Support Groups Provide Community for Multiple Myeloma Patients

Understanding Multiple Myeloma and the Importance of Support

Receiving a diagnosis of multiple myeloma can be frightening and overwhelming. Multiple myeloma is a type of blood cancer that forms in white blood cells called plasma cells, which are found in the bone marrow. In multiple myeloma, plasma cells become abnormal, multiply uncontrollably, and produce large amounts of an abnormal protein which can cause damage to the bones and kidneys.

Some common symptoms of multiple myeloma include bone pain, fatigue, frequent infections, weight loss, and excessive thirst. However, symptoms vary from patient to patient. Multiple myeloma is treatable, but currently incurable. Treatment options include chemotherapy, stem cell transplants, radiation therapy, and newer targeted therapies.

It's understandable to feel shocked, confused, or scared after being diagnosed with multiple myeloma. Having the support of loved ones, medical teams, and fellow patients can help you better cope with the diagnosis, learn about treatment options, and maintain a positive outlook.

The Importance of Support with Multiple Myeloma

There are many benefits of having a strong support system when dealing with multiple myeloma:

• Emotional support - A diagnosis can take a toll mentally and emotionally. Support groups allow you to connect with others going through similar experiences.
• Practical advice - Fellow patients can share tips and insight on managing treatment side effects, nutrition, and lifestyle changes.
• Up-to-date information - Support groups provide a way to stay on top of emerging treatments and clinical trials.
• Empowerment - Support groups remind you that you are not alone in your fight against the disease.
• Resources - Many organizations provide financial assistance, counseling, and other resources.

While loved ones provide critical personal support, connecting with the broader multiple myeloma community can help you gain knowledge, strength, and hope as you navigate your cancer journey.

Types of Multiple Myeloma Support Groups

There are diverse options for multiple myeloma support that can be utilized:

In-Person Support Groups

In-person support groups allow you to physically meet with other multiple myeloma patients and caregivers face-to-face. Benefits of in-person groups include:

• Forming friendships and bonds that provide ongoing support.
• Being able to read body language and social cues.
• Not having to rely on technology to connect.

The Multiple Myeloma Research Foundation (MMRF) facilitates in-person multiple myeloma support groups across the United States. Look for groups in your local area or at your cancer treatment center.

Online Support Groups

Online support groups allow you to connect with the multiple myeloma community through message boards, chat rooms, and social media groups. Benefits of online groups include:

• 24/7 availability and access from anywhere.
• Anonymity if desired.
• Ability to connect with people globally.

The MMRF moderates a very active multiple myeloma discussion board where you can talk about your experience and get feedback and advice from other patients and caregivers.

Large Facebook groups like Myeloma Crowd Community and Myeloma Support Group allow you to post questions and updates to a wide community.

Telephone and Email Support

If you do not have access to in-person groups or prefer not to use internet forums, many cancer support organizations offer assistance over the phone or email. This includes:

• Cancer Support Community - 1-888-793-9355
• CancerCare - 1-800-813-4673
• Leukemia & Lymphoma Society - 1-800-955-4572

Talking to someone over the phone or pouring out your feelings in an email can provide great relief during challenging times.

Caregiver Support Groups

Support groups specifically for multiple myeloma caregivers are also available. Caregivers also go through significant distress and difficulty. Finding others to connect with who understand your experience can provide powerful support.

The MMRF provides a caregiver specific discussion board. Groups like the Myeloma Caregivers Facebook Group connect caregivers virtually.

Finding a Multiple Myeloma Support Group

Here are some ways to find a multiple myeloma support group that meets your needs:

• Ask your doctor - Many hospitals and cancer centers sponsor support groups or can direct you to local resources.
• National cancer organizations - The Leukemia & Lymphoma Society, Myeloma Crowd, and MMRF have search tools for finding local groups.
• Online searches - Search for terms like "multiple myeloma support group near me" or "multiple myeloma support online."
• Check community calendars - Local libraries, community centers, and newspapers often list support groups.

Don't limit yourself to just one group. You may find it beneficial to participate in both local in-person and larger online groups to get a diversity of support.

Supporting a Loved One with Multiple Myeloma

As a loved one of someone with multiple myeloma, supporting them throughout their treatment and recovery is so important. Here are some tips:

• Go with them to appointments to take notes and provide company.
• Help manage side effects by bringing food, medication, heating pads, etc.
• Encourage them to eat well, stay hydrated, and exercise if possible.
• Send cards and small gifts to lift their spirits.
• Offer to assist with chores, errands, finances, or childcare.
• Provide a listening ear when they need to talk or vent.
• Suggest support groups you can attend together.

Taking care of your own physical and mental health as a caregiver is also vital. Make time for yourself, set boundaries, and don't be afraid to ask for help from others as well.

Multiple Myeloma Support Resources

In addition to support groups, there are many other resources that can inform, assist and inspire those affected by multiple myeloma:

• Multiple Myeloma Research Foundation (MMRF) - Provides a wealth of information on multiple myeloma, treatments, clinical trials, and support services. Their website has educational publications, seminars, podcasts, and more.
• International Myeloma Foundation (IMF) - Funds myeloma research, education, and advocacy. Their site offers news, events, publications, and hotline assistance.
• Myeloma Blog - Features resources, research updates, access to experts, and stories from real patients.
• Myeloma Crowd - Provides myeloma news, research, and analytics tools for patients to track lab tests.
• Myeloma Crowd Radio Podcast - Weekly show tackling myeloma topics through expert interviews.

Online forums, blogs, podcasts, and videos allow patients and caregivers to learn and find inspiration at any time of day. Make these resources part of your coping toolkit.

Staying Positive with Multiple Myeloma

Living with multiple myeloma can negatively impact your outlook and emotions. Focusing on the positive whenever possible is so important. Some tips include:

• Finding moments of joy - Make time for humor, music, and uplifting connections, even on difficult days.
• Celebrating small milestones - Completing a round of treatment or getting good test results keeps you motivated.
• Practicing gratitude - Keep a journal of all you are thankful for.
• Trying meditation - Apps like Headspace and Calm can aid with stress.
• Joining a spiritual community - For many, faith provides comfort and peace of mind.
• Seeking counseling - Therapists help develop coping skills.

While multiple myeloma presents daunting challenges, know you have the strength and support to get through the difficult days. Focus on the progress made, and keep hope alive for new treatments and a possible cure.

Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.