Monday, April 4, 2016
Monday, March 28, 2016
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: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.
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.
Monday, March 21, 2016
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 15th 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.
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!"
Monday, March 14, 2016
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
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.
Monday, March 7, 2016
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 1st, 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!
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.
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
-Bald Ballerina
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