Eight Months Post-ASCT: Time to Craft the Maintenance Plan
My myeloma remains in remission, and the latest blood work only confirms what Jackie and I have been witnessing—I'm steadily getting better. Now, buzzing with excitement, we've just had an intense and pivotal meeting with my heme/onc.
The lab reports came in a week before my scheduled appointment with my hematologist/oncologist. That title clearly reflects my doctor’s expertise and focus on blood disorders and cancers, though it is quite a mouthful. Within the medical community and among patients, including myself, we simplify the title to “heme/onc.”
Thanks to MyChart and our growing familiarity with lab results over the past year and a half, Jackie and I knew already that my myeloma remains in remission. The blood work further validated the positive trend we’ve been observing—I’m getting steadily better.
Now, we are buzzing with excitement after an intense and pivotal meeting with my hematologist/oncologist.
Some background information might help you fully appreciate the significance of the good news. If you are a tell-me-now kind of person, jump to Great News! below.
Standard of Care for Remission
In myeloma remission, all tests—blood work, bone marrow examinations, and PET scans—indicate No Evidence of Disease (NED, our new friend). However, unlike solid tumors, blood cancer circulates through the body's extensive network of 60,000 miles of arteries, veins, and capillaries. It is both possible and likely that a small number of cancerous cells can evade treatment and remain undetected, ready to grow again—that’s relapse.
The “standard of care”—a legal rather than a medical term—calls for ongoing, indefinite maintenance drug therapy to manage the disease. These potent drugs come with significant risks and challenges, and patients typically continue with a specific regimen until the disease resurfaces or the patient is no longer able to tolerate the treatment. At that point, doctors switch the patient to another drug regimen.
I've pondered a scenario of being “no longer able to tolerate the treatment.” The idea of it says much about how taxing these maintenance treatments are on the body.
Ever been watching TV while a list of severe side effects drones on during an upbeat pharmaceutical commercial and wondered who would willingly take that drug? It's people like me—those who must weigh the risk of early death or a significantly reduced quality of life against the potential harms of treatment. Below is a list of challenges and risks I faced. I suggest you just skim the list for a visual impression rather than read it in detail. Rest assured:
I have digested it thoroughly and
I did not make any of this up
Infusion reactions such as fever, chills, respiratory symptoms, and drop in blood pressure have been experienced. Common side effects include fatigue and generalized weakness, which can affect quality of life. A persistent cough and nausea are relatively common and can vary in intensity. This drug can cause low platelet counts, which can increase bleeding risk and anemia. Increased risk of infection is common and can result in pneumonia, upper respiratory tract infections, and urinary tract infections. Blood compatibility testing may be affected, leading to difficulties cross-matching blood for transfusions. Some cardiovascular events, such as high blood pressure and cardiac arrest, have been reported in patients receiving this drug. This drug can sometimes lead to renal impairment or worsening renal function, especially in patients who already have existing kidney issues. Some patients on this drug might experience increases in liver enzymes, indicating potential liver damage. Necessary pre-medications may cause headache, dry mouth, dizziness, increased appetite and weight gain, indigestion or stomach discomfort, trouble sleeping, nervousness or restlessness, increased blood sugar levels, mood swings, irritability, or even psychotic behavior, osteoporosis and increased risk of fractures, muscle weakness, peptic ulcers, cataracts, and glaucoma. Rare and serious side effects, including adrenal insufficiency and thinning of the skin, bruising, heart palpitations, and arrhythmias, have been reported. Mood changes or confusion are very rare and more likely in sensitive individuals. Severe allergic reactions, such as anaphylaxis, though extremely rare, can occur. Patients undergoing treatment with this drug should be closely monitored for these and other side effects.
For various reasons, I managed to get to eight months beyond my Autologous Stem Cell Transplant, simply called ASCT, without starting maintenance drug therapy. After the third month, Jackie and I felt like we were two kids hiding in a fort—safe but within reach of help if we needed it, but knowing we could be called in for chores at any moment. We were profoundly grateful for the treatment holiday.
Cancer Treatment is Hard
Going into cancer treatment, I knew I was in for some rough days. "What other option do I have?" became a rhetorical question rooted in the harsh reality of my situation. Two factors helped:
Resilience: I possess extraordinary resilience, hard-earned through previous life challenges.
Optimism: Despite the common experiences of many, I secretly held onto a bit of magical thinking, believing that I would not succumb to the usual issues of cancer treatment; I would not permit it.
Cancer has a way of teaching humility, but also respecting grit.
Having No Treatment Feels Better
The debilitating nature of cancer treatment is no secret. Just over a year ago, I found myself speaking in terms of "when I get sick," fully aware that I was about to enter the tunnel of a particularly harsh treatment regimen. Now, on the other side, I can attest that the longer I am free from cancer drugs, the better I feel. My stamina has improved significantly while my fatigue has eased up. The most severe physical symptoms have subsided as my body recovers from the onslaught of high-dose chemotherapy. The chemo brain fog has lifted considerably, allowing clearer thoughts and better concentration; it’s just not as hard to think now. Additionally, resuming hormone therapy has dramatically reversed the mood disturbances that started clouding my outlook early this year.
The physical and mental toll of cancer and its treatments accrued so gradually that I did not know how compromised I had become until I began to recover. A variation on Joni Mitchell’s lyric often echoes in my mind now—”Don't it always seem to go, that you don't know what you’ve lost till it’s back.”
Maintenance Treatment Goals
Medical advances have transformed myeloma from a terminal illness into a manageable chronic condition. Extensive clinical trials led to the adoption of maintenance drug therapy as a standard of care. These studies demonstrate that maintenance drugs can prolong Progression-Free Survival (PFS) and, in some cases, Overall Survival (OS).
One limitation of clinical trials is their focus on assessing average effectiveness and safety across a broad spectrum of patients. This approach often obscures the experiences of individuals at the extremes of the illness spectrum—those with exceptionally mild or particularly severe forms of a condition.
Nonetheless, the objectives of maintenance therapy are to:
Extend the duration of remission, called progression-free survival (PFS)
Improve overall survival (OS)
Maintain quality of life (QoL)
Key Points About My Myeloma
Jackie and I knew we had a monumental decision ahead. We anticipated we’d receive a recommendation or two and knew the ultimate choice would rest with us. For people like us (me), it's impossible to gather sufficient information during a brief office visit to make a fully informed decision. I want lots of data I can chew on to help me ultimately decide which item on the tasting menu is the one I can make into a meal.
I've gone deep into my education about myeloma by attending seminars, webinars, and support groups and by devouring every reliable information source available. My understanding of myeloma and its treatments now exceeds that of the average patient. That’s lovely, but I needed to figure out how to apply all that knowledge to my specific case. Cookie-cutter solutions have never worked for me; I prefer unique approaches and tailored adjustments that might lead to better outcomes.
I turned to scholarly papers and clinical trials, pinpointing the data points I suspected my heme/onc would consider. Some of this information is eye-crossingly complex, and it’s fine if you prefer to skim this part. The upshot is that I have a darn good prognosis.
Here’s some nitty gritty I let wash over me as I prepared for the meeting with my heme/onc:
Disease Biology
We caught my myeloma exceptionally early; I barely had cancer when I arrived for treatment. Other than profound fatigue, I exhibited few medically recognizable symptoms. I intuitively sensed something was amiss, and I repeatedly tapped on my head in the exact area where myeloma lesions were initially discovered. (Thank you, Dr. Rai, for listening to me and seeking to rule out a problem that we sadly found.)
Other indicators, such as the percentage of plasma cells in my bone marrow, molecular markers, my bone marrow microenvironment, and biochemical markers including beta-2 microglobulin and albumin, all leaned towards the milder end of the disease spectrum. Only my immune function raised concerns for me, likely more than it did for my doctors. My background as a doula in a midwifery practice, which emphasizes promoting normalcy, keeps me on my toes about avoiding infection, not expecting to fix it.
Doctors diagnosed me with Stage I Kappa IgG myeloma, suggesting a favorable prognosis.
Patient's response to the transplant
My neutrophils arrived right on schedule, ten days after the ASCT—coincidentally on Jackie’s birthday. Happy birthday, my love! The transplanted stem cells started to grow and produce healthy blood cells.
By standard measures, I achieved a Complete Response (CR) after the transplant, showing No Evidence of Disease (NED). All the routine blood tests, bone marrow exams, and imaging confirmed this.
I experienced a somewhat slow recovery post-transplant. One of the attending physicians on the transplant team warned me I would feel like I’d been hit by a VW bus. She wasn't wrong. I encountered some unusual and “rare” complications, but fortunately, they were transient, and I rallied well.
My immunologic recovery challenged me and required monthly IVIG transfusions to raise my immunoglobulin G levels to normal limits.
Cytogenetic risk factors
My chromosomal alterations are not classified as 'high risk.' I have every reason to expect a generally favorable prognosis.
Depth of remission achieved post-transplant
The most rigorous testing available showed fewer than one cancer cell per million cells examined, more than six months post-transplant with no ongoing cancer treatment.
With the maintenance goals—stay in remission, improve survival, maintain quality of life—and my case-specific details in mind, Jackie and I developed a list of questions for our upcoming meeting. We also had an idea.
Planning the Next Steps
Jackie and I gathered up our notes, filled our water bottles, made sure my computer was fully charged, identified three great choices for a wonderful lunch after the meeting, and traveled to Seattle Friday morning for this critical follow-up appointment. My daughter, Ina, and her husband, Mike, joined us on Zoom.
Also on the call was a microbiologist who has been helping Jackie and me sort out the complexities of treatment options. He helped me understand that the current protocol of using maintenance drugs for myeloma came from dozens of clinical trials that used older, less precise diagnostic tools. Today, we can detect one cancer cell in one million cells rather than one in one hundred thousand. He suggested a good question to ask would be, “How might we leverage the availability of ten times the data to inform treatment options?”
The agenda focused squarely on determining the next steps. I prepared a concise set of questions and talking points before the meeting, and sent it to my heme/onc beforehand. Appointment times are limited in the over-burdened world of medical care. Being well-prepared ensures we make the most of our limited appointment time.
The meeting began with my heme/onc recommending we begin ongoing treatment with Daratumamab—a potent drug with several concerning side effects that I previously detailed. We all listened attentively.
I am fortunate that he is quite insightful and was open to considering a more nuanced approach to our next steps.
Great News!
By the end of our meeting, my heme/onc wholeheartedly embraced the ideas and questions that Jackie and I presented.
We have established a well-defined “Watch and Wait” plan: I will not take any cancer drugs unless my myeloma exits remission.
This novel strategy represents the most personalized care possible for me, situating it at the optimal end of the “standard of care” continuum. Below is the monitoring plan that outlines how we will determine if action is needed:
PET Scan—A whole body PET scan will coincide with a follow-up Cardiac PET scan later this month. (Cancer treatment-related cardiac side effects are real.) Following this, I will undergo further PET scans only if symptoms develop.
Blood Testing—Monthly lab tests will track monoclonal activity (currently none), perform mass-spec testing for residual disease, monitor my free light chains, and assess red and white blood cell counts and kidney, liver, and other metabolic functions.
Bone Marrow Aspiration—Every three months, I will have a bone marrow aspiration using the ClonoSEQ assay that can detect one cancer cell among a million.
Threshold for Action—If any logarithmic change in test results appears, it indicates that myeloma cells are setting up camp again. This would prompt us to consider treatment options available at that time. If that day were now, we would likely opt for the Daratumumab treatment previously considered by my heme/onc.
The Rationale Behind My Case
From the outset, we aggressively pursued the myeloma treatment, achieving a promising response within the first month. We completed three cycles of a targeted cancer drug cocktail, which led to a Very Good Partial Response (VGPR). Then, we capped the treatment with an ASCT. For this, I chose the “full meal deal” over the “senior special”—opting for 100% of the regular high-dose chemotherapy instead of 70% despite the tougher recovery. I wasn’t looking for the easiest path but the most effective so long as it was safe. I have always believed that "the last ten percent makes 90% of the difference." This principle guided me to a state of no evidence of disease immediately following the ASCT.
"How long have I got, Doc?" is the age-old dramatic question that, in my case, refers to the likelihood of relapse. The answer remains uncertain—“Who knows?” It could be months; more likely, it's years. In the meantime, my body will heal without the burden of ongoing cancer-targeting drugs that currently have little or nothing to target. During this period, I will focus on improving steadily, writing more, and embracing every moment of life I’m granted.
Forging a Legacy on An Uncharted Path
Everyone involved in that meeting left feeling exhilarated by the prospect of executing and documenting a new standard of care post-ASCT for patients with no evidence of disease.
My heme/onc was clearly excited to explore this novel approach with someone eager and daring enough to challenge conventional protocols. That’s me. I prefer to avoid medications when possible and reasonable, such as opting to meditate away minor pains rather than taking Tylenol. Similarly, I am reluctant to use potent drugs preemptively when there’s no current sign of disease.
My mind is cranking on how to inch toward a bonafide clinical trial for a no-evidence-of-disease/no-drugs approach. Since such a strategy might not be lucrative for pharmaceutical companies, we would likely need to explore alternative funding sources for the trial. I have ideas about that percolating. The sheer volume of action items required to turn this idea from a one-off experience into a feasible project is daunting— but it is a backburner idea worthy of bringing to a boil.
At a minimum, documenting this approach in a case study and scholarly paper seems viable. I am not alone in this situation; I've discovered four other individuals in my local myeloma support group who, post-ASCT, are also not on maintenance drugs. Their approaches and reasons are different than mine, but still, people are doing this. Currently, there is scant literature on maintenance treatment that excludes the prophylactic use of targeted myeloma drugs. This story needs to be shared so that others in similar circumstances might find valuable insights and options that might increase their overall survival and quality of life.
wonderful news...I just caught up with you, a month late.
. Have followed your writing for a while and admired how you became an expert on myeloma and a journalist on the subject as well. It is great to read what you've written over the long course of your medical events, and how to live with uncertainty, which I find very difficult. All the best to you and Jackie and your family.
Fabulous news! You are such a warrior….both you and Jackie . Love you.