March is Myeloma ACTION Month 

March Myeloma Action MonthDid you know that March is Myeloma ACTION Month?

Multiple Myeloma, a cancer of the blood plasma cells that affects approximately 90,000 people in the US, is the second most common blood cancer. Myeloma is increasing in numbers and is becoming more common in younger patients, with possible links to environmental toxins. Recently, myeloma was added to the World Trade Center Health Program list of cancers covered in people exposed to the aftermath of the 9/11 terror attacks. It should be noted that gammopathy of undetermined significance aka MGUS (a precursor to myeloma), smoldering multiple myeloma, and myeloma are all more frequent in African Americans. Yet, because it is a relatively unknown cancer, myeloma can go undiagnosed until the disease begins to seriously damage health.

Awareness can lead to earlier diagnosis

With more treatment options available for myeloma than ever before, an early diagnosis is vital for achieving the best outcome for patients. To help raise awareness, the International Myeloma Foundation (IMF) was the first organization to declare March as Myeloma Awareness Month in 2009. Awareness can lead to patients asking whether their doctor has considered myeloma as a possible cause for their symptoms and can lead to earlier diagnosis. Since 2015, the International Myeloma Foundation elevated this declaration to Myeloma ACTION Month to better reflect the dynamic, proactive approach they are taking to educate and increase awareness of myeloma.

Take action

During Myeloma ACTION Month, the IMF and its army of patient advocates will partner to increase myeloma awareness on multiple fronts. The organization invites all advocates to join in the following actions:

  • Participating in a letter-writing campaign to increase awareness about myeloma among general practitioners and internists.
  • Using the hashtag #IMFmam on Twitter and Facebook.
  • Using the MAM Logo for Facebook and Twitter profile images.
  • Contributing a public service announcement (PSA) to your local radio station.
  • Writing an article for your local newspaper about myeloma.
  • Posting the IMF Myeloma Action Month flyer in your neighborhood.

President and Co-Founder of the IMF, Susie Novis Durie acknowledges:

“The IMF is proud to see advocates—patients, caregivers, and community supporters—taking charge with actions that will increase awareness of myeloma across the United States and around the world.”

Multiple Myeloma: SIGNS, SYMPTOMS, and screening

What symptoms might suggest myeloma?

  • 30% of patients can actually have no symptoms! In that situation, red flags for a possible diagnosis for early myeloma are:
    • Increased total protein and/or an increase in IgG or IgA levels
    • Abnormal protein in the urine
    • Unexplained anemia
    • Unexplained increase in serum creatinine

Any such findings warrant further investigation.

  • For the other 70% of patients, the most frequent early warning signals are:
    • Persistent or recurrent unexplained back or other bone pain
    • Fever or history of recurrent or persistent infections
    • Unexplained fatigue
    • Shortness of Breath
    • Unusual bleeding
    • Rash (shingles)

The best and most cost-effective screening tools to identify monoclonal (MGUS), smoldering multiple myeloma (SMM), and myeloma are:

  • SPEP (serum protein electrophoresis)
  • IFE (immunofixation electrophoresis)
  • Freelite test

Abnormal findings in the above tests will identify more than 98% of cases of plasma cell disorders.

No awareness when I was diagnosed with stage 3

I was diagnosed with Multiple Myeloma in 2008 after being treated by an orthopedic doctor for excruciating back pain and fatigue that was wrongly attributed to degenerative disc disease for nearly 2 years. At the time of my diagnosis I was already at Stage 3. There are only 3 stages in myeloma, unlike the solid tumors that have 4 stages. When I was finally diagnosed with this blood cancer (which I had never heard of until the day of my diagnosis), I had multiple compression fractures in my vertebra and had lost 3 ½ inches in height. I was extremely anemic and was beginning to experience confusion due to high calcium levels in my blood. If there had been a Myeloma ACTION Month back in 2006 maybe I would have asked my orthopedic doctor if my back pain and fatigue could have been caused by myeloma.

After all, the CRAB symptoms of myeloma are:

happy crab illustration

  • – Calcium Levels Elevated
  • – Renal Insufficiency
  • – Anemia (Fatigue)
  • – Lytic Bone Lesions

 

For additional information about Myeloma Action Month, please visit the initiative’s website, and to learn more about myeloma, please visit the IMF’s home on the web here.

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Cindy Chmielewski Precision Medicine Advocate

Cindy Chmielewski Precision Medicine Advocate

Cynthia Chmielewski was diagnosed with multiple myeloma, a blood cancer, in 2008. Cindy’s induction therapy stopped working after a few cycles and she proceeded with a stem cell transplant which failed to put her into remission. Depressed and scared she continued her fight using newly FDA-approved targeted therapies which eventually put her in remission. Cynthia continues treatment with a maintenance protocol.  Cynthia is using her passion for education to teach a new group of “students” – myeloma patients, their caregivers and others interested in myeloma.  She is a trained mentor, advocate and Patient Ambassador.
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