How the IMF Helps Multiple Myeloma Patients Thrive

The International Myeloma Foundation (IMF) is the world’s premier myeloma resource for patients. I am one of those patients. Thirteen years ago, I was diagnosed completely by accident in July 2011. I am grateful and blessed to be able to write this blog today. 

Being an Outlier: Surviving with Multiple Myeloma Longer Than Expected 

I am one of the outliers — most myeloma patients don’t survive 13 years. However, due to the many new and developing treatments, patients are living much longer. When I was diagnosed, the average life expectancy was 5 years or less. Now, it’s 8 to 10 plus years. 

When I heard the words “You have an incurable cancer,” my life completely changed. Life suddenly became more real, precious, and valued in ways more than it ever was before. 

Like many myeloma patients, I had never heard of multiple myeloma before diagnosis. I did not have a clue what it was or how it was treated. In short, I was completely scared out of my wits. 

The International Myeloma Foundation Enters the Picture 

That’s where the IMF came into the picture: The organization was an incredible resource of valuable, reliable, and trusted information, as well as a stronghold of support for my family and me. Because not only do You get cancer, but your family is also greatly affected. 

Right after being diagnosed, I knew nothing about myeloma. At that time, a kind nurse brought my wife Monique and me a bunch of booklets to read. Those booklets were published by the IMF. From them, I learned what the disease is, how it is treated, about new and emerging therapies, and so much more. 

I distinctly remember one of those booklets explaining how to understand your labs. You see, in the world of a multiple myeloma patient, labs are frequent and they are extremely complicated to understand. This booklet, Understanding Your Test Results (https://www.myeloma.org/resource-library/understanding-your-test-results), is written simply, in a way you can understand. With it, you gain a grasp on the many different labs that you will undergo during your many varied treatments.  

Moving from Feeling Overwhelmed to Offering Guidance to Other Myeloma Patients 

Today, I coach newly diagnosed myeloma patients. One of the very first things I coach them on is downloading or ordering a copy of the Understanding Your Test Results bookle (https://www.myeloma.org/resource-library/understanding-your-test-results)t. All IMF publications are free of charge. You can download any of them from the website here (https://www.myeloma.org/publications) or order copies to be mailed to you. (https://international-myeloma-foundation.myshopify.com/collections/publications) It’s game-changing. 

 
Through my thirteen years of living with this disease, the IMF has affected me in so many ways. The organization offers so many videos (https://www.myeloma.org/imf-videos), Patient and Family Seminars (https://www.myeloma.org/resources-support/imf-support-network/patient-family-seminars), Regional Community Workshops (https://www.myeloma.org/resources-support/imf-support-network/myeloma-community-workshops), Living Well with Myeloma programs (https://www.myeloma.org/imf-videos?field_imf_tv_blog_category_1=24), and more. Learning about your disease never stops.  

At all these learning opportunities, you learn from the top doctors, nurses, and researchers in the field. They offer the latest and greatest in the realm of multiple myeloma. Knowledge is power, and educated patients can impact their own lives as well as the lives of others. Self-advocacy is paramount to taking care of yourself, and the IMF will guide you through your journey. 

Finding a Myeloma Support Group 

Another indispensable IMF resource is its network of 160+ support groups in North America. I attend the IMF-facilitated Multiple Myeloma Networking Group (MMNG) of Philadelphia (https://philadelphia.myeloma.org/). For many years, I’ve taken part in this incredible group. Today, I am its Co-Leader. Frankly, the experience is unparalleled, with its invaluable camaraderie and ability to share your experience with others like you. You can learn so much from each other as well as take part in supportive friendships and many hugs. Search for a support group in your area here (https://www.myeloma.org/support-groups). 

The IMF: It’s Priceless! 

The support I've received from the IMF is truly unmatched! They provide everything from education and knowledge to guidance, and so much more. However, what I value most over the years are the wonderful relationships I’ve built with the IMF family. And yes, they really are family. Their warm hugs, genuine interest, and care are priceless. 

I’m also excited to share that I am organizing a fundraiser for the IMF: Donate to 13 and Thriving: Continuing to Fight for a Myeloma Cure!   (https://fundraise.myeloma.org/campaign/13-and-thriving-continuing-the-fight-for-a-myeloma-cure/c614605)