Tag: targeted therapy

Living with a Rare Malignant PEComa Cancer

Post author By Katrina Villareal
Post date April 18, 2025
No Comments on Living with a Rare Malignant PEComa Cancer

April 18, 2025

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
Treatments:
- Surgery: hysterectomy
- Targeted therapy: mTOR inhibitor

Name: Jolene S.
Age at Diagnosis:
- 51
Diagnosis:
- Malignant PEComa (perivascular epithelioid cell tumor)
Staging:
- Stage 4
Symptoms:
- Inability to urinate
- Bleeding from uterus
Treatments:
- Surgery: hysterectomy
- Radiation
- Chemotherapy
- Targeted therapy: mTOR inhibitor

Thank you to Aadi Bioscience for supporting our independent patient education content. The Patient Story retains full editorial control over all content.

Table of Contents

The Red Flags for Michelle and Jolene
Hysterectomy Uncovering Their Cancer
Finding Out They Have Stage 4 Cancer
Discussing The Only Treatment Option for Malignant PEComa Cancer
Looking at the Future Living with Malignant PEComa Cancer
What Michelle Has Learned
Jolene’s Biggest Advice
Raising Awareness for PEComa Cancer

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!

Inspired by Michelle and Jolene's story?

Share your story, too!

How I Learned to Live with CLL—And Stop Letting It Control Me

Post author By Katrina Villareal
Post date January 26, 2025
No Comments on How I Learned to Live with CLL—And Stop Letting It Control Me

January 26, 2025

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

Table of Contents

Introduction
How She Found Out She Had Cancer
Finding the Right Doctor
Learning She Wouldn’t Get Treatment Right Away
Noticing More Symptoms from the Cancer
Her Treatment Experience
Being Off-Treatment
Words of Advice

It’s hard to tell your kids that you have cancer…

Introduction

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.

Thank you for sharing your story, Margie!

Inspired by Margie's story?

Share your story, too!

More Chronic Lymphocytic Leukemia (CLL) Stories

Serena V., Chronic Lymphocytic Leukemia (CLL)

Symptoms: Night sweats, extreme fatigue, severe leg cramps, ovarian cramps, appearance of knots on body, hormonal acne

Treatment: Surgery (lymphadenectomy)

Margie H., Chronic Lymphocytic Leukemia

Symptoms: Large lymph node in her neck, fatigue as the disease progressed

Treatment: Targeted therapy

Nicole B., Chronic Lymphocytic Leukemia

Symptoms: Extreme fatigue, night sweats, lumps on neck, rash, shortness of breath

Treatments: BCL-2 inhibitor, monoclonal antibody

Exhausted woman experiencing CLL symptoms.

Symptoms of CLL

Learn about how some of the common CLL symptoms first present themselves from patients who have been diagnosed with CLL.

Tags targeted therapy, watch and wait

Breast Cancer Chemotherapy Hormone Therapies Lumpectomy Metastatic Patient Stories Radiation Therapy Surgery Targeted Therapies Treatments

Nina’s Stage 4 Metastatic Breast Cancer Story

Post author By Katrina Villareal
Post date November 21, 2024
No Comments on Nina’s Stage 4 Metastatic Breast Cancer Story

November 21, 2024

Nina’s Stage 4 Metastatic Breast Cancer Story

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Nina, diagnosed with stage 4 metastatic breast cancer at 34, shares her experience of navigating the complexities of her illness and advocating for her health. She initially noticed a hardening under her left armpit. A year later, the lump grew and her breast showed signs of dimpling. A mammogram and ultrasound finally revealed an abnormal lump and a biopsy confirmed stage 3 breast cancer. Shortly after, scans showed the cancer had spread to her spine, escalating her diagnosis to stage 4.

Nina quickly shifted into a problem-solving mode, managing her treatment plan, scheduling appointments, and staying organized amidst the overwhelming process. She expressed how emotionally challenging it was to balance her feelings while supporting the emotions of those around her.

Her treatment plan included chemotherapy, followed by a lumpectomy, and radiation on both her breast and spine. She continues to undergo regular infusions and medications to keep the cancer at bay. While the chemotherapy caused a lot of side effects, including hair loss, neuropathy, mouth sores, fatigue, and brain fog, she found strength in adapting to these challenges. Despite needing to remain in treatment indefinitely, her current scans show no evidence of disease.

One of the most challenging aspects of her cancer experience was induced menopause, which affected her physically and emotionally, particularly the loss of her ability to carry children. The lifestyle changes brought about by cancer were also difficult for Nina. However, she found solace in documenting her experience online, helping others understand the realities of living with cancer, especially young women and women of color.

Sharing her story became a way to raise awareness and a form of therapy. Nina’s advice to others is to advocate for themselves and to practice radical acceptance of the life changes that cancer brings. She emphasizes the importance of self-love and reevaluating what truly matters during difficult times.

Name: Nina M.
Diagnosis:
- Breast Cancer
Staging:
- Stage 4
Symptoms:
- Hardening under the armpit
- Lump & dimpling in the left breast
Treatments:
- Chemotherapy
- Surgery: lumpectomy
- Radiotherapy
- Hormone-blocking medication
- Targeted therapy

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Thank you for sharing your story, Nina!

Inspired by Nina's story?

Share your story, too!

Samantha’s Stage 4 ER+ PR+ HER2+ IDC Breast Cancer Story

Post author By Katrina Villareal
Post date July 25, 2024
No Comments on Samantha’s Stage 4 ER+ PR+ HER2+ IDC Breast Cancer Story

August 7, 2024

Samantha’s Stage 4 ER+ PR+ HER2+ IDC Breast Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Samantha’s journey with stage 4 breast cancer began in March 2019 when she was 22. Living in Virginia with her husband and young daughter, she first noticed a lump in her breast. Initially dismissed by her primary care physician and an ultrasound tech as an infection, a biopsy eventually confirmed her cancer diagnosis. Despite the initial belief that her cancer was at stage 1, further tests revealed it had spread, making it stage 4 breast cancer.

Her treatment plan involved chemotherapy, which she had to stop early due to severe neuropathy, followed by a lumpectomy, radiation, hormone therapy, and targeted therapy. Despite significant side effects, she managed to maintain no evidence of disease (NED) for some time. After two years of hormone therapy, Samantha decided to take a break to try for a baby, which led to a successful pregnancy in April 2022.

However, during her pregnancy, she and her family moved to Alaska. While there, Samantha’s cancer recurred, causing severe back pain due to lesions in her spine and pelvis. Unable to travel back to Virginia without stabilizing her spine, she underwent surgery and later radiation before returning to her oncologist for a new treatment plan. She joined a clinical trial involving a new radium drug for bone metastases but had to leave it due to mixed results.

Samantha then resumed hormone therapy and targeted therapy with different drugs than before. Throughout her treatment, she emphasized the importance of careful decision-making, the support of her family, and maintaining a positive outlook.

Name: Samantha L.
Diagnosis:
- Breast Cancer
- Invasive ductal carcinoma (IDC)
- ER+
- PR+
- HER2+
Staging:
- Stage 4
Initial Symptom:
- Lump in breast
Treatment:
- Chemotherapy
- Surgeries: Surgery: lumpectomy, spinal surgery (fractured vertebrae)
- Radiation
- Hormone therapy: anastrozole & letrozole
- Targeted therapy: abemaciclib & ribociclib

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

I went to my regular doctor who said it was nothing. I was so young that it couldn’t be breast cancer.

Introduction

My husband and I live in Virginia and have a 1-½-year old daughter. I was diagnosed with stage 4 breast cancer at 22 in March 2019.

Pre-diagnosis

Initial Symptoms

It was the day after Valentine’s Day. My husband and I weren’t married yet. He was my boyfriend at the time. My mom loves to celebrate Valentine’s with the family. The celebration had ended and we were watching TV. He hugged me from behind and squeezed me tight. When he did, I felt some pain in my left breast. I realized there was a lump.

PCP Appointment

I went to my regular doctor who said it was nothing. I was so young that it couldn’t be breast cancer. They told me to put a warm compress on it, but that didn’t do anything. They put me on antibiotics thinking it was an infection and, of course, that didn’t help.

They finally sent me for an ultrasound and the ultrasound tech looked at it and said, “This looks like an infection. You’re 22 and I’ve never seen breast cancer in a 22-year-old, so that’s not what it is. But just in case, you can get a biopsy if you want.”

Getting a Biopsy

I almost left the hospital and went home without doing anything about it. He said it wasn’t urgent, but there was an opening so I got the biopsy done.

When you’re 22 and recently graduated college, cancer is not on your mind at all.

Diagnosis

Biopsy Results

The results revealed abnormal cells, so I had to go in for a second biopsy. That was the one that told us that I had breast cancer.

Reaction to the Diagnosis

When you’re 22 and recently graduated college, cancer is not on your mind at all.

My breast surgeon called me on the day the abnormal cells came back and said, “You need to come in again.” I went in and that’s when she started to prepare me that it could be cancer. She ended up calling me when she found out that it was.

She told me she cleared out an appointment for me at the end of the day and that we should get more information about the hormone receptors at that point. She scheduled an appointment so that I could talk to my family and get all of our questions written down before the appointment.

Treatment

Discussing the Treatment Plan

I didn’t know anything. I thought it was stage 1. I went through it in stages, always thinking that it was the least concerning thing. I don’t think there’s a big shock. It came about over time as we had more questions and learned more about it.

She was suspicious right when I walked in. She wanted to check the lymph nodes under my arm because that’s the first place cancer spreads. My boyfriend, my parents, and a friend who’s a doctor came to the appointment with me. They all had questions and wanted to help me and know everything. They went into a separate room and she took me back and did the biopsy under my arm.

When we went back, she laid out a plan. It was March and she said we should be done with all active treatment by Christmas. She said the standard is chemotherapy and then surgery, which was going to be a lumpectomy or a mastectomy, and then radiation. Since my cancer was hormone-positive, I would be on hormone therapy for some years after.

The spot was more contained. They said it was probably cancer because the chemo shrunk it. Then we realized I was stage 4 breast cancer.

Chemotherapy

There were a few hiccups. I had to stop chemo early because Taxol (paclitaxel) was causing neuropathy in my fingers. It got too bad and my oncologist didn’t want permanent nerve damage to happen. I was a little bummed about stopping Taxol early because it made me feel like I wasn’t doing everything that I could, but it’s what happens when your side effects get too bad.

Originally, all of my doctors wanted me to do a double mastectomy because I was young. Younger women tend to choose a double mastectomy because it gives people peace of mind to make sure all of the breast tissue is removed and there’s no place for cancer to grow.

I had a scan where they saw a spot in one of my ribs. They weren’t positive it was cancer and it was in a weird location that they wouldn’t be able to biopsy it. We talked to neurosurgeons about removing it, but we weren’t sure if it was cancer.

When I had chemo and scans again, the spot was more contained. They said it was probably cancer because the chemo shrunk it. Then we realized I was stage 4 breast cancer.

Lumpectomy

At this point, mastectomy isn’t going to matter too much because the cancer has already spread past the breasts. If I do a lumpectomy, the recovery time is shorter so I could get started with radiation immediately after. They wanted to do radiation on the rib to target the spot that was seen in the scan since it couldn’t be removed with surgery.

I ended up doing a lumpectomy, which is weird because when you think about cancer when you don’t have it, you think you’d do the most drastic option possible. But when you’re faced with your options, you’re not always picking that for yourself and your situation.

Radiation

After the lumpectomy, I did radiation and finished that in November.

My case wasn’t as bad of a stage 4 breast cancer case, so we were hopeful that I was cured at that point and that getting pregnant would be fine.

Hormone Therapy & Targeted Therapy

I started hormone therapy and targeted therapy after radiation and did that for two years. Since I had radiation on that tiny spot on my rib, I had no evidence of disease (NED) on scans.

I was having a lot of side effects with hormone therapy and targeted therapy. Being NED for so long, I didn’t even know if these therapies were doing anything or just making me miserable. It was causing a lot of physical and mental side effects that were the hardest time in my life so far. Way harder than chemo, radiation, and the rest of it.

I wanted to stop early. My oncologist wanted me to get to three years, but I could only make it two.

Fertility Post-Treatment

I wanted to try having a baby so I asked him. He cited some recent studies about women who had breast cancer, stopped hormone therapy after two years, took a break, got pregnant, and then went back on treatment. The chances of their cancer reoccurring didn’t increase. Some people had their cancer come back and some people didn’t, but getting pregnant didn’t affect that.

However, the study was for stage 3 and below and not stage 4 breast cancer. Since I only had a tiny spot of cancer and it wasn’t in multiple places throughout my body, my case wasn’t as bad of a stage 4 breast cancer case, so we were hopeful that I was cured at that point and that getting pregnant would be fine.

I got off hormone therapy and targeted therapy. I started in November 2019 and ended in October 2021. I wasn’t having periods the whole time and then my cycles returned to normal. I felt amazing. I think it was because I wasn’t on hormones anymore. Then I got pregnant in April 2022.

You can’t let the fear of cancer coming back control your life. You can’t make every decision based on whether your cancer comes back or not.

Pregnancy was great. I still had all of the same pregnancy side effects, like nausea, but I was so used to being nauseous from treatment that it didn’t affect me. I just felt good that I wasn’t on medication. There were lingering side effects from both chemotherapy and targeted therapy. I still have hot and cold sensitivity in my fingers, toes, ears, and teeth. I have dry eyes.

It can be difficult because people don’t want their cancer to come back. They don’t want their child to be left without a mother. That’s the main worry people have. My philosophy on it is that you’re not a statistic. You don’t know what could happen in your life and you can’t let the fear of cancer coming back control your life. You can’t make every decision based on whether your cancer comes back or not.

If I can, then I will. If I feel good, then I’m going to do this or that. It’s not a decision that I made easily. My husband and I talked through it and we spoke to our doctor about it. We did what was best for him and what was best for our family specifically. It’s not for everybody. You have to figure it out for yourself.

There are all these medical questions that you need to ask your doctor, but it can be a good thing and possible. There’s a lot of new research coming out. You don’t have to be afraid of having hormones in your body after having hormone-positive cancer.

Moving to Alaska

In the middle of my pregnancy, we moved to Alaska, so we were away from my oncologist for a while. I was still keeping in touch with him, but we were hopeful that I was cured since I had scans that showed no evidence of disease for so long after my daughter was born. I was breastfeeding, so we didn’t do a lot of monitoring because I was still feeling good and there were no new symptoms.

Several lesions throughout my spine and pelvis were found on the MRI.

Cancer Recurs

We were on a mountain one day taking family photos when I collapsed to the ground. My back hurt so bad that I couldn’t get up. Five guys had to carry me to the car. I went to the ER that day and eventually had a scan. The results showed a fracture in my spine because there was cancer growing in it, crushing the vertebrae, and causing the pain. Several lesions throughout my spine and pelvis were found on the MRI as well.

I couldn’t get on a plane to fly back to Virginia because they were worried that if something shifted, I could be paralyzed, so I needed to have surgery to stabilize my spine before moving back. We couldn’t even think about treating the cancer until that happened. It was scary because we weren’t doing anything to address the cancer.

I had surgery in the middle of August followed by a very painful recovery. I was already in a lot of pain beforehand, but I needed two weeks of recovery. When we got to Virginia, I met with my oncologist and came up with a new plan.

New Treatment Plan

They thought I needed radiation on the vertebra that had the fracture because there were other spots throughout my spine and pelvis, but that was the biggest and causing the most problems. We did three rounds of radiation on that first.

My oncologist knew that hormone therapy and targeted therapy made me miserable, so he gave me three options. He said I could go on hormone-targeted therapy, I could take a chemo pill called Xeloda (capecitabine), or I could get on a clinical trial.

I couldn’t start the trial until 14 days after my last radiation, so for two weeks, I wasn’t doing anything and I could feel things getting worse.

Joining the Clinical Trial

He was excited about the clinical trial because it used a new radium drug targeting bone metastases. It was already an approved treatment for prostate cancer with lots of success and this trial was testing it on metastatic breast cancer patients. We went with that because he said it could eliminate what’s in my bones.

The problem was that I didn’t know which group I would be in. They were going to tell me, but I was either going to be in the group getting chemo or in the group getting chemo and the radium drug.

That was a stressful time because there was a period when I had to wait to get approved for the trial. I couldn’t start the trial until 14 days after my last radiation, so for two weeks, I wasn’t doing anything and I could feel things getting worse.

I ended up in the radium arm of the trial, which was good, and I did that for a while. It helped with my pain a lot and decreased some of the markers in my body.

I ended up having to go off the trial because my scan showed mixed results. Some areas were better, but some areas were worse. I think it’s because my original scan was in September and not right before I started the trial. There was that two-week period when things got worse, but there’s no way of knowing if that was it or not.

Hormone Therapy & Targeted Therapy

After the trial, I talked with my husband and my family and decided that I was going to give hormone therapy and targeted therapy another try. My oncologist recommended trying a different drug than what I was on before, so that’s what I’m doing now. I’m on anastrozole and abemaciclib, which is slightly different from the letrozole and ribociclib that I did in 2019.

The whole point of stage 4 treatment is to find a treatment that you can tolerate for the rest of your life.

Treatment Decision-Making

People don’t realize how much thought is put into treatment-decision making. You think about it for days, weeks, and months, talking it through and talking to doctors. I think that experience was good because it led me to my decision and made me realize that I’m exactly where I should be.

Having a Strong Support System

I have a supportive husband and family who help talk through things with me. I think about things a lot, pray all the time, and try to get the wisdom to make all these decisions in a way that’s going to be the best for myself, my husband, and my daughter.

It’s not just about patience. It takes a lot of work and it’s not something that you make a split-second decision about. There’s a lot of thinking and praying.

The whole point of stage 4 breast cancer treatment is to find a treatment that you can tolerate for the rest of your life. When we went to a new center, found out all the information, and talked with my oncologist more about whether this was realistically going to be the best option for me, that’s what made us think that this is what’s going to be good.

It wasn’t just me. My husband was so afraid of me being on it again. He knew how much I suffered when I was on it. It affects both of us. Going on it for the second time around was nice. It was working better. I don’t know if it’s because I went through a pregnancy, I’m older, it’s a different drug than before, or if I have a different mental attitude towards it.

If I didn’t have a baby who was so dependent on me, I don’t think I would’ve even considered going back on hormone therapy.

Everything happens for a reason. Some people thought it was a dumb decision for me to get pregnant, but having her is what made me do this treatment in the first place. If I didn’t have a baby who was so dependent on me, I don’t think I would’ve even considered going back on hormone therapy. I would’ve done the chemo pill. It could have worked, but it could not have worked. Having her around gave me this huge drive to live for as long as possible. It’s what made me even try it again in the first place. I wouldn’t have even known that it would be better this time around.

A cancer diagnosis is harder on the family than on the person going through it. Your family loves you. A lot of family members feel like they’re being pushed away and that they’re not wanted. My instinct is to do that because I don’t want to put a burden on them. But at the end of the day, it’s important that they’re there. The best thing that a family member can do is be there and listen. What to say and do is going to be different for everybody, but being there is a good place to start.

Words of Advice

Don’t wait. If you want to do something, do it. You never know when your life is going to dramatically change. I didn’t realize how much I enjoyed picking up my baby and rocking her to sleep then all of a sudden, it’s taken away from me.

When we moved to Alaska, people asked why we were going. We had an opportunity, so we’re going to move to Alaska for a year. We probably could never do that again because now I need all this treatment so I’m back in Virginia where my original team is.

If you want to do something, do it while you can because you never know when you’re physically not going to be able to do it.

Don’t wait. If you want to do something, do it. You never know when your life is going to dramatically change.

Thank you for sharing your story, Samantha!

Inspired by Samantha's story?

Share your story, too!

Palbociclib Side Effects

December 13, 2023

Palbociclib Side Effects & Patient Stories

Written by:

Chris Sanchez

Palbociclib, commercially known as IBRANCE, is a treatment for a specific kind of metastatic breast cancer, or breast cancer that has already spread to other parts of the body, known as HR+/HER2- mBC. Palbociclib may be able to renew patients’ hope and offer them a greater sense of possibility.

Are you a HR+/HER2- mBC patient who is considering taking palbociclib, or is about to start taking it? In this article, we provide key information about palbociclib to help you and other patients prepare to take this therapy, including what to tell your doctor before you begin; also tell you about the side effects you might experience when taking it; and provide links to a couple of real-life patient experiences shared by patients who have used palbociclib as part of their cancer treatment.

Table of Contents

Palbociclib Side Effects & Patient Stories

What is palbociclib, and what is it used for?

Palbociclib is a kind of cancer medicine called a CDK 4/6 inhibitor that’s prescribed for a specific type of metastatic breast cancer known as HR+/HER2- mBC. Pfizer, IBRANCE manufacturer, describes it as a “first-of-its-kind treatment” for patients with this kind of cancer.

Is palbociclib chemotherapy?

Palbociclib isn’t a traditional form of chemotherapy. It’s a targeted therapy that must be taken in combination with certain hormonal therapies like aromatase inhibitors and fulvestrant and which is aimed at specific kinds of breast cancer cells.

“My first line of treatment in 2017 was IBRANCE, which was approved by the FDA in 2015. I was able to be on a medication that had just recently been approved by the FDA, which is huge. That line or that class of drugs, the CDK4/6 inhibitors, has really changed the landscape of breast cancer. Starting in 2015 with IBRANCE, and then there’s now a fourth one that’s being added to that class. People are living a whole lot longer with far less side effects.”
Abigail, Stage 4 Metastatic Breast Cancer

What are CDK 4/6 inhibitors?

CDK 4/6 inhibitors are cancer treatments that disrupt how breast cancer cells divide and multiply. To do so, these treatments target specific proteins called cyclin-dependent kinases 4 and 6, or CDK 4/6 for short.

CDK 4/6 proteins are found in both healthy cells and cancer cells, and control how quickly these cells grow and divide. In breast cancer, these proteins can cause cancer cells to grow and divide wildly. CDK 4/6 inhibitors target these proteins with the aim of slowing down or even stopping cancer cells growth altogether. This is why palbociclib and the other CDK 4/6 inhibitors, KISQUALI (ribociclib) and VERZENIO (abemaciclib), are known as targeted therapies.

How and when is palbociclib used?

Palbociclib is prescribed for hormone-receptor positive (HR+), human epidermal growth factor receptor 2-negative (HER2-) metastatic breast cancer (mBC)—in short, HR+/HER2- mBC. This is the most common subtype of metastatic breast cancer, representing approximately 60% of all breast cancer cases.

The growth of hormone-receptor positive breast cancer cells is supported by one of both of the hormones estrogen or progesterone. And HER2-negative cancers test negative for the HER2 protein, which is another protein that can promote cancer cell growth.

“I’m on a medication called IBRANCE — that’s three weeks on, one week off — and that’s what knocks down my immunity. [Sometimes], I have to take an extra week off because my immunity is too low to continue that one so it’s a little bit of a dance with that one. It’s all working.”
Bethany, Stage 4 Metastatic Breast Cancer

Palbociclib is always prescribed in combination with hormonal therapies such as aromatase inhibitors and fulvestrant. Palbociclib is available in pill form and is taken daily, by mouth and with food.

Palbociclib is given out in four-week cycles, the last week of which is a week-long break—which means that you’ll need to take it for 21 days straight, followed by a 7-day off-treatment period, to comprise a complete cycle of 28 days.

How much does palbociclib cost?

The cash price for palbociclib, using an online coupon, can be $13,000 to $13,500 for a 21-day supply. Most people won’t be paying this price, though—this is the cash price only, with a discount coupon, and is not valid with insurance plans. The prescription cost may be lower for those who have commercial insurance.

If you’d like to explore getting a copay card or copay assistance, Pfizer can help. The Pfizer Oncology Together Co-Pay Savings Program may help eligible, commercially insured patients save on their out-of-pocket costs. Pfizer Oncology Together can connect patients who are uninsured, underinsured, or have government insurance with resources that may help pay for a prescription.

Palbociclib isn’t currently available in a generic version.

How effective is palbociclib?

Pfizer has shared the results of clinical trials that tested IBRANCE in combination with the aromatase inhibitor letrozole (more than half of the patients involved in the trial saw their tumors shrink in size, versus 44% who took letrozole and a placebo), and in combination with the hormonal therapy fulvestrant (24.6% of these patients saw their tumors shrink vis-a-vis just 10.9% of those who took fulvestrant and a placebo).

What to expect when taking palbociclib

When taking palbociclib, side effects can be expected—some of which are serious. Be sure to share any side effects you may experience with your doctor immediately. Your doctor may interrupt or stop treatment with it completely if any of the symptoms you experience are severe.

Palbociclib side effects

“My first line of treatment after I finished chemo was IBRANCE and letrozole, and I was able to be on that for 2 years.
“There were very low side effects. Most targeted therapy affects the bone marrow, so we had to watch for low white blood cells, or neutropenia. I was always immunocompromised and having to be careful. The main side effects were the blood counts and some fatigue.”
Abigail, Stage 4 Metastatic Breast Cancer

Palbociclib side effects can include but may not be limited to the following:

Low white blood cell counts (neutropenia) are very common when taking palbociclib and may lead to serious infections. Your white blood cell counts will need to be checked before and during treatment. During treatment, you’ll need to tell your doctor right away if you experience any symptoms of neutropenia or infections such as fever and chills.
Palbociclib may cause lung problems (pneumonitis) stemming from severe inflammation, including chest pain, cough with or without mucus, and trouble breathing or shortness of breath.
Low red blood cell counts and low platelet counts. Make sure to inform your doctor immediately if you bleed or bruise more easily, feel dizzy or weak, and/or experience nosebleeds and shortness of breath while on treatment.
Possible allergic reactions to palbociclib, including hives, difficulty breathing, and swelling of your lips, tongue, face and/or throat.
Fertility problems in male patients.
Tiredness.
Nausea.
Sore mouth.
Abnormalities in liver and blood tests.
Diarrhea.
Hair thinning or hair loss.
Vomiting.
Rashes.
Loss of appetite.

What to tell your doctor or healthcare provider before starting treatment with palbociclib

Before starting treatment, you’ll need to inform your doctor about all your medical conditions, including:

Signs and symptoms of possible infection, such as fever or chills.
Liver or kidney problems.

You’ll also need to tell your doctor if you’re pregnant or planning to get pregnant, or, if you’re male, have a female partner who can get pregnant. Palbociclib can harm unborn babies.

Female patients who can become pregnant will need to take effective birth control for the duration of their treatment and up to three weeks after its final dose.
Male patients with female partners who can become pregnant will need to use effective birth control during treatment and for at least 3 months after taking their final dose.

Lastly, it would be good to determine if you’re allergic to palbociclib before you start taking it.

Foods to avoid while on palbociclib

Do not eat foods containing grapefruit or drink grapefruit juice while on this treatment. According to Pfizer, they may actually increase the amount of palbociclib in your bloodstream.

Stories of patients taking palbociclib

Andrea S., essential thrombocythemia (ET) progressing to Myelofibrosis

Symptoms: Fatigue, anemia
Treatments: Targeted therapy (JAK inhibitor), blood transfusions, allogeneic stem cell transplant

Holly S., Myelofibrosis

Symptoms: Severe fatigue, throbbing pain in left calf, significant weight loss, itching and rashes, bruising, and shortness of breath

Treatments: Chemotherapy, Immunotherapy

Ben H., Myelofibrosis

Symptoms: None; caught at a routine blood test
Treatments: Hydroxyurea & aspirin, ruxolitinib

Doug A., Myelofibrosis

Symptom: Fatigue
Treatments: ruxolitinib, selinexor (clinical trial)

Sources

About IBRANCE

U.S. Food and Drug Administration (FDA)

BreastCancer.org

National Cancer Institute (NIH)

Tags breast cancer, breast cancer article, HR+/HER2- mBC, IBRANCE, metastatic breast cancer, Palbociclib, side effects, targeted therapy

How Michelle and Jolene Each Live with Malignant PEComa, an Incredibly Rare Type of Cancer

The Red Flags for Michelle and Jolene

Hysterectomy Uncovering Their Cancer

Finding Out They Have Stage 4 Cancer

Discussing The Only Treatment Option for Malignant PEComa Cancer

Looking at the Future Living with Malignant PEComa Cancer

What Michelle Has Learned

Jolene’s Biggest Advice

Raising Awareness for PEComa Cancer

Inspired by Michelle and Jolene's story?

Other Rare Cancer Stories

How I Learned to Live with CLL—And Stop Letting It Control Me

Introduction

How She Found Out She Had Cancer

Finding the Right Doctor

Learning She Wouldn’t Get Treatment Right Away

Noticing More Symptoms from the Cancer

Her Treatment Experience

Being Off-Treatment

Words of Advice

Inspired by Margie's story?

More Chronic Lymphocytic Leukemia (CLL) Stories

Nina’s Stage 4 Metastatic Breast Cancer Story

Inspired by Nina's story?

More Metastatic Breast Cancer Stories

Samantha’s Stage 4 ER+ PR+ HER2+ IDC Breast Cancer Story

Introduction

Pre-diagnosis

Initial Symptoms

PCP Appointment

Getting a Biopsy

Diagnosis

Biopsy Results

Reaction to the Diagnosis

Treatment

Discussing the Treatment Plan

Chemotherapy

Lumpectomy

Radiation

Hormone Therapy & Targeted Therapy

Fertility Post-Treatment

Moving to Alaska

Cancer Recurs

New Treatment Plan

Joining the Clinical Trial

Hormone Therapy & Targeted Therapy

Treatment Decision-Making

Having a Strong Support System

Words of Advice

Inspired by Samantha's story?

More Metastatic Breast Cancer Stories

Palbociclib Side Effects & Patient Stories

What is palbociclib, and what is it used for?

Is palbociclib chemotherapy?

What are CDK 4/6 inhibitors?

How and when is palbociclib used?

How much does palbociclib cost?

How effective is palbociclib?

What to expect when taking palbociclib

Palbociclib side effects

What to tell your doctor or healthcare provider before starting treatment with palbociclib

Foods to avoid while on palbociclib

Stories of patients taking palbociclib

Sources

Join Our Community