Family member diagnosed with MM. What to expect
I was just told my 47y/o sister was diagnosed with MM. I know nothing about the disease and doing web searches is confusing. On average it says that life expectancy is five years. This is distressing. Do I really only have five more years with my sister?
As only a family member, is there anything I can do physically, emotionally, to support her? Thanks
MMcaregiver Member Posts: 3 *
Hi Island in the Sun
I am so sorry to hear about your sister!
There are many good treatment options and trials for multiple myeloma. Please don't take what you read on life expectancy to heart, rather you and your sister can talk through all her options with her team. We have people in our support group going on 12 and 14 years strong with multiple myeloma.
Here is a little of our backstory- my husband was diagnosed Sept 2018, had a stem cell transplant in 2019, and is in remission now. There are other treatments options besides transplant, each with pros and cons. But the point is- there are options. New options are continually being studied and reviewed.
A few organizations that can help:
MMRF: Multiple Myeloma Research Foundation
IMF: International Myeloma Foundation
Both of these offer education and support. The IMF has local support groups as well. Some are in person, others are virtual right now.
Back to your sister, does she have a multiple myeloma specialist? Many multiple myeloma patients prefer to seek a multiple myeloma specialist for treatment.
If your sister does go the transplant route, please don't hesitate to let us know if you have any questions. My husband was 47 when diagnosed.
Bmtinfonet.org is a great resource of patients and families who are looking at stem cell transplant as an option.
Something husband said helped him was having a family member ag each appointment, to take notes and also to keep track of his questions in the same notebook. Sometimes he used it, other times, I ory sister would jot down notes for him. These notes helped us all remember and discuss his treatment options and such after the appointment.
Please let us know how she is doing, how you are doing, and how we can help. You and your sister are not alone!0
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