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Personal Perspective: Smoldering Myeloma Patient Becomes Her Own Best Advocate

By: Virginia Li; Published: November 29, 2012 @ 12:48 pm | Comments Disabled

After a routine blood test, Yolanda Brunson-Sarrabo was diagnosed with myeloma in 2008 at the age of 38. Like many patients before her, Yolanda was unfamiliar with the term "multiple myeloma" prior to her diagnosis.

"[My husband and I] were just kind of mind boggled, it hit us so quickly. I wasn't sure what myeloma was. I had never heard of it," said Yolanda.

After her initial diagnosis was confirmed by a bone marrow biopsy, her doctor planned to put her on a thalidomide [1](Thalomid)-based regimen. However, Yolanda was not ready to go that route. She and her husband were thinking about having children at the time, and any treatment involving thalidomide would have ended that goal.

MORE INFORMATION:

News articles about:
- smoldering myeloma [2]

Forum discussions about:

- smoldering myeloma [3]

Instead, Yolanda started an extensive Internet search. She found a leading myeloma specialist who she contacted for a second opinion. "Many people think they have to do whatever the doctor tells them to do, and they don't even try to get a second opinion. Sometimes we have to be an advocate for our own health," said Yolanda.

The second doctor reviewed her test results and found that what she had was smoldering myeloma, not multiple myeloma. Smoldering myeloma is a slow-growing type of myeloma that does not cause any symptoms. "He didn't see the need for me to be on any kind of medication," explained Yolanda.

Yolanda is still grateful that she consulted with a leading myeloma expert. “Luckily, I got that second opinion. I don't know how my life would have been now [without it],” she said.

At Yolanda’s request, the second myeloma specialist referred her to another myeloma specialist closer to home. He is now closely monitoring Yolanda’s disease.

The only treatment Yolanda has received so far is radiation. About one month after her diagnosis, Yolanda felt severe pain in her chest, which was attributed to her myeloma. She immediately underwent radiation treatment for ten days, and has not received any form of treatment since then.

According to Yolanda, "I'm a woman of faith. I think I have angels watching over me and I hope they continue to do so."

In addition to the support she has received from family and friends, Yolanda has found some use in online support groups. "Online networks were helpful, hearing other people's stories and putting my own questions out there," said Yolanda. However, as a younger patient battling a condition that typically affects an older population, she would like to hear more stories about patients closer to her age.

Today, Yolanda lives in Pennsylvania with her husband and works as an associate product line manager for an athletics company. She goes through routine blood tests every three months and checks in with her doctor every six months.

Over the past five years, she has changed the way she views and lives her life. "You don't know how your life is going to turn. I might outlive everyone, even though I have myeloma. I think this has given me the drive to go and do the things I've wanted to do."

When asked what advice she would give to newly diagnosed myeloma patients, she responded, "After the crying and the moping, it's so important that you start living... Your attitude about it makes a huge difference. If there's a trip you've been waiting to go on, stop waiting. It's time to rethink your priorities."

If you are interested in sharing your myeloma story, please email us at . We would be happy to hear from myeloma patients, caregivers, and health care providers.


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URL to article: https://myelomabeacon.org/news/2012/11/29/personal-perspective-smoldering-myeloma-patient-becomes-her-own-best-advocate/

URLs in this post:

[1] thalidomide : https://myelomabeacon.org/resources/2008/10/15/thalidomide/

[2] smoldering myeloma: https://myelomabeacon.org/tag/smoldering-multiple-myeloma/

[3] smoldering myeloma: https://myelomabeacon.org/forum/search.php?keywords=smoldering&terms=all&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

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