My mother-in-law, who lives many states away, was recently diagnosed with Multiple Myeloma. That set me to looking at all our registry resources from a patient’s point of view, and trying to identify additional ones. I was surprised to find that my local community hospital had little to offer me (“We usually refer those patients to specialists, and don’t have a lot of experience with helping to manage symptoms, etc.”). So, here are a few that I would enthusiastically recommend to patients and extended family:
- The NCCN patient guidelines
- The American Cancer Society website
- The National Cancer Institute clinical trials website (https://www.cancer.gov/about-cancer/treatment/clinical-trials/search): They have a wonderful chat feature which I didn’t remember having noticed before. Among other things, my “chat person” suggested:
- The Multiple Myeloma Research Foundation (MMRF), which provides information for newly diagnosed patients, patients starting treatment, and relapsed/refractory patients. They offer a Myeloma Mentors program that provides trained and certified staff who share their experiences with multiple myeloma with patients physicians, industry, and others in the myeloma community-
Phone: (203)229-0464
e-mail: info@themmrf.org
Website: http://wwwthemmrf.org/ and
- The International Myeloma Foundation (IMF) which is dedicated to improving the quality of like of myeloma patients while working toward prevention and a cure. The IMF Hotline answers questions from patients and family members and provides information about medical services, pharmaceutical access, and patient support groups:
e-mail: TheIMF@myeloma.org
Website: http://wwwmyeloma.org
Finally, I learned that night sweats are apparently a common problem for patients under treatment. There are several websites that sell “clothing for cancer patients” and “clothing for cancer patients with night sweats”. “Moisture wicking” products include pajamas, sheets, and pillowcases. My mother-in-law really felt they made a difference. (Also anecdotally, memory foam mattresses are apparently not the best for people who need to release troublesome amounts of heat).
I am thankful that there is so much information out there; I hope some of this will be helpful to the next person who finds themselves facing this diagnosis.
Article Written and Submitted by a member of the Registry Partners Oncology Services Division Team.