Update 2024-0426
Cancer Remains at Bay and We Find Joy
Our New Love—NED
This new phase of managing myeloma involves many moving parts. I did not imagine it would get more complicated than last year, yet it has. “Survivorship” is not a simple matter of healing and getting on with life. For me — for Jackie and me — this is a time of fine-tuning the quality of our lives. Medical implications and decisions color every day.
It is hard to believe that it has been seven months since my stem cell transplant. We did another round of testing when I hit the six-month mark, and the results remain excellent.
The standard tests, used for decades, still indicate NED (no evidence of disease), as they did in December when we tested at the 90-day mark. Those tests look at many factors that make most people’s eyes spin. It’s okay as long as it all boils down to NED.
One of the standard tests in that mind-boggling series can detect even one residual myeloma cell in 100,000. My test result was “none found.” My oncologists look even deeper, using a next-generation diagnostic test called ClonoSEQ that’s been gaining traction in routine clinical practice for about five years. It can find one residual myeloma cell in one million cells. (Did anyone else just hear Mike Myers as Dr. Evil say, "One mee-lee-yon cells?")
On my recent ClonoSEQ test, they found less than one cell. Huh? What does that mean, “less than one cell?” Was there a crumb of a cell left on the table of my bone marrow? I was curious, so I delved further and gained more understanding than most people would ever care to have about ClonoSEQ and something called MRD (minimum residual disease). The answer to the “less than one” question is a pretty simple matter of averaging. To keep the playing field level, compare apples-to-apples, and all that, ClonoSEQ MRD test results are expressed in terms of one million cells even though there are more than one million cells in a sample. In my case, “less than one” is the average of three cancer cells found in the 4,129,299 bone marrow cells they examined.
Those 4.1 million cells were part of a tiny bit of tissue pulled out of the bone marrow in the middle of my iliac crest. The sample measured just over 3/4 of an inch long and was about as big around as a cocktail skewer.
My ClonoSEQ test numbers tell the tale of how far I’ve come. When I was first sick, four "dominant sequences” were identified as myeloma indicators ranging from 568K to 745K per one million cells. I don’t know how to do all the fancy math to say precisely what my cancer burden was before I started treatment; however, the numbers on the chart below are the numbers that appeared in the summary section of my recent ClonoSEQ report. Before treatment, I was far from less than one cell in a million.
Remission Accomplished. Now what?
The question of maintenance treatment still looms. My test results have been trending in a good direction, so my care team and I have been willing to delay the meeting with my myeloma specialist, during which we will discuss what to do next. My body has been using this treatment holiday to regain strength while holding the line with the myeloma. The scheduled meeting will happen in mid-May.
Standard of Care
Once remission is reached, the “standard of care” is to be on maintenance treatment indefinitely to delay disease progression. It’s like an ongoing game of whack-a-mole, but with “less than one cell” per million, I wonder if the hammer is coming down on a lot of empty holes.
A particular maintenance drug is prescribed until it stops working when the cancer mutates, evades the drug, and relapse happens, or until a patient’s body can no longer tolerate the drug. That last phrase is sobering. It indicates a lot of beating up the body. When either of those occurrences happens, patients are switched to a different line of myeloma treatment.
If maintenance treatment is the right answer, I will soldier on and endure the side effects of the drugs and the harm they will cause my body to make myeloma a chronic illness, not a death sentence, as long as the harm does not turn my life into something to endure rather than embrace. I already had a rough go with that very struggle at the first of the year. It is not how I would choose to life. Maintenance therapy can be a pretty big hit on the quality of life and even be dangerous. I remember that Revlimid complications threw an embolism at my lungs just one year ago.
I emerged from my stem cell transplant ready to proceed to what all the literature and what I was told should be the next step. This line of questioning about whether further cancer drugs are right for me at this time has evolved over many months. I’ve learned much from seminars and reading both first-person accounts and scholarly articles. I have also listened carefully and watched what my body is doing. After seeing how well I have responded to treatment and how the myeloma has remained at bay for seven months, my concerns have moved me from “Sign me up for a clinical trial” to "We need to talk.”
Questions About Maintenance Treatment
When thinking about myeloma maintenance treatment, I keep in mind that:
Myeloma is a blood cancer that is not curable yet. It is unlike a solid tumor that can be removed with “clean margins.” Relapse happens.
The goal of maintenance treatment is to keep suppressing the growth of myeloma.
I am curious about my cancer load going from MRD +2 at the 90-day mark after transplant to MRD <1 three months later without any treatment. Is my body organically fighting the myeloma cells that ordinarily divide and grow?
It is my understanding that the standard of care in support of the use of maintenance drugs was determined from multiple clinical trials that employed testing that could only detect one residual cancer cell in 100,000. Now that we can look deeper with far more accurate tests, one has to wonder about the risks and benefits of frequent monitoring without medication (watch and wait) as long as the MRD remains nearly undetectable in one million cells. How quickly could my three cells divide and become 24 cells, or 240, or more? What would be an attention-getting number? What other markers do we need to track? What are the options for treatment at that point?
We’ll see what answers I get next month.
Covid Vaccinations—2 down, 1 to go
My immunoglobulin levels have steadily improved with monthly IVIG transfusions, so we started my COVID Vaccine protocol—one injection a month for three months, then a booster at eight months. The first two shots are behind me, with minimal side effects.
Even with COVID vaccines, my immune system remains trashed by cancer treatment. I need to be extraordinarily careful. Being “immunocompromised” may be a permanent part of my lifestyle—social distancing, frequent hand washing, masks in public, avoiding sick people and crowds in poorly ventilated areas.
It's disappointing that we're missing the symphony season and other live performances again this season. Still, Jackie and I are skilled at pivoting our activities within our “new normal” and finding things we enjoy. We were fortunate to get tickets for an outdoor concert in June to see Jon Batiste at a nearby vineyard venue. That’s exciting.
Finding Joy
Scorpio Moon
Something delightful about living in the 47th parallel is that after the Spring Equinox, after the start of daylight savings time, our days are really long. It was light after 8:30 in the evening as the Scorpio Moon rose behind Mt. Rainier.
If you enjoy a bit of folklore, consider this: The Scorpio Moon is said to carry extraordinary mystical energy, often associated with transformation, depth, and emotional intensity. As a zodiac sign, Scorpio (that’s me!) is linked to themes of death and rebirth (I sorta just did that) and formidable emotional undercurrents.
The full moon in Scorpio is considered a powerful time for intuitive insights and confronting emotional and psychological truths. This mythology reflects Scorpio's tendency to be involved with challenges and transformations, making it a time of significant emotional energy and psychic power.
Lilacs in Bloom
This week, we ventured out and met up with friends Mark and Don in southern Washington. We started with a leisurely lunch along the Columbia River. Then we headed to a turn-of-the-previous-century garden in Woodland to check out “Lilac Days” at the Hulda Klager Lilac Gardens. What a wonderful day doing normal things.
Jackie found this gem of an idea in the “Only in Washington” free newsletter we’ve longingly read since arriving in our Pacific Northwest paradise. The publication offers weekday tidbits of interesting and unusual things to explore right in your own backyard. There are editions for every state, and we recommend it.
Know someone who would benefit from Love Heals?
I am honored to share my myeloma experience with anyone who may benefit from it. Cancer unites us as patients, care partners, and medical professionals, even if we do not know one another personally. If you know someone who may benefit from a first-person account of myeloma treatment, please forward them this newsletter or click the “share” button.
I know I say this repeatedly, but how can I not? The tremendous love and concern showered upon us through kindnesses, prayers, sparkles, and innumerable good thoughts and deeds helps us know we are not alone and weather difficult days. We return our love to our wonderful tribe of caring souls.
May you stay safe, be well, love much and be loved, and have a life of ease. 💕
Warmly,
Mary & Jackie
AT BAY, wonderful news! Wishing you the best always.
Thank you for sharing not only your results, but also your process. I learn so much with every entry!
Love, love and Love, Libby