Treatment and Clinical Trials

Vera Pereskokova was getting dressed in her hotel room while on a business trip in March 2012 when she felt a lump on her right breast. She called her doctor right away to schedule an appointment and was assured it was likely nothing to worry about, so she wasn’t overly concerned when she went in for her mammogram and ultrasound. It came as quite a shock then when the doctor performing Vera’s ultrasound told her that she was fairly certain the lump was malignant. Vera was only 28 at the time.

A week later she was officially diagnosed with Stage II Invasive Ductal Carcinoma and widespread Ductal Carcinoma in Situ in the same breast. Vera underwent a double mastectomy, axillary node dissection, 8 rounds of chemotherapy, and was started on a 5-year regimen of Tamoxifen. She was told by her doctors that she had only a 2-3% chance of recurrence and that she would be free to “go live her life” once her treatment was completed.

But in October of 2015, Vera began experiencing upper abdomen pain. When her labs came back showing elevated liver enzymes, her doctor ordered a chest and abdomen CT. Her oncologist confirmed the devastating news- Vera had Stage IV metastatic breast cancer with numerous tumors on her liver.

Currently, Vera does not have any evidence of cancer in her breasts, but it is still referred to as breast cancer due to its origin. There are too many tumors on her liver to do surgery, and radiation is too damaging to the liver. She is receiving the chemotherapy drug, Taxotere, every three weeks and is enrolled in a Phase II clinical trial where she receives an investigational medication called Indoximod. This clinical trial was suggested to her by her medical team at the time of her diagnosis.

Vera calls her enrollment in the clinical trial a “no brainer”. She was a candidate based on her type of breast cancer, HER2-, ER+. She was already going to be getting Taxotere as part of her treatment regimen and thought it made sense to try another therapy that was showing success in early studies.

Vera is followed closely by her research nurse, meets with her oncologist every three weeks when she received chemotherapy, and gets scanned every 6 weeks. The study is a double-blind placebo-controlled study. This means that some of the study participants are getting the trial medication, while others are given a fake treatment, referred to as a placebo or a sugar pill. Vera offers some advice for women with breast cancer regarding treatment decisions. She says, “I always do as much research as I can and listen to my gut as far as treatments go. That's what makes me comfortable, and I think that will differ from patient to patient. It's important to understand where your comfort level lies in making treatment decisions - is it through doing your own research, asking your doctor questions, trusting that your medical team knows best, etc. - and then let it be. You'll drive yourself crazy if you constantly think ‘what if’ and second guess your decisions.”

Treatment and Clinical Trials

There is not a simple “one size fits all” approach for the treatment of Metastatic Breast Cancer. Your medical team will look at several factors to determine what is the best treatment for you. These include things such as your hormone receptor and HER2 receptor status, where the cancer has metastasized, and your previous treatments and response.
Let’s take an overview of some of the treatment options available. You will find that many of the same treatments are used for early stage breast cancer, but will not be as aggressive in Stage IV since treatment will be long term. For a more in-depth look, the National Comprehensive Cancer Network offers some great information on metastatic breast cancer.

Hormone Therapy
If the cancer cells are found to be hormone-receptor positive, this is usually the first line of treatment. Hormone therapy will attempt to block or lower the amount of hormones in the body, in the attempt to slow the growth of new cancer cells.

Chemotherapy
Chemotherapy is used to destroy cancer cells, but can also kill normal cells in the process. Chemotherapy may be used when hormone therapy ceases to be effective or when the cancer cells are hormone-receptor negative.

Targeted Therapy
This may be used for cancer cells that are HER2 positive. Targeted therapy works by blocking the HER2 protein that is plays a role in cell cancer growth. Targeted therapy has fewer side effects than chemotherapy because it has less of an effect on normal cells.

Radiation
Radiation may be an option after chemotherapy is complete. Beams are aimed at the tumor to try and destroy cancerous tissue.

Clinical Trials
Clinical trials are voluntary studies that test new medical treatments on humans. Clinical trials have different phases (0 to IV) each of which address specific questions regarding whether a particular treatment is safe, if it works and how effective it is compared to the current treatment being used. Often you may learn about different clinical trials from your 
doctor, but you can also search for clinical trials yourself. 


Some good places to start are:

·        Breastcancertrials.org
·        Clinicaltrials.gov
·        Cancertrialshelp.org
·        Sarahcannon.com
·        MBCN.org

Breast cancer patients can benefit from being a part of a clinical trial by receiving access to some of the most cutting-edge therapies, as well as close monitoring by medical professionals during the trial. Many patients also feel a sense of pride knowing that they are contributing to the future of cancer research and treatment.
As with any medical treatment, there are also risks involved with being part of a clinical trial. There are more unknowns with any investigational treatment, so it is important to discuss these risks with your doctor.

Participation in a clinical trial will often mean more doctor's appointments and testing, sometimes requiring you to travel. If you have insurance, make sure to find out what costs will be covered. Study sponsors will also often help pay for the treatment and procedures and may even cover extras like travel expenses, so look into what is available to you.
You are likely to experience many emotions when participating in a clinical trial. From fear of the unknown to excitement about receiving a potentially helpful treatment, try to take all of this into consideration. Know that the decision is ultimately yours.

Alternative Treatments

You may also want to consider alternative therapies. While these are not seen as standard medical treatment, things such as acupuncture, meditation and art therapy may ease your side effects and lower your stress levels, making it easier to get through 
each day.

Whatever treatment decisions are made, it is critically important that you feel comfortable talking with your medical team. Since your medical management will be ongoing, you need to be able to communicate any concerns, questions or troublesome side effects. The goal of treatment is to provide you with the best quality of life while managing the disease, and your input will ensure that happens.

Living for Now

July 23, 2013 at 2:00 pm is when my life changed forever. I will always remember that moment when life as I knew it stopped, and I started planning for my physical demise. I was 32-years old and 34 weeks pregnant with my first child, when I was taken into an exam room to receive my breast biopsy results from a lump I found. I was accompanied by not one, but two nurses as my husband and I sat waiting for the interventional radiologist. The moment he walked in, I knew the news wasn’t good. The normally cheery and engaging doctor couldn’t even make eye contact with me. As he began talking, there were no mincing words. He came right out and said it: “This is a breast cancer.”

I didn’t hear much after that. I was in shock and disbelief. My mind immediately went to a dark and sad place. Before my baby was even born, I was thinking about all of the milestones of his I would miss and all the memories we wouldn’t be able to make together. I had breast cancer. And most likely Stage III breast cancer due to the size of the tumor and the likely involvement of lymph nodes. Little did I know, the news would get worse.

But before it got worse, we got to experience the best moment of our lives on August 15^th when Logan Kristopher was born. In the midst of so much fear and sadness in the past few weeks, we had a few days of happiness as we soaked in our first moments as a family of three.

Four days later, I had my first PET scan for staging purposes. While in recovery from having my port placed with my husband by my side, my surgeon came in to tell me that the cancer had spread to my liver and multiple bones. I had Stage IV metastatic breast cancer. Once again, I didn’t hear or comprehend a whole lot of what he said after that. But, there was one thing he said that I did hear which resonated with me. As we cried in disbelief, he knew we must be thinking about how little time I may have left. My surgeon, who had a compassionate bedside manner, gently took my hand, looked me in the eyes and said, “Kristin, you are here NOW. Go enjoy a date night out, go to the movies, take your son for a walk.”

At the time, it sounded almost callous. I thought what nerve for him to tell me that I have Stage IV cancer and then in the same breath, tell me to go enjoy a night out like nothing was wrong. Was he crazy? Was he being patronizing? My life was over as I saw it. How could I ever enjoy the simple pleasures of life again with this diagnosis looming over my head? It seemed near impossible in that moment.

The weeks and months that followed proved to be some of the most difficult of my life. I was sad. I was angry…really angry. I welcomed sleep because at least when I was sleeping I wouldn’t be thinking of how little time I may have left with my son and family. When I woke in the morning, I would experience a brief moment of thinking it was all a bad dream, and then reality would set in and I would retreat back into darkness. All I could focus on was the future and how much of it I may not get to experience.

     I can’t remember when exactly it happened, but at some point several months later, a light switch went off and I had that “ah ha!” moment, as Oprah Winfrey has described. I suddenly understood what my surgeon was talking about the day he told me my cancer had spread and oh, by the way, go have fun! He was RIGHT! I WAS still here, at this very moment in time, so why was I not getting busy living? I was so focused on the uncertainty of my future that I was missing out on the present. That’s when I made some changes in my life.

Here are a few things I do regularly to help me live in the moment:

Meditation. I have never meditated before but my husband and I started doing it together every day with the help of an App called Headspace. Mediation not only helped ease my anxiety, but it also helped me to learn how to live more in the moment and to experience life as it is right now.

Exercise. Exercise has always been an important part of my life and may be even more so now. Nothing makes me feel more “normal” or alive than a really great workout. The more I move, the better I feel physically and mentally.

Do what you love. I am a nurse practitioner and I have been working with heart failure patients for many years. I love my patients and I love what I do. It is part of who I am. There was no question that I wanted to return to work after I finished my initial chemo. When I returned to work, I found that not only did I regain my sense of purpose, but I was able to focus on other people’s health issues which was a great distraction from my own. I know working is not for everyone, but you should do what brings you joy and purpose.

Practice gratitude. This is something I just recently began to practice on a daily basis by keeping a daily gratitude journal. I have found that the more I focus on things in my life to be grateful for, the more the fear, sadness, and negativity seem to just melt away.

"It’s been a tough road but my metastatic diagnosis has taught me some valuable lessons. I believe I live a much more fulfilled life now because of the steps I’ve taken as mentioned above. I am enjoying living in the present with my son who is now two and a half years old. I have gotten to experience many of his milestones which I am so grateful for every single day!"

Managing Your Life

Four years ago, Tricia Russo seemed to have it all going for her. Having just turned 30, she was happily married, living in Los Angeles and working a dream job in development at Walt Disney Motion Pictures. She and her husband were excitedly looking to the future, anticipating the purchase of a home and beginning a family.

Then Tricia found a lump on her breast.

At her first visit to her general practitioner, she was told that no testing was needed- she was young, had no family history and no other symptoms. She went to her gynecologist for a second opinion and was told the same thing. But a few months later when she started experiencing pain in her breast that extended into her armpit, she went back to her GP and was sent for a mammogram, ultrasound and biopsy. Tricia had Stage IIb breast cancer.

Tricia was ready to jump into treatment, but with her desire to have children one day, she first consulted with a fertility specialist about harvesting her eggs. She was advised, however, that the risk of delaying treatment was too great. She began a series of 12 chemotherapy infusions, starting with AC (Adriamycin and cyclophosphamide) chemo and ending with T-Taxol. In May of 2012, Tricia underwent a single mastectomy, which was then followed by weekly radiation.

Tricia was lucky to have a lot of support during her treatment. Her family from New Jersey rented a small studio around the corner from her place in LA, and members took turns flying out to help. She was able to continue to work, and her oncologist was conveniently located across the street from her office.

Tricia completed her treatment and couldn’t wait to move forward after one more year of hormone therapy. However, in February 2013, while visiting her family in New Jersey, she began experiencing extreme headaches. An MRI revealed a brain tumor and she was rushed into surgery. Partial radiation then followed.

Now with a Stage IV diagnosis, Tricia knew her life would never be the same. She would no longer be able to have children of her own. She made the decision to leave her stressful career and move to New Jersey to be closer to her family, while her husband remained in LA.

For a few years, Tricia worked for her family’s real estate company in New Jersey. She and her husband made the best of their bi-coastal marriage, with frequent flights back and forth as well as meeting in exciting locations like Peru, Paris and Ireland. They continued to think often about starting a family.

For a period of time in 2014, Tricia considered going against medical advice and going off of her medications so she could attempt in vitro fertilization. But before she could proceed, she experienced another recurrence in her brain and underwent gamma knife surgery. During this time, Tricia decided to start filming her journey.

Tricia has now been stable for almost two years. She is back living in LA, in a house that she and her husband recently purchased. She continues to take Tamoxifen daily and receives Lupron injections every three months.  She is monitored with brain scans four times a year and a mammogram and MRI of the chest, abdomen and pelvis once a year.

In the last year, Tricia and her husband found an egg donor and a surrogate and are hopeful to make their wish for a family come true. They have also started a non-for profit organization called the Cyan Gray Hope Foundation to help fund their documentary, detailing their story through cancer and fertility challenges. Tricia is hopeful that this film will act as a resource for other women like her, one that wasn’t available to her when she was searching for information.

A dramatic change from her old 12-hour workdays, Tricia now works from home. She still does brochure work for her family business remotely, but dedicates a good portion of her day to producing her documentary. Tricia recognizes the importance of fueling her body with proper nutrition and exercise like yoga. She teaches meditation and vision boarding workshops to others. She takes time to enjoy dinners with friends and snuggling her two puppies.

Tricia advises other women with Metastatic Breast Cancer to listen to their hearts and maintain hope as they live out each day though it may not always feel easy. “Sure, fear of mortality creeps in here and there,” she says, “but I have found that if I focus on all the good in my life and the hope that I still have for my future, the fear monster goes away.”

A diagnosis of Metastatic Breast Cancer is life-altering. From big things like your career and family to the minutiae of your daily routine, you will likely find that you need to step back and re-evaluate your life. Yet as Tricia’s story so powerfully points out, even though things may change, you can still live a full and meaningful life.

Let’s take a look at some of the areas you will want to address as you create your new normal and learn how to manage your life with breast cancer.

Organize your medical affairs

•     Create a calendar, whether written or electronic, to schedule both medical appointments and daily affairs.

•     Set a reminder on your phone or watch for taking medications

•     Set-up pharmacy auto-refills to keep prescriptions filled

•     Sort your meds into a daily pill dispenser at the start of each week

As you probably know, keeping track of tests and appointments, medications, medical records and payments can feel like a full time job. That’s why it is important to create a system that works for you. We have mentioned before that it is a good idea to keep all of your medical records together in a folder or binder. 

Some other things to consider include:

Dealing with medical bills can be another source of stress. Unfortunately, it often falls on the patient to make sure insurance claims are handled properly, so make sure you understand your coverage and review your bills carefully. When you are in the throes of treatment, this may seem overwhelming, so ask a family member or someone you trust to help with this if you need it.

And if medical costs seem to be more than you can afford, please seek assistance. No one should ever have to forgo treatment because they cannot afford it. There are resources available to make sure you get the care that you need.

Nurture your relationships

It is normal to for your relationships to be affected while dealing with the physical and emotional strain of metastatic breast cancer, but try to not let yourself push others away. Draw your loved ones near, share your feelings, and use them as your support.

If you have children, this can feel extra challenging. As a parent, your instinct is to protect them from pain and shield them from hard times, but know that they are not immune to what is going on around them. Make sure your children know that they can express their feelings. Do your best to keep them aware of what to expect and what might change.

Fuel your body and mind

What you put into your body is more important now than ever. Help strengthen your body during and after treatment by fueling it with a healthy diet. You can click here to find more information about providing your body with the nutrition it needs.

Your mental health is just as important. From yoga, to meditation, to church or support groups, find what keeps you mentally balanced and make it a priority.

Evaluate your career

You may need to make some decisions regarding what you want to do or are capable of doing job-wise. Does your career bring you a lot of joy, or does it cause unnecessary stress? Are you able to work from home or take off on treatment days? This answer will be different for every woman, but the important lesson here is to find the proper balance. It might be time to make a change, and that is OK. Or perhaps you might find that you are already right where you want to be.

Look at the big picture

What is most important to you in your life? What is on your bucket list? What do you still want to accomplish?  You don’t have to do it all tomorrow, but start taking active steps towards it. Make the most of every day by filling it with moments to cherish.  Let go of the things that are bringing you down. Celebrate your life and the lives you have touched.

No one ever said living with Metastatic Breast Cancer is easy, but there are certainly things you can do along the way to lighten your load. Continue to refer to the Tigerlily Foundation for support and education along the way. We are committed to being here for you.

Bald Ballerina

At the beginning of 2014, I was living my dream. I was dancing with NYC’s Joffrey Concert Group, a student company that I hoped would pave the way to a professional ballet career.  But by summer, everything had changed. I learned that the lump I found in my left breast was caused by breast cancer and the cancer had already metastasized to my sternum, pelvis, and spine.

When my doctor told me I had breast cancer, I thought that maybe I hadn’t heard him clearly.  My whole world turned upside-down; I wondered if I would ever dance again.  I didn’t know how to respond; I just started crying uncontrollably.   

Could this really be happening to me?  At 23, I was much too young; I was thin and fit; I followed a healthy lifestyle; I had no family history; I had never used any hormonal medications. Subsequent genetic testing for a panel of 25 genes was negative. Other than being female, I had none of the risk factors.  This couldn’t be happening.  I would wake up from this nightmare and my left breast would be normal.

Two weeks later, I would learn that my breast cancer had already metastasized to my sternum, pelvis, and spine.  At the time, I knew very little about breast cancer or bone metastases. My first thoughts were whether my bones would remain strong enough to continue dancing and would I be able to get my dance career back on track.

I learned my type of breast cancer (Her2-Neu 3+, ER/PR+) was very aggressive, so I needed to act quickly.  My oncologist gave a sigh of relief when I declined harvesting my eggs.  Not only would this delay treatment, but the hormones needed to harvest the eggs would make the cancer grow faster.  Chemotherapy began a week after our first meeting.

I had no idea how my body would respond to treatments: Would I have any of the awful side-effects described in the informational brochures? Would the drugs destroy the cancer and my body in the process? How many years did I have left to live? Would those years be filled with pain? 

The severity of what was happening didn’t hit me until I started treatment.  I put my dance career on hold and moved back home to Maryland to begin treatment.  On July 1^st, I got the first of six chemo treatments (Taxotere, Carboplatin, Herceptin, Perjeta, Xgeva).  During this time, I’d try to make it to ballet class two or three times a week.  I’d barely make it through barre before needing to stop from exhaustion, but dancing helped keep me positive, and my doctors encouraged me to stay as active as possible. 

In November, I learned the chemotherapy was working: a PET-CT scan showed no cancer in my breasts or lymph nodes, and only a tiny bit left in my bones. The next step was surgery.  I had a double mastectomy the day after Christmas. I was thrilled to learn that no cancer was found in any of the breast tissue: a pathological complete response.

My recovery was quick, and I declined reconstruction.  A week later, I returned to the studio and discovered I now had trouble with balancing and turning.  Removing my breasts had changed my center of gravity!  Fortunately, it didn’t take long to make the adjustment.

For many women, this would mark the end of infusions.  But because I was metastatic, there was no end date for treatment; my infusions of Herception and Perjeta would continue for the rest of my life or until they stopped working.  Every three weeks, I went to the hospital for infusions that lasted three hours.  Every four weeks I got an Xgeva injection to repair the bone damage caused by the cancer.  Many times I wanted to end all the doctor appointments, treatments and medicines.  But then I would realize that these treatments made the cancer retreat from my breast and my bones.  I no longer had pain in my sternum caused by the cancer. I could now dance pain free. These tedious treatments were not only keeping me alive, they were making it possible for me to dance!

 Bald Ballerina was Born

I launched the Bald Ballerina Facebook page on June 24, 2014, a few days after being diagnosed.  I wanted to share my cancer journey with family and friends and also to make young women aware that metastatic breast cancer is not just a disease of middle-aged and older women; that it can also strike physically fit young women who follow a healthy lifestyle. My first message was “No one is too young; no one is too fit; no one is immune.”  Soon friends began asking to share my page, and the Bald Ballerina social media movement took off.  I now have close to 7,000 followers on Facebook and Instagram.

It took a while to change my state of mind about my career. I was eager to join a company and start dancing nine to five again, but realistically, my need for treatments would interfere with company rehearsals and touring.  Once I came to terms with my new life and my “new normal”, I modified my career goals. My goals now are to raise awareness of metastatic breast cancer and to freelance dance and choreograph. I spend more time on teaching and speaking engagements. 


Eventually, I want to grow Bald Ballerina into a foundation that provides grants for living and medical expenses for dancers with cancer.  It is hard to heal when you’re worried about paying bills.

"I have learned to accept the things I cannot change.  

This does not mean giving up; 

it means that you may need to find another path to your goal

or you may need modify your goal. "
-Bald Ballerina

Visit the Bald Ballerina website to see more of  Maggie's Dance with Metastatic Breast Cancer