Survivor Story: Fear of Multiple Myeloma Recurrence

I received a diagnosis of multiple myeloma in 2004. The disease had progressed from being a plasmacytoma, or plasma tumor, that was mistaken for breast cancer. The myeloma diagnosis was confirmed by a bone marrow biopsy.

Every day, I worry that the myeloma will return, even though I have been receiving chemotherapy since my diagnosis. I have had induction chemotherapy, tandem stem cell transplants, consolidation chemotherapy and maintenance chemotherapy. And although I have been in remission since the first transplant, I still fear a recurrence. I return to my oncologist every six months for tests to determine whether I am still in remission.

I have three pieces of advice for newly diagnosed patients: First, listen to your gut. If you feel like something is wrong, keep pushing your doctor for proof that there isn’t something wrong. If I had pushed my OB-GYN to take that lump in my breast seriously instead of dismissing it as something related to breastfeeding, maybe the plasmacytoma could have been treated and it wouldn’t have developed into myeloma.

Second, find a treatment center that knows how to deal with myeloma. I’m grateful that my local doctor is being guided by my doctor in Arkansas. She is so kind and compassionate, and I truly am a person to her, as opposed to “just another patient.”

Third, have faith in God. Many long nights are more tolerable because I pray to God when my anxiety won’t let me sleep.

From "A Patient's Guide to Multiple Myeloma," published in the Winter 2011 issue of CURE. Download the full guide here.