The Multiple Myeloma Support Center

The Journey:
Just Found Out
Dealing With It
Recover & Thrive
Worst Case

Facing the Initial Impact of Multiple Myeloma

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Multiple Myeloma

Every person is unique, but when you face a challenge like mulitiple myeloma, you are never alone.  Countless men and women have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge. 

TSC has scoured the Web to assemble links to the very best multiple myeloma resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this multiple myeloma guide even more helpful to survivors like you.  

JUST FOUND OUT 

Survivors Say: Best Resources for Multiple Myeloma

The Big Picture

Plasma cells are white blood cells -- an important part of our immune system. Myeloma is a cancer that starts in plasma cells. These resources offer a good overview to this type of plasma cell cancer, to help you as you begin to understand your diagnosis:

Your Multiple Myeloma

As with any condition, how you experience multiple myeloma is unique to you -- start here to better understand your diagnosis and the stage of your cancer, as you and your doctor begin to talk over your treatment options:

Myths About Multiple Myeloma

  • "Myeloma cells protect the body from infection."
  • "There is no relationship between weight and multiple myeloma."
  • "There is no connection between race and multiple myeloma."

Illinois Department of Public Health: Facts About Multiple Myeloma

Dealing With Multiple Myeloma

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Information and Recommended Links for Survivors

Types of Treatment

The treatment options are directly related to which stage of multiple myeloma you're in. Your doctor may advise "watchful waiting" (no intervention) if you have no symptoms; stem cell transplant; and/or drug therapy:

Chemotherapy & Biologic Therapy

Stem Cell Transplant

Radiation Therapy

Radiation may help ease pain and also stop cancer growth by killing cancer cells:

New Therapies

Research into treatments and a cure for multiple myeloma are ongoing - check out the work of the Multiple Myeloma Research Foundation, and if you're interested in participating in a clinical trial talk to your doctor about your eligibility:

Holistic Treatments

Any treatment that helps you stave off infection or relieve pain -- both are threats to those with mulitple myeloma -- can be a big help in your fight against this type of cancer:

Creating a Support Circle

  • Set up your TSC survivor profile.
  • Join support groups of other survivors or start your own.
  • Interact and provide updates on your TSC profile or in the forums.

Insurance & Work Matters

You may not be able to work throughout your treatment - read this guide to learn more about your rights at work and how to get help paying for treatment if you need it:

Resources to Find Doctors

Books Survivors Recommend

Communicating with Your Health-care Providers

  • Make a list of all the questions you have and them to your appointments, jotting down the answers in the same notebook.
  • Learn all you can about treatment options, then discuss these openly with your entire medical team.
  • Don’t be embarrassed if you get emotional; letting your feelings out is important, and your doctor can help allay your fears and assist in finding support if you need it.

Dealing with Multiple Myeloma: Information for Co-Survivors


How You Can Help

  • Ask your survivor how they’re doing and what you can do to make their life easier.
  • Try to do things to lift their spirits – like renting funny films, or taking them out to lunch.
  • Be there when they need you.

What to Say    

  • "I’m here to help in any way I can."
  • "What is it that you need the most?"
  • "If you need someone to talk to, I’ll be here for you."

What Not to Say

  • "I’m sure there's a cure for this."
  • "Don't worry; everything’s going to be ok."

Things You Can Do for a Survivor Every Day

  • Let them know you’re there to support them.
  • Call just to chat or send an email to check in.
  • Do something nice to try and cheer your loved one up. 

Recover & Thrive

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Remission / Recovery / Recurrence

You've finished treatment and are entering a new stage of your journey as a survivor of multiple myeloma. It's important to stick with the check-ups and other other follow-up care your medical team has recommended, and also to reduce any risk factors you have some influence over:

Give Back


What helped you when you were first diagnosed, going through treatment, or finished treatment and moved into recovery? Consider sharing your experience with those who are newly diagnosed or struggling with their experience of multiple myeloma. You may want to join a support group, volunteer, or join the online community at TheSurvivorsClub.org. You might be surprised how much others appreciate your experience, compassion, and wisdom.

Worst Case

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Sometimes, treatment for multiple myeloma doesn't work, or stops working, or there is a relapse. This is devastating news to receive, both for you and for those who are closest to you. If  medical intervention cannot do more to help, these resources can offer help in planning, preparing and coping now:

 

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Survivors Say: Best Multiple Myeloma Blogs for Now

Survivors Say: Best Sites for Clinical Trials

Famous Multiple Myeloma Survivors

  • Geraldine Ferraro, former Vice Presidential candidate
  • Vern Ruhle, Houston Astros pitcher
  • Mel Stottlemeyer, New York Yankees pitcher