Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (2023)

Randi S.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (1)

51, from Fort Lauderdale, FL
Initially Diagnosed: 2016
Current Diagnosis: Relapsed, Refractory
Treatment Received: SCT, Cytoxan, Revlimid, Velcade

Upon Randi’s diagnosis, she conducted an abundance of research and tried to keep an optimistic mindset. She decided to pursue the treatment plan that had a more holistic approach, and if it came to a point in which she needed a transplant, she wanted to pick the environment that felt the most nurturing. Randi knew that there were many steps and lifestyle changes that she had to make towards her healing. Her diagnosis affected her in medicinal, environmental, holistic, mental, personal and spiritual ways. She continues to maintain her super healthy lifestyle and practices good dietary habits. It was difficult for Randi to believe that she had cancer, as she had to learn to recreate herself and was grateful to be alive. Randi is very active in the multiple myeloma community and participates in races all over the country. She told her doctors that she was willing to do her homework to propose to them ways in which she could slowly return to participating (to a certain degree) in some of her active hobbies and most importantly, she has learned to listen to her body.

(Video) FAQs From the 2022 American Society of Hematology Annual Meeting

Evelyn H.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (2)

62, from the Houston, TX area
Initially Diagnosed: 2014
Current Diagnosis: recently completed 2nd Autologous Stem Cell Transplant
Treatments Received: bortezomib, dexamethasone, lenalidomide , carfilzomib , daratumumab, and pomalidomide

Evelyn has been living with MM for almost nine years. What she has learned from this was to expect the unexpected. She had her first relapse in January of 2021, which was unexpected. After completing treatment she was back into a complete response. What she has found helpful to persevere along the journey was a strong support team – in healthcare, spiritual aspects, family and circle of friends. She believes it’s imperative to have the entire team working in tandem. Developing short term and long term treatment plans with her healthcare team, and allowing room for adjustment as needed has been a part of process. Evelyn looks forward to helping others navigate their unexpected.

Tricia C.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (3)

59, from Rocky Hill, CT
Initially Diagnosed: 2014
Current Diagnosis: In Remission
Treatment Received: SCT, RVD, IVIG, Clinical Trial Participant

In 2005, Tricia was dealing with extreme fatigue. Her primary care physician ordered routine bloodwork and found that she was severely anemic. She was then sent to a local hematologist who did a bone marrow biopsy. At this time she was diagnosed with smoldering myeloma after receiving a second opinion. It wasn’t until 2014 that she was diagnosed with active Multiple Myeloma. Tricia participates in MMRF events in hopes of furthering multiple myeloma research. She enjoys sharing her personal experience with other myeloma patients and is looking forward to helping others understand this disease better and find resources for them that will help with their personal myeloma journey.

Lisa B.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (4)

37, Trumbull, CT
Initially Diagnosed: MGUS 28, MM 30
Current Diagnosis: Multiple Myeloma-stable
Treatment Received: Revlimid, Velcade, Dex, Autologous SCT, Pomalyst, Carfilzomib @ MSK in NY

Lisa was diagnosed with MGUS at age 28 - discovered during a routine physical exam showing high protein levels in her bloodwork, but she was otherwise asymptomatic. After 18 months, MGUS developed into MM, requiring immediate treatment at age 30. Dealing with cancer at such a young age was shocking, challenging and unrelatable/lonely, but with a strong support system, cancer mentors, great doctors/treatment, The MMRF, a positive outlook, education, faith and perseverance she reached complete remission after transplant and lived a very 'new normal' life, still able to balance career, life, and her condition. Lisa relapsed after about 5 years, but her condition is currently stable. Lisa wants to help other cancer patients by mentoring, sharing experiences, and offering resources, but most importantly helping them realize they are not alone.

Ethan H.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (5)

28, from Worcester, MA
Initially Diagnosed: 2013
Current Diagnosis: In Remission, Multiple myeloma with solitary plasmacytoma
Treatment Received: Radiation, Bone replacement, SCT, VRD, Ninlaroe

I was diagnosed with multiple myeloma seven years ago at the age of 22. It started with pain in my hip that was quickly diagnosed as cancer. I understand the disruption to “normalcy” that a multiple myeloma diagnosis may have caused for you. I’ve made it my mission to make a difference for others dealing with this disease. This time period can be filled with uncertainty, but the thing that has always helped, whether it was the day of the diagnosis or currently, is the importance of having people in your life that are there for you.

Casey Joe W.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (6)

36, from Acworth, GA
Initially Diagnosed: 2008
Current Diagnosis: In Remission
Treatment Received: Bone replacement, SCT, Velcade, Revlimid, Ninlaro

I was diagnosed with Multiple Myeloma when I was 26 years old. I was a bit lost at first because I was very young when I received this diagnosis, but I soon realized that everyone experiences it differently. Since my diagnosis, I’ve had to cut back on a lot of physical things I used to do, like exercising. I’ve learned how to manage my energy and put it towards things that matter most to me. I am very motivated to share my experiences with others battling this disease and hope to empower other patients during their journey.

Annamarie K.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (7)

50, from Norwalk, CT
Initially Diagnosed: Husband JP in 2014
Current Diagnosis: Relapsed, Refractory

My husband, JP, was diagnosed with multiple myeloma six years ago at the age of 48. We do whatever we can to support the MMRF and to keep a positive mindset about our situation. It has been a journey from day one, but I feel we are confident going forward. I’m thrilled to be at this point in our lives to be able to help others. I’m so appreciative of the help we’ve received, and I’m grateful for this opportunity because we understand how this journey with multiple myeloma can be overwhelming.

Carmen P.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (8)

52, from Little Silver, NJ
Initially Diagnosed: 2002
Current Diagnosis: Relapsed, Refractory
Treatment Received: Tandem SCT, Allogenic SCT, RVD, Clinical Trial Participant

Carmen’s experience leading up to her diagnosis was unique in that she did not present any symptoms and was diagnosed via pre-pregnancy bloodwork. It revealed that she had low platelets and was anemic. At the time, Carmen was diagnosed with smoldering multiple myeloma, as she did not meet the criteria to be diagnosed with active multiple. Carmen’s multiple myeloma status continued to be smoldering for a total of 8 years until December 2010. Carmen strives to stay positive and maintain a healthy and active lifestyle. She has persevered and embraces the changes that her diagnosis has caused in her life.

Andrew G.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (9)

67, from Harrisburg, PA
Initially Diagnosed: 2013
Current Diagnosis: In Remission
Treatment Received: SCT, RVD, Revlimid for maintenance

Andrew’s biggest challenge after receiving his diagnosis was educating himself on this disease. His healthcare team embraced his determination to educate himself, which gave him additional confidence in his doctors. Andrew has kept a positive outlook and is self-motivating. One motivating factor he had was retirement; although, he only wanted to semi-retire. He remains an active grandfather to his two young grandsons and helps his daughter by babysitting them. He feels that his multiple myeloma journey has made him a better person in that he is more compassionate and understanding.

Jessie D.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (10)

54, from Vermillion, SD
Initially Diagnosed: 2016
Current Diagnosis: Smoldering
Treatment Received: None at this time

Jessie is determined to not let her diagnosis define her and dominate her life; therefore, she has taken control of the situation by continuing her research and education on her diagnosis and learning the importance of practicing self-awareness and self-advocacy for her own health. She has become dedicated in her efforts to incorporate being health-conscious in her lifestyle. Prior to her diagnosis, Jessie’s sense of self was connected to her career. Now, she's revisiting this and learning how to reinvent herself and the lifestyle she plans to lead.

Jeffery G.Multiple Myeloma Research Foundation (MMRF Patient Webinar) 1.24.23 - themmrf.org (11)

59, from Chicago, IL
Initially Diagnosed: 2010
Current Diagnosis: Relapsed, Refractory
Treatment Received: Tandem SCT, Ninlaro, Revlimid, Velcade, Pomalyst, Darzalex

Jeffery stresses the importance of staying motivated and positive. He manages his lifestyle and nutrition to do what he can to have a full and active life. He is determined to continue his active hobbies. Before and after his diagnosis, he has continued to participate in his hobbies as a marathon runner, hunter, fisherman, and hiker. He climbed Mt. Kilimanjaro earlier this year and is taking a summer vacation with his wife to Montana to backpack and hike. Doing the things he loves helps him feel empowered against his disease. He also has found strength in becoming an active member of the multiple myeloma community. Jeffery has been extensively involved in the "mother ship" of MMRF. Jeffery is passionate about raising awareness of MMRF and helping others navigate their way and to find their path.

Top Articles
Latest Posts
Article information

Author: Amb. Frankie Simonis

Last Updated: 04/09/2023

Views: 6249

Rating: 4.6 / 5 (56 voted)

Reviews: 87% of readers found this page helpful

Author information

Name: Amb. Frankie Simonis

Birthday: 1998-02-19

Address: 64841 Delmar Isle, North Wiley, OR 74073

Phone: +17844167847676

Job: Forward IT Agent

Hobby: LARPing, Kitesurfing, Sewing, Digital arts, Sand art, Gardening, Dance

Introduction: My name is Amb. Frankie Simonis, I am a hilarious, enchanting, energetic, cooperative, innocent, cute, joyous person who loves writing and wants to share my knowledge and understanding with you.