Multiple myeloma is already a rare and complex blood cancer, affecting the plasma cells that help your immune system produce antibodies. But for some multiple myeloma warriors, life becomes even more complicated when paired with AL (light chain) amyloidosis, a rare disease characterized by the buildup of abnormal proteins in organs and tissues. When these two rare conditions intersect, the challenges of diagnosis, treatment, and daily living are amplified, requiring immense resilience and support.
One such warrior, Bobby Jarvis, has shared his inspirational story on our podcast and in his book, God Is Hope Beyond What You See: Living with AL Amyloidosis and Multiple Myeloma (available here). Bobby’s experience offers a beacon of hope for others navigating these rare conditions, reminding us that community, knowledge, and faith can help patients persevere.
In this blog, we’ll explore what life is like living with AL amyloidosis and multiple myeloma, provide an overview of these conditions, and highlight valuable resources like the Multiple Myeloma Research Foundation (MMRF) and the International Myeloma Foundation (IMF) for patients seeking information and support.
What is Multiple Myeloma?
Multiple myeloma is a cancer of the plasma cells, which are a type of white blood cell found in the bone marrow. In this condition, abnormal plasma cells grow uncontrollably and produce excessive amounts of a protein called monoclonal protein (M protein). These abnormal proteins can cause widespread damage, particularly to the bones, kidneys, and immune system.
Common Symptoms of Multiple Myeloma:
Bone pain, often in the spine or ribs
Fatigue due to anemia
Frequent infections due to a weakened immune system
Kidney dysfunction caused by the buildup of M protein
Multiple myeloma is rare, affecting approximately 35,000 people annually in the U.S., and while treatment options have advanced significantly, the disease remains incurable, requiring lifelong management.
What is AL Amyloidosis?
AL amyloidosis is another rare condition caused by the buildup of amyloid proteins—abnormal light chain proteins produced by plasma cells. These proteins misfold and deposit in various organs, disrupting their normal function. Unlike multiple myeloma, which primarily affects the bones and marrow, AL amyloidosis can damage critical organs such as the heart, kidneys, liver, and nervous system.
Common Symptoms of AL Amyloidosis:
Shortness of breath (heart involvement)
Swelling in the legs (kidney or heart involvement)
Numbness or tingling (nervous system involvement)
Unexplained weight loss
AL amyloidosis is even rarer than multiple myeloma, with only about 4,000 cases diagnosed annually in the U.S. Its severity often depends on which organs are affected, and early diagnosis is crucial to prevent irreversible damage.
The Intersection: Living with AL Amyloidosis and Multiple Myeloma
When a patient is diagnosed with both multiple myeloma and AL amyloidosis, it presents unique challenges. Both conditions stem from abnormal plasma cells, but the organ damage caused by amyloidosis can complicate the treatment of myeloma. For example:
Treatment Challenges:Treatments for multiple myeloma, such as chemotherapy, immunotherapy, and stem cell transplants, must be carefully balanced to avoid worsening organ damage from AL amyloidosis. For instance, certain chemotherapy agents can exacerbate heart or kidney issues.
Diagnosis Delays:Because AL amyloidosis and multiple myeloma share overlapping symptoms, such as fatigue and kidney dysfunction, diagnosing both conditions can take time. Misdiagnoses or delays can lead to more severe organ damage.
Emotional and Physical Strain:Managing two rare conditions simultaneously requires significant mental and physical resilience. Patients often face uncertainty about treatment outcomes and long-term prognosis.
Bobby Jarvis’ Inspirational Story
As shared in Bobby Jarvis’ podcast episode and his book, he exemplifies the resilience required to navigate both AL amyloidosis and multiple myeloma. Bobby highlights the importance of faith, community, and staying informed as critical tools for coping with the challenges these conditions bring.
His story serves as a reminder that while the road may be tough, support systems and resources are vital to living well with these conditions.
Treatment Options for AL Amyloidosis and Multiple Myeloma
Treating both AL amyloidosis and multiple myeloma requires a personalized, multidisciplinary approach. The goal is to control the plasma cell overproduction while managing the organ damage caused by amyloidosis.
Common Treatment Strategies:
Chemotherapy:Drugs like bortezomib (Velcade) and cyclophosphamide are used to target abnormal plasma cells. These are effective for both conditions but must be administered carefully, especially if the heart or kidneys are affected by amyloidosis.
Immunotherapy:Monoclonal antibodies such as daratumumab (Darzalex) help the immune system target cancerous plasma cells. These therapies are often used in combination with chemotherapy.
Stem Cell Transplantation:For eligible patients, an autologous stem cell transplant (using the patient’s own stem cells) can be a powerful treatment option. However, organ damage from amyloidosis may disqualify some patients from this procedure.
Supportive Care:
For heart involvement: Medications like diuretics and beta blockers can manage symptoms like shortness of breath and swelling.
For kidney involvement: Dialysis or medications to control protein levels in the blood may be necessary.
For quality of life: Pain management, physical therapy, and counseling are vital components of care.
The Role of Clinical Trials
For patients with AL amyloidosis and multiple myeloma, clinical trials offer hope for accessing innovative treatments. Emerging therapies, such as CAR-T cell therapy and new monoclonal antibodies, are being studied in clinical trials and may provide better outcomes for patients with dual diagnoses.
Organizations like the Multiple Myeloma Research Foundation (MMRF) and the International Myeloma Foundation (IMF) maintain updated lists of clinical trials and can help patients connect with opportunities to participate.
Resources for Patients and Caregivers
Navigating life with AL amyloidosis and multiple myeloma is no easy task, but numerous organizations and support groups are available to provide guidance, resources, and community.
1. Multiple Myeloma Research Foundation (MMRF)
The MMRF funds research, supports clinical trials, and provides educational resources for patients. Their website offers tools to find specialists and access the latest treatment updates.
2. International Myeloma Foundation (IMF)
The IMF provides a wealth of information, including webinars, support groups, and detailed guides for patients and caregivers. Their focus on education ensures that patients stay informed about their options.
3. Amyloidosis Foundation
This organization focuses specifically on amyloidosis, offering financial grants, educational resources, and support networks for patients and caregivers.
4. Patient Connect by Polygon Health
Patient Connect is an online tool that connects multiple myeloma patients with others facing similar journeys. It’s a powerful way to share experiences, seek advice, and build a supportive community.
Living with Resilience and Hope
Although living with AL amyloidosis and multiple myeloma presents undeniable challenges, stories like Bobby Jarvis’ remind us that hope and resilience are always possible. By staying informed, building a strong support network, and exploring the latest treatment options, patients can navigate these rare conditions with strength and purpose.
If you or a loved one is facing a similar diagnosis, know that you’re not alone. Leverage the resources available through organizations like MMRF and IMF, and don’t hesitate to seek out clinical trials or connect with others on platforms like Patient Connect. Together, the multiple myeloma and amyloidosis communities are working toward better outcomes and brighter futures.
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