 2016, that sense of something not being right had only increased. In early February I had a full body MRI. And there it was: T-4, L-1, and L-5. Myeloma cells causing lesions. On the one hand, I felt vindicated. On the other hand, I felt terrified. Prior to the MRI, neither my blood work nor my scans had given any indication of what was going on.
To make a long story somewhat shorter, I had radiation (like the first time, a very troubling treatment option for me), and was put on Revlimid and Ninlaro, then Darzalex and Pomalyst, and finally Empliciti and Pomalyst.
To this day, no one knows why the active myeloma wasn't being detected by the best that modern medical science has to offer. In retrospect, however, I'm grateful I had been as persistent as I was. The odds that I would be alive today if I hadn't been aren't good.
So Andrew, I want to be clear, I am not suggesting that something similar is going on with you. Not at all. My guess is that you are in the very early stage of what may, or may not, become something necessitating treatment. At the same time, I am encouraging you, and everyone else, to continue to be vigilant in tracking your myeloma indicators. Oh, but still remember to breathe ...
Aloha and Happy New Year,
Daniel
Andrew - Our experiences, as you have noted before, are very similar, and such is the case in what you describe here. On two occasions since having my transplant two and a half years ago, my 3-month blood tests showed a faint to moderate presence of that dreaded M protein. Like you, I was alarmed when this first happened, but my doctor was not overly concerned, suggesting that it could be an aberration. He was correct, as each of the blood tests following those tests were fine. He stated that he would only get concerned if a pattern developed, and that hasn't happened so far.
I hope and pray that your next column will inform us that your last test results were an aberration.
Andrew, great column. I too hold my breath waiting for the results. I am a numbers freak, so I get concerned when I see any type of a increase.
Hope everything stays positive for you.
Happy New Year!
Numbers, numbers – we all look and wait. There are aspects of my IgA that my doctor says don't respond to treatment and are not understood at this point. After 8 years of nearly constant treatment and a stem cell transplant, I cannot relax week to week, but have learned to go into zones of comfort where I can at least let go for awhile the awful reality of this incurable disease. I am grateful going into the New Year that I feel just fine and am "healthy."
Hi Andrew,
Nice column – and a good message to all of us. I hope your next test results show that the M-spike this time is an aberration, as you and your doctor suspect.
Wishing you a happy and healthy 2017!
Mike
Thank you for continuing to share your story. There is comfort in knowing we are not alone. Praying for good results on your next labs!
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