Editor's Note: We share patient stories to raise awareness and reduce isolation in the rare disease community. The experiences described are personal accounts and should not be considered medical advice.

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 (journey #1).

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 MM is NOT treated until it actually manifests, we were in a watchful state with MGUS. WATCHFUL FOR FOURTEEN YEARS, as it turned out.

In the meantime, in July 2008, I was diagnosed with breast cancer (journey #2):   well-differentiated, invasive, 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.  As it turned out, lymphoma was found in my breast tissue (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.

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 MM treatment.

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.

During this time, life continues to happen.  My mother-in-law needed more care, and 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.

My discomfort got 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 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.

Radiation was set up to shrink the back mass, a plasma cytoma, 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.”  Seems not to listen to the brain when it says “step and lift your toes.”  Also, early on, after stress, my leg would feel like jello, 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 MM, interfering with the nerves?

From Day 1 of diagnosis, my MM 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 MM.  I had tremendous stress with this, and 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 on the actual transplant. 

Induction treatment was interesting, as I started with Revlimid, 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 cytoxin for a couple of cycles. As I was improving in my MM values, the cytoxin was dangerous for my cells, so we changed to a lower dose (10 mg) of Revlimid.  Numbers continued to improve, and were good enough to have the apheresis in August of 2021.  Following this procedure, my treatment was Revlimid (10 mg), Ninlaro (4 mg), and dexamethasone.  I continue to be in “very good partial remission” as my M-spike is non-quantifiable, and other values are stable. I continue to experience significant side effects of the drugs: Velcade 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.

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 caregiver, and all the choices he’s had to make as well, not to mention the stress level he’s endured as my caregiver. 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.

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.