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Black Myeloma Health

Quoting Dr. Maya Angelou

“We all should know that diversity makes for a rich tapestry, and we must understand that all the threads of the tapestry are equal in value no matter what their color.”

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Tony Newberne

About Me:

HELLO- to those who are reading my bio. You will feel the positive energy that flows through me, and I hope you receive some after reading. As I experienced enormous health challenges, my motivation to impact lives only grows. My participation and commitment to professional and inspiring patient advocacy organizations include: HealthTree for Multiple Myeloma, Multiple Myeloma Journey Partners, Rare Disease Legislative Advocates, Patients Rising, IMF, and LLS. By speaking at various patient programs, coaching individual patients and providing awareness of services to healthcare professionals, I now contribute in ways that I could have never imagined. And most satisfying is the privilege to coach those facing cancer who need a mentor and role model to not only survive but to thrive. As a proud owner of a personal training/fitness studio, my love and passion for hiking, nature, animals, traveling, vegetable gardening, family, friendships, health, wellness and fitness permeates all aspects of my life. My expertise changes the lives of men and women, young and old, to achieve their optimal levels of fitness and wellness- while improving their outlook on life and sense of wellbeing. And I practice what I preach, adhering to a strict nutritional and fitness regimen. When not spending enormous time and energy in my fitness business or for cancer patient advocacy groups, I enjoy spending time with my partner of 12 years, beautiful Doberman and a good Netflix series. I was admitted to the hospital, and on September 18, 2013, at 39 years old, I was diagnosed with high-risk Multiple Myeloma. I had no idea what multiple myeloma was when I was diagnosed. At that time, my team of doctors had predicted that I would never be able to work out vigorously, much less to resume a personal training business. I accepted the challenge from my docs, LET’s GO!! It has been 7years since my autologous stem cell transplant. I continue with my business focused on total health and fitness. I work out for myself and train others on the same level of intensity as before my diagnosis. I still undergo monthly maintenance chemo—21days on and 7days off—because I’m considered A HIGH-RISK case. I have endured years of continuous rounds of chemotherapy, doses of radiation, months of rehabilitation, two back surgeries, toxic melphalan treatment with an autologous stem cell transplant, and a myriad of blood and platelet transfusions—not to mention back spasms that still haunt me. With strong determination and unwavering support from my faith, family, and friends, I refuse to be defeated. I am living proof that the human mind and body can overcome enormous physical and mental challenges, even in the most trying of circumstances. My goal is to do more than just survive: It is to thrive! And those of you on the other side of your computer screen… Yours should be, too! Believe, Fight, Survive…YOU got this! It is our responsibility as patients to learn as much as we can about multiple myeloma. Gaining knowledge about our disease empowers us to have more meaningful and confident conversations with our healthcare team. In closing, surround yourself with only people who are going to lift you higher. Positive energy only- Don’t cater to negativity. Remember to smile and always protect your peace! And be good to yourself. In good health, Tony

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Joan Rodriguez

About Me:

My name is Joan Rodriguez, I'm going to be 58 this year 2023. I was diagnosed with Mgus in 2003. My symptoms of neuropathy in my feet progressed in 2004. I had to loose my career of 18 year as a Dental Hygienist and become disabled. I was treated even though I had Mgus because my neuropathy was severe. We started with plasma apheresis, which was unsuccessful. Then we moved on to RVD, which made me have severe bone pain from the waist down. I ended up in a wheel chair, then walked with a walker for 3 years and then a cane for 2 years. We also tried Thalidomide. Ultimately, we stopped treating the disease. We just treated the symptoms 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. 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 got a partial response. A few months after the trial ended, I became a active myeloma patient. I had rib and 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 in 2020 had a complete response/remission. 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 replacing vertebrae with rods and screws. Then I received more radiation. I was listed for Cart T therapy. My body started to secrete again. I received my T cells September 2022. I did develop grade 1 CRS syndrome. I have achieved complete response/remission. My wonderful supportive, caring husband, has been there with me the entire journey. He has been my caregiver since our wedding in 2016. I have great faith, and supportive friends. And after all the things I've been through, I still have intentional joy!!

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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!

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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. Recently switched to 5mg instead. 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.

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