Jim no longer wants to experience the constant nausea, fatigue, and diarrhea that often come with his different treatments.6 He values his time with his family, and it’s important to him that he can fully enjoy whatever time he has left with them. While Jim is not as active as he once was, he looks forward to the occasional walks he takes with his daughter, Joy. He and his wife have also focused on incorporating meditative prayer and staying connected with their friends at church to help manage stress and negative thoughts.
Throughout the course of his treatment, Jim has only seen one oncologist, who works in a nearby metropolitan area. He and his family are particularly close to the oncology nurse who is in the office and will often reach out to her first with any questions or concerns. Jim has never sought a second opinion and tends to go along with whatever recommendations his doctor makes. He only questions treatments when he experiences bad side effects that keep him from spending time with his family. As such, he has only asked to change his treatment twice.
While Jim decided that it wasn’t necessary for his own treatment, it is perfectly reasonable to seek one or choose to receive care from a multiple myeloma specialist. For example, more than 80% of people living with multiple myeloma see a community oncologist,7 but some people living with multiple myeloma who live further away from a multiple myeloma specialist or cancer center decide to create a care team that includes their local oncologists, as well as specialists at a cancer center of excellence, who have better access to clinical trials for multiple myeloma. These people living with multiple myeloma often value the collaboration between their local oncologist and their multiple myeloma specialist when developing their treatment plan.
Navigating multiple myeloma treatment options can be challenging, but there are organizations that can help you. You can use this online tool from Myeloma Crowd, a patient advocacy organization, to find a myeloma specialist near you.
I want to live with quality of life. I need to be able to enjoy my time with my wife, kids, and grandkids and I can’t do that if I’m sick in bed from my medicine all day.”