Letters From Cancerland: So Maybe
With my initial diagnosis of multiple myeloma 14 years in the past, I am an outlier under any definition of the word. And the farther out I am from that initial diagnosis, the more I baffle my general oncologist, who has been with me since the start, and my myeloma specialist who I see every quarter.
There are many factors that make for this baffling situation.
First, I am 14 years post diagnosis, a chronological benchmark most myeloma patients never reach.
Second, back in the earliest days, I had a tandem stem cell transplant that proved successful at the 45-day mark (“remission”) and had utterly failed at the 90-day mark. That alone should have greatly diminished the likelihood of my reaching even the five-year mark, let alone sailing past it.
Third, to add to the “quirky things about April,” I have had no bone damage – no tumors, no breaks, no holes – despite the lengthy time I have had the disease. The mild osteoporosis that was diagnosed last fall was attributed to the large amounts of steroids I’ve taken, particularly in the early years when the steroid dosage was high. But every radiologist agrees: no myeloma damage to my skeleton.
Fourth, for months (well, 18+, but who’s counting?), my labs have stayed absolutely flat. No progress against the myeloma on the one hand, no advancement by the myeloma on the other. This little piece of data bothered my specialist enough that he ordered a PET/CT scan to rule out “extramedullary disease,” which in lay terms means the myeloma has left my bone marrow and is congregating elsewhere in my body, usually but not necessarily near a major organ.
Note: The PET CT scan, which was done just this January, came out clean on all myeloma fronts. That good news caused my specialist to restate how he views my myeloma: “persistent.”
And then there is the asthenia. General definitions of asthenia boil down to this: “loss of energy and strength.” My general oncologist is bothered by my asthenia, which leads me to lie down beside still waters, or, in my case, slouch into an armchair as soon as the supper dishes are done, and read for the rest of the evening. Other evening activities are markedly reduced; weekend activities are likewise impacted.
As I am married to a professional musician, you can imagine this makes for some interesting mathematics. In fact, much of the time I am not gainfully employed by our Juvenile Court is spent working through elaborate equations: “Which is greater: the energy expended driving to and having dinner with friends who live 35 miles away, or the energy expended by having those same friends for dinner with me preparing most of the meal, including baking dessert? Solve for x, with x being how exhausted and/or ill I will be the following day.”
I was an excellent math student, so much so that I carried an A in calculus in college four years after I had last set foot in a high school math class. But even the very best math skills cannot predict the exhaustion and the illness. There is a feeling, one which I have written about before, that is present deep within me and accompanies me everywhere. When I am engrossed in a project and my adrenaline is running high, that feeling, which I simply call “the myeloma,” recedes. When the activities of daily life (work, making meals, hanging laundry) have ended for the day, the myeloma comes sweeping back. It is particularly forceful in the middle of the night, sometimes waking me. Ironically, it is so forceful at those times that I quickly fall back asleep from the sheer weight of being sick.
The asthenia really bothers my general oncologist. My specialist is more accepting of it. He is more bothered by the flat-line labs. Their different takes on my condition remind me of a saying my torts professor told us first-year law students our very first day of class as he spoke about the different resources (textbook, hornbook, study guide) that were available to us: “A man with one watch always knows what time it is. A man with two is never quite sure.”
Note: I went to law school long before we carried our time on our phones. Now one is always, always sure what time it is. But that doesn’t mean two oncologists will ever have the same time.
Asthenia aside, flat labs aside, “persistent disease” aside, even the strong myeloma feeling aside, what do I make of this? What do the doctors make of this? How do I make informed, intelligent choices about my treatment options (if any)? How do they make sense of what options (albeit limited, given my longevity) to discuss with me? (The longevity plays a role in this regard: most of the testing of new treatment lines is done on patients who have been diagnosed much more recently than I have. There is no indication, and no way to predict, if a treatment would have the same impact on an outlier.)
At the most recent quarterly appointment with my specialist, he, my husband Warren, and I hit a quiet moment while we all weighed my history, my treatments to date, what we know did or did not work, whether any options are viable in the future, whether those same options were personally acceptable. Then I posed something that had been dancing around the perimeter of my thoughts for some time.
“So maybe this is just what myeloma looks like at 14 years out. And you [my specialist] don’t know because you don’t see it.”
My specialist looked at me and smiled, giving an almost imperceptible shrug.
“You could be right. Maybe this is what myeloma looks like 14 years out. At least in you, April. See you in three months.”
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thanks for this philosophical description of your life, April! Congratulations on being 14 years out from diagnosis and being in relatively good shape, apart from tiredness. I now know others who are long-term survivors too, since I joined our local support group nine years ago and am still meeting with some of the same people.
Sometimes I have trouble getting up in the morning until I can motivate myself with a thought of something nice to do in the day. That could be any number of things. I found a nice line in a song we are singing at our choir now, 'Cheerful hearts awake to singing,' from Hava Nagila. I make lists and check off items of stuff I like to do and also what I need to do in the day, week, month.
Best wishes, and don't you find that the increasing sunshine and longer days of springtime are helpful too?
Congratulations on your longevity. I have similar results in my myeloma journey. I was formally diagnosed in 2009. My treatment led to a stem cell transplant in 2012. Since that time, I have taken no myeloma related medications. I sometimes wonder if I really need to see my oncologists every three months since I feel normal. My hemoglobin has been slightly below normal since 2003, but I do not have any fatigue from it, so I have decided it is my normal. Each year since my transplant I get a PET/CT scan and bone marrow sample, and they do not show any myeloma. My labs vary some but are in normal range. I hope your continue to confound your doctors.
Congratulations. I hope you keep it up for at least 14 more years.
April,
Happy it's month April today too. So good to hear your cheery comments. Congratulations on year 14! Mine is 11. Never thought it'd happen.
I'm on Darzalex now since Pomalyst doesn't keep the M-spike below 1.5 AND makes me sick! I'm doing much better on Darzalex and the spike dropped to 1.0 in the first 4 weeks.
We don't really know where we're going, but we're going together and we keep creeping toward the cure!!
Best to you and Warren, Julia
Dear April, I enjoyed reading your column. It made me think of lots of things about our lives with myeloma. I love to hear that you are so very much alive after 14 years, but, of course, it’s not an easy way, particularly with the asthenia. I don’t know what that feels like and I am not looking forward to it! I think that I have ‘got used to’ some of the difficult things about having myeloma, but others haunt me. It seems that you are philosophical and realistic about your life with myeloma and that is also always good to hear- thank you.
Dear April,
I always enjoy your columns, but this one especially. You have me beat by one year. The Ides of March 13 years ago was when I was first diagnosed with MM, and 10 years ago on the Ides of March I was having an autologous stem cell transplant. I too see my hematology-oncology team every three months, and although my lab numbers can get out of kilter from time to time, most of the time I am 'dull and boring.' That's where I'm at now. It's a complete mystery to me why I'm still here and other multiple myeloma patients that I know of are not. As a result, these lines from an old Celtic song always make me weep:
But since it falls unto my lot
That I should rise, and you should not,
I'll gently rise and I'll softly call
Good night and joy be with you all
Good night and joy be with you all
Bob Fowler
Aloha April,
Your message is soooooo important to newly diagnosed patients. Myeloma does not conform to the statistics that define it.
Treatments have evolved so fast that patients diagnosed in the "olden days" pre-2004 and included in today's statistics cause a skew in survival statistics. New patients should have every hope of also beating the odds.
The other difficulty in pigeonholing myeloma into specific statistics is that every person's myeloma seems to vary quite widely. I encourage patients to read the first hand accounts here in the Beacon to see some examples of this variability.
I am only into this journey half as long as you (7 years) and am also surprised that I am still typing. I am also still skiing, hunting, fishing, golfing, and sometimes working. I too have my difficulties – primarily with treatment – and am looking at my first stem cell transplant in two months, but the message is clear. Do your best, live your life, work with your doctors, but do not assume life is over.
We all have a chance at another tomorrow.
Carpe Diem
Tom
April,
Your column really resonates with me. My case isn’t like yours, but the “one watch-two watch experience” is mine too. There’s no protocol for unusual cases, and getting additional opinions just makes it worse!
Hang in there!
David
Great article. Goes to show how individual and just plain weird this disease is! I don't think my doctors can put a finger on why I'm "easy to treat,"...at least for now. One never knows with this cancer. I am 10+ years out and I haven't relapsed yet (thank God). I am so glad to hear that even though your tandem stem cell transplant "utterly failed" at the 90-day mark, you are alive and well! Here's to hoping you stay that way. Thanks for all your encouragement here in this site.
April,
I am 15 years out from the beginning. In 2004 I was retired 7 months from teaching, then BAM. Routine bloodwork showed an M-spike. I was told I needed an oncologist for a cancer no one I knew had ever had or heard about. The doctor said MGUS and my numbers shot up every three months. I was terrified of a bone marrow biopsy and just knew the pain would be awful. In 2007, the doctor insisted, so treatment could begin. I had 70 percent cancer and I also had a head full of lesions from waiting.
I have now had 20 pain-free bone marrow biopsies. My induction therapy was thalidimide and dexamethasone. In 5 months my numbers were good and I went to a stem cell transplant. I reached a very good partial response (VGPR) and went on Revlimid as part of a clinical trial. It trned out I was in the placebo arm. After 2 years my disease progressed, so I started Revlimid 10 mg. My body could not tolerate more. I stayed on it for 8 years. My cancer was stable. Then it wasn’t. My low-risk myeloma had changed to high risk and my bone marrow biopsy showed 32 percent cancer in my marrow. My doctor put me on Darzalex and within one month my M-spike was, and still is, 0.1 percent.
I had fatigue with Revlimid and it is worse now. Hard to know how I will feel on any given day. People don’t get that just because I look good I’m not feeling great. Also, I hear a lot, "So now you’re cured." That would be a no. I am so grateful to be alive. Been places and done things I might not have done if I didn’t have this beast. Started with a two-year survival rate and a couple of treatment drugs. I’ve come a long way and hope to keep it going.
Best to you,
Linda
For me it has been 10 years so far and continuous but varied treatment with RVD. The continuous dex is the toughest on me. My myeloma has not varied much, still IgG kappa, no new clones. Continuous treatment wears on you, and although I stay very active, I have to make life compromises. We all learn to cope.
April, good luck and hope that the asthenia dissipates. Otherwise I wish that you can go another 14 years without any myeloma progression (hopefully a cure will be found before then).
This is encouraging since lately I feel morbid with the thought that the longer I go with myeloma (diagnosed in 2008), the stranger and worse it will get. Always on treatment and my oncologist says I am "biochemical" -- but the disease is always underlying my life and how I think about things. I do have lack of energy and have given up on the idea of traveling or driving long distances. Good luck to you and to all who bear myeloma in their lives. Luck. I think that's what it takes.
April, I enjoy reading your columns. Your professor’s comment about the two watches really resonated with me as I have two amazing hematologists who sometimes have differing opinions of the direction my treatment should be headed. I am approaching my third anniversary of my stem cell transplant and have been on maintenance therapy ever since. I was off all drugs for two weeks this past October when I was on a river cruise in Europe and loved how I felt. Since then, I have wanted to go off the Revlimid to just give my body a break. One doctor agrees as that has been his standard procedure in the past; however, the other says that the newest research promotes staying on it until it stops working. Thus, I am still on it. I read in one of the comments that someone has been on it for eight years. Oh my! I guess as long as I stay cancer free, I’ll do what it takes. Hearing about the long term survivals of you and the others makes me hopeful that I might actually get to see my almost two-year old grandson grow up. I had to chuckle about your dealings with asthenia. When I hit my easy chair after supper, my body knows that I’m going to relax and take it easy. That has always been the case from back in the days when I was high school teacher. I was the type of teacher who never sat down while I taught, so after the dishes were done and kitchen cleaned, my easy chair and my papers called to me! Maybe I’ve had asthenia my whole life? Just kidding. At any rate, I hope you continue to amaze your doctors for another 14 years. You give me hope!
Thank you for these heartfelt, encouraging, uplifting comments. I love that the myeloma chronological ages (time of diagnosis) of those of you commenting ranges from young to older than me (wow!). I am typing this in the early morning, listening to the rain coming down, and grateful i am here to hear it. And grateful that we continue to gather in this online community at the Beacon, reading the various writers sharing their experiences, and sharing ours in return.
Thank you for your insight. I am one year post stem cell transplant with light chain disease. Your words resonate with me in how you describe those moments when you almost forget myeloma is there in the activity of daily life. Keep up the fight, your information conveyed here is so encouraging and educating. Blessings to you all.
April, I will tuck this column away in my mind and heart. Thank you for sharing this story and giving us a glimpse into your world. Thank you for giving us the chance to level set our expectations, while we look to the future with hope. Here's to surviving 14 years with myeloma, your strength and determination, and to the next 14 years! Cheers.