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Welcome to the Black Myeloma Health community!

You're not alone in this journey. Multiple myeloma is twice as common in African Americans compared to other racial groups, making up 20% of all myeloma cases, despite Black individuals comprising only 13.6% of the U.S. population. Black patients are also diagnosed at a younger age and often face disparities in care, including delays in diagnosis and limited access to cutting-edge treatments.

However, research show that with proper treatment, Black patients can have better outcomes than other ethnicities. We've been where you are, and through HealthTree University's educational resources, our Cure Hub initiative, and our experienced Coaches, we're committed to helping you not just survive but thrive.

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Joan Rodriguez image

Joan Rodriguez

About Me:

I was diagnosed with Mgus in 2003, at the age of 38. My symptoms of neuropathy in my feet progressed in 2004. I had to give up my career of 18 years as a Dental Hygienist. Initially I was treated even though I had Mgus because my neuropathy was severe. We started with plasma apheresis, which was unsuccessful. Then we moved onto RVD. The Velcade at that time was a long infusion, it made my neuropathy worse. I had severe bone pain from the waist down. I ended up in a wheel chair, then walked with a walker for 3 years. I progressed to walk with a cane for 2 more years. We also tried Thalidomide. Ultimately, we stopped treating the disease. Instead we just treated the symptoms of severe bone pain with narcotics, for 6 years. It was a dark time in life and I had days of being bed ridden. After a severe reaction to one of the narcotics, I weaned myself off all of them. It was hard, lots of pain. Miraculously, I had 7 years of bliss. I even walked without assistance. I still did check- ins and blood draws yearly with my oncologist(MM specialist). In 2016 I progressed to high risk smoldering myeloma. I entered a 2 year clinical trial. I received a partial response. A few months after the trial ended, I became a active myeloma patient. I had rib and back compression fractures and multiple lytic lesions through out my body. I had radiation therapy and started induction for a autologous stem cell transplant. My transplant was in 2020,I achieved a complete response. I relapsed 21 months later. A MRI found a plasmacytoma in my spine and a new lesion in my hip. We determined at that point that I was non-secretory. I had spine surgery December 2021, replacing vertebrae with rods and screws. Afterwards I received more radiation and I was listed for Cart T therapy. I received my T cells (ABECMA) September, 2022. I did develop grade 1 CRS syndrome. I have achieved complete response. Sadly just months later I relapsed again. I started Teclistamab August 2023. This treatment was very tough for me. My wonderful, supportive and caring husband has been there with me the entire journey. He has been my caregiver since we wed in 2016. I have great faith! My circle is filled with a supportive church and loving friends. And after all the things I've been through, I still have intentional joy!! 20 years and counting

Laraine Jones image

Laraine Jones

About Me:

I was diagnosed in June 2011. This diagnosis came after an inquiry by me with my primary care doctor about the fact that I noticed that I was losing weight. My weight loss was noticeably significant. Upon running a bunch of labs, my primary care doctor suspected that I might have MM because of the fact that I was very anemic and I had an elevated M-protein spike. My PCP referred me to a hematologist. Upon meeting with the hematologist, additional tests were done, including a bone marrow biopsy that resulted in a positive MM diagnosis. Of course I was initially in disbelieve of the diagnosis. I kept thinking to myself that perhaps the doctor made a mistake. But eventually I realized that there was noting for me to do but to accept my new reality. This began for me a journey to learn all that I could possibly learn about MM by reading the educational materials published by the MMRF, LLS and the IMF, as well as reading books written by my fellow MM warriors such as the late Pat Killingsworth. I also joined a number of Facebook MM Support groups. I began my first line of RVD therapy in July 2011. This was followed by a SCT in November 2011. Post my SCT, I began Revlimid maintenance in June 2012 and remained on this therapy until June 2016, when I relapsed due to a gradual uptick in my M-protein. I eventually began a new therapy which included Daratumumab + Pomalyst + Dexamethasone. I have been on this therapy since April 2017 and continue to have a very good response to my treatment. I now live a 'new normal' active life able to enjoy activities such as photography, golf, outdoor and indoor biking, swimming, walking as well as being active volunteering with my church and sorority. I have learned so much because of this journey and, needless to say, I now have a far greater appreciation for this thing called life!

Shelly Ford image

Shelly Ford

About Me:

A Journey of Resilience and Hope Hello friends, I wanted to share a personal story that I hope will inspire and connect us all. In September 2021, at the age of 54, I was diagnosed with Multiple Myeloma (MM) after numerous visits to my primary doctor, orthopedic, chiropractor and spine specialist. My journey began with unexplained back pain that eventually led to a spine fracture in February 2021. Despite being under the care of specialists, I experienced additional compression fractures and abnormal ferritin levels, which prompted a referral to a hematologist in August 2021. After further testing, my diagnosis was confirmed in September 2021. I began treatment with Revlimid, Dexamethasone, and Velcade, and I am grateful to share that I achieved a complete response by December 2022 and remain in remission. Although I have decided not to undergo a stem cell transplant (SCT) at this time, I recently sought a second opinion and had a bone marrow biopsy. Throughout this journey, I have learned the importance of researching and educating oneself, and I encourage everyone to ask lots of questions during medical appointments. As a nurse and former administrator for a memory care community, I continued to work full-time during my treatment. Recently, I have taken time off to focus on my health and well-being. I am blessed with two adult children and three wonderful grandchildren who bring joy and purpose to my life. My hobbies, including paper crafting, sewing, and baking, continuing to be a source of comfort and creativity. My grandchildren keep me going, and I cherish every moment spent with them. I look forward to sharing more of my journey with you and assisting you with yours. Together, we can support and uplift each other as a community. Warm regards, Shelly

Shirley Cotton image

Shirley Cotton

About Me:

Diagnosed with high risk, IgA Kappa MM in 2017. Had induction therapy RVD 4 rounds, followed by ASCT in November 2017. Have been in remission since April of 2018 and since then on maintenance chemo of Revlimid 10mg. Switched to 5mg early 2022. Relapsed late November 2022/presently in treatment with Pomalyst, Darzalex Faspro and Dex. Doing well - In June 2023 down to monthly treatment. I am married to George who has stuck with me through all MM related procedures/lab tests/follow-up visits etc. We just celebrated 25 years of marriage. Before marriage I entered college as a music major, graduated with a communications degree but later health care called my name and I answered. I worked in multiple settings as a physical therapist assistant for 33 years Los Angeles and Detroit area-pediatrics, geriatrics, hospitals, out-patient clinics and home care. When asked at 62 "why retire Shirley?" My answer was, "why not? and because I can." (I can be a little sassy at times) I loved caring for people, but it was time to retire. Husband had already retired 10 years prior, so we had the opportunity to travel some for 2 years- cruising mostly. Then came MM. Since then, I characterize my life as a journey, with ups and downs but I am blessed, nonetheless. I am a believer and my faith in God guides me to live one day at a time, listen to my body, listen to my doctors/family and to do my part in the process (meds, exercise, educating myself about MM and certainly ask questions and advocate for myself. Each day I believe I learn and improve in all of those areas sooooo I'm wanting to share with others along the way. To give and receive encouragement on this "journey" is important and being part of this process is a privilege. Looking forward to travel in a month or two.

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