Why Listening to Your Body Matters: Yolanda’s Multiple Myeloma Story
Yolanda has been navigating life with multiple myeloma since 2008. Before her diagnosis, she was immersed in the fast-paced fashion industry. Back then, she began noticing some odd symptoms, like a constant craving for starchy foods and her knee joints clicking when she moved. Cancer wasn’t even on her radar.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
It wasn’t until routine bloodwork revealed unusually high protein levels that Yolanda consulted a hematologist. This eventually led her to the Mayo Clinic where she received a diagnosis of smoldering myeloma, a stage that comes before active multiple myeloma. This was a pivotal moment, as it highlighted just how crucial it is to have a specialist who truly understands the disease. Thanks to an oncologist focusing on multiple myeloma, Yolanda’s knowledge about her condition grew significantly.
Yolanda then entered what’s called a “watch and wait” period. While it’s typically a year-long phase, for her, it stretched to five years before her myeloma became active and needed treatment. This phase brought its share of emotional ups and downs, along with the challenge of grasping all the medical details.
When it was time for treatment, Yolanda started with radiation and later moved on to chemotherapy and targeted therapy. The road wasn’t easy. Managing medication side effects was tough, but she eventually reached remission. Along the way, she became a strong advocate for herself, learning the importance of open communication with her doctors. She also discovered how beneficial regular exercise and staying active are in managing multiple myeloma.
Yolanda’s advice to others? Take a deep breath, stay engaged in your healthcare decisions, and focus on living well. She believes in speaking up during doctor’s appointments and stresses the value of having a supportive, knowledgeable medical team.
For Yolanda, multiple myeloma doesn’t define her life; it’s just one part of her story, and she’s determined to live it fully. Watch her video to learn more from her about:
The unexpected symptoms that led her to her multiple myeloma diagnosis.
How Yolanda’s stressful career masked signs of a serious condition.
Why having the right doctor made all the difference.
How Yolanda turned exercise into a powerful tool for managing her health.
Self-advocacy from someone who’s been through the ups and downs of multiple myeloma.
Name:
Yolanda B.
Age at Diagnosis:
38
Diagnosis:
Multiple Myeloma
Symptoms:
Anemia
Unusual craving for starchy food
‘Clicking’ sound produced by knees under certain circumstances (such as when walking up stairs)
Treatments:
Radiation
Chemotherapy
Targeted therapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
How Michelle and Jolene Each Live with Malignant PEComa, an Incredibly Rare Type of Cancer
Michelle and Jolene’s stories are about resilience, advocacy, and the power of awareness. Both women were initially diagnosed with other conditions with overlapping symptoms to their cancer diagnosis. Michelle had excessive bleeding that was attributed to fibroids, while Jolene attributed her symptoms to menopause.
With the COVID-19 pandemic adding to medical delays, neither of them received an immediate diagnosis. They both went through hysterectomies to treat their suspected diagnoses, leading to the shocking revelation that they each had malignant PEComa cancer (perivascular epithelioid cell tumor), a rare and incurable form of cancer.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
For both women, the diagnosis came as a gut-wrenching surprise. Jolene recalls waking up from surgery, groggy from anesthesia, only to learn that things didn’t look right. Michelle, a researcher by nature, turned to Google for answers, even though her doctors warned against it. The fear of the unknown weighed heavily on them, but they knew they had to press forward.
The reality of treatment set in quickly. There is only one FDA-approved therapy for malignant PEComa cancer, a drug that became available just in time for Jolene to start in 2022. Michelle initially had a strong response to it and she remains stable today. Still, both women live with uncertainty. Jolene, a mother, made it her mission to be present for her daughters’ milestones, focusing on each day rather than an unknown future. Michelle, on the other hand, has embraced self-advocacy, meticulously documenting her medical journey so others can learn from it.
Michelle and Jolene are determined to raise awareness of malignant PEComa cancer. Unlike breast cancer or leukemia, PEComa is virtually unknown, even among medical professionals. To note, PEComas are usually benign (noncancerous) and localized, but some are malignant (cancer), which is what both Michelle and Jolene were diagnosed with. They believe that through advocacy and exposure, more people will recognize the symptoms early and push for proper diagnoses.
Their advice is simple yet powerful: never lose hope. Every case is different, and statistics don’t define a person’s future. They emphasize trusting one’s medical team, staying informed, and, most importantly, finding a support system.
Watch the video to find out more from Michelle and Jolene about:
How a selfless act of love led to an unexpected diagnosis.
The one FDA-approved drug that stands between them and an uncertain future.
Why raising awareness for rare cancers like malignant PEComa is more important than ever.
The advice they have for everyone who’s facing a tough diagnosis.
Name: Michelle C.
Diagnosis:
Malignant PEComa cancer (perivascular epithelioid cell tumor)
Staging:
Stage 4
Symptoms:
Heavy bleeding
Asymptomatic lung masses discovered through kidney donor evaluation
Thank you to Aadi Bioscience for supporting our independent patient education content. The Patient Story retains full editorial control over all content.
Michelle and Jolene were both diagnosed with an incredibly rare type of cancer. Michelle was diagnosed in 2023, while Jolene was diagnosed two years prior. They received a diagnosis so rare that it affects less than one out of 1 million people each year: malignant PEComa (perivascular epithelioid cell tumor). According to the National Organization for Rare Disorders, this diagnosis is “most likely to occur in middle-aged females, with some studies reporting PEComas are five to seven times more likely in females than males.”
I was experiencing some bleeding… it continued to get worse to the point where I was sent to the emergency room because I was bleeding so much.
Jolene
The Red Flags for Michelle and Jolene
Michelle: Originally, I had fibroids, so I experienced excess bleeding during my menstrual cycle. At that time, I thought it wasn’t typical, so I called the doctor and they said that irregular menstrual cycles are normal sometimes.
Jolene: I was experiencing some bleeding and I thought it was possibly related to starting menopause. It was also during COVID, so I wasn’t going to the doctor a lot. I didn’t worry about it and it continued to get worse to the point where I was sent to the emergency room because I was bleeding so much. They did some scans, thought it was a fibroid, and proceeded from there.
To treat each of their other diagnoses, both Michelle and Jolene opted for hysterectomies, a surgical procedure that removes the uterus. The procedure would uncover cancer for both of them.
Hysterectomy Uncovering Their Cancer
Jolene: I had an early morning surgery and they told me how long it would possibly take. I remember coming out of the anesthesia and seeing the clock in the recovery room — it was three hours later than I’d thought. My surgeon told me that when they started the surgery, things didn’t look right, so she sent a sample off for biopsy. They didn’t know what kind of cancer it was, but they knew it was cancer. I was so out of it that I just accepted it.
Michelle: I was scared. I’m the type of person who when I don’t know what something is, I have to Google it and look it up, which my doctors don’t recommend. They told me that Google is not my friend. But I always want to learn. I love reading and doing my research. I did Google it and it was scary. My main concern was the life expectancy.
Michelle and Jolene received the news no one ever wants to hear: the cancer is back and now it’s Stage 4.
I was shocked because I wasn’t feeling short of breath or noticing anything strange. I didn’t have any symptoms.
Michelle
Finding Out They Have Stage 4 Cancer
Jolene: I can’t even describe how excruciating the pain was. Internal bleeding is one of the worst pains that you can feel. I wasn’t at the main hospital because I went to the hospital where I thought I would be able to get in faster and they performed a procedure to slow down the bleeding.
I was in shock. I was diagnosed in May. That happened in January and in February, I had another surgery. The tumor was fairly large. Recovery was difficult. It was painful and took quite a while, but the margins were clear. No lymph node involvement. At that time, the doctor told me that I was now stage 4 and it wasn’t curable.
Michelle: My brother was suffering from renal failure. He didn’t want to talk about it, but I went behind his back and got tested to see if I was a potential match. I went through the donor evaluation, which is a pretty rigorous testing process to make sure that the donor is healthy enough to donate. At the end of the evaluation, they did a chest X-ray and found multiple masses in my lungs. I was shocked because I wasn’t feeling short of breath or noticing anything strange. I didn’t have any symptoms.
Jolene: You’re always living in fear, just knowing how quickly it came back and how severely the first time. So I can give you an example. Three weeks ago, I felt a lump kind of in my upper leg, and then a week later I that was very tender. I felt another one in like my armpit area. And those areas aren’t really covered by the CT scans I get every three months.
So to say that I was a mess is putting it nicely. This past week, they scheduled a PET scan for me right away. I don’t have the final report, but the nurse practitioner called me and said it looks good.
It’s really hard not to react to any little lump [or] bump, because you know that catching it more quickly is probably to your benefit.
After Michelle and Jolene found out about the malignant PEComa, they learned what their future looked like. The FDA had only approved one therapy for malignant PEComa, approving nab-sirolimus in 2021 for patients with “locally advanced unresectable or malignant PEComa.” (FDA)
Discussing The Only Treatment Option for Malignant PEComa Cancer
Michelle: I asked, “What’s going to happen? Is my hair going to fall out?” When you think about chemotherapy, you think of the worst. Am I going to be having extreme sickness? Am I going to lose my hair? Am I going to be able to function? Those were my main concerns. I was okay until that appointment. I was apprehensive, but I was okay until we started discussing it because then it was real. I cried at that appointment.
Jolene: It was approved by the FDA a month before I started it, so I couldn’t be more thankful that they were able to develop that when they did. I started in April 2022 and told my daughters that it isn’t curable, that I’ll be on this medication, and that I will be with them for as long as I can. That’s what I continue to tell them, that I will be here as long as I can be. I honestly didn’t think I would be here because based on the clinical trials, it typically works for a year and a half to two years.
Because this is a rare and incurable cancer, the goal is to maintain quality of life and stability.
Michelle
Michelle: That was an, “Oh, s***,” moment. I thought, “One drug. Great.” My mind always goes far, so I thought, “What happens if it doesn’t work? What do I do?”
I’m grateful that there is a drug because that drug wasn’t available in 2015 when I received my initial diagnosis. If my disease was malignant from the beginning, I don’t know if they would have been able to treat it. Initially, I had an amazing response to the drug. I had rapid and significant shrinkage of tumors, and now I’m stable. Because this is a rare and incurable cancer, the goal is to maintain quality of life and stability.
Looking at the Future Living with Malignant PEComa Cancer
Michelle: In the beginning, I felt doomed. Am I going to live to see retirement? Am I going to be able to do some of the things I want to do? That was concerning. The unknown was scary. Nobody knows when their time is up, but that’s always in the back of your mind with cancer. I don’t necessarily dwell on it, but every once in a while, it’ll pop up. What do I do? Do I retire now or do I make sure that I have something for later? I’m still working part-time because I need some kind of normalcy in my life. I need structure and a purpose.
My daughters drive me to keep going… I want to be here and get my girls in as good of a place as they can be.
Jolene
Jolene: My daughters drive me to keep going and the fact that there isn’t another option. I will take what I have right now with the limitations that I have, which are the side effects. But given the alternatives, I want to be here and get my girls in as good of a place as they can be. I can’t imagine losing a parent as a teen or early 20s because my parents are still alive and doing well, and they’re a big part of my support system.
What Michelle Has Learned
Michelle: The one good thing out of this is I learned to advocate more for myself. I learned how to ask more questions and how to push a little bit more. In the beginning, I said if this was going to kill me, I want everybody to know about it. Not that I want to donate my body to science, but I want people to see my records and learn something. I take meticulous notes. It sounds morbid, but when I go, I’m going to have someone hand over my binder with all of my notes and paperwork.
Jolene’s Biggest Advice
Jolene: Never give up hope. Don’t look at other people who might have the same diagnosis and assume that you will follow the same path. I have sisters who are nurses, and they told me not to Google and to look at what has happened to other people. Your care team knows you the best and they’re focused on you. You don’t know what’s going to happen. I feel like right now at least, I’m proof of that.
When it came back in my liver, my goal was to be around for my youngest daughter’s high school graduation and my middle daughter’s college graduation, and those were in May and June 2024. I’m still hanging on. I hope and pray that I will be around for a long time to come but at the same time, facing the reality that we don’t know.
People don’t know what PEComa is… Hopefully, people will become curious and talk about it more.
Michelle
Raising Awareness for PEComa Cancer
Michelle: I want people to be aware of PEComa. I want people to know what it is. When somebody says breast cancer or leukemia, people know what it is, but people don’t know what [malignant] PEComa is.
There are a decent amount of people who I’ve run into that say they know what a sarcoma is, which is rare also, but the subtype is ultra-rare. I want people to know what it is and to become curious. If they know what it is and people talk about it, there’s more exposure. Awareness is very important to me. Hopefully, people will become curious and talk about it more.
Special thanks again to Aadi Bioscience for supporting our independent patient education content. The Patient Story retains full editorial control over all content.
Thank you for sharing your stories, Michelle and Jolene!
Symptom: Mild back pain on her left side that escalated in severity Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib ...
Symptoms: Swelling in the face, stomach, hands, and feet, high blood pressure, acne on back and chest, itchy and tingling tongue, burning in the eyes with discharge, hair loss on the head, hair growth on upper lip and chin, bloating and stomach pain, food aversions, easy bruising, slow healing, missed periods
Treatments: Surgery to remove the tumor, chemotherapy (EDP-mitotane), radiation (SBRT), immunotherapy (Keytruda/pembrolizumab), targeted therapy (Lenvima/lenvatinib) ...
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
How I Learned to Live with CLL—And Stop Letting It Control Me
Margie was diagnosed with a type of blood cancer that affects the bone marrow and blood. One day, she noticed a swollen lymph node she had never seen before. Doctors ordered a scan and biopsy of the lump. That’s when she got the news no one wanted to hear: she had a rare blood cancer called chronic lymphocytic leukemia, or CLL.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Margie’s diagnosis was a rare blood cancer, chronic lymphocytic leukemia (CLL). There’s no official cure but there are a lot of treatment options.
Name: Margie H.
Diagnosis:
Chronic lymphocytic leukemia (CLL)
Symptoms:
Large lymph node in her neck
Fatigue as the disease progressed
Treatment:
Targeted therapy
Thank you to AbbVie for supporting our patient education program. The Patient Story retains full editorial control over all content
I live in Southern California. I had a lymph node in my neck that was enlarged. I was diagnosed with chronic lymphocytic leukemia (CLL) in 2019. They gave it a little positive spin and told me that if I had to have cancer, it was the best kind to have.
How She Found Out She Had Cancer
I noticed a lump in my neck, so I went to my primary doctor. She didn’t know what it was, so she sent me for a CAT scan. I had a biopsy and that’s how it was diagnosed.
I didn’t have any other symptoms, so it was quite a shock. I’m relatively healthy, so to have someone say that I had cancer, I thought, “That can’t be,” but it was.
It’s very scary. One of the hardest things for me was telling my kids. It’s hard to tell your kids that you have cancer, but they were very supportive. I noticed the lump in September and was diagnosed in November, so it was very quick.
Finding the Right Doctor
Kaiser was willing to send my information for a second opinion. I ended up with the head of the department of chronic lymphocytic leukemia (CLL) at Dana-Farber Cancer Institute in Boston and I thought that was God’s doing. He was even involved in the research of the medication that I eventually took. Before he looked at my information, he said, “What’s your plan? What’s your goal? Do you want to have more life in your life or do you want to have a longer life?”
My daughter got a list of all the treatments and medications from a niece who’s a doctor. When I was with my family, we went through everything. We had a couple of nurses in the family, so we had some medical knowhow. Because I had high blood pressure and was taking blood thinners, we found all the ones that I was eligible for and talked about the side effects.
The specialist said, “I looked at everything. You need one more test and if you don’t have a mutation, then this is exactly what you should take. If you come out mutated, this is what you should take.” I took his report to my oncologist and that’s the way we went.
Because the side effects of the medication can be bad, they don’t want to start treatment until your symptoms are much more severe
Learning She Wouldn’t Get Treatment Right Away
I was on watch and wait. Some people call it watch and worry. Because the side effects of the medication can be bad, they don’t want to start treatment until your symptoms are much more severe, so I wasn’t treated until June 2021.
I came up with an idea during watch and wait. Think of it as boot camp. When you go to boot camp, they get you physically strong and when you’re physically strong, you do exercises to keep it that way. If you’re not, then you start.
Next, they teach you what you need to do if you have to go into battle, which is what you need to learn about chronic lymphocytic leukemia. The next thing they do is build a community around you. I didn’t recognize it at the time, but those were the steps I took. If a person would use watch and wait as a boot camp rather than as a time to worry, it would make a difference.
Noticing More Symptoms from the Cancer
After a year and a half, I developed more lymph nodes. A lot of them were on my stomach, so they were concerned about crowding the main organs. Other than that, they wouldn’t have started treatment.
You’re supposed to watch out for fatigue and night sweats. I didn’t have night sweats, but I experienced fatigue by early spring of 2021. I measured how I was doing by how I fared when I hiked. If I could still hike as far as I could or as fast as I could, if I could get up the hill, then I was still okay. However, I noticed a difference in late spring that year.
We had a family meeting after my grandson’s wedding and we decided that I should do the targeted, time-limited medication.
Fatigue was the only thing that I felt that made a difference. Eventually, I told a couple of my hiking friends. I also put in a prayer request at church, so my church family knew.
I see myself as a strong person. When something happens to you, you think that will diminish your strength and people will start looking at you differently because you aren’t as strong as you thought you were.
There are several types of treatments. I didn’t qualify for some because I’m taking blood pressure medication and blood thinners. There’s time-limited therapy and medication that you’re on for life or until it quits working and then they put you on a different one. We had a family meeting after my grandson’s wedding and we decided that I should do the targeted, time-limited medication.
Her Treatment Experience
I was a textbook case. It was fantastic. I had no side effects. I had six infusions in the beginning. One month after I started my infusions, I started my oral medication.
There are serious side effects to the oral medication. Tumor lysis syndrome is very dangerous. It can affect your kidneys. They put you in the hospital for the oral medication. I was in the hospital for three days as they put me on step-up dosing. It couldn’t have gone more perfect, so I’m very blessed.
Why worry about the things that we can’t change? If it comes back, I’ll be treated again.
Being Off-Treatment
I have blood tests every three months and see the oncologist every six months. I have no symptoms. Everything’s good. I couldn’t ask for anything better.
I don’t even think about it anymore. Before treatment, it used to be like having a time bomb that you’re waiting to go off. But since I’ve had treatment, I rarely even think about it — only when I have my blood test or oncologist appointment. I’m a very positive person.
I listen to a Christian radio station in my car and I heard something that said, “Change the things you can and adjust your attitude to the things you can’t.” Why worry about the things that we can’t change? If my chronic lymphocytic leukemia comes back, I’ll be treated again. It’s likely to come back. I’m not cured. I’m in remission or what they call undetectable minimal residual disease (uMRD).
Words of Advice
CLL isn’t a death sentence. Be your own advocate. Go and find the information. I know there are other sources, but HealthUnlocked was so fantastic for me. Build a good support system.
I want people to be encouraged and not discouraged. There are so many diseases out there that are so much worse than what I have and what I went through. We have to count our blessings when we can.
Special thanks again to AbbVie for supporting our independent patient education content. The Patient Story retains full editorial control.
