Multiple myeloma is a rare disease. Only 1 out of every 132 people will get this cancer in their lifetime. If you’ve been diagnosed with multiple myeloma, it’s understandable to feel lonely or overwhelmed.
When you don’t have someone to answer your day-to-day questions or someone who shares your fears and frustrations, it can feel very isolating. One way to find affirmation and support is by visiting a multiple myeloma or general cancer support group. If there aren’t any support groups where you live or you don’t want to travel, you can find the comfort and community you seek in an online forum.
What is a forum?
A forum is an online discussion group or board where people post messages about a particular topic. Each message and its responses are grouped together in a single conversation. This is called a thread.
On a forum for multiple myeloma, you can ask a question, share personal stories, or get the latest news on myeloma treatments. Topics are typically broken up into categories. For example, smoldering myeloma, insurance questions, or support group meeting announcements.
A forum differs from a chat room in that the messages are archived. If you’re not online when someone posts a question or answers one of your queries, you can read it later.
Some forums allow you to be anonymous. Others require you to login with an email address and password. Usually, a moderator monitors the content to make sure it’s appropriate and safe.
Multiple myeloma forums and message boards
Here are a few good multiple myeloma forums to visit:
- Cancer Survivors Network. The American Cancer Society offers this discussion board for people with multiple myeloma and their families.
- Smart Patients. This online forum is a resource for people who are affected by many different health conditions, including multiple myeloma.
- The Myeloma Beacon. This forum, which is published by a nonprofit organization in Pennsylvania, has been offering information and support to people with multiple myeloma since 2008.
- Patients Like Me. This forum-based site covers nearly 3,000 medical conditions and has more than 650,000 participants sharing information.
Multiple myeloma blogs
A blog is a journal-like website where a person, nonprofit organization, or company posts short informational articles in a conversational style. Cancer organizations use blogs to keep their patients up to date about new treatments and fundraisers. People with multiple myeloma write blogs as a way to share their experience, and to offer information and hope to those newly diagnosed.
Whenever you read a blog, keep in mind that they’re likely not reviewed for medical accuracy. Anyone can write a blog. It can be hard to know whether the information you’re reading is medically valid.
You’ll be more likely to find accurate information on a blog from a cancer organization, university, or medical professional such as a doctor or cancer nurse than on one posted by an individual. But personal blogs can provide a valuable sense of comfort and compassion.
Here are a few blogs devoted to multiple myeloma:
- International Myeloma Foundation. This is the largest multiple myeloma organization, with more than 525,000 members in 140 countries.
- Multiple Myeloma Research Foundation (MMRF). The MMRF offers a patient-written blog on its website.
- Myeloma Crowd. This patient-driven nonprofit has a blog page featuring stories about multiple myeloma fundraising events and other news.
- Insight from Dana-Farber. One of the country’s leading cancer centers uses its blog to share news about research advances and breakthrough therapies.
- MyelomaBlogs.org. This site consolidates blogs from many different people with multiple myeloma.
- Margaret’s Corner. On this blog, Margaret chronicles the day-to-day struggles and successes of living with smoldering myeloma. She’s been actively blogging since 2007.
- TimsWifesBlog. After her husband, Tim, was diagnosed with multiple myeloma, this wife and mother decided to write about their lives “on the MM rollercoaster.”
- Dial M for Myeloma. This blog started as a way for the writer to keep family and friends up to date, but it ended up being a resource for people with this cancer around the world.
If you’ve been feeling lonely since your multiple myeloma diagnosis, or you just need some information to help steer you through treatment, you’ll find it on one of the many forums and blogs available online. As you look at these web pages, remember to confirm any information you find on a blog or forum with your doctor.