Multiple Myeloma and The Researcher’s Restless Research for Resources

The shooting pain left me frozen in place, when I stepped back on my left heel. It shot from my left hip, inward toward my spine. I knew that to mitigate my embarrassment from yelping in front of a group of friends, I’d have to gingerly move my left foot forward and attempt to stay upright while the pain fought to bring me to my knees. This pain had been progressively worsening over nearly two years. A plasmacytoma (tumor) that had “eaten away” one of my vertebrae, was the culprit. This spine tumor wasn’t my only problem…it was dangerously close to my spinal cord and had multiple friends (lytic lesions) scattered throughout my skeleton, including my spine, ribs, skull, and other random places. Multiple myeloma. An incurable blood cancer. A cancer of the plasma cells in the bone marrow. I knew nothing about it.

As a researcher, and with the help of high-dose steroids that fueled my insomnia and decimated myeloma cells, I’ve spent these last 7 years since diagnosis pouring over websites, attending seminars, consulting with myeloma specialists, conducting interviews with myeloma physicians and scientists, participating in renowned conferences, such as American Society of Hematology (ASH) and others, meeting with patients, analyzing clinical trials, serving on Scientific and Medical Affairs committees, advocating in the biotech and pharma industry, and volunteering as a fierce patient advocate, to better understand my disease.

In an effort to help patients and their loved ones understand their disease and become empowered advocates, I have compiled a brief list of my most used resources (not a comprehensive list and in no particular order…I’ll keep my favorites to myself). These resources are reliable and updated regularly. I hope it helps you. Be well. And be empowered.

1. Patient Empowerment Network (powerfulpatients.org)

I volunteer with PEN as an Empowerment Lead and believe in their message of empowering patients to become their own best advocates. PEN is a pan-cancer organization that provides resources to patients for multiple types of cancer, including multiple myeloma.

Resources: Videos, Patient Panels with Q&A segments, Activity Guides

2. International Myeloma Foundation – IMF (myeloma.org) Resources

Infoline: 1-800-452-CURE(2873). The Infoline is staffed with personnel who frequently answer questions about myeloma, how to find a specialist, events for myeloma patients, etc. If they are unable to answer a question, they will direct you to an appropriate resource.

Myelo: The IMF’s AI Assistant, ready to answer your questions based on data collected from the IMF website, which may include information on treatments, clinical trials, support resources, and many other tidbits.

Blogs: Excellent, up-to-date blogs on the latest in myeloma research, clinical trials, current events related to cancer, and advocacy.

Support Groups: The IMF sponsors support groups throughout the country. Review the list to see if there is one near you. Talking with other myeloma patients can be educational, comforting, reassuring, and empowering. If there is not a support group near you, contact the Infoline, or send an email to any group, as most of them offer virtual attendance from anywhere in the country.

EVENTS: This tab directs you to upcoming events. Go to “myeloma.org” and click on “Events” tab to register. Workshops and seminars bring together patients and myeloma specialists for education and connection.

Summary of 2025 events for IMF (myeloma.org)

• Saturday, June 21, 2025: DENVER In-Person Regional Community Workshop (one day)
• Saturday, August 9, 2025: SEATTLE In-Person Regional Community Workshop (one day)
• Friday-Saturday, August 15-16: LOS ANGELES Patient and Family Seminar (two days)
• Saturday, September 27: Waltham, MA In-Person Regional Community Workshop (one day)
• Friday-Saturday, October 3-4: CHICAGO Patient and Family Seminar (two days)
• Saturday, November 15: RALEIGH, NC: In-Person Regional Community Workshop (one day)

Watch for upcoming Facebook Live events with myeloma specialists and additional workshops and seminars.

3. Healthtree (healthtree.org) Resources

Myeloma Coach program: This program allows you to request a “coach” to provide information, support, resources, and encouragement while living with myeloma. You can choose coaches who have experiences similar to your own and/or expertise in particular areas, such as Stem Cell Transplant (SCT), financial resources, and specific treatments. There is no limit to number of coaches requested.

Leif (AI Assistant): Leif can answer questions, using data collected from Healthtree website, including information about treatments, side effects, how to connect to support services, etc.

Healthtree University: An extensive curriculum of resources for patients, from myeloma basics to understanding clinical trials.

EVENTS:

Roundtables: Roundtables bring together patients and specialists to provide information and connection in the myeloma community.

Podcasts: Podcasts are often moderated by Jenny, the founder of Healthtree, in conjunction with myeloma specialists.

Webinars: Webinars are on a variety of topics such as nutrition, exercise, treatments, etc.

Summary of 2025 Healthtree Events (healthtree.org)

• Wednesday, June 18: WEBINAR – Should High-Risk Smoldering Myeloma be Treated
• Thursday, October 23: WEBINAR – Breaking the Silence: Confronting MM Disparities in Black Health
• Check website for additional Patient roundtables and webinars.

4. Multiple Myeloma Research Foundation – MMRF (themmrf.org) Resources

Patient Navigator Center – This program allows you to connect with professionals to answer questions about myeloma and to provide support to patients and care partners.

EVENTS: 

Patient Summits: Patient summits are in-person, virtual, or both (hybrid) and bring together patients and myeloma specialists for educational and support purposes.

Webinars: Webinars that provide myeloma specific information to patients and the myeloma community.

5. Leukemia and Lymphoma Society (lls.org) Resources

The LLS has a number of resources for myeloma patients. I’d recommend checking out their website to understand their offerings. Briefly, they sponsor a “First Connection” program, where myeloma patients can request to connect with a volunteer who also has myeloma (or experience with myeloma, as a care partner of family member/close friend); they host many Blood Conferences throughout the year, to include information and education for several blood cancer types; they offer myeloma-specific podcasts, webinars, workshops, and Q&A sessions with experts; and very importantly, the LLS is known to provide financial assistance to myeloma patients who are eligible for this financial resource.