Join MBCN in Taking Part in ITSABOUTTIMEMBC

Metastatic breast cancer – cancer that travels from the breast and spreads to other parts of the body – is treatable, but not curable. Though exact statistics are unknown, an estimated 155,000 people are living with the disease in the United States.

Those with metastatic breast cancer face challenges different from those with early stage because metastatic breast cancer patients are always in treatment. They experience ongoing anxiety and fear knowing they will die one day from the disease.

 

Learn more at http://www.itsabouttimembc.com/home/

For metastatic breast cancer patients it’s about time. Time to spend with their families, time to cross something off their bucket list, time to simply drive the carpool or cook a meal.

It’s also about time we increased awareness of the disease, time we developed more treatments to help metastatic patients live longer, time there was more recognition and support of those managing this disease.

As we approach Breast Cancer Awareness month,the Metastatic Breast Cancer Network (MBCN) is proud to be taking part in the It’s About Time campaign to raise awareness of metastatic breast cancer. What does time mean to you and your family? What would you do with more time? We invite you to visit the campaign website at www.itsabouttimeMBC.com and share your stories – or spread the word on social media using the hashtag #itsabouttimeMBC.

More than 30 organizations and 100 bloggers will be sharing their stories. Please join us! You can share your story AND take part in a special Facebook event on Oct. 13; National Metastatic Breast Cancer Awareness Day. Beginning at 8:13 a.m. Central time, and continuing at 13 minutes past the hour, for 13 hours, It’s About Time will be hosting a conversation at https://www.facebook.com/ItsAboutTimeMBC/. Every hour matters, we hope you will join us.

Blogger and MBCN board member Katherine O’Brien has shared her story here: 

Stage IV Breast Cancer Resources for Spanish Speakers

 

The Metastatic Breast Cancer Network (MBCN) offers brochures in English and Spanish for people living with  Stage IV breast cancer. Special thanks to our friend Sandra Bishnoi and the Center for Language and Intercultural Communications and the students in SPAN322–Medical Professions, Rice University, Fall 2015, for preparing the Spanish versions.

You can download a copy of  Diagnostico: Cancer de mama metatasico .

….and here is the English version: Diagnosis: Metastatic Breast Cancer

MBCN also offers Conozca Los Datos as well as the English version: Get the Facts

 If you’d like hard copies of the above brochures, drop us a line.

Learn more about SHARE’s helpline, support groups and education programs for Latinas. 

You’ll find Komen en Espanol here. 

This handout offers an overview of MBC in Spanish..  And here are questions you can ask your doctor about MBC.

BreastCancer.org has articles and discussion forums for Spanish speakers.

 Here is a list of nationwide MBC  support groups–the majority of which are in English. But there are are some Spanish speaking Stage IV groups–here is a fairly new one:

CALIFORNIA: Mission Viejo
“Nuestro Camino Juntas”
3rd Tuesday of each month
11:30-1:00
Mission Women’s Wellness Center
26732 Crown Valley Parkway, Ste 171A
Mission Viejo, CA 92691
Contact: 949-481-4145 – Marilyn Viera, LCSW, Support Group Facilitator

Are there additional Stage IV materials/resources in Spanish we should know about? Let us know–we are happy to add them.

Ginny Knackmuhs: An Uncompromising Advocate

Ginny Knackmuhs at an early Metastatic Breast Cancer Alliance Meeting

It it is never easy to share the news of another life lost to metastatic breast cancer. But it is particularly hard to let you know that our dear friend and MBCN board member Ginny Knackmuhs has died. Our sincere condolences to Ginny’s family, friends and fellow advocates.

Ginny’s accomplishments on behalf of MBCN and her fellow patients are far-ranging and enduring. She was the anchor of our website–a trusted resource for people around the world. Ginny was MBCN’s treasurer and webmaster but her reach far exceeded those official duties.

Ginny’s husband, Gary, used to refer to  us  as “your people.” If someone from MBCN or another advocacy group called the Knackmuhs’ home and he answered he would hand the phone to Ginny and say, “It’s your people.” He said all of these groups collectively reminded him of “The Five Families” as depicted in “The Godfather.” Although this wasn’t an entirely accurate assessment, in some ways Ginny was our Tom Hagen, the capo who got things done. She was a great natural leader and a woman of decisive action.

As Texans say, some people are all hat and no cattle. Not Ginny– because her treatment center didn’t have an in-person support group, Ginny helped establish one. When a national breast cancer organization overlooked people living with Stage IV breast cancer, Ginny presented the facts and asked them to re-evaluate their stance. (They did.) When the Metastatic Breast Cancer Alliance was coming together, Ginny was front and center and helped jump-start its creation.

A few years ago, an academic cancer center asked us to co-host a webinar on key issues in metastatic breast cancer. The proposed webinar was to take place in November–both Ginny and I felt that attendance would suffer because in the wake of Breast Cancer Awareness month, many people want to take a break from cancer talk. We asked our contact at the cancer center to shift the event to September or October but she said  their schedule was inflexible. Ginny was not to be denied. She politely–but firmly–said we could do it in October. And we did! I would have caved  and resigned myself to the November slot, but Ginny was made of stronger stuff.

“Ginny was the heart and soul of MBCN’s online presence,” says Shirley Mertz, MBCN’s President.  “Many visitors to MBCN.org  have expressed their gratitude to find patient-centric information.” “This is the most informative site I have been to yet,” wrote Jean M.  “Thank you for giving me a place to go, a place to get information that pertains to me.  I was moved by the many testimonials/videos.  So positive.  I found the technical section on drugs and treatments very informative – thank you for that. Also found it easy to navigate your site. It’s a great website and lots of resources, which I will be using.”

Doctors also commented on the wealth of information on the website, according to Shirley.  “This is all to Ginny’s credit,” says Shirley.  Ginny worked extremely hard on MBCN’s redesigned website which will debut shortly. It is a wonderful legacy.

MBCN has popularized the phrase “Scan, Treat, Repeat: Stage IV Needs More.” Ginny and I were talking about a motto that could be used to along with MBCN’s new logo and that is what we came up with. Ginny created the first iteration–complete with the now familiar circle and three arrows. I have seen doctors use the Scan Treat Repeat logo in their metastatic breast cancer presentations and patients quickly embraced it, too. Anyone would be proud to contribute a phrase to general usage, but Ginny has the distinction of contributing  the saying as well as boosting people’s understanding of the disease. MBC advocates often talk about “changing the breast cancer conversation.” Ginny has well and truly has done that.

Board member Deb Tincher and Conference Chair recalls, “If you attended an MBCN conference in recent years, you probably knew Ginny. As treasurer, she sent out scholarship reimbursement checks. It was an arduous and time-consuming task that required collecting surveys, expense forms and receipts from the attendees. Ginny knew many attendees are on tight budgets–she cut the reimbursement checks as quickly as possible. She was always thinking of others.”

Ginny, by her own example, pushed many of us to expect more and to do more. A couple of years ago, there was a special event in Time Square to call attention to October 13th, National Metastatic Breast Cancer Awareness Day. Ginny and I joined some other Stage IV patients and advocates on GMA’s outdoor plaza. (Ginny, true to her 1960s roots, took the precaution of taking only her ID and a small amount of cash with her. “In case we get arrested,” she explained as we walked over from our nearby hotel.)

Ginny with SHARE’s Christine Benjamin and me on Time Square

I thought that if we were lucky, we might get our signs on television. Ginny actually got the weather person to acknowledge the MBC delegation as well as the Awareness Day designation on national television. “Next year I want to go INSIDE the studio and be interviewed,” Ginny told me.

Ginny had lobular metastatic breast cancer (most breast cancer is ductal) and  she also had the triple negative subtype which notoriously aggressive. She did not write extensively about the specifics of her case, but MBCN would like to share some information we think she would want everyone to know.

“I was diagnosed in 1992 with early stage cancer–Stage 0 or DCIS–the earliest you can have,” Ginny wrote in this blog post. ” I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I continued on with my life, without worrying too much about breast cancer. . . I continued for 17 years with annual mammograms, 17 years of breast self exams, 17 years of annual checkups and then I was diagnosed with advanced breast cancer with metastases to the bone–stage IV–treatable but no longer curable. I was no longer the poster girl for early detection, because this time early detection had failed me. Like many in our pink-drenched communities, I had accepted the message that early detection was the cure and that mammograms were a fail-proof screening test.”

Ginny went on to say that her breast cancer education began the day she received her Stage IV diagnosis. “I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives (identifying suspicious areas which turn out to be cysts or other normal anomalies); and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone. The message promoted by many breast cancer organizations is one of positivity, survivorship and fighting and winning. So the actual capabilities of a screening tool have been exaggerated and early detection has become synonymous with the cure.'”

Ginny wanted her experience to have meaning. “I never want to characterize cancer as a gift,” she wrote. “I don’t think I need to endure treatments and side effects the rest of my life just to be a better person. But I’d like to believe that I have Stage IV metastatic breast cancer for a reason: to speak out about it, to educate people, to fill in the missing gaps in the breast cancer awareness messages, to dispel the ‘guilt’ myth, that this cancer is my own fault, that I failed to eat right, think positively, live well.”

She further noted that October 13 is Metastatic Breast Cancer Awareness Day. “It’s the one day in Pinktober that Metastatic Breast Cancer Network lobbied Congress for in 2009. One day to talk about the ugliness and deadliness of breast cancer, but also the promise and hope of 155,000 or more living with the disease in the US, struggling to live every day well, waiting for the next treatment to extend our lives a few months longer, hoping for a cure to finally stop metastases from occurring. . .It’s not too early to start thinking about October. I’ll be writing letters, lobbying the media, working to get the message out…”

Amen, Ginny. We will, too. 

–Katherine O’Brien, August 2016

 

MBCN’s KOB, Shirley Mertz and Ginny with metastatic researcher Andrew Ewald at Johns Hopkins, presenting a grant award in 2015.

Adrian B. McClenney, IBC Patient Advocate, Author and Inspiration

 

Adrian’s 2016 Ford Model of Courage photo.

We are sorry to share that Adrian B. McClenney has died. Adrian was 46 years old–a beautiful, wife, mother, grandmother, sister and friend.

I met Adrian in New York when we both participated in a workshop conducted on behalf of the Metastatic Breast Cancer Alliance. We were there to provide insights on what people living with Stage IV breast cancer wanted the general public to know about the disease.

I called Adrian and asked if she would like to go to breakfast. She readily agreed and met me in the lobby. Adrian had a seemingly effortless beauty–I don’t know many people who could look that radiant, that together, first thing in the morning, but Adrian definitely could!

We started talking and I learned Adrian was a bus driver until she was diagnosed with metastatic breast cancer. If there was an award for Nicest and Most Glamorous Person Driving a Bus she surely earned it. The transit industry’s loss was patient advocacy’s gain: Adrian was active with many groups–both where she lived in Miami, but also on a national level.

Read more here.

Just a few weeks ago, Adrian flew to California to participate in Project Lead, a prestigious science training program for breast cancer activists. She also is a 2016 Ford Model of Courage–she participated in a photo shoot, modeling gear that is sold online to raise funds for three breast cancer non-profits.

Adrian held a special place in my heart because like my mom, she had inflammatory breast cancer (IBC). IBC is a rare, but aggressive breast cancer that doesn’t have a lump. Overnight, a person’s breast may become red and swollen with the skin having the texture of an orange peel. It accounts for about 5% of all breast cancers and is usually found at Stage 3 or Stage 4. People with IBC are often misdiagnosed–their cancer may be confused for a breast infection such as mastitis. Further complicating Adrian’s case was her breast cancer’s triple negative subtype. Triple negative breast cancers are often more aggressive, and, since there is no protein or receptor to target, chemotherapy is typically the only treatment available.

It took five months for Adrian to be properly diagnosed. She worked to inform others about IBC, starting an initiative called Hot Pink  High Steel Toe Boots “to educate the world about inflammatory breast cancer.”

Adrian was diagnosed with Stage 3b IBC on May 19th 2011. Her treatment regimen consisted of 16 cycles of chemotherapy, a bilateral double mastectomy and 37 radiation therapy treatments. In  March of 2012, Adrian had No Evidence of Disease (NED). Unfortunately, in July 2014 she learned her cancer had returned and this time it was metastatic, having spread to her neck, check wall and pelvis.

When me met in New York, Adrian told me a little about her family and her pride and love were obvious. “All I could think of were my children and who would take care of them,” she said, when remembering her diagnosis. Her daughter was in fourth grade at the time of her original diagnosis. Her son was playing college football for a well-known program but Adrian would never have told me that–she seemed very modest–both about her own talents and those of her family.

On Facebook, she was Author Adrian–she wrote two books: “Pink Lifesaver”, a 31 day affirmation book with biblical scriptures included and “Pink Sunshine”, a self-help workbook designed for you to realize what you’re grateful for and what truly means the most to you. She  also co-authored “Igniting Your Faith Factor.”

A quick glance at Adrian’s Facebook page shows the tremendous legacy she leaves. Friends and fellow advocates from across the county shared photos and how much Adrian touched their lives. Many spoke of her laugh, her smile and her strong faith. Others also shared how Adrian had reached out to encourage and inspire them when they faced challenges of their own.

Her faith never wavered. Adrian was often exhausted from her treatments but few people who saw her would have guessed this. “There are many things in life that happen that we don’t plan, but we adjust, regroup and keep pushing forward,” she said. “No matter what, I refuse to lose. I am tired every day, but it is my duty to fight like a big girl. All the challenges I face, I do it with a smile. I have a family that needs me, but loves me more.”

Our sincere condolences to Adrian’s family and friends. She will be sorely missed.

–Katherine O’Brien, August 2016

 

 

 

 

Celebrating Jill Cohen, Dancing With Cancer Blogger

Jill Cohen, photographed by Ben Heath for the 2015 Story Half Told campaign

We are sorry to share that “Dancing With Cancer” blogger Jill Cohen died this past Thursday, August 11, 2016. Jill lived for a remarkable 14 years with metastatic breast cancer. She was 56 years old.

“Jill’s last dance with cancer occurred this morning at 11:18 today at hospice at Swedish at Cherry Hill in Seattle,” wrote her husband, Rik, in a Facebook post. “She was not in any pain. Susan her sister and I were there holding her hands as she breathed her last breaths. She lived life to the fullest, and wanted no “pity party” so do not mourn her death but celebrate her life by living and loving each other. Thank you to all for the hugs, love and reachouts from around the globe. Jill and I thank you from the bottom of our hearts.”

Funeral services are set for Sunday at 3PM at Congregation Beth Shalom at 6800 35th Avenue NE in Seattle’s Wedgwood neighborhood. In honor of Jill’s last request purple is the color of the day. 

“I know many women don’t live as long as I have with mets (12 years as of August 2014),” Jill said  in this post. ” I think I provide hope to many even though I have mets to multiple bones, liver and brain, long-lasting neuropathy and lymphedema as well as the usual fatigue etc. associated with years of treatment.”

Jill most certainly did provide her fellow patients with hope. She had so many talents and interests: music, cooking, writing, dogs and of course dancing. Although cancer was part of her reality, Jill was so much more than a cancer patient. She was always on the go. I was amazed in 2014, when Jill went on a tour of Bulgaria with her folk choir, Dunava. I really enjoyed Jill’s accounts of the trip: She was a keen observer with a fine eye for small details. “New shops, cafes, and restaurants abound,” she wrote of her excursion to Plovdiv, the second largest city in Bulgaria. “Except for the public toilets, where a squat toilet and Western-style toilet sit privately side by side. To use either one, you have to ‘pay’ the lady outside 50 stotinki, which regretfully doesn’t make the toilets any cleaner.”

Jill was very proud of her heritage–she gave her readers a wonderful glimpse into her faith and its traditions. In 2010, she wrote about celebrating the Jewish new year. “I was honored with the Kohen aliyah to the Torah,” she wrote. “Every time I am asked to read this blessing, I think of my father. For Dad, being a Kohen, a descendant of the ancient Jewish priests, was a special responsibility and privilege. . . I remember the first time I was offered the Kohen aliyah, at summer camp when I was about 15. I knew about it a few days in advance and had to call home long distance — collect! — from the pay phone to be sure I knew my full Hebrew name: Yachna Maryam bat Shimon Shir haKohen u’Masha Leah. Dad was startled but happy to oblige.”

Although Jill provided in-depth descriptions of all that was happening with her treatment, these accounts were straight forward–no drama, no despair, just the facts. Or, as Rik said, no pity party.

Jill was active with many cancer groups–a great spokesperson for those living with Stage IV breast cancer. She participated in Living Beyond Breast Cancer’s (LBBC) Hear My Voice patient advocacy program and shared her story here. She was one of five women with mets profiled as part of  A Story Half Told,  a national partnership with advocates, patients and healthcare professionals that aims to elevate public understanding of metastatic breast cancer.

Jill said that her philosophy was Dum vivimus, vivamus which means while we live, let us live. “Life is precious,” Jill said. “In a very real sense, we all have the same amount of time — today.”

May her memory be for a blessing.

 

–Katherine O’Brien, August 2016

Clinical Trials: Special Stage IV Search Engine, a great book and more

See Metastatic Trial Search

 

Are you looking for a metastatic breast cancer clinical trial? A new search engine makes it easy to quickly identify trials appropriate to your situation. The Metastatic Trial Search , powered by BreastCancerTrials.org, also translates the trial descriptions into plain English.

Although I am not currently looking for a trial, I was curious to see what a search would yield. I filled out the required engine fields (only five). The results returned 180 possibilities. I quickly scanned through the listings–and I found a couple I will keep on my radar. Why not take a look? Just click here: Metastatic Trial Search

Another valuable resource is this book, Cancer Clinical Trials by Tomasz M. Beer, M.D.  and Larry W. Axmaker, Ed.D. I found this 160-page soft cover book at my local library. I was surprised, because I live in a small town and the selection of cancer books is limited. I also wondered if the authors would have enough material for a book-length manuscript. It turns out they did!

This is a great book–very easy to read and the reader can easily browse through the chapters to find the material of greatest interest to him or her. The book is divided  into four parts: Cancer and Cancer Treatment Basics, What Are Clinical Trials and How Are They Organized, Deciding Whether to Participate in a Clinical Trial, Medical Treatment of Cancer Now and in the Future.

Although I was familiar with some of the material, there was quite a lot I didn’t know. I knew some of the history behind the evolution of the clinical trial system, but I came away knowing a lot more. I also appreciated the chapter on drugs currently in testing. Categories of chemotherapy drugs include antimetabolites, alkylating agents, DNA cross-linking derivatives, antitumor antibiotics, miotic inhibitors. Hormonal agents are also covered: testosterone and estrogen lowering drugs, hormone blocking drugs and testosterone conversion/activation blockers. But wait, there’s more: small-molecule targeted drugs, monoclonal antibodies, immunotherapy, differentiation therapy and gene therapy. Obviously, not all of these drugs have application to metastatic breast cancer but I appreciated the clear explanation of what they are and how they work.

You can read an excerpt from “Cancer Clinical Trials: A Commonsense Guide to Experimental Cancer Therapies and Clinical Trials” here.

While you cannot know the results of a clinical trial that has not been completed, it’s important to thoroughly understand why the trial is being conducted (the hypothesis) and how it’s going to be conducted (the experiment). You’ll also want to know how the clinical trial might benefit you: what is the expected—or hoped for—result. We will help you learn to ask the right questions of the right people to get these answers more quickly.–Dr. Tom Beer and Larry W. Axmaker

 

Cancer Clinical Trials Cover Final

–-Katherine O’Brien, August 2016

Before, During and After: Laura’s MBC Story

Laura and friend

Laura Snyder is a wife, mother of two, triathlete and patient advocate. In 2012, at age 49, she learned she had stage IIIa  breast cancer  that was ER-positive and HER2-positive.Chemo, surgery and radiation followed and she was deemed cancer-free.  But nine months later, Laura felt a lump in her neck. 

She learned the cancer had metastasized to her lungs, liver, and mediastinal and supraclavicular lymph nodes. Laura was treated with Taxotere, Herceptin, and Perjeta. After scans showed no evidence of disease (NED), she continued on Herceptin and Perjeta. Early in 2015, while doing flip turns in the pool during her regular swims, she felt mildly disoriented. She subsequently learned she had brain mets.  Whole brain radiation followed as did  Xeloda and Tykerb. In January 2016, additional lesions were found and she had gamma knife treatment. In June of 2016, after experiencing vertigo, Laura learned she had more brain mets and again had gamma knife treatment. She’s currently on TDM-1. 

After Laura’s most recent gamma knife treatment, she drew a self-portrait of herself in “the cage” aka the head frame used to ensure a patient remains in the exact same position for the procedure. Her drawing was so powerful it prompted us to invite her to share her story–and like Laura, this story is multi-faceted. Brain mets is part of it but there is so much more. You can read more about Laura on her blog. –Katherine O’Brien, MBCN, July 2016

 

Before, During and After

By Laura Snyder

June 2016: Back in the Cage | Before: – the abject, jaw clenching dread. During – the “Breathe, just breathe, from the belly” I repeat to myself throughout the seven hours I’m in this cage, feeling like a torture victim right out of a sci-fi horror movie. After – I don’t remember, did we get Vietnamese food?  As David Byrne sang, “Well, how did I get here?”

Let’s go back in time. . .

July 2012: Stage IIIa Diagnosis | In July I did my best Olympic distance triathlon to date. That’s a mile swim, a 25-mile bike ride, and a 10k (6.2 miles) run. I was a youthful 49 years old. This was me four years ago, thinking about whether to continue with this distance or move to a half Ironman.

Yup. One month later, I was diagnosed with Stage IIIa HER2+++ breast cancer in my right breast and several lymph nodes. Premeds are better now but the treatments have been the same for decades. Some of us call it Poison/Slash/Burn. First I had a six month regimen of difficult IV chemotherapy, followed by a bilateral mastectomy right to implants and axillary lymph dissection in which twenty of my precious lymph nodes were removed.

Pathology showed I did not have a pCR (pathologic complete response) to chemo, which I had been hoping for, and which I would have prayed for were I not a staunch atheist. Then the Burn – seven weeks of daily radiation an hour from home. I was done (except for the rest of the Herceptin infusions)! At least I thought/hoped I was.

May 2014: It’s Back | I suddenly felt a lump in my neck in May. It seemed to come out of nowhere. I tossed and turned with anxiety all night, and in the morning called my beloved oncologist. His response was “When can you get here?” Two hours later he was talking me down from a cliff and encouraging me to let the biopsy tell us what was going on.

Turns out I am one of the estimated 28% of early stage breast cancer survivors whose cancer metastasizes – mine to lymph nodes, liver, and lungs. After another regimen of chemo, this time for about eight months, I was pronounced NED (No Evidence of Disease). I prefer to call it NRED at this point of being a grizzled old cancer veteran, which stands for No Radiologic Evidence of Disease. Because with MBC YOU JUST NEVER KNOW.

June 2015: Brain MRI | In June,  I felt just a little funny doing flip turns in the pool. In another life I would have chalked it up to hunger, or dehydration, but in mets life I bugged my doc for a brain MRI. Yup. Eighteen lesions in what’s called a miliary pattern (don’t ask, I still don’t get it!), which meant they could not be treated with gamma knife so ten rounds of whole brain radiation later I was sent home to wait and see what my next scans would show. And I had to drop my beloved Herceptin and Perjeta and switch to Xeloda and Tykerb which are thought to cross the blood brain barrier.

January 2016: Shocking Developments | January: I was shocked – I don’t know why – to find out there were four lesions in my brain. Gamma knife here we go.

This involves wearing a cage literally screwed into the head, two in the forehead and two in the back of the head. It’s not lightweight by any stretch either. Each lesion would take about twenty minutes so I was in the game, after waiting hours for the detailed MRI to be read and for the radiation oncologist and medical physicist to plan their attack. Afterwards at a Vietnamese restaurant I was horrified to notice there was blood dripping down the back of my head.

June 2016: Vertigo | I’d had one clean brain MRI in April. Six weeks later I experienced some awful vertigo and asked to have the next one early. Lo and behold, a few more lesions to zap. Unfortunately, the more detailed MRI (1mm slices v. 5mm slices) showed 22. Yep, 22. I thought well, that’s it, I’m dead.

But the team wanted to gamma knife them all. I picture Dr. Kee, Dr. Adler, and the physicist whose name escapes me engaging in a huddle, coming out, doing a big chest bump, and hiking the ball. They were rock stars, as were the nurses and even an aromatherapy lady spritzing me with lavender and telling me to breathe as they bolted the frame on.

I was loopy (Ativan and Oxycodone), most of the time but I sensed that there was always some combination of this group around me, making sure I was doing OK. I wasn’t (who would?), but as we like to say at my house, it was “good enough for who it’s for.” I spent seven hours in the cage this time.

Treatment was again switched to TDM-1, part chemotherapy and part targeted treatment. And here I am. I am still reeling a little, and worried.

“Self Portrait With Cage”  by Laura Snyder

Drawing My Feelings | I drew this picture (the first I have drawn since high school art class) as an outlet for how I felt/feel. Most people are lucky enough not to see an image like this in their lifetimes!

While drawing, I referred to a photo of me resting in denial of the cage around me. My  drawing expresses the angst, sadness, and pain of finding oneself in this unenviable position. I’m no artist so I feel silly saying this, but I’m inspired by Frida Kahlo’s self portraits depicting the intense pain she suffered.

I call it “Self-Portrait with Cage,” stating the obvious. I couldn’t stop thinking “the devil’s in the details” when I looked at it. I think it’s because I drew very literally – the different colors of metal, the bolts and screws, the creases in the pillow and folds in the blanket, the dark circles under my tired, gray-tinged eyelids. I am planning to draw a series where I try to capture the emotions around MBC and its treatments.

How I Feel Now | In spite of this depressing report detailing the last four years, I find myself pretty content if I look through the lens of the everyday. I am a dedicated yoga practitioner and this I think has helped my body and mind more than anything. I don’t work, because each time I’ve tried some cancer catastrophe is thrown my way to deal with (see all of above!).

I swim; knit; write (not enough); play ukelele; hang out with my husband, kids (18 and 20 years old), and friends; and of course have started to draw. I started a yoga for cancer class at my local hospital, taught by my fabulous and inspired teacher, a yoga therapist. I’ve attended two LBBC Metastatic Breast Cancer Conferences and made deep friendships that started online even deeper. And learned how to be an advocate in LBBC’s Hear My Voice Program and lots of other stuff too.

Summing Up | I’m still alive to say that if you have MBC I have some advice:

• Support groups, whether online or in person, are invaluable. We can be so isolated and scared without other people to communicate with who walk in our shoes.

• And… be careful about getting your information from legitimate web sites or oncology professionals. There are a lot of ridiculous scams and “cures” to be found. Go the science direction.

• Find a yoga class that suits you and exercise when you can.

• AND find some contentment in your life every day. Your life is not over yet!!

Remembering Sarita Joy Jordan

Sarita at MBCN’s 2015 Conference in Boston

We are sorry to share our friend and fellow advocate Sarita Joy Jordan died this past weekend. Our sincere condolences to Sarita’s family and friends.

I met Sarita shortly after her 2013 metastatic diagnosis. We were at the YSC conference in Orlando and she had just participated in the Disney Princess 5K. Her first thought was for her children–I think that was always her outlook–her children came first.

I often told Sarita that she was so well named–“Joy” was her middle name and she truly exuded it. Sarita brought joy to so many people. If they were having a bad day, they could count on her Facebook posts to raise their spirits. They were often just a cute picture, sometime selfies of her morning drive with “Mini Me” as she sometimes called her youngest son. Sarita was very proud of her kids’ athletic, artistic, musical and scholastic achievements–we loved to share in this pride when she posted their latest accomplishments.

Sarita’s ever present smile was her trademark. She was among the most open and giving people I have ever met. Sarita gracefully dealt with insurance and other issues that would have made most of us swear, cry or just rant. That was not her way. She just deal with things–and she had faith things would ultimately be resolved.

Faith was so very important to Sarita. A lot of people don’t live their faith–Sarita really did–she embodied The Golden Rule. She touched so many lives–and by her own example surely inspired others to love their neighbor, too.

I don’t think Sarita ever hesitated to try something new. A few years ago, she was urging me to sign up for “Casting for Recovery.” Although I am a country mouse, the idea of putting on hip waders and standing in some body of water trying to catch a salmon or trout with a fly fishing rod was not in my comfort zone and I said so. Sarita, the Philly girl, didn’t hesitate at all. Even after she hooked her eye with first ever cast, her enjoyment wasn’t diminished one bit.

Last fall she posted a video of another adventure–this one was First Ascents, I believe. The trip involved  not only kayaking but sitting in the kayak on a bridge about 10 or 12 feet above the water and launching the kayak–essentially jumping into yet another body of water but while wearing a kayak. I can still remember the cheers in that video after Sarita successfully completed the challenge–maybe none louder than hers.

Mary Hernandez and Sarita shooting the MBC Alliance video: https://www.youtube.com/watch?v=AqUS582jkfg

Sarita was a tireless advocate. She worked with the American Cancer Society, Living Beyond Breast Cancer, the Metastatic Breast Cancer Network, the Metastatic Breast Cancer Alliance, Young Survivor Network and I am sure many others. A few months ago, despite all that was going on with her health, she even served as a DOD reviewer.

For an LBBC blog post, Sarita reflected on why she told her story: “I choose to share my story so that others don’t feel they are alone. I tell my story because I am an African-American and my community needs to be able to relate to the messenger…I  tell my story because I’ve learned that little money is spent on research for metastatic breast cancer and I’m running out of time to have my voice heard. This is why I am so grateful to be a Hear My Voice Outreach Volunteer with LBBC: to participate in community events and advocacy for metastatic disease. I tell my story for those that are no longer able to tell theirs.”

Last year I wanted to make a video about racial disparities in breast cancer. Many of the people featured in the video were Sarita’s friends. I am indescribably sad that she has now joined those friends.

But I will take my cue from Sarita–I will tell my story–and others. And I will embrace the words Sarita used in her Facebook profile: Educate, educate, educate!

Sarita’s legacy is everywhere–in her children, in the many, many lives she touched, in the countless advocacy projects she did. It was truly an honor and a blessing to have known Sarita. I miss her already and I always will.

—Katherine O’Brien, June 2016

 

Notes for Those Newly Diagnosed With Metastatic Breast Cancer

Learning you have metastatic breast cancer can unleash a tsunami of emotions. Fear, panic, anxiety and anger are just a smattering of common responses. How can you deal with these feelings?

 

 

 Living Beyond Breast Cancer (LBBC) and MBCN have worked together to produce a  Guide for the Newly Diagnosed. See http://www.lbbc.org/get-support/print/guides-to-understanding/metastatic-breast-cancer-series-guide-newly-diagnosed

 

Talk to your oncologist--he or she may prescribe Ativan or other anti anxiety medications. Many treatment centers also have counselors on staff who specialize in helping those dealing with a cancer diagnosis. Ask if your center has a support group for metastatic breast cancer patients. Your oncologist also may be able to connect you with someone dealing with a similar diagnosis. Oncologists–like all medical professionals–must respect privacy laws.

 

If your doctor can’t suggest a local contact, you can reach out to a peer matching program and/or metastatic breast cancer hotline.

 

Here are several to check out:
SHARE hotline and phone support groups: http://www.sharecancersupport.org/share-new/support/groups/#metastatic

Living Beyond Breast Cancer helpline and other resources: http://www.lbbc.org/node/1578

Young Survival Coalition SurvivorLink is here: https://www.youngsurvival.org/survivorlink

 

Support Connection provides emotional, social and educational support here: http://supportconnection.org/contact-us-for-support/

 

BreastCancer.org has excellent information as well as  a dedicated Stage IV discussion forum. Here you will find others with MBC  https://community.breastcancer.org/forum/8

 

BCMets was among the first online forums for people living  with metastatic breast cancer:https://www.bcmets.org

 

Inspire.com hosts an Advanced Breast Cancer board: https://www.inspire.com/groups/advanced-breast-cancer/

Most people are familiar with early-stage breast cancer. Just what is metastatic breast cancer? Here is a concise overview:

 http://www.uptodate.com/contents/treatment-of-metastatic-breast-cancer-beyond-the-basics

…and here: https://medium.com/@ihatebreastcanc/metastatic-breast-cancer-the-missing-manual-from-a-stage-iv-patient-f8420a5a817d#.spajn14ks

NCCN Guidelines for Stage IV breast cancer treatment can be found here: http://www.nccn.org/patients/guidelines/stage_iv_breast/files/assets/common/downloads/files/stage_IV_breast.pdf   ( This PDF was issued in 2014; several new drugs have come out in the interim.)

BreastCancer.org has a detailed guide on understanding your pathology report: http://www.breastcancer.org/Images/Pathology_Report_Bro_V14_FINAL_tcm8-333315.pdf

How do you find an oncologist? You can ask your primary care doctor for a referral. Also: consider working with an NCI designated cancer center. Here  is a list: http://www.cancer.gov/research/nci-role/cancer-centers/find

Receiving the NCI-designation places cancer centers among the top 4 percent of the approximately 1500 cancer centers in the United States. More here: https://en.wikipedia.org/wiki/NCI-designated_Cancer_Center

 

Finally, we urge both the newly diagnosed and “veteran” patients to watch

Dr. Don Dizon’s EXCELLENT presentation from MBCN’s 2013 national conference: https://www.youtube.com/watch?v=5RKCGEpk2po

Dr. Dizon’s PRO approach (Pragamatic, Realistic and Optimistic) resonates with patients. Hopefully after watching this video you will feel informed, uplifted and empowered!

Metastatic Breast Cancer Researchers Address MBC Alliance Meeting This Week

Advocates, researchers, industry and government representatives are at the Alliance’s meeting, including MBCN’s own Shirley Mertz

 

Metastatic Breast Cancer Alliance Research Task Force Meets Today in Dallas; Focus of Discussion is Improving Length and Quality of Life for People Living With Metastatic Disease

Dallas – February 1, 2016 – Metastatic breast cancer (MBC) is cancer that originated in the breast but has spread to other parts of the body, such as liver, lung, bones and brain. It causes >40,000 deaths every year in the U.S., a number that has remained unchanged for three decades.  

This alarming fact is driving the advocate-led Metastatic Breast Cancer Alliance (“the Alliance”) to convene 60 experts from patient advocacy, academia, industry and government to discuss barriers in MBC research and possible solutions to better coordinate and accelerate research and translation to help patients sooner.

“As a person living with MBC each day, I’m grateful for the scientists and experts who have taken time out of their busy schedules to help guide the Alliance in the most thoughtful directions for MBC research,” commented Shirley Mertz, President of the Metastatic Breast Cancer Network and Co-Chair of the Research Task Force.  

Dr. Danny R. Welch, Professor and Chair of Cancer Biology at the University of Kansas Cancer Center noted at the start of the meeting that “My career has been focused on research on metastasis and putting an end to breast cancer. I have never seen as much energy, collaboration and excitement to work together – across academic, patient advocacy, industry and government sectors- as I have by working with this Alliance.”  

“As Co-Chair of the Alliance Research Task Force, along with Shirley Mertz, we’ve been working with these experts for the last eight months [by phone and webinar] discussing barriers to MBC research,” said Stephanie Reffey, Managing Director, Evaluation and Outcomes at Susan G. Komen, today. “These prior meetings culminated in today’s “Think Tank” in Dallas, where we are devising specific, actionable projects the Alliance can lead to accelerate MBC research.”  

In 2014, the Alliance released its Changing the Landscape for People Living with Metastatic Breast Cancer Report, which analyzed 224 clinical trials, 2281 funded research grants, 7900 MBC patient responses to surveys and 175 literature articles on quality of life and epidemiological studies.  

“Our research of the scientific landscape found a number of gaps and challenges in lab research and clinical trials impeding progress in scientific research,” said Chair of the Alliance, Dr. Marc Hurlbert. “After today, the Alliance’s task is to now facilitate a cooperative effort to review the objectives from this meeting and develop actions that can be taken in the immediate term. Given the toll MBC takes on patients and their caregivers, we have a responsibility to waste no time acting on the direction from this important meeting.”  

Representatives at the meeting in Dallas include:
Advocate Nonprofits: Breast Cancer Research Foundation, BreastCancerTrials.org, Dr. Susan Love Research Foundation, Inflammatory Breast Cancer Research Foundation, Metastatic Breast Cancer Network, Patient Advocates In Research (PAIR), Research Advocacy Network, Susan G. Komen, Theresa’s Research Foundation  

Academic Institutions: Baylor College of Medicine, Broad Institute, Dana-Farber/ Harvard Cancer Center, Fred Hutchinson Cancer Research Center, Institute of Cancer Research (UK), Johns Hopkins University School of Medicine, NYU School of Medicine, Salk Institute for Biological Studies, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, University of California San Francisco, University of Kansas Cancer Center, University of Michigan, University of Pittsburgh Cancer Institute, University of Southern California, University of Washington School of Medicine, University of Texas MD Anderson Cancer Center
 

Government: U.S. Food and Drug Administration, National Cancer Institute
 

Industry: Eli Lilly and Company, Genentech, Novartis Pharmaceutical Corporation, Pfizer Worldwide Research & Development
 

About the Metastatic Breast Cancer Alliance
The Metastatic Breast Cancer Alliance is led by advocates and, since forming with 15 groups in October 2013, has grown to be the largest breast cancer alliance in the U.S. with 40 of the leading cancer charities, advocacy groups and individuals and pharmaceutical industry partners. The Alliance vision is to transform and improve the lives of people living with metastatic breast cancer. The Alliance’s work focuses on three outcomes:
1. Advancing progress in scientific research
2. Increasing understanding of the disease and access to information and support
3. Building awareness of how metastatic disease differs from early stage breast cancer
 

More information about the Alliance is available at www.mbcalliance.org
Facebook: https://www.facebook.com/mbcalliance/
Twitter: @mbcalliance #MBCResearch
YouTube: http://www.youtube.com/mbcalliance