Talking About Myeloma with Loved Ones

Feb 6, 2015

Do you feel the Love?

The New Year is here. Perhaps you have been newly diagnosed?

Whether a Myeloma warrior, or new to the world of MM, talking about the disease with loved ones can be difficult, at best. What is Multiple Myeloma anyway? It’s hard enough to understand the disease, let alone explain it! But talking through the emotion, the questions and all of your concerns with family and friends, can help make them better helpers along the journey.

Multiple Myeloma Defined

Multiple Myeloma (myelo- + -oma, “marrow” + “tumor”) is a cancer of plasma cells, a type of white blood cell normally responsible for producing antibodies. In multiple myeloma, collections of abnormal plasma cells accumulate in the bone marrow, where they interfere with the production of normal blood cells. Most cases of multiple myeloma also feature the production of a paraprotein—an abnormal antibody which can cause kidney problems. Bone lesions and hypercalcemia (high blood calcium levels) are also often encountered.

The Facts

  • Average age late 60’s.
  • Male:Female ratio 58/42
  • Blacks have more than twice the risk of whites whereas Asians have a slightly lower risk
  • Patients often present with bone pain, kidney problems or low blood counts.  Often it is found incidentally when someone shows a high total protein in their blood or protein in the urine.

The Figures

Treatment needs to be initiated if the patient feels poorly, has low blood counts, kidney problems, bone-related problems or high calcium levels.

Treatment needs to focus not only on reducing the burden of myeloma cells but also dealing with other medical problems caused by the myeloma such as bone loss, anemia and kidney failure.

Treatment options are increasing dramatically.  Nearly all patients respond to initial treatment regimens but the disease comes back in most patients which can occur in months to years.  General classes of drugs used to treat myeloma include steroids, chemotherapy drugs, proteasome inhibitors such as bortezomib and more recently carfilzomib, immunomodulatory drugs including thalidomide and lenalidomide and more recently pomalidomide.

Your Feelings

A cancer diagnosis is no less than shocking. The questions and emotions you feel are normal and there are support groups, online communities and fellow patients that can help ease you through the process of managing your feelings. Talk about the sadness, the confusion, and perhaps even the anger that you feel about your having the disease. Studies have shown that anger, frustration and stress can greatly affect the success, or failure, or your treatments. Don’t go through it alone. We are here to help, to talk and to fight alongside you. It’s OK to let people know how you feel!

Family & Friends

Help them, help you! It’s that simple. Share information about treatment options…allow friends and family to take you to/from appointments…share the news about good days and the tough days too. The more information they have, the more helpful they can be. Cancer is scary, yes. Overwhelming for some people to even talk about. But you will quickly discover who will rise to the occasion, and keep those people close…literally. Including them in the conversation and decision making process will give them the courage and conviction to keep up the fight for you and with you. And most importantly, spend time with them. Take time to cherish the times with the important people in your life. Tell them you love them, laugh with them, cry with them. Keep them involved in your ‘new’ normal and let them.

Sharing the Love!

IMBCR’s innovative research provides cancer patients with greater longevity and an improved quality of life. Because of expanded drug therapy options and treatment combinations, IMBCR provides patients with an opportunity to enhance their chances of surviving cancer and conquer one of the hardest challenges of their lives. The team at IMBCR is working tirelessly to find a cure… and you can help by sharing the ‘love!’ Take the time to help create awareness for Multiple Myeloma. With your help, IMBCR can accelerate the advancement of scientific research and ultimately help grant millions of people freedom from the symptoms of myeloma and bone cancer.

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