Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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Take a diagnosis of cancer, add the incurability of multiple myeloma and voila, myeloma caregivers can be overwhelmed with uncertainty.
When I was first diagnosed with MM, my wife became my primary caregiver. I’m sure that the range of emotions that Dawn felt were similar to many/most myeloma caregivers. She had to deal with everything from being my untrained nurse when she injected me with neupogen shots to having to deal with my Dexamethasone-fueled mood swings. Provding me with love and support every step of the way.
Even after 25 years, my mantra is “I wish I knew then what I know now.” While most of the time I think about therapies, side effects and quality of life issues of myeloma patients and survivors, studies like the one linked below make me focus on one the the most important aspect of surviving myeloma.
In addition to the support identified by myeloma caregivers in the study below, my list of “I wish I knew then…” is as follows:
Are you caregiving a myeloma patient/survivor? Scroll down the page, post a question or comment and I will reply to you ASAP.
“The results of a qualitative interview study revealed that primary family caregivers of patients with multiple myeloma experienced an overarching feeling of “intense uncertainty.” The research was published in Palliative Medicine.
It has been estimated that approximately 10% of patients with hematologic cancers have a diagnosis of multiple myeloma. Although newer treatment have extended survival for these patients, the disease is characterized by remissions and relapses and remains incurable. While family caregivers play critically important roles in the care of patients with multiple myeloma, information on the impact of caring for a family member with this disease is very limited…
In-depth, semistructured interviews were conducted with each study participant. Questions were open-ended and covered 6 areas including:
All interviews were recorded and transcribed.
Study findings showed the emergence of 4 main themes:
Uncertainty was identified as “a core overarching theme.”
“By identifying the specific needs of these caregivers, it will be possible to develop practical initiatives, targeting both health-related and logistical aspects of care, so as to support them in their role,” the authors concluded.”