By Jennifer Ahlstrom | Posted - May 11th, 2016

 

 

 

 

We're On a Mission to Cure Multiple Myeloma

BY BRIAN MCMAHON mcmahon-familyI lost my mother to multiple myeloma nine years ago. Her diagnosis was especially difficult because not only did she have high-risk disease, but she was diagnosed late. Although I didn’t learn this until after she died, her doctors initially didn’t expect her to live for more than 30 days - even with treatment. But my mother was not your typical patient. She was an oncology nurse with over 30 years experience. I can still remember the phone calls that she made after she was diagnosed as she went out to every pharmaceutical executive, every nurse and every doctor that she knew and asked the same question: “Where is the top research center for myeloma?” Within three weeks, my mom and I were on a plane headed to the University of Arkansas where she would join a clinical trial and ultimately undergo two autologous transplants (where they used her own stem cells). The myeloma patients who came before my mother helped to advance the research and understanding around this horrible disease. That research gave my family and I an extra two years with my mother that we never thought would have been possible. Although I will never get to thank them in person, I will forever be grateful to these patients. And I’m proud of the role that my mother now plays, even if it is a small and anonymous one, in the lives of current and future patients. Ultimately, the path to better treatments - and one day a cure - for multiple myeloma is through clinical trials. But a critical problem exists because only a small number of myeloma patients will ever participate in one. Patients are the missing piece in this puzzle. There are a number of reasons why so few patients enroll in clinical trials. The biggest reasons that we hear from patients are their lack of awareness of clinical trials and the difficulties they face in finding and understanding them. As a four-time cancer caregiver, I know first hand how difficult, time-consuming and confusing it is to search for clinical trials. I felt these same frustrations and knew that there had to be a better way to help patients and their families. That’s what led me to start SparkCures. And I’m happy to announce that we have just launched a major update that makes it even easier for myeloma patients to understand and find their clinical trial matches. Because it can be an intimidating process, I wanted to provide an overview of our updates and the ways that patients can use our system to search for clinical trials. We’ve worked hard to simplify this process - and we are continuing to refine it with the great feedback we’re receiving from the myeloma community. I always love to hear directly from the people we are helping, so if you have any thoughts or feedback, please feel free to contact me directly at brian@sparkcures.com or call us at (888) 828-2206.

CUSTOM CLINICAL TRIAL SEARCH

All clinical trials have a list of conditions that must be met in order for a patient to join. This can include inforsparkcures-custom-searchmation about your myeloma, the prior treatments that you have or have not had, and certain lab values. In our custom clinical trial search, we ask patient-friendly questions to help determine if you meet the conditions for every myeloma clinical trial across the United States. The more questions that you are able to answer, the more accurate your results will be. At the end, we present you with a list of eligible clinical trials that you can contact directly or discuss with your doctor. Start Your Custom Clinical Trial Search

FIND CLINICAL TRIALS BY TREATMENT

sparkcures-treatments

Maybe you’ve just heard about a new treatment that is being developed and you’d like to learn more about it. Or, maybe you want to see what treatments are available in your local area. Our treatments section provides a list of all myeloma treatments that have active clinical trials. We even sort them by closest distance to your home. Find Myeloma Clinical Trials by Treatment

FIND CLINICAL TRIALS BY DIAGNOSIS

You can also search for clinical trials based on your diagnosis. Patients can search through our system for clinical trials for Multiple Myeloma, Smoldering Multiple Myeloma and Monoclonal Gammopathy of Undetermined Significance (MGUS).

FIND CLINICAL TRIALS BY MYELOMA STATUS

Your prior treatment history and your response to those treatments will determine your myeloma status. Many clinical trials are geared towards patients with a specific status. You can find clinical trials for each myeloma status. And if you don’t know the status of your myeloma, we’ve got you covered. Start your custom clinical trial search and we’ll help you determine the status of your myeloma.

FIND CLINICAL TRIALS BY TREATMENT CLASSIFICATION

Are you interested in learning more about what immunotherapy treatments are in clinical trials right now? Or want to see all options that include transplant? SparkCures also provides the ability to find treatments and clinical trials based on treatment classifications.

No matter what your care currently is, it pays to be prepared for your next step. Join them and help build our pathway to a cure.

 
Jennifer Ahlstrom
About the Author

Jennifer Ahlstrom - Jenny A - Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio, HealthTree and the CrowdCare Foundation.

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