Kelly Guynup was diagnosed with multiple myeloma when she was 33 years old. This was after six to nine months of not feeling well. She started to think something was seriously wrong. At the time, her children were ages 2 and 5. Flash forward seven and a half years, and now they are 9 and 12 years old. Kelly just celebrated her 41st birthday (her 8th birthday since diagnosis)! Kelly lives in a rural area of upstate New York. She gets most treatment locally, but for CAR T and other past treatments, she went to see a myeloma specialist at Mass General.
In this article, we will explore Kelly's multiple myeloma journey, from her initial diagnosis to her current state of remission, and the lessons she has learned along the way for people fighting with multiple myeloma to improve their health journey. If you want to watch her full story, check out her podcast episode.
How Kelly’s Journey Began
Kelly's journey began when she started experiencing symptoms that made her suspect something was wrong. With children aged two and five at the time, the diagnosis with multiple myeloma was particularly daunting. The news was devastating, but Kelly's
determination to fight the disease became her guiding principle.
When people are first diagnosed with multiple myeloma, some common questions include:
1/ How to reverse multiple myeloma?
2/ What is multiple myeloma prognosis?
3/ What are the symptoms of multiple myeloma?
4/ What is the 10-year survival rate for multiple myeloma?
5/ How to test for multiple myeloma and how to diagnose multiple myeloma?
Throughout the podcast we recorded with Kelly, Kelly stresses the importance of finding a multiple myeloma specialist at Mass General. If you are wondering where to get started when looking for centers of excellence with multiple myeloma specialists, check out Patient Connect! Patient Connect allows you to plot yourself on our map, share your patient journey with others, and find multiple myeloma patients and centers of excellence nearby you. You can even find patients with similar healthcare journeys in minutes.
Right After Diagnosis
Once her multiple myeloma diagnosis was confirmed, Kelly took immediate action. She called her husband to share the news and went to a local oncologist. Thankfully, Kelly's oncologist recommended seeking a second opinion from a multiple myeloma specialist in a major city, which led her to Mass General Hospital.
Something Kelly really wants multiple myeloma patients to know, is that Getting a second opinion can be a vital step for multiple myeloma patients. In Kelly's case, it allowed her to connect with Dr. Nupur Raje, a leading expert in multiple myeloma. This relationship proved invaluable as they developed a treatment plan tailored to her needs. If you are thinking of where to find information, check out Patient Connect!
Understanding Treatment Options
Kelly's treatment journey included several phases, starting with induction therapy. She underwent four cycles of Carfilzomib, Revlimid, and Dexamethasone to prepare for a Stem Cell Transplant. This treatment approach is common for patients with multiple myeloma and aims to reduce the cancer burden before more intensive therapies.
Throughout her treatment, Kelly faced challenges, including fatigue and the psychological burden of living with cancer. If you are going through challenges during your multiple myeloma journey, just know that you are not alone. There are even Facebook groups where you can chat with other multiple myeloma patients and gain insight. However, Kelly maintained a positive outlook, which played a significant role in her mental health and overall resilience.
As part of her ongoing treatment, Kelly was introduced to CAR T-cell therapy. This innovative approach involves modifying a patient's T-cells to target cancer cells more effectively. Kelly's myeloma specialist had prepared her for this option, emphasizing its potential benefits.
Kelly participated in a clinical trial for CAR T-cell therapy in November 2021. Unfortunately, her initial experience was not as successful as hoped. However, she remained optimistic and continued her treatment plan, which included maintenance therapy with Revlimid and Velcade.
In November 2022, Kelly underwent a second round of CAR T-cell therapy, this time with promising results. After this treatment, she achieved remission, marking a significant milestone in her journey. Kelly's story is a powerful reminder of the importance of perseverance and hope in the face of adversity.
Building a Support System
The emotional toll of a cancer diagnosis can be overwhelming. Kelly shared her struggles, including moments of fear and uncertainty about the future. She emphasized the importance of maintaining a positive mindset, both for herself and for her family. Her children were a constant motivation to stay strong and focused.
Kelly's support system played a crucial role in her multiple myeloma journey. She emphasized the importance of surrounding oneself with caring individuals who offer encouragement and assistance. For Kelly, it was her husband, her family, her care team, and friends. For you, whether it was family, friends, or fellow patients, having a strong support network can help you navigate the emotional and physical challenges of treatment.
Resources and Community Support
Kelly found solace in online communities where she could connect with others facing similar challenges. These platforms provided her with valuable information, emotional support, and a sense of belonging. Sharing experiences with others who understood her journey was instrumental in her healing process.
Advice for Others Facing Similar Challenges
For those diagnosed with multiple myeloma or any cancer, Kelly offers several key pieces of advice:
Connect with Other Patients: Patient Connect allows you to meet people near you, and with similar healthcare journeys.
Seek a Specialist: Find a myeloma specialist who understands your unique situation and can provide tailored treatment options. Not a local oncologist.
Stay Informed: Educate yourself about multiple myeloma and treatment options. Knowledge is empowering, especially as new treatments become approved.
Embrace Support: Don't hesitate to accept help from friends and family. Building a support network is essential. It could be on an online Facebook community, Patient Connect, or even an offline support group.
Maintain Positivity: Cultivating a positive mindset can significantly impact your mental and emotional health.
Advocate for Yourself: Be proactive in your care. Ask questions and stay engaged with your treatment plan. Do research to be most informed.
Conclusion: A Message of Hope
Kelly's journey with multiple myeloma is a testament to the power of resilience, hope, and community. Her story highlights the importance of early intervention, ongoing support, and maintaining a positive outlook in the face of adversity. As she continues to thrive in remission, Kelly serves as an inspiration to many, proving that with determination and the right resources, it is possible to overcome the challenges of multiple myeloma.
For more information on multiple myeloma and support resources, consider reaching out to local cancer organizations or check out Patient Connect.
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