From Early Warning Signs to a 14-Year Watch-and-Wait

The International Myeloma Foundation continues to share this collection of patient and care partner stories from those who have completed the Legislative Advocacy Master Class (LAMC). The IMF hopes that these unique and compelling stories will help raise awareness about the disease, inspire action, and make an impact in changing healthcare laws and policies for the betterment of the myeloma community.  

(EDITOR’S NOTE: The Legislative Advocacy Master Class is a 12-week immersive advocacy training course, and a combined collaboration between the International Myeloma Foundation and Patients Rising—"a leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare challenges.” The stories in this blog series were taken from the now-completed second class, where participants submitted their stories as final projects to graduate from the course. The LAMC is an ongoing effort to train advocates for the IMF to tell their stories, write a letter to Congress, and make an impact in changing healthcare laws and policies. If you have questions or inquiries, or if you would like to sign up for future LAMC courses, please email Michael Riotto at [email protected].) 

Cancer Journey #1: A Melanoma Diagnosis

Four cancer journeys. The latest—a diagnosis of multiple myeloma in November 2020.  Well, actually, the first indicator of myeloma appeared in 2006, when, following a visit to my dermatologist, a biopsy of a cyst on my back showed abnormal lymphocytes. I was (and still am) on a twice-a-year regimen, standing naked in front of the dermatologist, for a melanoma I had in the late 1980s. That melanoma diagnosis marked cancer Journey #1.

A Long Watch: MGUS and Early Myeloma Signals

I was referred to oncology to “rule out” (guess what?) multiple myeloma. The standard tests were ordered: electrophoresis (blood) and the skeletal bone survey. The blood test indeed showed an M-spike, one of the primary indicators of multiple myeloma. But, because the standard of care indicates that myeloma is NOT treated until it actually manifests, we were in a watchful state with monoclonal gammopathy of undetermined significance (MGUS). WATCHFUL FOR FOURTEEN YEARS, as it turned out.

Cancer Journey #2: Breast Cancer Diagnosis

In the meantime, in July 2008, I was diagnosed with breast cancer. This breast cancer diagnosis began Journey #2. The cancer was well-differentiated, invasive, and ductal carcinoma. The actual lump was very small, but when my breast MRI lit up like a Christmas tree, the doctors were perplexed. Following several reviews by the tumor board, all (including me) agreed that a bilateral mastectomy would be the treatment of choice.  

Cancer Journey #3: An Unexpected Lymphoma 

As it turned out, lymphoma was found in my breast tissue. The lymphoma equaled Journey #3 Clean margins, no lymph node involvement. No further treatment required, with the exception of the five-year course of aromatase inhibitor for hormone-positive pathology. Although the surgeon had placed a port, it was not necessary and was subsequently removed in October.

Ongoing Monitoring Without Treatment

Meanwhile, visits to the oncologist for both breast cancer follow-up and MGUS continued to show the M-spike and kappa light chain with substantial, quantitative values, yet no manifestation, and no myeloma treatment.

New Symptoms Emerge

Fast forward to spring 2019, when I started to have back pain following a ground cover removal session in our garden. I thought I pulled something as I was yanking out the plants. Not thinking too much about it, time passed, and the pains were intermittent, but relatively frequent, some quite strong, and got my attention. I took Tylenol, which helped, and at times, had to move to something stronger—tramadol. While working at a women’s store, I noticed sharp back twinges when bending over, but again, I wasn’t sure what to attribute this to.

Life Continues Amid Growing Concerns

During this time, life continues to happen. My mother-in-law needed more care, and she lost her brother in April of 2020. Shortly after, she took a bad fall, and we had to move her out of independent living into assisted living, and then to long-term care. She subsequently passed in September 2020.

Cancer Journey #4: Multiple Myeloma Diagnosis

My discomfort became bad enough to force me to see my primary care doctor. Positioning of the pain could have easily indicated a kidney stone. He sent me that afternoon for a CT. Later that Friday evening, I got the call: he knew why I was having pain. It WASN’T a kidney stone; it was multiple myeloma.

The next week was quite a blur, as there were appointments to schedule: oncology, radiation oncology, biopsy of the mass, and bone marrow biopsy . . . whew! The biopsies confirmed the multiple myeloma diagnosis, kappa light chain. The good news: slow-growing and non-aggressive.

Treatment Begins: Radiation and Induction Therapy

Radiation was set up to shrink the back mass, a plasmacytoma, from T-11/T-12 across to my lower ribs. Ten treatments, then begin the “real” myeloma induction treatment cycle.  

What I also need to mention is that from the fall of 2008 (following breast cancer surgery), and still happening, is that my right leg has been “wonky.” It seemed not to listen to the brain when the brain says, “step and lift your toes.” Also, early on, after stress, my leg would feel like Jell-O, and I was unable to flex my foot. Walking, hiking, and working in the garden turned into real challenges, as duration and balance were questionable. Perhaps this was due to the mass growing on my back from the onset of myeloma, interfering with the nerves?

A Difficult Decision: Stem Cell Transplant

From Day 1 of diagnosis, my multiple myeloma specialists were absolutely in favor of, and pushing me toward, a stem cell transplant. I struggled over this for weeks, as I was responding to treatment, and given the “non-aggressive, slow-growing” descriptors of my myeloma. I had tremendous stress with this, and I really didn’t know what to do. I spent many hours outside, talking to my dad (who passed in 1999 of brain cancer). I ultimately decided to move forward with apheresis but hold off for the actual transplant.  

Induction treatment was interesting, as I started with Revlimid® (lenalidomide), 25 mg, Velcade weekly, and dexamethasone. The Revlimid gave me a tremendous rash, starting on my face, then to my back. We stopped the Revlimid and changed to Cytoxan® (cyclophosphamide) for a couple of cycles. While my myeloma numbers were improving, the Cytoxan was dangerous for my cells, So, we changed to a lower dose (10 mg) of Revlimid. Numbers continued to improve and were good enough for me to have the apheresis in August of 2021. Following this procedure, my treatment was Revlimid (10 mg), Ninlaro® (ixazomib) (4 mg), and dexamethasone.  

Living in Remission with Ongoing Challenges

I continue to be in “very good partial remission” (VGPR) as my M-spike is non-quantifiable, and other values are stable. I continue to experience significant side effects of the drugs: Velcade® (bortezomib) had caused styes in my eyes, I have neuropathy in both feet, and intermittent, but significant diarrhea. My current maintenance treatment is: 5 mg Revlimid, 2.3 mg Ninlaro, and 10 mg dexamethasone.

The Bigger Question: Could This Have Been Different?

THE POINT OF STORY: Why did I have to smolder with MGUS for 14 years once the M-spike was found? What effect would immediate treatment have had on my breast cancer diagnosis? Would immediate treatment have eliminated the onset of actual multiple myeloma so that I could have avoided the issues in my leg? Could I have avoided the adverse side effects of styes, neuropathy, and digestive issues from the drugs? All of which have also affected my loving care partner (caregiver), and all the choices he’s had to make as well, not to mention the stress level he’s endured as my care partner.  

The Care Partner (Caregiver) Impact and Quality of Life

Caregiving, too, is difficult. Activities and vacations must be carefully considered due to MY issues with multiple myeloma and the side effects of the drugs. Even walking around the house and going up and down stairs can be challenging. ALL THESE ISSUE HAVE SERIOUS IMPACT ON QUALITY OF LIFE!!! All of which might have been avoided had there been immediate treatment available.

Bonnie’s Call for a Change to Care Plans

There is a definite need to re-evaluate the standard of care and treatment for this disease so that treatment can begin with the first detection. 

About the Advocacy Master Class

At Patients Rising, we believe that patients and caregivers hold the power to move the needle in healthcare and create a better tomorrow for all patients and caregivers by raising their voices! That is why we offer our Advocacy Master Class in collaboration with the International Myeloma Foundation (IMF). The master class is designed to train patients, caregivers, and citizens in the art of healthcare advocacy.     

This course is a comprehensive way for participants to raise their voices and create a better tomorrow for all patients and caregivers.  The IMF, in collaboration with Patient Rising, is spearheading the Advocacy Master Class. For more information on the Advocacy Master Class, email Michael Riotto at [email protected].

About Patients Rising   

Patient Rising’s mission is “empowering every patient in America to advocate for reforms placing them, alongside their doctors, in control of their healthcare choices” with a bold vision: “Healthcare is personal. By partnering with patients, we envision a future where every individual has healthcare options that align with their unique needs and circumstances.” To know more about the advocacy organization, visit PatientsRising.org.