Update 2024-0123

Mission Accomplished

Celebrating Success

Andrew Cowan, my oncologist and a Myeloma specialist, had incredibly positive news about my treatment response for Jackie and me last Friday. Based on oncology standards, no morphological or immunophenotypic evidence of residual disease exists; I am MRD-negative (having no Minimum Residual Disease).

Put simply, I am in remission.

This promising outcome is supported in part by three key indicators: the test results I saw in my electronic medical record before my appointment with Dr. Cowan and shared in my last update:

• 0 monoclonal spike (M-spike) found in blood

• 0 evidence of myeloma found on PET scan

• 0 cancer cells found in 100,000 (10^-5) bone marrow cells

Myeloma staging and treatment options involve looking at several other significant factors, including free light chains and chromosome mutations. Fortunately, my free light chains are within the desired range, and my chromosome mutations are not associated with a high-risk profile.

Myeloma Lurks

Some say myeloma treatment is a marathon, not a sprint. The idea behind the adage is that myeloma is not a “one-and-done” curable disease (yet). Monitoring and maintenance treatment must continue to keep the cancer cells at bay.

ClonoSeq testing is a recent technology known for its high sensitivity (10^-6). Despite my overall great news, my recent ClonoSeq test identified two (2) clonal cells in ONE MILLION bone marrow cells. I hoped that no clonal cells would be found and was disappointed. Dr. Cowan assures me that mine is still considered an excellent response.

What would 0 cells in one million cells mean anyway?

Myeloma is a dynamic blood cancer that had a considerable population of mutated cells movin’ and groovin’ throughout the 60,000 miles of blood vessels in my body. We tried as hard as anybody could to get rid of all of them but, at the risk of sounding like a broken record (does that analogy even work in this century?), it’s not possible. Myeloma is not curable (yet). A few cancerous cells will always be floating around among my body's trillions of circulating blood cells. Detecting residual myeloma cells is like attempting to grasp a prize with the challenging claw machine at a carnival. I guess what I’m saying, or rather, what I want to ask, is, “Does 0 cells found ever really mean there are none?”

I'm not a scientist, but it's clear to me that managing myeloma involves a nuanced approach to maintenance treatment, acknowledging there is currently no cure, and focusing on effective disease management with an eye on settling into a new normal quality of life that works for me.

Still Recovering

I’m still recovering from the effects of the high-dose chemotherapy used to eliminate as many cancer cells as possible before the stem cell transplant. That was one huge hit.

How I Feel

When I grew impatient about my recovery a few weeks ago, I was reminded that it might take up to a year to recover from the powerful treatment drugs, not the myeloma, the treatment drugs. In the meantime, I’ll soon resume treatment with cancer-specific medications to keep me in remission. It’s back to that idea of dancing a cha-cha with one step forward and another step back.

My impatience about not being as recovered as I thought I would be by now is, ironically, likely an indication that my energy levels are increasing, and I’m so much better. When I can recognize my progress (hard to do when I’m in the middle of it every day), I notice that:

• I nap much less than I used to.

• My step is a little more lively; I can walk farther and descend stairs normally, albeit slowly.

• I sleep better at night.

• Fatigue is still a part of everyday life, but it’s not as bad as it was.

• My pain is significantly less and without the use of medication.

• I’m getting more effective at helping my GI tract heal with prudent food choices and body positioning.

• I can do simple cooking. Jackie still hangs nearby in case I need a hand or need to do a handoff, and I love her for that and so many other things.

• I have many clever tricks to help with short-term memory and word retrieval. (It was suggested that when I can’t recall a word, say, “I can’t remember how to say it in English.” This gives the impression that I am a brilliant bilingualist rather than someone struggling with chemo brain. Hehehe!)

Immunity

My neutrophils returned very quickly after the Stem Cell Transplant — by Day 12. This meant that my transplanted stem cells found their way to my bone marrow and were growing and making healthy new cells. My wiped-out immune system was recovering.

Immunoglobulins are other essential players in helping the immune system fight infection, and mine did not bounce back after my stem cell transplant. I got my first IVIG transfusion last week. The treatment is good so far. My IgG (Immunoglobulin-G— the one that circulates primarily in the blood) is improving, and I had only a mild adverse reaction to the transfusion. Steady as she goes.

Infection is the number one mortality risk with myeloma. I will be “partying” like we did in 2020 for a long time.

• Wash hands frequently.

• Wear a well-fitting mask covering the nose and mouth in public places.

• Stay 6 feet away from people who don't live with you.

• Avoid sick people, crowds, and poorly ventilated indoor spaces.

Blood Test Results

I got a perfect score on my most recent Comprehensive Metabolic Panel. Every item tested was in the green. I haven’t seen that for a while. That’s really good because that test looks at many essential things like potassium, protein, calcium, glucose, and kidney function. All good.

The results of my CBC (complete blood count) Differential remains a bit janky. Both my white and red blood cells are still low. This might explain some of my fatigue. Still, this is all expected, and I am recovering well. It’s just going to take some more time.

What’s next?

Now is when the focus shifts toward preserving the hard-earned remission and determining the most effective medications to make that happen.

Dr. Cowan has proposed my participation in a clinical trial where I would be randomly assigned to one of two groups. Jackie and I cannot find any drawbacks to this trial, considering it delves into treatments Dr. Cowan had already been contemplating—treatments I've thoroughly researched.

In one arm of the study, the long-standing gold standard-of-care maintenance treatment involves a drug called Lenalidomide (Revlimid). The other arm of the study combines Lenalidomide with Daratumumab (Darzalex). (Did you just hear Charlie Brown's teacher’s voice?)

Patients who remain MRD-negative (using the 10^-5 standard) after two years will be further randomized to continue or discontinue the assigned treatment. MRD-positive patients will continue with the assigned treatment. Patients are treated for up to 7 years and followed for up to 15 years.

It looks to me like this study is trying to determine when and if it is safe to discontinue myeloma maintenance treatment. This is a significant quality of life issue. Myeloma maintenance medications have side effects. Care teams speak about how well a patient can tolerate treatment. They are talking about the balance between what the maintenance drugs do to you versus what they are doing for you. What if patients had such a level of remission that it was unlikely that myeloma would return in any significant way in their lifetime?

A myeloma patient who spoke at a recent myeloma conference said some things that gave me food for thought. He had the usual induction therapy and an Autologous Stem Cell Transplant in his late 30s (same as me, except for the considerable age difference) and was on maintenance for several years. He’s now in his late 40s. Since he’s remained in deep remission all these years, he decided to take himself off maintenance treatment. He still frequently monitors the myeloma indicators and will quickly detect if the myeloma starts to creep back. His words particularly struck me when he said something along the lines of, “Getting treatment made life good. Being off the cancer drugs makes it better.”

The potential benefits of joining this clinical trial are multi-faceted:

• CONTRIBUTING TO ADVANCEMENTS. By participating, I contribute to a growing knowledge base that may extend lives and enhance the quality of life for future patients. It’s a pay-it-forward move that resonates deeply with me.

• MOTIVATION. Knowing myeloma maintenance can be challenging; this trial could be a great motivator. Being part of a group dealing with the same challenges always motivates me. (85 pounds lost during 3-year Stanford weight loss study and 43 years in AA.)

• INSIGHTFUL MONITORING. I welcome having my case monitored by additional researchers and the potential for me to learn more about the intricacies of myeloma treatment.

• FINANCIAL SUPPORT. If study funding covers some or all treatment medication expenses, it will ease our financial burden.

Whether as part of the clinical trial or strictly under the care of Dr. Cowan, maintenance treatment will start soon.

Joy Fuels Resilience

It’s been heartwarming to get so much wonderful feedback from many of you about how well I’ve handled this myeloma experience. It could not have happened this way without the tremendous blessings of love and support that have fueled the work of being resilient. I often talk about how hundreds of people have had such a huge impact.

I’ve also realized that replaying the beautiful memories of my life and holding them dear has also fueled my resilience and recovery. Many experiences have lined my life with great joy. In a recent writing exercise, my experience of flying surfaced. I’m offering a snippet below because such bliss is too good not to share.

May you stay safe, be well, love much and be loved, and have a life of ease.  💕

With all our love,
Mary & Jackie

Flying

The small Cessna 172 held a special place in my life. It was my respite, a symbol of my perseverance and tiny slices of freedom. I’d go to the airfield, often after work, and leave the day and its worries behind as I passed through the security gate. Out on the tarmac, I’d breathe deeply as I walked around the aircraft, checklist in hand, paying meticulous attention to every inspection point.

Each time I hopped up into the left seat, the 172’s size made me feel like I was donning an exquisite overcoat. Picture it: my right arm outstretched to slide into the right wing like placing my arm in a silk-lined sleeve, then wrapping the fuselage around my body, finally reaching out with my left arm and adjusting it into the left wing sleeve.

I treasured my carefully constructed checklists, reading them aloud as I was taught, and thrilled to hear my voice pronouncing, “checklist complete,” immediately followed by a robust “Clear prop!” that resonated out the side window to no one there.

When the engine roared to life, I taxied to the warm-up area, ran through the warm-up checklist, and proceeded slowly to the hold bars. In the ears of my headset, the controller announced, “Cessna 5-6-Juliet, cleared for take-off.” In my head, I saw my 8-year-old self sprawled out on the front lawn, lusting after the planes on approach to Moffat Naval Air Station and heard my father’s voice, “Don’t be silly, Mary. Girls don’t fly airplanes.” I smiled and read back, “Cleared for takeoff. Cessna 5-6-Juliet rolling.” I made the turn to face down the runway, and as I steadily advanced the throttle, it felt like a sprint until the precise moment it was time to tilt the yoke back ever so slightly as if lifting my chin. The instant of becoming airborne always made my breath catch.

In that exhilarating ascent, I soared like a bird, effortlessly leaning this way or that to change direction, watching the world gracefully shrink below me and reveling in the profound sense of freedom.

© Mary Rose 2024

Photo by Marko Pavlichenko on Unsplash