From MGUS to Multiple Myeloma Remission
Gerry
State: Michigan
Congressional District:
Diseases
Blood Disease, Cancer
Issues and Challenges
Gerry has encountered: Access to Expert Providers, Copay Issues, Financial Assistance, Oral Parity
My Story
My story began sometime around 2014 when my PCP asked me to see a hematologist following abnormal bloodwork results. After more tests, I was diagnosed with MGUS (Monoclonal Gammopathy of Undetermined Significance), a precursor to multiple myeloma which is a blood cancer. After a couple of years, the MGUS got worse and turned into smoldering multiple myeloma which required blood testing every 3 months to monitor the disease. In October 2018, I began needing monthly treatments. I should also mention that I was currently going to a big-name hospital that had a cancer center and oncologists who were specialists in the field of multiple myeloma. A second opinion at another cancer center agreed with the diagnosis.
The standard of care at that time was RVd, (Revlimid, Velcade, dexamethasone) which I took for about 5 months to prepare me for a Stem Cell Transplant. After the required hospital stay for the transplant and the 100 day at-home recovery period, I went on monthly maintenance of Revlimid. This kept the MM under control. But after about a year, the disease plateaued and was not getting any better. A switch to Ninlaro was no better. So in late 2020, the doctor put me on monthly Darzalez injections and Pomalyst capsules for 21 out of 28 days. Within two or three months, I reached what is described as sCR or stringent complete response where local hospital blood tests could not detect any myeloma cells. I have remained sCR for almost 5 years on this treatment.
From the very beginning of this journey, I have been fortunate to never have had any of the typical symptoms of multiple myeloma; no bone fractures or lesions, no kidney problems, no anemia, no high calcium in my blood. And out of all of the drugs I have taken, the ONLY side effect I have ever had was a small stroke after my first dose of Revlimid in late 2019. I fully recovered from that stroke very quickly.
I was also fortunate enough to have received grants to cover my prescription drugs throughout my journey, and with my straight Medicare and my AARP Medigap insurance, the financial impact has been minimal despite the costs of oral medications totaling $25,000 per month.
With telling my story, I hope to advocate for greater awareness and knowledge of multiple myeloma among primary care physicians. I want to encourage anyone diagnosed with MM, to seek out and see a MM specialist and to obtain a second opinion from another MM specialist. Don’t hesitate to explore and apply for grants to help pay for the expensive MM drugs. And please advocate for the Drug Parity Law to be passed in Michigan (or at the federal level) to reduce the out-of-pocket costs for the oral prescription drugs used to treat MM.
My Motivation and Inspiration
My motivation is to inspire other multiple myeloma patients to seek the advice of an expert myeloma doctor, get second expert opinions, and seek out sources of financial assistance available to offset the high costs of the oral prescription drugs.
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