Category Archives: Advocacy

Remembering Beth Caldwell

Beth Caldwell died earlier this month from metastatic breast cancer. She was 41 years old.

Beth had many gifts–she was smart, very funny and a galvanizing force. I know I am not alone in still expecting one of her Facebook bulletins in all caps: YOU GUYS!!!

Beth was a born leader–heaven’s gain is Washington’s loss–we can only imagine what Senator Caldwell might have accomplished.

In recent weeks, many of Beth’s family, friends and colleagues have shared their memories. There were photos of Beth with her fellow Girl Scouts, high school friends, marching band friends and play group friends. There were college photos, wedding party photos and newborn baby photos and  epic family vacation photos.

I knew Beth as as advocate rallying her fellow patients and demanding to be heard–but she was so much more than that.

I don’t think you could easily categorize Beth…she would likely have agreed with Mark Twain that under certain circumstances profanity provides a relief denied even to prayer…if I were her, I would have listed that in my LinkedIn profile: Fluent in swearing.

But I think it was largely a rhetorical device–because Beth had such a huge heart. If the Girl Scouts gave Empathy merit badges Beth’s sash would be overcrowded…she wasn’t a religious person, but she was right there for the least of her brothers (and sisters). She did this personally (contributing to countless Go Fund Me campaigns) and as a citizen–she was truly invested and involved in her community.

Beth and I shared a love of old movies. I must concede Beth’s knowledge was far more encyclopedic than mine–she could have hosted her own Turner Classic Movies show. Like her, I loved “Singing in the Rain,” “All About Eve” and so many more.

Beth was like one of those movie heroines from the 40s or 50s…she had moxie. Like Judy Garland, she DID actually put on a show in her backyard. (Well, a concert, but close enough.)

Beth often spoke of actions in terms of their life saving potential for people with metastatic breast cancer, of people coming to save us.

I like the sound of this–that to the swelling of an uplifting and triumphant John Williams score, we could be swept to safety and live happily ever after.

What an awesome movie that would be.

Real life unfortunately seldom adheres to a neat script.

If you want to continue Beth’s work, please consider supporting this memorial fund at Fred Hutch.

Beth’s family will receive a card notifying them of every donation–I know it would mean so much to them–please support this fund.



ASCO 2017: Metastatic Breast Cancer Highlights



The American Society of Clinical Oncology (ASCO) Annual Meeting took place two weeks ago in  Chicago. I was among the estimated 38,800 people in attendance.

If all of the attendees were present at the same day at the same time, they would fill Fenway Park.  And if we could convince all of them to stop everything and  sing “Sweet Caroline” on the penultimate day of this five-day meeting–well, that would be a dream achieved.

ASCO got started in 1964 with the goal of putting the patient front and center. At a time when most cancer-focused organizations concentrated resources on pathology and research, the seven founding members stressed the clinical considerations and the care of patients with cancer.

As someone living with metastatic breast cancer, I am grateful ASCO is patient-centric. I attended plenary sessions featuring some brilliant and compassionate speakers as well as some sessions specifically  for patient advocates. I also visited some exhibitors, talked to some pharmaceutical companies about their latest efforts and tried to take in some of the many posters on display.



Some say that CDK 4/6 inhibitors are revolutionizing treatment options for estrogen-receptor-positive metastatic disease. Palbociclib (Ibrance) can claim bragging rights for being first on the market. It has since been joined by Ribociclib (Kisqali) and a third option, Abemaciclib, is expected to gain FDA approval in the Fall of 2017.

As the Breast Cancer Research Foundation (BCRF) reported in this blog post: 

Dr. George Sledge presented new data from Monarch 2 that showed the addition of abemaciclib improved progression free survival from 9.3 months to 16.4 months, further demonstrating a clinical benefit of CDK4/6 inhibitors for this group of patients. In addition, early results from another trial suggest that abemaciclib may have some antitumor activity in brain metastases as well. These positive results suggest that abemaciclib will be approved later this year or in 2018.

Discussing the promising results seen with CDK 4/6 inhibitors, Dr. Ingrid Mayer of Vanderbilt University Medical Center summarized the current status of CDK4/6 in the treatment of HR+ metastatic breast cancer:

1) CDK4/6 inhibitors are likely to be most effective in combination with other treatments, as has been shown with endocrine (anti-estrogen) therapies.

2) CDK4/6 inhibitor are good options as second line therapies.

3) CDK4/6 should definitely be considered for treatment of HR+ metastatic breast cancer.

Some thoughts from a patient perspective: All three drugs are pills and don’t cause hair loss. Although most patients with Stage IV breast cancer will ultimately have IV chemotherapy at some point, CDK inhibitors are another option in the “least-toxic-option-first” tool box. Some patients may enjoy a long stretch of time before having to move on to another treatment.

Duly noted: Palbociclib and Ribociclib can cause blood counts to tank–neutropenia can be an issue. Unlike chemotherapy, however, counts generally rebound–it doesn’t appear to be a long-term consequence. Abemaciclib can cause loose stools. Lilly is actively evaluating Abemaciclib in lung cancer, pancreatic cancer, and patients with brain metastases.

Take the CDK Inhibitor Challenge: One practitioner said the decision to use one of these drugs vs. the other is  “like Coke vs. Pepsi.” Because these drugs are fairly new (and in one case not yet on the market) it remains to be seen why one would be given over the other. At the moment, Ribociblib is slightly cheaper than Palbociclib which carries a monthly (before insurance) price tag of $9,850.

Additional observations: When given in combination with antihormoneal therapy, the time to disease progression is significantly longer. But so far, there isn’t a survival benefit. “What we want to find out is if this will translate into patients living longer,”  said Dr. William Gradishar of Northwestern University’s Lurie Cancer Center at post-ASCO patient meeting hosted by Chicago’s Silver Lining Foundation.

“That’s not to minimize the delay in how long it take [before a patient] has to change therapy–that is very important–but ultimately we want to see patients living longer. So far that has been a little frustrating and may require a longer follow up.”


Targeted therapies  like Herceptin (Trastuzumab ) and Perjeta (Pertuzamab) are the mainstays of HER2 positive treatment. When these two antibodies were added to chemotherapy, the survival of patients–not just progression-free survival, but patients’ actual survival–improved by over a year. “Is that good enough?” asked Gradishar. “No. but it’s actually a fairly dramatic improvement in outcomes that we don’t often see in the therapies we use. It’s dramatically changed how we take care of patients with this type of breast cancer.”

Gradishar then went on to discuss T-DM1 (Kadcyla) which he characterized as Herceptin attached to a chemotherapy drug. “We found through a series of trials if you give T-DM1 after the disease has gotten worse on Perjeta and Trastuzumab, you also incrementally improve patients’ outcomes.”

Although T-DM1 does incorporate chemotherapy, there are far fewer side effects than one would experience on chemo alone, thanks to its Herceptin-provided targeting capabilities.

What if a patient got T-DM1 first, rather than Herceptin and Trastuzumab–would it make a difference in outcome? Not really.  Here is how BCRF put it:

As more HER2-targeted treatments become available, there is a growing interest in combining these targeted therapies and reducing exposure to chemotherapies. T-DM1 (Kadcyla®) was originally approved as second line treatment based on results from the EMELIA trial. Those results led researchers to ask if T-DM1 could be a better first line treatment than current treatments.

The MARIANNE trial was a Phase III study comparing dual HER2- targeting (adding pertuzumab to T-DM1) to standard of care (trastuzumab plus chemotherapy. New data from the MARIANNE trial were presented this week that showed that addition of T-DM1 was as good as, but not better than the standard of care. There were fewer adverse effects however, which suggests T-DM1 may be an option for first line HER2+ metastatic breast cancer patients. Results from other trials, like ALTERNATIVE, suggest that in patients with HER2+/ HR+ metastatic breast cancer, combining dual HER2-targeted therapies with hormone therapy may be as effective as regimens that include chemotherapy.

Hey MARIANNE: Although some might say the MARIANNE results were disappointing, Gradishar offered a more pragmatic perspective: “It tells us we have equally effective drugs that can be used and that’s a good thing.”

Not forgetting SOPHIA. . . This wasn’t the focus of an ASCO 2017 presentation, but for HER2 positive patients tracking new developments, the ongoing phase III SOPHIA trial (NCT02492711), researchers are comparing margetuximab plus chemotherapy with trastuzumab (Herceptin) plus chemotherapy. In a previous phase I study, margetuximab demonstrated single-agent activity in HER2-positive tumors, leading researchers to explore the regimen in the phase III trial.

In an interview with OncLive during the 2016 San Antonio Breast Cancer Symposium, Mark D. Pegram, MD, director of the Breast Cancer Oncology Program at Stanford Medicine, called margetuximab “an exciting molecule.” He explained patients in both arms of the study will receive chemotherapy of physician’s choice; there is a menu of options— capecitabine, gemcitabine, vinorelbine, and eribulin (Halaven)—and they’ll get that in combination either with trastuzumab in the control arm or in combination with margetuximab in the experimental arm.

“In this pivotal trial, it will go toe-to-toe against trastuzumab in the salvage setting after prior treatment with trastuzumab, pertuzumab (Perjeta), and trastuzumab emtansine (T-DM1),” Pegram told OncLive earlier this year.  “The primary endpoints are progression-free survival and overall survival. Patients with brain metastases—if they are previously treated and stable—are allowed to enroll, so that is not an absolute exclusion criteria. It is a fairly liberal eligibility and exclusion criteria. It is an important study that will test the hypothesis of whether you can go 1 above and beat trastuzumab.”


“Triple negative breast cancer is notoriously difficult to treat with targeted therapies,” notes BCRF. “Since it doesn’t express hormone receptors or the HER2 receptor, there are fewer biological molecules to target. Data presented at ASCO does suggest there may be ways to determine which patients will respond best to different treatments.”

According to BCRF, Jelmar Quist from King’s College, London, presented data on a 4-gene signature of TNBC. Depending on if each of these 4 genes has high expression or low expression, six different subtypes can be determined. From these subtypes, it can be determined which patients would be most responsive platinum-based chemotherapy.

Poly (ADP-ribose) polymerase (PARP) inhibitors, have elicited both great excitement and significant disappointment in equal measure in recent years. At ASCO 2017, we saw that there might be some application for those with BRCA1 and/or BRCA2 mutations.

PARPs are a family of enzymes implicated in a host of key cellular processes, including chromosome stability, regulation of apoptosis, cell division, and transcriptional regulation and differentiation. A particularly important role of PARPs is in repairing DNA damage that results from everyday environmental stresses and DNA replication errors.

Gradishar explained that patients with the BRCA1 and BRCA2 mutations have a genetic predisposition to developing breast cancer–because of the mutations, the cell is sort of limping along–PARPs can potentially deliver another blow.

“So you have a tumor cell that’s already mutated–things aren’t working properly,” Gradishar said. “In a sense, you already have one hit–the cell isn’t working on all eight cylinders–it’s working on a few. If you come at the cell with another way of injuring it…if you were able to hit the cancer cell again, you might drive it into cell death and that would be a good thing. What PARP inhibitors do is prevent another pathway from repairing DNA. With the BRCA mutation there’s one hit, and now you knock the other leg out from the cell’s ability to repair itself.”


BCRF reports that results from the ABRAZO study suggest the PARP inhibitor, talazoparib, was well tolerated and may have antitumor activity in patients with TNBC and BRCA1 or BRCA2 mutations.

Overall for TNBC treatments, as BCRF Investigator, Dr. Leisha Emens, stated in her discussion of these trials, integrating the biology of TNBC tumors will be key to improving therapy selection for patients.

In a late breaking abstract presentation, Dr. Mark Robson, presented new data on OlympiAD study, a Phase III clinical trial comparing the single agent PARP inhibitor olaparib (Lynparza) to standard-of-care chemotherapy in patients harboring inherited mutations in BRCA1 or BRCA2 with HER2-negative metastatic breast cancer. Earlier this year, the study met its primary endpoint in showing an improvement in progression free survival of 7 months versus 4.2 months in patients receiving standard of care. At this week’s ASCO meeting, Dr. Robson presented additional analysis from the study. Sixty percent of patients in the olaparib group experienced tumor shrinkage compared to 29 percent in the chemotherapy group and subgroup analysis suggests that olaparib may be more effective in triple negative breast cancer, the most common BRCA- associated breast cancer subtype. You can read more about the study here.

Gradishar noted that most people with breast cancer don’t have BRCA mutations, but for that specific  patient population, OlympiAD showed promise. “This isn’t a home run, but it does demonstrate proof of principle–that these drugs are active in [this subset of patients].”


Immunotherapy can take many forms–infusions, checkpoint inhibitors, vaccines and more. Although immunotherapy drugs have achieved some success in melanoma and lung cancer, it’s early days for breast cancer. “Although there are some signals, there’s not a lot we can hang our hat on and say [to date] these drugs have made a big difference, but we are hopeful that they will,” said Gradishar.

Results from KEYNOTE-012 showed that the immunotherapy drug, pembrolizumab (Keytruda) generally had few side effects and may be effective for TNBC patients. Gradishar described the drug as an antibody that interferes with tumor cells’ ability to fool the immune system. “It’s not targeted therapy, it’s not chemotherapy, it’s not antihormonal therapy. It’s a way of fooling the immune system so it can really activate itself against tumor cells.”

There were 170 patients on this trial. The results were not overly impressive (only about 5% of patients had evidence of tumor shrinkage), some who did respond continued on the therapy for upwards of a year.

“If they are going to get a response, it takes about three months,” said Gradishar. “Although the number of patients who did respond was modest, when they do have a response it can last a long time.”

SIDEBAR: Keytruda has come to the general public’s attention because former President Jimmy Carter has used it with good results for his melanoma.


At past ASCOs, sometimes there have been slim pickings for people with metastatic breast cancer–a few footnotes glossed over on the final day. That certainly wasn’t the case at the 2017 meeting.

We heard updates on numerous therapies for those with hormone-receptor positive disease as well as HER2 positive metastatic breast cancer. There wasn’t quite as much buzz in the triple-negative sector, but some potentially promising studies for a small TNBC subset–those who have BRCA1/2 mutations.

More ASCO News…

Eric Fitzsimmons, LBBC’s copy editor and content coordinator, offered these updates.

SHARE Webinar: Report Back from ASCO on Metastatic Breast Cancer

Tuesday, June 20, 2017

1:00 pm – 2:00 pm

Anne Moore, MD, Medical Director of the Weill Cornell Breast Center, will share her experiences from the American Society of Clinical Oncology’s June 2017 Conference. She will update us on the latest research from the conference as it relates to metastatic breast cancer. More information and registration is here. 


Tagged , , , , , , , , , , , , , ,

Just Keep Evolving: My Patient Advocate Story

How did I get started as an advocate for people living with metastatic breast cancer? It’s a long story–I have to start from the start.

When I was diagnosed with MBC in 2009 at age 43, after the shock and disbelief wore off, I felt a deep-seated anger. I think fear fueled some of this rage—I had seen my mom die from inflammatory metastatic breast cancer weeks after my high school graduation.  I was afraid of dying. (And I still am.)

I was working full-time. Colleagues treated me strangely as news of my diagnosis got around. It was awkward and I had no outlet to vent my pent-up emotions. Not only could I not walk through the office yelling “I AM AFRAID OF DYING AND YOU PEOPLE ARE TREATING ME LIKE THAT’S ALREADY HAPPENING,” at that time I didn’t know any other Stage IV people.

I had not yet found MBCN or any of the online support groups. I could not take to Facebook because neither it nor Twitter were widely used.

It was 2009 and the Affordable Health Care Act hadn’t been enacted. It was clear a layoff loomed in my future–my entire division would eventually be let go–it was only a question of when.

My insurance situation kept me up at night. Had I been let go in 2009, my pre-existing condition meant I would have to go into a high risk pool–provided I could get into one. I went to a presentation at Gilda’s Club on Cancer & Insurance. It sounded pretty bad.

I worried about supporting myself. I worked in a small industry—who was going to hire a woman with Stage IV cancer?  If I couldn’t continue to work, how would I get by? My insomnia worsened.

In this vacuum, my fear and anger festered. I am embarrassed in hindsight, to admit  to some things that seemed like a good idea late at night, when I couldn’t sleep, and felt compelled to rail against what I perceived as stupid and useless fluffy breast cancer initiatives. Mercifully, most of these postings have vanished into the ether.

I blush to recall one such post-midnight sortie when I found Eric Brinker’s email address. (Eric’s mom is Nancy Brinker.) I think it was on a press release for wherever he was working at the time. Anyhow, I sent Eric a note. I can’t remember exactly what I said, but I am sure I didn’t invite him to join my book club. I probably just said I felt more could be done to address the needs of people living with metastatic breast cancer. I believe his response was “How did you get this email?”

While it provided a small measure of satisfaction, part of me knew I wasn’t accomplishing much. It did ultimately lead me to getting involved with the Metastatic Breast Cancer Network. The president in 2009, who has since died, must have had the world’s best-filtered Google Alerts. I had just posted an outraged response to yet another dumb online breast cancer article. It was in some obscure newspaper—I remember hitting “post” and thinking “Well, no one will ever see that.” But thanks to her Google Alert, the MBCN president did—and she asked me to address some similar articles on her behalf.

I did and that ultimately led to me getting more involved with MBCN. Finding MBCN was such a blessing. Initially, I was skeptical—I was 43 years old—and most of the MBCN leadership seemed pretty old to a youngster such as myself. I debated attending its national conference—I was still working and why would I want to spend my precious weekend hanging out with senior citizens talking about cancer?

How very wrong I was. That MBCN  conference was a lifesaver—I could SEE I wasn’t alone. There were a wide range of attendees and I was far from the youngest. I learned so much from the speakers (led by Dr. George Sledge and Dr. Kathy Miller) and the patient stories inspired me.

That’s how I got started as a patient advocate.

I have participated in a wide range of advocacy activities. I’ve been part of NBCC’s Lobby Day, participated in LBBC’s and YSC’s conferences, written dozens of articles about issues facing people living with MBC, attended FDA hearings and been a part of many focus groups.

While MBCN is my advocacy “home,” I try to help where I can. I made a video for the MBC Project.  I partcipated in Beth Fairchild’s Project Hashtag on Mets Monday in 2015.I couldn’t go to Washington DC, but with the help of a friend, I made three videos promoting METUP’s die in.

This one was on behalf of the people who wanted to be there but couldn’t go.


More people who couldn’t attend:


And some of the far too many who have died–their friends sent in their pictures, which were also displayed on posters.


Two of my fellow MBCN board members, Shirley Mertz and Ginny Knackmuhs, joined me at the inaugural die in Philadelphia. Ginny came of age in the 1960s—she was thrilled to participate—she had left the LBBC conference site but she quickly turned her car around and came back after Shirley called her.

Just prior to the event, a woman representing a pharmaceutical company came up to where I was standing with Ginny and Shirley.  “This is morbid!” she said. She appealed to Shirley, as the leader of our group. “Don’t you agree? ” she asked. “We should stop this!”

Shirley looked at her and calmly replied: “I think this is necessary and it should happen.”

And it did.

Shirley has never been known to keep silent for political expediency. One year at ASCO, I was in a packed hotel ballroom and I heard her call out a pharmaceutical executive for his inaccurate (and frankly insulting) characterization of the Affordable Care Act. Shirley Mertz has never faltered  in the courage of her convictions. (She recently appealed to her fellow MBC patients to contact their elected officials to explain accessible care isn’t affordable care--and why that is so important to people with Stage IV breast cancer.)

In 2013, I took on new advocacy challenges when MBCN joined with 16 nonprofits and five pharmaceutical companies to co-found the Metastatic Breast Cancer Alliance. Shirley, an MBC patient, chaired the press conference announcing the event. Two MBC patients shared their stories—we also heard from some researchers about the challenges of MBC.  Today there are 48 members—as well as individual members such as Eliza Adams, Teri Pollastro, Kelly Shanahan and Anne Loeser.

Shirley is the co-chair of the Alliance Resarch Task Force. With LBBC’s Catherine  Ormerod, I co-chair the Awareness Committee (each committee has at least one patient representative).

For the past two years, the Alliance was fortunate to have the pro bono services of an NYC creative agency which helped develop other components of its awareness campaign. If you attended the LBBC mets conference in 2015—you probably met some of the agency staffers—they interviewed hundreds of patients on site and via online surveys.

I am gratified to be a part of the Alliance team that created this petition calling for our cancer databases to start counting all people with metastatic breast cancer.  It was truly a group effort. Please sign it and share it!

I am proud of the work the Alliance is doing and happy to play a role in it. I admit sometimes I am overwhelmed and even frustrated—there is so much to do and I want things to move faster. But I can see things changing. I am not alone in that sentiment.

Dr. Danny R. Welch, Professor and Chair of Cancer Biology at the University of Kansas Cancer Center attended the February 2016 Task Force meeting–he was among the representatives from 15 academic institutions.

“My career has been focused on research on metastasis and putting an end to breast cancer,” said Dr. Welch. “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.”

I am in active treatment—as I believe all patients who participate in the MBC Alliance are. I would hope that no one would evaluate my or any other patient’s effectiveness as advocates based on our physical appearance and perceived treatment history.

As a patient advocate, I can never forget I am a patient for life. Sometimes my disease is quiet–but like most MBC patients I am  familiar with the crisis of progression.I have been blessed with more good days than bad. Not everyone is so fortunate. I am determined to make good use of my time–for myself and for others.

I have attended SABCS every December for the past several years. December 2015 is etched in my mind because I was in a world of hurt—my cancer had spread to my liver and three successive treatments had failed.

I contemplated a clinical trial, but was ineligible due to the prior drugs I had received. Eventually the trial would be expanding its criteria—but I could not wait months for that to happen. I sought two second opinions, made my choice and had just started my new treatment.

The MBC Alliance met in San Antonio—and of course I participated in that meeting. Aside from my own health issues, attending SABCS was particularly difficult in 2015, because my usual conference roommate, Ginny, wasn’t there. Ginny had lobular triple negative disease and was experiencing many setbacks—including brain mets. She died in 2016.

Ginny served on the Alliance’s Information Task Force Committee. She was involved in developing the Alliance’s clinical trials search tool, Metastatic Trial Search, serving as the MBCN liaison to the Metastatic Trial Search project. She participated actively in the group discussions that led to the design of MTS and its subsequent inclusion on the MBCN site.

“Ginny was incisive, asking difficult questions to ensure that the Alliance was founded and moved forward with a clear focus on people living with MBC,” said Marc Hurlbert. “In December 2013 and March 2014, she helped shape our comprehensive Landscape Analysis report that has informed all of the projects of the Alliance.”

Ginny was an active person—before her health deteriorated, she loved to travel and play golf. She was a doting grandmother. Knowing her time was limited, why did she spend a great deal of it in Alliance committee meetings and serving on MBCN’s board?

Because she cared and she wanted to make a difference.

The same can be said of Amy Bonoff, Marcia Taylor and Rochelle Shoretz—all patients who served on Alliance committees and all of whom died in 2015.

Many people have influenced my advocacy. I try to learn from everyone and keep an open mind.  I never want to be static–in my beliefs or in my actions. I am determined to keep learning, to keep evolving.

Some observers may believe there is only room for one kind of advocacy—that one is forced to choose between being what AIDS chronicler John-Manuel Andriote terms “coat-and-tie” advocates and “street activists.

But as my experience and Adriote’s article make clear, that isn’t the case. Both are invaluable to each other.

“The two ‘sides’ were clearly essential,” says Andriote. “The street activists forced the media to focus on AIDS, using colorful and made-for-TV demonstrations, while the lobbyists helped write the laws delivering a lot of what the protesters were calling for. They all played vital roles.”

It’s also instructive to note that most advocacy groups evolve over time. On Sept. 13, 1990 ACT UP/San Francisco split into two chapters: ACT UP/Golden Gate, devoted to treatment, and ACT UP/San Francisco, which remained committed to broader social change beyond merely pushing medical science to find a cure for AIDS. In 1992 key members of ACT UP’s NYC Treatment and Data committee left to form the Treatment Action Group (TAG).

I think I have evolved, too. No more midnight poison pen letters!

Neither a single group nor any conglomeration can possibly address all facets of metastatic breast cancer. We need all the help we can get. We may not always agree. But we need look no further than the AIDS movement to see that keys groups often didn’t always share the same views or tactics in accomplishing their goals—but each had a vital role to play and none would achieved all that they did without the existence of the others.
We need each other. Let’s make it work.



Scenes from our 2012 Conference


Tagged ,