Taking the Scenic Route at Komen's Global Race 2014...

Melissa Paskvan

Taking it all in as a blogger VIP special guest at Komen's 25th Anniversary of the Global Race in Washington DC on May 10, 2014.  With over 15,000 race participants on the National Mall, you can really feel the enthusiasm of "IMPACT" among the enormous crowd during activities leading up to the race.

"...and now here we are today, the world's largest breast cancer organization fighting on all fronts." In community health, public policy, globally and of course research." - Nancy Brinker  "...and as a member of the medical community that really stood out for me when I joined Komen our commitment to supporting the best science and the most dedicated brilliant researchers, we funded more breast cancer research than any other non-profit. We are looking for ways to prevent breast cancer and cure breast cancer and while we help many women who are facing disease right here and now today and we won't stop till we reach our goal!" -Dr. Judy Salerno

RACE FOR IMPACT, RACE FOR BREAKTHROUGHS, RACE FOR THE CURE!

World Wrestling Champion, John Cena

Nancy Brinker and Judy Salerno
reaffirms Komen's mission

Melissa and TNBC Sister and Komen Advocate,
Peggy Johnson

Melissa and TNBC Sister and Komen Advocate,
Peggy Johnson

Melissa Paskvan

Melissa Paskvan

Yes, I did!

Us bloggers!

For impact!

TV Personality, Rene Syler and Melissa

I Will Live Life Sincerely...

http://thelivesincerelyproject.com

 

The Live Sincerely Pledge

I will live sincerely.
I will learn from each person and each day on my journey
and will share ideas and wisdom from my own experiences.
With a grateful spirit, I will acknowledge my need for others
and will in turn be loving and generous,
remembering that every member of a community plays a unique role.
I will remain strong in my convictions
while keeping an open mind to perspectives beyond myself.
Courageously, I will respect each movement of my heart,
through fear and joy, grief and peace.
I will cultivate my passions with delight
and also take time for honest introspection.
I will love the person I am today
while constantly striving towards my best self.
I will keep a healthy balance between the rewards of discipline
and the growth and wonder that spontaneity brings.
I will acknowledge both the marvel and the limitations of my body
and respectfully take care of it the best I can.
Accepting the reality that there are circumstances I cannot change,
I will seize my power to actively change that which I can control
with hope and creativity.
I commit to living each chapter of my story:
honoring the lessons and gifts of my past,
fully participating in the fleeting beauty of the present,
and bravely walking towards the unknowns of my future.
Knowing that life is an enduring but glorious struggle,
I pledge to live each day with purpose.

I will live sincerely. 

- The Live Sincerely Project, Vanessa Blust Tiemeier                           

In memory of my dear friend, Vanessa Blust Tiemeier who lost her battle to breast cancer on February 23, 2014 at age 32

 

Inside Look at Komen's Blogger Summit 2014...

Nancy Brinker and me

A day with some awsome bloggers Amanda Hudson, Barbara Jacoby, Nicole Mclean, Renée Ross, Rene Syler, Samantha Schuerman, Janice Lynch Schuster and Debbie Wodbury. I received an earful of inspiring details of how Komen impacted the breast cancer awareness movement and their continued quest to end breast cancer forever. Komen's digital marketing manager, Tracy Muller and others from her mission team did an incredible job in hosting all of us and was so much fun being their guests at the blogger summit. We had a very nice dinner reception with Komen CEO and President, Dr. Salerno who addressed their mission to us. When I first got the invitation, I was thinking to myself, that I would really love to meet Nancy Brinker, Founder of Susan G. Komen... Well, at the dinner, casually in walks Nancy Brinker and her son Eric Brinker whom I had conversed with on the Komen Facebook's page. Of course, I was thrilled since Nancy Brinker had always been my "personal hero" for making that promise to her dying sister to do everything in her power to find a cure for breast cancer. I admire Nancy for standing behind her promise through the success of Komen in community outreach programs and funding research breakthroughs on breast cancer. It really was an awesome experience and am grateful for this opportunity.

Komen's Ceo, Dr. Judy Salerno spoke of her hopes and concerns in moving forward in where Komen can really make a difference. Komen wants to be there for all people and help them through their journey and had put about half a billion dollars into community health, screening and patient navigation.
Salerno's main goal is to support the best research, Komen really want's to eliminate breast cancer so there is not another generation that will need those services. Salerno's goal is to attempt to build relationships with the other 1400 plus breast cancer organizations out there and to work together to help the people with disease, help people get early diagnosis treatments and support the research that will put an end to breast cancer... "I truly believe that we are stronger together than we are alone."
Also, Solerno hopes that together with the other organizations, to understand health disparities with the greater chance of dying from disease among women of color. Komen states that we need to take responsibility for these disparities issues, further saying, it's unacceptable anywhere and we have to address it.

As the federal government research funding becomes tighter, the future for breast cancer researchers is narrowing.  This is an area that Salerno feels strongly about and hope that Komen can make a difference in protecting the next generation of researchers as the funding environment become tougher.

"Experiencing the Komen Mission."

"Photo-bombing bloggers!

Nuvea Vida provides cancer support services
to Latina families 

Komen Scholars, Dr. Neil Spector,
Dr. Priscilla Brastianos and Peggy Johnson

Dr. Brastianos focus her research on metastasis
to the brain and finding new therapeutic
targets to treat it. "Up to 30 to 40% of
advanced breast cancer metastasize
to the brain especially among Her2 and
TNBC patients.

DC Pink Divas and survivor, Dr. Michelle Craig
Educating and Empowering Women who are
at-risk and of low-income.
Conversation on breast health doesn't
start an average until age 40... "Fear of it."
"Think breast cancer is a death sentence."

Me speaking to Komen CEO and President, Dr. Judith
Salerno about Komen funding Triple Negative Breast
Cancer Research and thanking her for their support.

Us bloggers with Komen CEO and President,
Dr. Judith Salerno at Bistro Bis at the George

Komen CEO and President, Dr. Judith Salerno and me

Us bloggers with Susan G. Komen Founder,
Nancy Brinker and her son Eric Brinker

Susan G. Komen Founder, Nancy Brinker,
me and Eric Brinker

"My view from the front of my hotel, the
Hyatt Regency on Capitol Hill."

Remembering Triple Negative Breast Cancer Sister, Tanya Tigra Russell...

Tanya Tigra Russell, age 42
Diagnosed August 2011
Recurrence May 2013
Departed May 23, 2014

Tanya Russell was part of our online TNBC support group, and we met briefly while attending the Young Survival Coalition (C4YW) Conference 2014 in Orlando this past February. We talked for a few minutes at the hotel's pool, it was a short visit but was happy to meet her. Sadly, Tanya passed on May 23, 2014.  Rest peacefully sweet sister, we'll continue the fight from here. 
Diagnosed August 2011 - TNBC, Stage 2b. BRCA negative. Chemo AC+T 
Recurrence May 2013 - Stage 4 with mets to bone marrow.  
September 2013 - Metastatic disease- Progression while on Abraxane and Xeloda, mets to liver. Starting Eribulin. December 2013 - On Elirubin and it worked, the tumors are gone from the liver. I know that at least a couple of months before passing, the cancer has spread to her brain.

Remembering Triple Negative Breast Cancer Sister, Kathleen Good...

Kathleen L. Good, age 53
Diagnosed January 2012
Recurrence April 2013
Departed May 21, 2014

Rest Peacefully Kathleen Good

Diagnosed January 2012, Stage 2b, Lumpectomy, chemo, rads
April 2013- Recurrence with a 1cm. mets to liver and a derma-metastasis across the chest.  About 1 month after celebrating 1yr "cancer free", started getting little skin bumps (skin mets) across chest and a tumor had returned to the same breast had surgery on. Ct scan then also showed a liver met.
June 2013- Liver met has shrunk 90% after just 6wks on Xeloda, Methotrexate and Vinovelbine 
Dec 2013- The clinical trial I was on (for a PARP inhibitor) did nothing for me. The cancer has grown in my liver and now there are 3 spots. It has also grown in my spine and spread to my hip.  
Had no genetic mutations at all, but the cancer mutated giving me BRCA 1 and 2, pi3k and some others.  When they sampled the biopsy of my recurrence, that was when the mutations were discovered. When first diagnosed and tested- I had no genetic mutations.
Kathleen was a part of our TNBC Sisters group and has always been very supportive of all of us.
Link to Kathleen's Good's Obituary: http://www.curnowfuneralhome.com/fh/obituaries/obituary.cfm?o_id=2535984&fh_id=10210

Anti-androgen therapy for triple-negative breast cancer may benefit lower-androgen tumors -- ScienceDaily

"Results showed that not only does anti-androgen receptor therapy reduce the ability of androgen-receptor-expressing triple-negative breast cancers to proliferate, migrate and invade, but for these cells, androgen receptor seems essential to survival. When Barton and colleagues blocked androgen receptor in these cells, the cells died."



Read full story: Anti-androgen therapy for triple-negative breast cancer may benefit lower-androgen tumors -- ScienceDaily

Love my breast cancer support group...

Victory Center ladies - I'm on the left end and Judi is wearing all black in the middle

 Fighting her recurrence with breast cancer, Judi stopped in for a surprise visit! It was so good to see her, and we all missed her in group while she's undergoing treatments.

April 2014 Ask the Expert: Medical Updates, Treatment Options and Follow-Up Care for Triple-Negative Breast Cancer

Dr Rita Nanda

From Living Beyond Breast Cancer at LBBC.ORG
 
"Rita Nanda, MD, is an assistant professor of medicine and associate director of the Breast Medical Oncology Program at the University of Chicago School of Medicine. She specializes in treating triple-negative, early-onset, hereditary and locally-advanced breast cancers. Her research interests include identifying novel therapies that will improve outcomes for people with breast cancer."

Question: Are there any clinical trials available for people with early-stage triple-negative breast cancer (TNBC) undergoing chemotherapy? 
Dr. Nanda: Over the past decade, the use of chemotherapy prior to surgery—neoadjuvant chemotherapy, NACT—has been increasing. Until relatively recently, NACT was primarily used for patients with large tumors that were not able to be removed through surgery at the time of diagnosis or patients with inflammatory breast cancer. However, clinical researchers are increasingly using NACT as a way to bring promising new medicines to patients faster. By using the response to a NACT regimen as a surrogate endpoint for improved patient outcomes, effective treatments can be identified more quickly.  
The vast majority of treatments under study in clinical trials for people with early-stage, triple-negative breast cancer are administered in the neoadjuvant setting. Most of these trials are investigating whether a trial medicine plus the standard chemotherapy treatment can improve rates of complete pathological response, meaning no tumor remains after NACT, over the standard of care treatment alone.
 
Question: Are there any targeted therapies ready to be approved for triple-negative breast cancers? 
Dr. Nanda: Currently, there are no targeted therapies FDA approved for TNBC. A wide variety of targeted treatments for TNBC are currently being studied, primarily in the neoadjuvant—prior to surgery—and advanced/metastatic cancer settings.  
At the San Antonio Breast Cancer Symposium held in December of 2013, a presentation was given on a phase II trial evaluating the addition of the PARP inhibitor veliparib (ABT-888) and the chemotherapy drug carboplatin to standard chemotherapy—with paclitaxel, doxorubicin, and cyclophosphamide. Pathological response rates improved when veliparib and carboplatin were added to standard chemotherapy.  
A phase III study testing this combination versus the standard of care in the NACT setting is currently being planned and will soon be underway.  A number of other targeted therapies are currently being studied in the advanced cancer setting, including immune therapies and medicines that target pathways believed to lead to chemotherapy resistance.

Question: How are people with triple-negative disease monitored during and after treatment? 
Dr. Nanda: Patients with TNBC receive the same follow-up as patients with other forms of breast cancer. After treatment is completed, patients should follow up with their physicians for physical examinations every 3 – 6 months for the first 3 years, every 6 – 12 months for years 4 – 5, and annually thereafter.  
For women who have undergone breast-conserving surgery, also called lumpectomy, a post-treatment mammogram should be obtained 1 year after the initial mammogram and at least 6 months after completion of radiation therapy. Unless otherwise indicated, a yearly mammographic evaluation should be performed.  
The use of complete blood counts, chemistry panels, bone scans, chest x-rays, CT scans, PET scans, MRIs, and/or tumor markers (CA 15-3 and CA 27.29) is not recommended for routine follow-up in a patient with no symptoms of cancer and no specific findings on clinical examination.

Question: Should people with triple-negative breast cancer be scanned for distant recurrence prior to treatment, even if they have early-stage disease and negative nodes? 
Dr. Nanda: Performing an evaluation looking for distant spread of cancer should be reserved for patients who have significant lymph node involvement. For patients who have large tumors with greater than 3 positive lymph nodes, it is reasonable to perform a CT scan of the chest and abdomen, a bone scan, and/or a PET scan looking for distant metastases. For a metastatic tumor to be reliably picked up on a CT scan or a PET scan, it generally has to be about 1 cm in size.  
For patients with lymph node-negative, early-stage breast cancer, it is highly unlikely that a CT scan, bone scan, or PET scan would show evidence of metastatic disease. Therefore, these scans are not appropriate in this setting. It is also possible that these tests could detect benign (non-cancerous) abnormalities (benign nodules, non-specific findings, etc.) unrelated to the cancer, which could lead to additional testing, unnecessary biopsies and anxiety for patients. 

Question: I know medicines like tamoxifen exist for women who do not have triple-negative breast cancer and that these kinds of drugs help women avoid a recurrence of breast cancer.  Are there similar medicines for women diagnosed with triple-negative breast cancer? 
Dr. Nanda: Because triple-negative breast cancer lacks expression of the estrogen receptor, the progesterone receptor, and the HER2 receptor, there are currently no targeted therapies approved to help prevent recurrence. The main therapies used to prevent recurrent disease are surgery, chemotherapy, and radiation therapy.

Question: What can women who have been diagnosed with and recovered from triple-negative breast cancer do to help prevent a recurrence?
Dr. Nanda: Studies have shown that exercise (for 30 mins a day for 5 days a week), eating a healthy diet (low fat, high fiber), minimizing alcohol consumption (to under 3 alcoholic beverages a week), and maintaining a healthy body weight all help to reduce the risk of breast cancer recurrence.

Question: What are the odds of triple-negative breast cancer traveling to the colon?
Dr. Nanda: If triple-negative breast cancer spreads outside of the breast and axilla to other parts of the body, the most common places it spreads to are the lungs, the liver, the bones, and the brain.  While not impossible, the colon would be a very unusual location of spread.

Question: How do you know when radiation therapy is absolutely necessary? I started with a 3 cm breast tumor, which chemo shrunk to 1.5mm, and no cancer found in nodes post chemo as well. My surgeon stated I went from a stage 3 to stage 1, but would not give me any advice on radiation. Am I in the grey zone?
Dr. Nanda: In general, radiation is used when patients opt for breast conservation therapy (a lumpectomy or partial mastectomy as opposed to a mastectomy).  Radiation is also typically recommended for patients who have lymph nodes that are positive for breast cancer or have tumors that are larger than 5 cm, even if they undergo a mastectomy (because the high risk of local recurrence when radiation therapy is not administered is high in these situations).  In your case, if you opted for a mastectomy, you do not likely need radiation therapy.  However, I would suggest you consult with a radiation oncologist for a thorough review of your case and a discussion of your treatment options. 

Question: Where and when is recurrence most likely to occur in triple-negative breast cancer?
Dr. Nanda: The most common sites of recurrence of triple-negative breast cancer include the lungs, the liver, and the brain. Triple-negative breast cancer can also metastasize to the bones, but the incidence is lower for triple-negative breast cancer as compared to other forms of breast cancer.

Question: I am a 6-year survivor of BRCA1-related, triple-negative breast cancer. When will the fear go away? It has improved a lot but is not gone.
Dr. Nanda: It is very natural for a survivor to be concerned about recurrence. The peak incidence of recurrence for TNBC occurs approximately 3 years after diagnosis and decreases from that point. While there is no guarantee that your cancer could not return, given that you are 6 years out from diagnosis, the risk is quite low. If you feel that your fear is negatively impacting your quality of life, I would encourage you to consider counseling to help manage your fears. There are many healthcare professionals who specialize in cancer survivorship concerns and seeking help if you feel that your fear is taking over your life may very helpful.

Question: Why is follow-up care so different from woman to woman? I am in a support group and every triple-negative participant has a different follow-up care regimen, even though we all were stage 2 or 3 at diagnosis. We are scared our doctors may be missing recurrences. 
Dr. Nanda: The American Society of Clinical Oncology (ASCO) has guidelines for follow-up care of breast cancer patients. After treatment is completed, patients should follow up with their physicians for physical examinations every 3 – 6 months for the first 3 years, every 6 –12 months for years 4 – 5, and annually thereafter.
For women who have undergone breast-conserving surgery, a post-treatment mammogram should be obtained 1 year after the initial mammogram and at least 6 months after completion of radiation therapy. Unless otherwise indicated, a yearly mammographic evaluation should be performed.
The use of complete blood counts, chemistry panels, bone scans, chest x-rays, CT scans, PET scans, MRIs, and/or tumor markers (CA 15-3 and CA 27.29) is not recommended for routine follow-up in a patient with no symptoms and no specific findings on clinical examination. Some medical oncologists perform follow-up scans and tumor markers after the completion of treatment to monitor for a recurrence.
Intense surveillance, however, has not been shown to improve outcomes for women with breast cancer, and I personally follow the ASCO guidelines. In fact, in many cases, intense surveillance can be quite detrimental as it can increase anxiety and lead to additional and oftentimes invasive and unnecessary testing.

Question: I read in the fall 2013 Cure Magazine article “Divide and Conquer” (pg.34) that treatment options are limited and average survival drops to 1 year for patients with metastatic TNBC. This was very disturbing to me and I don't know what this means for sure. Can you elaborate? I am 20 months clear from stage 2 ILC and was treated with 6 rounds of TAC and radiation therapy after lumpectomy. 
Dr. Nanda: The current standard of care for patients with TNBC is chemotherapy. Based on your question, it appears that you had early stage breast cancer that was treated aggressively and appropriately with a combination of chemotherapy, surgery and radiation therapy. The goal of your treatment was to cure you of the cancer.
For patients with advanced TNBC, treatment is primarily palliative, with the goals of helping women live longer and better. However, there are countless clinical trials seeking to identify new targeted therapies for patients with TNBC, and every reason to be hopeful that we will be able to identify promising new therapies in the future. I encourage women with advanced TNBC to consider participating in clinical trials if possible to increase their treatment options.

Question: I am several years post-treatment for triple-negative breast cancer. I experience significant fatigue on a regular basis, which affects my quality of life. Is this a common problem and do you have any thoughts regarding how to deal with this issue? 
Dr. Nanda: It is unlikely that the fatigue you are feeling now is related to your treatment from several years ago, although every patient is different, and it can certainly take some time to recover from the side effects of breast cancer treatment. I would encourage you to see your medical oncologist or primary care physician to discuss your concerns. There are a variety of medical causes which can lead to fatigue, including hypothyroidism (underactive thyroid gland), anemia, poor sleep, medication side effects, and mood disorders. Your physician should be able to help identify factors contributing to your fatigue, work with you to address them and get you feeling better.


April 2014 Ask the Expert: Medical Updates, Treatment Options and Follow-Up Care for Triple-Negative Breast Cancer

Fun with Familiar Faces at C4YW Orlando Conference 2014...

I still cannot stop thinking about the fabulous time I had at  the Conference for Young Women (C4YW) 2014 in Orlando, Florida this past February. It was was a weekend full of education and fun where several hundred breast cancer survivors came together to learn from medical expert speakers, workshops, group discussions, exhibitors and from other survivor who have walked your journey and who "get it."
I was so excited to meet up with some of my pink sisters that I met at last year's conference in Seattle and also met a few new faces from our TNBC group. I had fun rooming with TNBC sister, Angie Munoz whom I met in our online support group and face to face at C4YW Seattle 2013 Conference. In our down time, Angie and I went to Disney World, Disney Hollywood and then to Animal Kingdom with pink sisters Tammie Tupen And Tracy Gordon. I attended 3 of several session; Emerging Research in Metastatic Breast Cancer with Dr. Kathryn Ruddy; Advocacy and You; and a Discussion group on Talking Triple-Negative breast Cancer. A bunch of us pink sisters went out for dinner and dancing at Congo's at Disney downtown and on another night we all went to a Japanese grill before ending the night with the conference's Saturday night's dance that is always fun with more dancing. We spent our evenings hanging out at the pool and hot tub talking about life till early morning hours.
Next year's conference will be held in Houston, Texas and am so thrilled about meeting up with these ladies again and learn more of the latest breast cancer medical breakthroughs. 

TNBC sister Sara, Juls, Melissa and Shanese

Melissa and TNBC sister, Lisa Southerland O'Connor

Melissa and TNBC sister, Angie Munoz

Melissa and pink sister, Sheryl DeHaven "Beyond Boobs!"

Melissa and TNBC Sister Raymon Bessix "Beyond Boobs!"

TNBC sister, Sara Kouten

"Triple Step Towards the Cure", Lori Flowers and Melissa

Melissa and TNBC Sister and Author, Ann Pietrangelo

TNBC Sister, Roxanne Martinez and Melissa

TNBC Sisters, Amy, Jeanna, Sara, Lisa and Melissa

Melissa and TNBC Sister, Ishiuan Hargrove

TNBC Sisters Melissa, Rebecca Edwards Newman
 and Angela

Dancing with my pink ladies at Congo's

TNBC, "I Won't Back Down!"

Melissa and Dr. Kathryn Ruddy, MD, Oncology

TNBC Sister, Elizabeth Luttrell and Melissa

TNBC Sister, Shelly Finfrock Gardner and Melissa

TNBC Sister, Tanya and Melissa

Annie of the "Annie Appleseed Project" and Melissa

TNBC Sister, Gin Marks "Beyond Boobs!" and Melissa

" I fight for all of my TNBC Sisters!"

Melissa, Stacie, Angie, Dusty, Angela, Jeanna, 
Tammie and Shanese

Melissa, Angela Angie, Dusty Showers "2nd Baseman",
 Stacie and Sara

Pink Sister, Tammie Turpen and Melissa

Dusty, Angela, Jeanna, Shanese, Tammie, Juls, Melissa, 
Angie, Sara, Stacie and Lisa

http://triplesteptowardthecure.org 
http://www.youngsurvival.org 
http://the2ndbasemen.org

TNBC Sisters!

 TNBC Sisters

"Beyond Boobs!" Good Health Fairy and Melissa

"Triple Step Towards the Cure", Carole and Melissa

Young Survival Coalition CEO, Jen Merschdorf and Melissa

Melissa and TNBC sister, Traci Gordon

Notes from Emerging Treatments in Metastatic Breast Cancer:

Metastatic Breast Cancer is cancer that spreads outside of the breast and underarm auxiliary nodes.
Keep cancer under control as long as possible... minimize size effects. 

Treatments: 

• Platinum 
• ER Inhibitors
• Parp - Repair DNA for TNBC patients who are also BRCA positive. 

In TNBC, recurrence is early.


Notes from Talking Triple-Negative Breast Cancer Discussion:

3% of tissue is left after mastectomy so look for skin changes after mastectomy such as pimples or nodules changes.

There is no tumor marker that detects cancer. Check for blood changes... make sure everything is leveled. If you're suddenly anemic, would want to do testing to see why there is a change.

Watch for new aches and pains, head aches, pains that aches at night and symptoms that don't go away after a few days.


Discussion with the Medical Experts: 

Flaxseed is being studied for possible Estrogen Blockage.

10 year Tamoxifen is more effective than 5 years.

IBC- Research in understanding the biology of Inflammatory Breast Cancer...
What kind of IBC?

Push more MRI than 3D Mammogram

TNBC- Platinum drugs are more effective

BRCA Testing- Free the data

New proteins making in more complicated in understanding disease.

Not ready to quit fighting when 5-10% are metastatic at original diagnosis

Exercise- Evidence in prevention and ease cancer symptoms such as fatigue.

No data in diet.