Personal Perspective: Smoldering Myeloma Patient Becomes Her Own Best Advocate
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 (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.
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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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Good afternoon,
My name is Elena and I am a 37 year old female with I IgA Kappa smoldering myeloma. I read the article about. Yolanda Brunson Sarrabo and would be interested in connecting with individuals in my age category. I am hoping she is receptive to me connecting with her.
My email is salma5k [{at}] AOL {[dot]} com.
Respectfully,
Elena
Hi Yolanda, I enjoyed your story. In 2002 I was diagnosed with MGUS. I know that you will read up on that. I was 45 at the time. The MGUS converted to myeloma in 2010. The years in between I did look at life differently, although I had already had my life tossed around before. I have a history of severe asthma and had been on the ventilator several times. I have two children and I knew the importance of the small things most people take for granted. I prayed and believed for my healing from this and I did receive it. Then again satan attacked with this MGUS/Myeloma . My life was turned upside down again. But I refuse to allow this thing to control my life. This summer I finally got to go to San Francisco and Hawaii . I had an auto stem cell transplant in 2010. In Feb of this year my M-spike started to rise again. I am preparing for an allo transplant. I told my docs I wanted to get through the holidays first. I have nine grandchildren and I had a wonderful time with them at Thanksgiving. Live your life to its fullest!!!
Hello Elena and Music Meme.
I'm so happy you enjoyed the article and happy the Myeloma Beacon has given me the opportunity to share my story.
As I'm sure you both have experienced this unusual situation you begin to feel like you're in this on your own- but your not.
I'm so happy I was blessed with the gift of being inquisitive in not backing down in investigating subjects such as this.
God Bless
Elena, I will be in contact. Thank you
Yolanda
Hi Yolanda,
You touch on a topic that has been discussed here a few times by a few of us youner women (with different stages of illness), and that is the topic of children. May I ask, did you go on to have a family or did your Dr. recomend you should not. A few of us have heard different things, and no on I know of has had a baby after a MGUS, SMM, or MM diagnosis.
Myself I was diagnosed with MM 2012 had chemo then stem cell transplant and have been in remission for about 2.5 years, and if all is good at next blood work end of January will be making an appointment with Fertility Dr to discuss options. My Specialist gave us the All clear last year, provided I maintain remission and am monitored by the really good High Risk pregnancy clinic at an affiliated hospital
Alyssa
Dear Yolanda,
Thank you for sharing your story. It is rare to find young women diagnosed with MGUS, SMM, or MM. I was diagnosed with MGUS in 2009 when I was 25. This past summer I had my first BMB and it suggested borderline SMM - I have a repeat biopsy in 2 weeks to determine if I have progressed to SMM or am still classified as MGUS.
I want to echo Alyssa's question - were you able to have children? My husband and I want to start a family and I was just wondering if you were given the okay or not.
Take care,
Elizabeth
Hello Alyssa and Elizabeth,
I believe that being diagnosed with MM and getting the right answers to pregnancy strongly depends on the doctor you are blessed to find. I truly believe this.... the first doctor was totaly "old school" in regards to - "Well we need to put you on medication immediately" and he shot down hopes of us starting a family- even with showing us an horrific dvd with what happens when you take Thalomid and having the child born without limbs- it was the most horrific way to express his views which I've ever seen, and I would lie if I said it didn't traumatize us; however my 2nd opinion the doctors gave a green light to go for it. Quite honestly the harsh review of the first doctor traumatized us where we stalled in trying to go down this family planning road, as we were not sure if the baby's blood would be affected and so forth. I find it took even further education on my part and getting the right answers to some very pertinent questions, and sometimes it takes a bit of time to getting the right answers, because some doctors aren't sure themselves. I ran into some other health matters not MM related but would affect our chances in preganancy. I'm now good to proceed, but now it's the age factor. I just turned 43 (don't look it and pretty healthy despite the obvious)- 5 years has been stalled as we were not sure should or shouldn't we try. My ovaries are great but it's now the age factor, but my gut tells me and my gynecologist, and oncologist tell us to go for it. I'll let you know what happens
Thanks for sharing! It's not an easy thing to talk about, and most of my friends don't really get that we need to think about more then just being in "remission" or "stable" but there are the long term what ifs that Dr's just don't know since it is rare situation. I will post any updates in our own situation too
Hello Alyssa
Yes, there is so much to consider than the treatment and remission when you're at a certain age. The bottom line is younger people diagnosed with this may have other concerns versus those later in there years, who have started their families earlier on.
Strange and unsettling place to be, and again each doctors viewpoints on this varies...
I was diagnosed with MM just recently after finding a large tumor in my head, a plasmacytoma, on the day I turned 37. I have a two year old daughter who is my sunshine but also my worry. I have been in radiation for a few weeks now and will be starting chemo within the next week. I would love to connect with others who have been down this path. Especially anyone who has young children at home.
marisa(dot)washburn(AT)gmail(dot)com
In case those posting comments here are not aware of it, The Beacon does have an active discussion forum, where patients and caregivers of all ages can post questions and share their experiences. Here is the link:
http://www.myelomabeacon.com/forum/
One advantage of the forum is that the Beacon's Medical Advisors -- five myeloma specialists from major cancer centers around the U.S. -- regularly review the forum postings and often answer questions that have been asked.
The other advantage, of course, is the collective experience and wisdom of the large number of myeloma patients and caregivers who regularly visit and post in the forum.
It is not necessary to register to read the forum postings -- or even to post in the forum.
Finally, if you're interested in receiving emails with the full text of all Beacon articles and columns immediately after they are published, you can subscribe to the Beacon's email alerts here:
http://www.myelomabeacon.com/email-subscription/
Your email address will be used only for the news alerts -- The Beacon does not use the email addresses for any other purpose, or make the email addresses available to any other organization.
All the best,
Boris Simkovich
Publisher, The Myeloma Beacon
Yolanda and others,
I'd like to mention two products that may be helpful. After progressing from MGUS to smouldering over a 5 year period, I started taking LDN 5mg (low dose naltrexone) and tumeric 5gms (aka cumerin) daily. The progression of the disease seems to have slowed for me.
You'll need an Rx for LDN and a compounding pharmacy to fill the Rx. The tumeric can be purchased at health food stores.
I have no idea if this is part of the answer for you or even if it has really work for me. There is little danger to either of these drugs. One being a spice, the other a watered down version of what they call a narcotic antagonist. LDN supposedly increases your immune system capabilities when taken at night. A concern would be that these products may some how interfere with other meds. Talk to your Dr.
As a pharmacist, I am acutely aware of these issues but believe there is little risk involved. Tumeric is cheap. Price out the LDN at your pharmacy.
Best to all,
Greg
Thank you Greg,
I read up on Tumeric some years back, and tried my own concoction with it.
I do realize too much of this spice is noted as not a good thing.
I'll look into your suggestion. Thank you
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