When she first told us she was "Getting Ready to Fight the Bull", we had no idea how terrible this battle would be. She first began experiencing symptoms last spring that presented as something similar to sciatica. An Xray of her spine didn’t show anything obviously wrong, But the pain in her lower back continued to increase, to the point that she dropped something and while attempting to pick it up, collapsed due to the intense pain. A follow-up MRI revealed conditions in her spine that were not a simple herniated disc or stenosis. Her L4 lumbar vertebra was half-consumed by a bony tumor. A follow-up PET scan revealed lesions in most of her bones, including a particularly large one in her hip.
The diagnosis was Multiple Myeloma (MM), a cancer of the blood plasma cells that affects less than 40,000 people in the US each year. The plasma cells normally produce antibodies. The abnormal plasma cells resulting from MM produce abnormal antibodies that form masses in the bone marrow and displace normal bone marrow. These masses also form bone lesions. Michele’s L4 and hip showed these lesions. She also experienced a cracked rib from a lesion.
Michele had to undergo emergency spine stabilization surgery on June 4, 2021, in order to keep her spinal column from collapsing and permanently damaging her spinal cord. The need to heal from the surgery delayed her radiation and chemo treatment, but once sufficiently healed, she underwent both. This treatment is standard for MM and the goal is to get the patient into remission so that a stem-cell transplant (SCT) can be performed. But even with a successful SCT, one is never totally healed from MM. Relapse, in months or years is a near certainty.
The genetic makeup of the cancer cells play an important role in determining treatment, as well as providing some insight into the prognosis. Here is where Michele was hit with a double-whammy. The specific genetic makeup of her myeloma showed it to be particularly aggressive. This condition became apparent when she didn’t respond completely to the initial chemo treatment. So instead of proceeding to SCT at Medical City Hospital in Dallas, she had to undergo at least two rounds of additional chemo, using a combination of different chemo drugs her oncologist hoped would overcome her particular genetic makeup. These chemo rounds occurred in November and December and her SCT was tentatively scheduled for early January 2022.
While Michele was recovering from back surgery and undergoing radiation and chemo from June to December, she used up all available vacation and sick time. Once that occurred, her employer let her go at the end of December 2021. Fortunately, she was approved for short-term disability by the State of Texas, which pays 67% of her previous salary for 180 days. After that, Michele hopes to rely on Social Security Disability and Medicare. With the loss of her job came the loss of health care insurance for herself, her husband, and her youngest son. Fortunately, COBRA was available, and her coverage continues seamlessly, but at a much higher out-of-pocket cost to her and her family.
At the conclusion of the new chemo treatment, underwent another PET scan to confirm that the treatment was successful. Here, again to the aggressive nature of her MM, Michele experienced another setback. The PET scan showed a new lesion in her sacral canal, and she woke up one morning in early January with her right eye unable to fully track with her left eye. The eye problem turned out to be a palsy of the abduscens nerve. Her oncologist ordered a lumbar puncture (LP) in order to analyze her cerebrospinal fluid (CSF). The result of the CSF analysis confirmed what was suggested by the most recent PET scan and her eye palsy: her MM had progressed to her central nervous system (CNS). This condition is referred to as CNS relapse. And as if MM weren’t rare enough, CNS relapse is rare among MM patients. It is so rare that there is little literature on its treatment and prognosis, and what papers have been written paint a far from rosy picture.
CNS relapse meant no SCT, and an even more limited choice of chemo drugs to available to try. And the drugs to be tried would have to be provided directly to her CNS, as the conventional chemo drugs do not cross the blood-brain barrier (BBB). SCT would be off the table unless and until the newest chemo treatment was successful. The chemo drugs always present the potential for dangerous side effects. Until the latest treatment, the side effects Michele experienced weren’t life-threatening. The treatment of her CNS and the system treatment to treat her bone marrow cells resulted in a life-threatening change in her blood pressure that resulted in (temporary) paralysis of her left side and sent her to the ICU. Fortunately, the ICU doctors, her oncologists, and the many nurses that took care of her where able to restore her blood pressure to normal and she regained the use of the left side of her body. Her oncologists were able to resume chemo treatment and, the great news is, the MM in her CNS responded to the treatment.
As of January 26, the outlook for Michele is much improved, all things considered. She’s waiting to find out if she can be discharged to go home to Waco and undergo outpatient physical therapy, in anticipation of her SCT in Dallas, or go to a rehabilitation facility to recover and rehabilitate sufficiently to go home before returning to Dallas for her SCT. Of course, all pending the next PET scan that she hopes will show sufficient remission to proceed with the SCT.
In the event that an SCT cannot be performed, or the SCT fails, the last hope would be a clinical trial, provided one is available. You might think that a very rare form of cancer would have researchers beating a path to Michele to try out new drugs. But the opposite appears to be true. Unless there is a sufficient number of patients in a trial to provide statistically verifiable data, there is no point to a trial. And Michele’s very rare form of cancer means that she’s possibly one of only dozens…or a dozen…of people that have MM with CNS relapse in the US each year. But that’s the worst-case scenario.
Meanwhile, Michele and her family find themselves with a reduced family income, increased costs for health insurance, the deductibles and increased out-of-pocket expenses that come with even the best health insurance plans, and the cost of 100-mile trips from Waco to Dallas and vice versa. And there is the cost of temporary care of Michele’s two adorable dogs. And should Michele have to rely on a clinical trial, the travel expenses will only increase. Her husband’s employer has been tremendously accommodating viz. taking time off, but that cannot last forever, so further decreases in income can be anticipated.
However, one after another, state-of-the-art medical interventions haven't slowed down the rapid progression of this disease, and the wildly expensive medical bills keep growing. We hope to help the Brown family pay down Michele’s medical expenses and help them compensate for her lost income. We hope you will help by donating generously and by sharing this message far and wide. Please keep Michele in your hearts and prayers.