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 for treatment decisions.
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 for 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.
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.
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.”
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.”
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.
“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.”
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.
