Publications and Information

 

The following is provided for informational purposes only.

Information

Clinical Trials Definitions of Phases

Phase 1 - Designed to see if experimental medicine is safe - Very few patients (n=10-30)
Phase 2 - Designed to see if treatment is effective - More patients (generally less than 200)
Phase 3 - Designed to see if treatment is safe and effective AND works better than currently available drugs - Large number of patients (several hundred to thousands)

Multiple Myeloma Classes of Drugs/ Therapies:

  1. Proteasome Inhibitors - Bortezomib/ Velcade; Carfilzomib/ Kyprolis; Ninlaro/Ixazomib
  2. Immunomodulating - Thalidomide; Lenalidomide/ Revlimid; Pomalidomide/ Pomalyst
  3. Monoclonal Antibodies - Daratumamab/ Darzalex; Elotuzumab/ Empliciti
  4. Histone DEacetylase - Panobinostat/ Farydak

*New agent - Venetoclax- Venetoclax is an oral BCL-2 inhibitor that kills myeloma cells, especially for patients with an 11;14 chromosome translocation. A Precision Medice Drug or relapsed or refractory myeloma. Often used with Velcade (Bortezomib) and Dexamehtasone (Steroid).

Publications, Webinars, Etc.

The IMF posts webinars with useful information. Visit the IMF TV and select Teleconferences.

IMF - Smart Patients is an online peer-to-peer program - A community where patients and caregivers learn from each other about treatments, challenges, and how it all fits into the context of their experience.

The Leukemia and Lymphoma Society has a Patient Reimbursement Program providing up to $500/year (July-June) for certain travel and medications for multiple myeloma patients. Applications forms are available at meetings. Contact LLS, Georgia Chapter Patient Services Manager, Rosalinda Ramirez 404-720-7807. LLS also publishes an email newsletter "MyelomaLinks". Visit their website to sign up for the newsletter.

The Leukemia and Lymphoma Society has a Co-Pay Assistance Program (click here for details). The phone number for more information is 1-877-557-2672.

CURE magazine is available free - call 800-210-CURE [2873] or order online.

The International Myeloma Foundation provides a Patient Handbook, Concise Review of the Disease and Treatment Options, and the Understanding booklet series for patients and their family. The IMF also publishes the periodicals Myeloma Today and Myeloma Minute which are available in PDF or subscriptions. (Although free, subscriptions must be updated yearly).

Myeloma Focus published quarterly by The Multiple Myeloma Research Foundation. Free. Call 203-972-1250.

National Cancer Institute (NCI) offers publications on chemotherapy, diet, radiation therapy and more.

The Neuropathy Association publishes Neuropathy News. Call 1-800-247-6968. May be of interest to those using thalidomide or Velcade.

Patient Advocate Foundation - "Insuring equal access to healthcare for all Americans". Assistance with any health/insurance-related issues (brochure available at our meetings). Patient Advocate Foundation Website or call 1-800-532-5274.

***Please contact the webmaster by sending an email to webmaster@mmsg.org if you find incorrect information or to update links, contacts, or phone numbers.