Myeloma Mom: Smoldering Isn’t As Sexy As It Sounds
When I was diagnosed with multiple myeloma in 2005, my specialist told me that my disease fell into the category of smoldering myeloma.
This meant that, while I had abnormal myeloma cells in my bone marrow and abnormal protein in my blood, the myeloma wasn’t yet harming me. I didn’t have any other symptoms, such as anemia, bone damage, or kidney involvement. I’d have my blood tested every few months, but I didn’t need any treatment.
My first reaction to the smoldering diagnosis was one of intense relief. After a month of tests, doctor appointments, and constant Internet searches, I had imagined the worst. Now I was finding out that my condition – while still serious – was not nearly as serious as it could be.
I’d been given a reprieve! Time to par-tay!
A friend pointed out that “smoldering myeloma” sounded awfully, well, sexy.
“Don’t mind me,” I’d say, leaning against the veranda as steam drifted from my bodice. “My myeloma is smoldering.”
At that point, I hoped I would smolder forever.
As the months went by, however, I realized this smoldering thing wasn’t that sexy or that fun. A diagnosis of smoldering myeloma put me in cancer patient limbo. Yes, I was a cancer patient, but there wasn’t anything I could actually do about the cancer. I wasn’t exactly fighting cancer; I was trying to peacefully co-exist with cancer, to not tick the cancer off.
Every two or three months, I would have a checkup with the doctor, and I would watch my M-spike slowly climb higher. The doctors reassured me that I was still okay, but I was starting to get freaked out.
I started to live my life in two- to three-month sections. After each checkup, I’d breathe a sigh of relief that I was okay – for now – but I knew that everything could be very different in three months. I didn’t like to plan anything in advance.
Plan a family trip to the zoo this summer? Hmm. I’d better wait and see how my May appointment goes. Help plan a surprise party for my mom in December? I can’t commit until I get my November results.
I worried constantly. What would happen once my myeloma became active? What were the treatments like? I would read every word posted online by patients and caregivers. I learned about the awful side effects that other patients experienced. I knew that, as soon as I quit smoldering, everything would change. I’d be too sick to live a normal life, and I’d no longer be able to care for my baby, who was growing into an active toddler.
I only imagined the worst-case scenario. I imagined the cancer cells multiplying. I knew that every little twinge was a broken bone. I pretty much made myself nuts.
Finally, it happened. In March 2007, about a year and a half after I’d been diagnosed, my blood tests showed that I was becoming anemic, that my white count was below normal, and that my M-spike was continuing to rise. My myeloma specialist told me it was time to start treatment with Revlimid (lenalidomide) and dexamethasone (Decadron).
I was terrified. I thought this was the worst thing that could ever happen. I’d thought I would smolder for years; this was just unfair. I cried. I threw up.
I knew that life as I knew it was over.
And that was eight years ago this month. And I’m still here. And I’m okay. And life is good.
I’ll be honest: That first year of treatment was challenging and difficult, especially dealing with side effects from the dexamethasone, learning how to navigate the elaborate Revlimid prescription process, and undergoing a stem cell harvest.
But there were also good moments, like when I got the results of the first blood test I had after starting my drug regimen. I was amazed to watch my M-spike drop dramatically, after watching it rise all of those months.
I was finally fighting cancer, and I was actually winning.
Looking back, I can see that the months I spent smoldering were the most stressful since my myeloma diagnosis. While I told myself I was relieved to not need treatment, I spent a year and a half constantly feeling helpless and worried.
I guess the lesson I took away from my “smoldering time” is to focus on what’s happening with the myeloma in the present, to not worry too much about what could happen in the next few months or years.
I know now that I can never know exactly what’s next, and I tell myself that that’s okay. I once took the big step from “smoldering” to “active” myeloma, and I made it through. I can handle whatever is next – even if it isn’t sexy.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thanks for the column, Karen! Another term that my doctor uses for a low level of myeloma such as smoldering is 'indolent'! I am not sure which is the worse term actually. I don't like to be considered lazy!
I wanted to thank you for your column on the Fitbit. I didn't know about them, but mentioned that gizmo to my family. One of my daughters gave me a Fitbit for my birthday this month. I am having a lot of fun seeing how many steps I am walking in a day. I finished my first marathon in only 8 days! This seems humorous to me, but it is a challenge to walk 10,000 steps in a day, and it sure isn't a daily occurrence.
A couple of songs come to mind. "Don't worry, be happy ", and the Doris Day classic "Que sera, sera whatever will be, will be." Worry is counter productive. Preparedness is not. I'm glad you are doing better for so long. I'm 2 years from my diagnosis today, after my kidneys tried to shutdown; almost a year post ASCT, still have the fatigue, and bone and joint pain, hope it quits soon. Tramadol is my friend.
I just learned I took the step from MGUS to smouldering. I am already feeling the stress of waiting ...
Karen - Right on point. I smoldered for 2.5 years until last month, and just started CyBorD treatment. Whenever I hear the term, I always saw a campfire "smoldering" as hot coals, and wondered how can that not be a problem?
In any case, good to hear your progress. I take it you harvested, but didn't go forward with an ASCT?
I recently (December 2014) finished 6 months of CyBorD via IV infusion, which was very tolerable for the most part. Monthly lab reports since December look great! M-Spike at 0.3 g/dL. Starting to feel energetic and relatively normal and back to work. Have not had, nor am I planning to have, an ASCT, but plan on living a long, long time!!
Karen - Great column, as usual. Although I never went through the smoldering phase, going through "watch and wait" – even though I was diagnosed at Stage 1 – was so similar to what you describe. Being on edge over a 3-month period in anticipation of bad test results, and knowing what treatment would involve, was not fun. I know that this sounds crazy, but for me the certainty of treatment is in many ways more tolerable than the uncertainty of smoldering or "watch and wait".
Great column Karen! There is no question that the year or so after my diagnosis was easily the worst I have experienced so far.
I didn't start treatment for about six months, but the fear of what was to come was way worse than the actual experience. Our newly diagnosed patients, especially those with smoldering myeloma or early stage myeloma, need to know that there are lots of us out here who have had similar experiences to yours.
I spent the first three months of treatment waiting for something bad to happen. I hardly left my house the first month of chemo. When I did finally emerge, I found that I had a new sense of appreciating life. I have had a few discomforts with treatment, as most of us have, but nothing compared to the nightmare I had prepared in my mind!
Keep on keeping on.
Aloha
Tom
Thanks for the article. I'm a 31-year old who was diagnosed with multiple myeloma one month ago. I've gone through and read all your columns because it's helpful knowing that there are people with the disease who can relate to fears of dying of myeloma while still in my 30s.
Thanks for this. I have been smouldering since May 2012 and they are concerned that, even though I am still smouldering, I should consider now starting on CyBorD due type of high risk MM. I am apprehensive and nervous and relate to what you wrote.
Thanks, Karen, you summed up how my life has been for the last 6 months since I found out I was smoldering. I hate waking up everyday because I dont know how not to spend every second of that day worrying, but this has given me something to think about and something to laugh about with the sexiness of smoldering. Thank you x
Hi Karen,
Thanks for another terrific column. I went through so much of what you described during my 2 1/2 years of smoldering.
I remember telling a friend that it felt like every 2 or 3 months I was going up before a judge to be told whether I was receiving a death sentence or not. I'm normally not a melodramatic person, but in my mind it got built up to that level.
When I progressed from smoldering to symptomatic myeloma, I found out that it is not a death sentence at all. The treatment has been nowhere near as bad as I'd imagined it to be, and there's still a lot of life left in me!
Best wishes,
Mike
Karen,
While your columns always resonate with me, this one seemed to be from the very pages of my life. In an odd way it's comforting, that you described your years of smoldering as "the most stressful since [your] myeloma diagnosis", since I sometimes wonder how much worse it's going to get once Daniel starts treatment. Maybe it will feel like we're beating this thing one day. My hope is that we'll find our way half as well as you have once we cross to the other side. Until then, we'll keep smoldering ... and be thankful.
Keep strong,
Tabitha
Hi Karen,
I was just diagnosed with smoldering myeloma this month. Your article sums up my experience, with the exception that I read all your columns. It has been a comfort as a Mom of a toddler and a runner. Gives me hope I can still live a normal life even after it progresses. Thank you for sharing your story. It has been such a comfort in a really dark time.
Colleen
It was good that you and your doctors were watching it. After I did my SCT in 2008, the M-spike stayed down for about 18 months. Then it began to increase - not at a linear rate - but at an exponential rate. After a few data points, I was able to predict where it was going and when it was going to get there. I wanted to know when I needed to get on chemo (Revlimid). I was surprised to find out the doctors weren't even sure what the "make or break" limit is. We picked a number out of thin air and set the M spike limit at 1.0. But basically, since the myeloma was in an exponential climb, the chemo may not be able to keep up with the rate of increase if the myeloma gets too far out in front - something you need to be aware of if you decide to delay treatment for any great period of time. I know my time is short - I've chosen to be cremated - it'll be my last chance to have a "hot, smoking" body - pun intended -
I picture Jim Carrey saying in his Jim-Carrey way ... SMOLDERIN'!!
Your article is very helpful to me. I was recently diagnosed with SMM. I am still trying to understand the disease and I am reading as much as possible about it. I am hopeful that a vaccine will be developed very soon that can treat MGUS and SMM before it progresses to MM.
All the best to you and I wish you a very long and happy life.