My Multiple Myeloma Story: "I Was Misdiagnosed 3 Times"

Brought to you in partnership with the Multiple Myeloma Research Foundation (MMRF)

Surviving one form of cancer only to be diagnosed with another can be a hard pill to swallow. In fact, it’s what happened to breast cancer survivor Evelyn Hunley. Fortunately for Evelyn, who thought she would only live for a few years, she was introduced to the MMRF and its many resources through her oncologist.

“It was helpful to understand the various classes of drugs to treat multiple myeloma and what to expect,” Evelyn says.

Overcoming an inaccurate diagnosis

Evelyn’s journey to getting a diagnosis began when she started experiencing pain in her right flank area and right hip (femur). However, it wasn’t always believed to be multiple myeloma.

At the time, Evelyn was going to a family practice where they diagnosed her with arthritis. Though Evelyn was experiencing similar symptoms, she knew that wasn’t the disease she was fighting. The family practice still moved forward with prescribing her arthritis medication. The medication, of course, didn’t work.

“I was working on a major private project that was going to take me to Sweden for about 10 days, so I really didn’t take the time to get an MRI the way I should have. On my trip to Sweden, I got sick and I was in excruciating pain. By the time I got back to Houston, I went to my family practice again, and that’s when I started doing the MRIs,” Evelyn shares.

After undergoing MRIs, Evelyn’s doctor believed she had metastatic breast cancer.

“[My] diagnosing oncologist initially thought I had myeloma or metastatic breast cancer,” she shares.

After undergoing a bone marrow biopsy, PET scan, and an appointment with a radiation oncologist, doctors were able to give Evelyn an accurate diagnosis.

“He explained I had multiple myeloma, which is a blood cancer. He gave me an overview of the disease along with the next steps, such as hip stabilization surgery, radiation, and treatment options,” Evelyn notes, pointing out that the large lesion in her right femur was making her unable to walk without pain.

Despite the delay in diagnosis, Evelyn considers herself one of the fortunate ones.

“I got diagnosed with them within a week and from there, I went on to have surgery on my hip to place a rod in so that if it fractured, they wouldn’t have to try to take care of the fracture. From there, I think, like the next week or so I started treatment,” Evelyn adds.

The importance of a support circle

After finally being able to put a specific cause to her pain, Evelyn turned to her family for support.

“I immediately talked to my family about the diagnosis. Also, I had a family member to go with me to the diagnosing appointment,” Evelyn shares. “She was there to ask questions while I attempted to adjust to my new normal.”

As noted with Evelyn, support can go a long way. If you are looking for support and encouragement throughout your journey with myeloma, you can utilize MMRF’s Find a support group tool to locate other patients that are living with myeloma in your area that understand what you are going through.

The importance of utilizing myeloma resources

Evelyn, who at the time didn’t know much about myeloma besides how dangerous it can be, also began conducting her own research and educating herself and her family.

“My oncologist at the time said to me ‘Don’t Google multiple myeloma because you’ll find things that you really don’t want. There are a few reputable websites that I would suggest that you go to’ and MMRF was one of them,” she shares.

After finding out about MMRF, Evelyn researched induction therapy (the first line of treatment for cancer patients) and downloaded MMRF’s booklets.

Evelyn, who is currently recovering from a stem cell transplant and treatment following a 2015 relapse diagnosis, has now begun utilizing more tools from MMRF’s extensive list of resources.

She shared some of the resources that were most helpful for her:

1. Patient Toolkit

The Patient toolkit is a resource designed to answer any questions you have and guide you towards the support you may need.

The kit includes the following:

Multiple Myeloma Disease Overview
Multiple Myeloma Treatment Guide
Caregiver Guide
Patient Resource Guide
Precision Medicine Booklet
Immunotherapy Booklet
Autologous Stem Cell Transplantation Guide

2. Patient Navigation Center

The Patient Navigation Center is a space for multiple myeloma patients to connect with patient navigators (who are professionals specializing in oncology) for guidance, information, and support. You can connect with a patient navigator via phone (1-888-841-MMRF(6673)), email ([email protected]) or the online web form.

3. Treatment guides

There are many options and types of treatment, and they are constantly advancing. With MMRF’s treatment options resource, you and your care team can determine what is right for you.

Evelyn says MMRF’s Treatment guide also was particularly useful because it describes every drug that is available to treat myeloma patients and breaks down how the drugs work.

4. MMRF Lab Brochure

“The MMRF does a brochure on multiple myeloma and also on your labs so you understand what your labs are telling you each month when you get them from your physician,” Evelyn says adding that it has helped a group of women she met at a myeloma conference get resources and better understand their diagnosis. “I mean your physician goes over them with you, but you have a better understanding if you know exactly what they’re talking about.”

After six years of remission, Evelyn relapsed in January. She recently underwent her second transplant in August and is now in “complete response” (her way of saying remission). Her myeloma specialist explained to her that she was oligosecretory, meaning they couldn’t tell by blood work alone where her myeloma was. She would have to get blood work, a PET scan and a bone marrow biopsy to see what percentage of myeloma she had.

Unsure of exactly what oligosecretory meant, Evelyn utilized MMRF’s Patient Navigator Center and spoke with Grace Allison, a member of the Oncology Nursing Society and a nationally Oncology Certified Nurse.

“Grace probably stayed on the phone with me for an hour and a half, explaining everything to me and going over my treatment,” Evelyn adds. “She gave me a good understanding of where I was in my disease and what that meant for me and also sent me some studies.”

Advocating for your own health

Prior to getting diagnosed with myeloma, Evelyn was working in sales for a major Pharma company. Now the Houston native, by way of New Jersey and South San Francisco, dedicates her time to volunteering and mentoring individuals who were recently diagnosed with myeloma and/or are unaware of the resources available to them.

“So many of us get diagnosed at a later stage or we don’t fully understand the disease and our families don’t understand the disease and what it can do to individuals,” she shares.

After attending a clinical trial for maintenance drugs, she is now more aware than ever of how important it is for Blacks to participate in them.

“I thought if not me, then who because if we don’t do it who will because we are affected disproportionately by multiple myeloma,” she adds.

She says she didn’t have any outlandish expectations of the clinical trial, which is running smoothly. The only obstacle for her is the long commute.

“It’s one of those things where we have to advocate for ourselves because if we don’t, we’re almost doomed. The journey is not easy, but if you don’t have faith and believe then I’m not sure how you make it with this disease because it’s very difficult,” she concludes.

Although living with multiple myeloma can be challenging, there are many resources available to help ease your journey with this condition. The MMRF stands ready to be a resource to patients and their families. For more information, visit themmrf.org.