Topic Suggestion Description
Date submitted: May 08, 2014
- Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.
- What is appropriate screening for persons with multiple myeloma in multiple family members?
- Describe why this topic is important.
- My mother was diagnosed with advanced multiple myeloma at age 75 after long term misdiagnosis of arthritis (1996) She died 5 years later. At that time we were told there was no genetic link.
This year my 65 year old sister was diagnosed with advanced multiple myeloma after a year of reporting pain and was misdiagnosed. She now needs a stem cell transplant. We are now told that there is a genetic link.
What is appropriate follow up care for myself a 52 year old female and my brothers? ......since now my mom and sister were not dx until advanced stages.
- How will an answer to your research question be used or help inform decisions for you or your group?
- If there is a genetic component for multiple myeloma then should there not be some recommendations for family member screenings; especially when more than one family member has presented with the disease.
Early detection could possibly allow remission with less potent drugs and the need for stem cell transplant
- Other Information About You: (optional)
- Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)
- power of attorney of sick sibling
- If you are you making a suggestion on behalf of an organization, please state the name of the organization
- Please tell us how you heard about the Effective Health Care Program