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Multiple Myeloma Warrior Journey

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Peter's Multiple Myeloma Journey

February 25, 2024

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Peter shares his multiple myeloma journey on our multiple myeloma warrior podcast. Prior to being diagnosed, Peter was a licensed physiotherapist located in Central Florida.

Now in remission (due to taking Car T Cell Therapy Abecma), Peter runs IBH Counseling as a licensed physiotherapist. Peter received a Stem Cell Transplant and received Abecma (Idecabtagene vicleucel) during his journey to battle multiple myeloma.

The Beginning

A few years back, in 2018, Peter first realized something wasn’t right, when he experienced a twinge in his rib cage during a family trip to see his wife in Boston. Initially, he brushed it off. 
 

Soon after the pain in Boston, he became concerned as the discomfort persisted. After the results from the initial tests came back, Peter was urged to see a specialist as soon as possible. Bone density scans revealed that his bones were like those of an 80-year-old, alarming news for someone only in their 50s. His doctor used the term ‘metastatic cancer,’ but the reality didn’t fully register with Peter. 

He felt a numbness as the gravity of the situation hit him. 

He kept wondering, 'Why me?' despite being a healthy and active adult. Amidst the confusion, Peter found himself unsure of how to handle the emotional aspect of his situation. As a trained therapist, he decided to reach out to a trusted colleague for support before even sharing the news with his wife. The conversation with his colleague brought him to tears, highlighting the overwhelming emotions that accompany a cancer diagnosis.

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Building a Support System

After sharing the news with his wife, they researched and joined support groups to gather more information and find comfort in the experiences of others. Peter credits his support system with a vital role in his journey. Through confiding in his wife, older brother, and colleagues, the unwavering support Peter felt gave him the comfort of not feeling alone. One active and supportive community is the Multiple Myeloma Warriors Community on Facebook.

After a referral to Dr. Al-Hazzouri, at Florida Cancer Specialists, who Peter speaks highly of, the next step in Peter's journey was a PET scan, which revealed multiple areas in his body that were lit up, indicating potential cancerous activity. After waiting to confirm the diagnosis, Peter and his wife made the difficult decisions of how to share the diagnosis with family and close friends. While they knew the reality, the decision was not taken lightly and sharing accurate information was of utmost importance.

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Despite the emotional challenges Peter and his family faced battling multiple myeloma,  Peter now found ways to channel his experience into helping others: helping others. As a licensed psychotherapist, he now specializes in working with cancer patients, finding it rewarding to give back to the community. Additionally, he serves as a multiple myeloma coach, providing pro bono coaching to others facing the same diagnosis.

 

Peter's journey with multiple myeloma serves as a reminder of the importance of early detection and seeking medical attention when something feels off. His story also highlights the emotional toll that a cancer diagnosis can have on individuals and their loved ones.

 

However, through his work and dedication to helping others, Peter has found a way to turn his experience into something positive.

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The Importance of Staying Positive

 

Throughout his nearly five-year journey with multiple myeloma, Peter has been relentless in keeping a positive outlook. He found strength in the encouragement of his colleagues, the unwavering support of his wife and brother, and the shared experiences within social media support groups. By forging connections with those who truly understand his struggle, Peter has crafted a sanctuary of belonging and reassurance. Despite the daunting statistics that shadowed his early research, he has sustained a positive spirit, buoyed by the community he's built around him and the love of his family.

 

Staying positive has also been a crucial aspect of Peter's journey. Despite the daunting statistics he encountered when researching his diagnosis, he chose to focus on the positive aspects of his life. He continued to engage in activities that brought him joy and surrounded himself with loved ones who uplifted him. Peter's ability to maintain a positive mindset has not only helped him cope with the challenges of multiple myeloma but has also allowed him to gain personal growth through his experience. 

The Significance of Awareness

 

Peter mentions that when he was first diagnosed, he was unaware of the various treatment options available. While this initial lack of knowledge was scary due to the uncertainty it brought, he quickly realized there are always treatment options available.  What gave Peter hope during his journey was hearing stories of others who had been through similar experiences and were living fulfilling lives despite their diagnosis. 

 

He mentions the importance of not relying solely on facts found online, as it may not always be accurate. Instead, he found comfort in hearing firsthand accounts from people who had successfully navigated their own journeys with multiple myeloma.

 

Peter emphasizes the importance of being involved in his own care and having a supportive care team. Throughout Peter’s journey, his primary physician, local oncologist, and the team at UF Health Shands Hospital have collaborated to create his treatment plan. This open communication and access to information helped alleviate his fears and allowed them to make informed decisions.

 

Peter's wife, Alicia, also played a crucial role in gathering information and supporting him throughout his journey. Her knowledge and involvement in his care were invaluable, and she was even mistaken for a nurse due to her extensive knowledge. Having a caregiver like Alicia is essential in navigating the complexities of a cancer diagnosis and treatment.

 

A Message of Gratitude

 

One aspect of Peter's journey with multiple myeloma that stands out is his deep gratitude for the caregivers involved in his cancer treatment. Peter refers to the caregivers as warriors, highlighting their dedication and commitment to his well-being. He includes his spouse, support team, physicians, and all the support staff as the true warriors in his battle against cancer. He expresses his gratitude and admiration for the special practitioners involved in his cancer treatment, from the individuals who bring him food to the physicians and everyone in between. 

 

Peter acknowledges that cancer treatment requires a team effort and that each member of the care team plays a crucial role in his journey.

CAR T Cell Therapy- A New Hope

 

CAR T Cell therapy offers hope to patients like Peter who are diagnosed with multiple myeloma. Peter's journey with the disease showcases the power of this innovative treatment and its potential to change lives.

 

Peter's treatment journey began with various medications and chemotherapy, but his numbers were not decreasing effectively. Given the situation, his care team decided to pursue CAR T therapy. Despite the challenges and setbacks he faced, Peter maintained complete faith in his care team and their expertise. This unwavering trust allowed him to embark on the next stage of his treatment with hope and optimism.

 

After stem cell transplant, Peter's numbers initially responded well, but eventually started going back up. This led him to Moffitt Cancer Center, where he was accepted into the CAR T cell therapy program for multiple myeloma . The rigorous testing process ensured that he was a suitable candidate for the therapy. 

 

CAR T cell therapy offered Peter renewed hope. He researched the treatment and discovered that it represented the future of cancer treatment. The procedure itself was conducted with utmost care and precision, with a team of professionals ensuring his safety throughout.

 

During his CAR T cell therapy treatment, Peter experienced fatigue as the main side effect. However, he found it manageable compared to the fatigue caused by his cancer. His ribs were healing, and his pain levels were becoming more manageable. After completing CAR T therapy, Peter had no additional treatment for several months, providing him with a much-needed respite.

 

Peter's journey with CAR T therapy showcases the transformative potential of this innovative treatment. It offers hope to patients who have exhausted other treatment options and are in need of a breakthrough. The personalized nature of CAR T therapy, using a patient's own cells, makes it a promising avenue for cancer treatment.

 

CAR T therapy offers hope to patients like Peter who are battling multiple myeloma. It represents a cutting-edge treatment option that has the potential to change lives. 

 

Ask Questions

 

Peter emphasizes the significance of staying curious and asking questions. He believes that being curious about different treatment options and always seeking information is crucial in making informed decisions about one's health. Peter advises listeners to write down their questions and bring them to appointments, as anxiety and nervousness can sometimes make it difficult to remember everything. He also highlights the importance of having a support system, such as his wife, who actively participates in his medical care and helps ensure that all questions are answered.

 

Peter encourages patients to seek additional opinions if they are not comfortable with their current practitioner. He emphasizes the need for patients to advocate for themselves and take an active role in their healthcare decisions. By seeking multiple opinions, patients can gain different perspectives and potentially discover alternative treatment options that may be more suitable for their individual needs.

 

As Peter states, it is critical to have faith in one's medical team to provide emotional support and help alleviate the intensity of the unknown. He believes that a strong doctor-patient relationship is critical for healing and emphasizes the importance of trust in the medical team's expertise and ability to provide timely and thorough responses to patient inquiries.

 

Believable Hope

 

Peter acknowledges that his journey has been challenging, with multiple treatments and uncertainties. However, he firmly believes that if one treatment doesn't work, there will always be something else out there. Believable hope is critically important in the journey of cancer treatment and recovery. This belief in the possibility of finding effective treatments and solutions is what drives Peter to continue his fight against the disease.

 

Through the perspective of believable hope, Peter expresses gratitude for every day he has and sees each day as a gift. Peter believes that having a place to share one's story and connect with others who understand can be therapeutic and empowering. Fear, anxiety, and stress that come with a chronic disease like multiple myeloma are natural, and the importance of mental health amidst a cancer journey cannot be overstated. It is critical to create a strong support system and can often be helpful to turn to mental health professionals. And, as Peter shares, one’s own attitude of believable hope can make the greatest difference.

 

Peter's experience with multiple myeloma highlights the critical importance of believable hope in the cancer journey. Maintaining a positive mindset, seeking support, and being proactive in one's healthcare are all essential elements of navigating the challenges of cancer treatment and recovery. Peter's story serves as an inspiration for patients to stay informed, trust their medical team, and embrace the support available to them. With believable hope and a strong support system, patients can face their journey with resilience and determination.


If you liked learning about Peter’s journey, check out our podcast where we invite people who have received CAR T, or have not received CAR T, who battle multiple myeloma.

Other Blog Posts:

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