When faced with a diagnosis of myeloma, following a few key steps can make a significant difference including finding a myeloma specialist, and finding a Myeloma Coach
Having a strong patient and physician relationship is important, and can impact decision making. Establishing a close working relationship with your myeloma specialist can lead to improved outcomes.
In the video shared above, Reina shares the process she experienced in working with her myeloma specialist, Dr. Peter Voorhees as she was considering whether to have an autologous stem cell transplant. Having open and honest discussions with Dr. Voorhees, and examining all of her options helped her come to the best decision for her.
Reina feels it is “essential to your care to have someone you can really trust”. Establishing rapport and trust with Dr. Voorhees made a significant impact on their ability to work together and create the best treatment plan for her.
Dr. Voorhees expressed the importance of talking to a “patient advocate”, or someone who has “been there” and can offer shared experience. This can be especially helpful when one is considering different treatment options, including a stem cell transplant. Dr. Voorhees shared, “When patients recognize that there are people out there who have done these things, it provides a tremendous amount of reassurance”
Studies show that individuals live longer when they are seen by a myeloma specialist.
Who qualifies as a myeloma specialist? This short video explains what a myeloma specialist is and why everyone with myeloma needs one as a member of their healthcare team:
You can find a list of Myeloma Specialists by location here.
Myeloma Coaches are myeloma patients or caregivers who volunteer to share what they’ve learned to help others. They offer shared experience which brings the re-assurance mentioned by Dr. Voorhees. Talking to someone who can relate invites understanding, encouragement and hope. Coaches share resources and insights that have helped them live life with myeloma.
Each Myeloma Coach has varied experience including physical health, nutrition and exercise, mental/emotional health, becoming your own advocate, parenting with myeloma, saving for retirement with myeloma, stem cell transplant experience, medicare/medicaid, insurance issues and experience with specific myeloma treatments/medications. You choose the Coach you feel is the best fit for you based on your needs/questions.
Upon registering, Myeloma Coaches receive initial and ongoing training as well as continuous support and resources. Coaches have consistent opportunities for continued education and learning. If you would like to make a positive impact in another’s life- join our Myeloma Coach team.
about the author
Rozalynn Hite is the Myeloma Coach Director and wife of myeloma patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children.