Mohr’s Myeloma Musings: Still Sleeping
In my February column, I shared my concern that my upcoming three-month checkup could reveal that I relapsed. This was due to the fact that the blood test results at my checkup in December showed a faint-to-moderate sign of a monoclonal protein – the first time this had happened since my autologous stem cell transplant in early June of 2014.
I consider myself an optimistic individual. But in the days leading up to my three-month checkups, a pessimistic side of me surfaces as I worry that something new will be seen in the routine tests that are conducted. I worry even though I received bad news on only two of the 12 checkups.
So it goes without saying that I was particularly anxious as my checkup appointment approached last week.
The routine of such appointments over the last four years hasn't changed. Check in, register, check the vitals, answer the usual questions from a nurse – Have you fallen recently? Are you experiencing fatigue? Do you have any pain? On a scale from 1 to 10, where would you rate the pain? Any other issues? Then, have blood drawn, and wait for the doctor.
By the time I see my doctor, some of those test results are already available. My doctor has always been able to refer to the complete blood count, which provides important information about the different blood cells. He also has access to the comprehensive metabolic panel, which measures blood sugar levels, electrolyte and fluid balance, and kidney and liver function.
As has been the case in every checkup, the results of these two tests were all within the normal range, except for low potassium levels. This was somewhat surprising, since I had been taking 10 mEq of potassium a day since early December. My doctor doubled the dose to address that issue.
Most of the discussion with my doctor centered around the significance of the above-mentioned test results from December. He very patiently explained the different options that could be pursued if, as he said, my myeloma was "waking up." I thought that “waking up” was an excellent descriptive phrase of relapse and one that I had not heard before.
He explained that, because the protein detected was at such a low level, it very easily could be a lab error. He discussed a possible watch-and-wait approach, adding dexamethasone or another drug (or two) to my current Revlimid (lenalidomide) regimen. He made it very clear that if the worst case scenario (relapse) did occur, there was no need to rush into a new course of action. I assume this is because the results of my other regular tests have consistently shown that my myeloma is not affecting my organs or causing other health problems.
As has been the case after every checkup, I left my appointment feeling good about my myeloma future.
That optimism was short lived as my light chain test results, which were posted two days later, showed that my kappa light chains rose almost 60 percent and are now above normal. The lambda light chains and the kappa/lambda ratio also both rose, but are still in the normal range. These results made the wait for the serum immunofixation, which detects whether there is any monoclonal protein present, almost excruciating.
Two days later, on a Sunday evening, I received an email from my doctor at 10:45 p.m., informing me that my serum immunofixation was back to normal again and that my myeloma was not waking up yet. The fact that he communicated with me late on a Sunday evening is probably an indication that he sensed my anxiety about my condition. It also demonstrates how fortunate I am to have such a caring doctor.
In my email response back to my doctor that night I asked him what the rise in my light chain levels meant. By 8:00 a.m. the next morning, I had received a response back explaining that ratio is the more important factor to look at; even though the ratio had increased slightly, it was still well within the normal range. My doctor added that the increase in light chains was a normal fluctuation and nothing to worry about.
In other words: my myeloma is still sleeping.
What have I learned from this experience? In hindsight, I could have spared myself a lot anxiety by taking the time in the previous four years since diagnosis to better understand what the free light chain test results indicate. I have never felt rushed or slighted for time at my three-month checkups, as my doctor and his staff go to great lengths to answer every question I have about this disease.
I always told my students or players that there is no such thing as a stupid question, and that asking questions is not a sign of ignorance, but instead an indication of trying to improve oneself.
Moving forward, I have to make sure I follow my own advice and ask the questions that will make me a better informed patient.
Steve Mohr is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Steve,
Good article, I found that Mychart has always helped me with questions that I have if I see something out of the norm, and the staff has always been very responsive with an answer. Since I'm on a clinical trial. I go in monthly. I too questioned my light chains last month and received a answer the same day that satisfied my concern.
Steve,
Good article. I would feel so much better between 3-month checkups if I saw the doctor after a recent blood test with myeloma markers results. I get monthly labs (all of them) and see the doctor (now 6 months apart) a couple days after lab work, so all results aren't recent either (because I'm from out of town and it gets expensive).
I glad you got great results.
If my myeloma sleeps as much as I do, I'll be just fine.
Steve,
This is such great news! I, too, am guilty of reading too much into my lab results. Since I am IgA kappa light chain, I watch those light chains very carefully, and they do fluctuate at times due to other conditions in the body. But it is difficult to wait for the next set of labs to confirm that.
I am very lucky to have a doctor like yours. When he knows I am anxious about my labs (which is always!), he makes sure to post them quickly on the website he uses for all of the bloodwork. This is a great tool; I think more doctors are using these websites, and they alleviate a lot of anxiety having to do with waiting for phone calls and leaving messages. It's usually only 6 days between the labs being drawn and my receiving all of the results, including the full myeloma panel, which I think is pretty good.
I wish you continued good reports and a very, very long remission! Always enjoy reading your columns!
Jack - Mychart is a wonderful tool, but like most tools, it is only as good as the people who operate it. Fortunately, like you, I always receive prompt replies to my questions.
Craig - I appreciate your compliment! You must be in a fairly stable situation to see your doctor every 6 months. I only have the blood tests done every 3 months when I see my oncologist for my 3 month checkup. I fear I would be a basket case mentally getting blood drawn every month.
Ellen - All of my test results are also usually posted within 5-6 days. Oftentimes I will receive an email notice that some of the test results are posted before I even see my doctor and they were only drawn 30-45 minutes earlier. Having doctors who are mindful of our ever-changing, sometimes fragile state of mind, snf who go out of their way to alleviate our anxieties, is a real blessing. Thanks for the compliment and I'm glad you enjoy reading my columns.
Steve, how surprising it is that just a few days ago I got back a disquieting IFE report, and here you are writing about a similar experience. I was going to write about it in the forum, but decided to hold back until another round of testing.
In my case, the report stated that a very light band of IgG kappa had been observed. I was quite disheartened thinking that I was no longer in complete remission, but also deeply puzzled because my diagnosis for the last six years, since the initial finding of MGUS, has always been IgA kappa. All my other markers are now well within normal range.
I am lucky, like you, to have doctors who are decent human beings. When I e mailed my local onc and my myeloma specialist, they both almost immediately responded assuring me that the IFE result did not necessarily mean that I have relapsed, that the light band could be a lab error (but unlikely), but most likely it was a transient thing which, apparently, happens from time to time. In any event, I am soon due for another round of tests and we will know more after the new results.
Very good article. I also go for my checkup every three months. I truly understand the anxiety that this causes. If you would allow me to make a few suggestions on how to minimize it slightly. I call the week before my appointment my "worry week." It makes me nuts. One thing that I do is to have all my labs and 24-hour urine done the week before my appointment. This way the doctor has all the pertinent information, and we can discuss it in person rather than by email. This way you and your doctor can make any adjustments that you might need.
Hope your myeloma stays sleeping.
I don't want to jinx myself, but I have had a mini allo. My myeloma has been sleeping since November 2006. My next checkup is the end of April.
Best wishes to all.
Great article! Thanks for sharing! I was diagnosed with multiple myeloma in 2010. In the beginning it was hard to even know what questions to ask. It's been such a learning journey! And ... the questions keep coming!
Masha - I think one of the strengths of The Beacon is the opportunity it gives us to share the vast variety of experiences associated with living with multiple myeloma. We are both lucky to have experienced "transient things which happen from time to time" in regards to our test results. I hope your positive test results continue.
Len - Thank you for the positive comments on the column but especially for the advice on changing the arrangements for my blood tests and check ups. I will look into this with my cancer center. Almost 10 years in remission - I would say that goes beyond sleeping and is hibernation!
Tamie - I think you are right in saying that the questions keep coming and unfortunately there are no definitive answers to many of the questions we have ... yet. Hopefully, with all of the new treatments being approved and on the horizon, not only will the questions decrease, but definitive answers to our most urgent questions will be available.
Steve
The body consumes 4700 mg of potassium daily, most of which comes from a good diet. To supplement 10 mg and expect results is mathematically insignificant. In fact, it's about 0.2 percent of your daily consumption. Potassium depletion can be a side effect of Revlimid use, something which I have experienced. Muscle pain and cramping are good indications you may be potassium deficient. Taking potassium supplements is a way of life for me daily, as I have been on Revlimid (25 mg) for three years. It certainly requires much more than 10 mg per day to keep my levels in the normal range for blood chemistry.
Eric - You are correct about 10 milligrams being insignificant. There was a typo in the column (since corrected). It should read 10 mEq. My understanding is that 1 mEq = 75 milligrams, so the 20 mEq that I now take = 1500 mg. Thanks for catching that error.
Isn't it interesting how our minds work between the blood draws and getting the results? I had a stem cell transplant in July 2015, and after 3 cycles of RVD post transplant, am now on single agent Velcade every other week indefinitely (high risk chromosomes). I am kappa light chain and those tests are done monthly. I have worked with my docs (Mayo, Oregon, California) to allow me to travel and set up shots at other locations. The results of FLCs range from a few hours at Mayo, to a few days, to my vacation location that posts after 4 weeks! While there I call and drive over after about 5 days to get a copy manually so I don't have to wait for the online inefficiencies there, but you hit the nail on the head with the worry routine that we go through.
Thanks, Steve, for your informative column. I, too, had worried about my light chain numbers a little while ago, but I also got a good explanation from my doctor about what the numbers and the ratio mean. Questions are good! And, the idea of myeloma sleeping is a helpful way to think about it.
Thanks, Steve, for another insightful article. I am so glad your myeloma is still "sleeping." I am sure that most of us who are on the multiple journey have felt your anxiety as we anticipate doctor visits and test results. You are quite right when you advise us to ask questions during those visits so that we are as knowledgeable as we can be about myeloma. It is wonderful that you have such a perceptive and caring doctor. My husband does too, and it makes all the difference in the world.
Rick R - I am impressed that you can juggle treatment and blood tests at three different locations. You are fortunate to have a medical team that is flexible enough to allow you to do this.
Sylvia, PattyB - Questions are indeed good. After reflecting on my last experience, I recall that more questions are asked when my wife accompanies me to my checkups. In the future, I think I will get back to the practice of her accompanying me to my checkups.
Hello Steve, Thoughtful article on how we all face the uncertainty of a 3-month checkup, and sometimes worrisome blood tests. I'm not sure we can totally avoid the anxiety, yet you are blessed with an oncologist who knew you were worried and emailed you in the evening to allay your fears.
I am so glad the myeloma is sleeping right now and that you continue to write for us.
Maureen
Thanks for this column, Steve. I look forward to the latest edition of your column every month. You do a wonderful job communicating how you feel and the impact myeloma has had on your life. What you write means much more to others than I think you realize.
Maureen - I really do feel blessed to have a doctor who takes such care in not only addressing my physical condition but also my emotional anxieties, which for me in my present condition is more fragile than my physical state.
Cheryl G - I really appreciate your kind words. I don't know how the other columnists feel, but I find writing these columns somewhat therapeutic and helpful in my own dealing with living with this disease.
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