Author Archives: katherinembc

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.

 

HORMONE RECEPTOR POSITIVE NEWS

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.”

HER2 POSITIVE NEWS

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 NEWS 

“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 NOTES

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.

A PARTING THOUGHT

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. 

 

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Khrystne Haje, Metastatic Breast Cancer and a Convoluted Drug Development Story

                                                                        See People.com story here.

Actress Khrystne Haje was recently featured in a People.com article. The headline elicited much discussion among metastatic breast cancer patients. Written by Julie Mazziotta, the story can be found here: “Head of the Class’s Khrystne Haje Reveals She’s In Recovery from Stage IV Breast Cancer: ‘I Feel Fantastic.'”

Many Stage IV patients took exception to People.com describing the 48-year-old Haje as being “in recovery” and Haje saying “It’s all gone now! Now there’s nothing.”

Stage IV breast cancer is treatable but ultimately incurable. It is likely more correct to say Haje currently has no evidence of disease (NED) but there is no way of knowing the duration of her response. I certainly wish Haje the very best. She mentioned a drug I hadn’t heard of–I wanted to know more. But let’s start at the start.

Haje shared she was first diagnosed with invasive lobular breast cancer three years prior to her 2015 metastatic diagnosis. Invasive lobular breast cancer (ILC) accounts for 10 to 15% of all breast cancers. ILC is generally found in women in their 50s or older. It poses some imaging challenges–it can be hard to detect via mammography. (Actress Rita Wilson has early stage ILC.  Read more about LCIS here.)

For people with Stage IV disease, it’s important to know that ILC can have a different pattern of metastasis. In invasive ductal carncinoma, the common sites of metastatic disease are the lung, bones, liver and brain. However, in invasive lobular breast cancer, metastatic disease has been reported in those areas as well as GI tract, peritoneum, and retroperitoneum.

“I didn’t have cancer in my stomach,” Haje told Mazziotta. “But the radioactive PET scan showed that I had something by my liver, and something by my spleen, and something by my bowel. . . I had metastasized breast cancer.”

We don’t know what treatment Haje had prior to her metastatic diagnosis or her reasons for choosing a drug currently in the early stages of development.

What treatment did Haje have?  According to People.com, Haje has been given”the SM-88 treatment, which involved simply taking a pill and doing a subcutaneous injection once a day, every day. The treatment is non-toxic, with only minor side effects.” Mazziotta reports Haje “still takes the pills today, almost a year after she first started hearing that the growths were gone, and is hoping that the treatment will be approved by the FDA soon.”

There is nothing to suggest approval is imminent. To date, a Phase 1 trial has been conducted as well as some individual case studies. All told, it appears 25 people with breast cancer have received this drug. As with any drug in a Phase 1 trial,  much work remains to be done.   As many cancer patients know, it can take between 10 and 15 years to develop a drug, at a cost of about US$800 million. For every 5,000 compounds tested, it is estimated that only one will be approved for use in patients. A Phase 2 SM-88 clinical trial for breast cancer isn’t yet recruiting; a Phase 2 trial for prostate cancer patients is open.

Source: A Guide to Cancer Drug Development and Regulation

 

What is SM-88?  SM-88 apparently combines four drugs (three of which are FDA approved although not for breast cancer): phenytoin, methoxsalen, sirolimus as well as tyrosine isomers. Tyrosine isomers seem to be the secret sauce.  Here is Tyme CEO Steve Hoffman’s March 2017 patent filing on “Tyronsine derivatives and compositions comprising them.”

What is CEO Steve Hoffman’s background? According to biotech analyst David Bautz, Hoffman is an engineer who wanted to learn more about how electromagnetic radiation killed tumor cells.  Bautz further writes: “…tumor cells were viewed to be vulnerable due to the aberrant nature of their metabolism, and mechanisms defined in the literature were invoked both serially and in parallel to attack tumors using already developed agents. Also unusual was the conscious decision to eschew the use of any preclinical models to test the underlying assumptions in animals. Rather, based upon extensive reading and an effective understanding of the medical literature, a theoretical approach was developed to attack and kill tumor cells selectively while sparing normal cells; and this was then tested in people.”

What is the history of SM-88? In November 2011, Luminant Biosciences (the precursor company to Tyme) filed for approval of a clinical trial for SM-88 (then known as SMK) with the Institutional Review Board (IRB) of New York Downtown Hospital. The company enrolled 30 patients with advanced metastatic cancer in the single-center, open-label, proof-of-concept clinical trial between January and December 2012. As is generally the case for a Phase 1 trial, the patient population was comprised of patients who failed all available anti-cancer treatments and had the following cancer types: 14 had breast cancer, four had non-small cell lung cancer, three had pancreatic cancer, two had prostate cancer, and one patient had each of small cell lung cancer, hepatic cancer, tongue cancer, appendix cancer, thyroid cancer, colon cancer, and a cancer of unknown origin. Biotech analyst David Bautz reported that in an affidavit filed Feb 5, 2013 with the US Patent and Trademark Office, Jeanetta Stega, MD, PhD stated the following in regards to the 14 breast cancer patients who participated in the Phase 1 study:

Under an expanded access program, 57 individual case studies were also performed with the approval of New York-Presbyterian / Lower Manhattan Hospital IRB. Of these 57, 11 were breast cancer patients. Among the 11 breast cancer patients,  zero (0) had a complete response, four (4) had a partial response, three (3) had stable disease and four (4) had progressive disease. Source: December 29, 2016 Form 8-K.

All of the 30 patients in the Phase 1 trial had metastatic cancer and an expected survival of 3 to 6 months. All had either failed or refused all available treatment. Given these facts, I was surprised that 11 patients had only 1 prior systemic regimen. I would have anticipated more.

 

 

Who was the principal investigator on the Phase 1 study? Leonard Farber, MD, was the initial investigator. At the time, Dr. Farber was affiliated with New York Downtown Hospital (NYDH), a not-for-profit community hospital, serving lower Manhattan, affiliated with New York Presbyterian Hospital and Weill Cornell Medical Center. According to legal documents,  Dr. Farber applied for and received IRB approval for the study in November 2011. Prior to approval of the study, Farber asked Dr. Jeanetta  Stega for help in developing the protocol and patent application for the Luminant study. Dr. Stega, a research scientist  with NYDH participated as the principal investigator in numerous medical studies; was promoted to Vice President of Research; and became Chairperson of the Hospital’s Internal Review Board (IRB). (She recused herself from voting on Dr. Farber’s application.)

In 2012, Dr. Farber complained he was not receiving enough money from Luminant. He accused Stega of taking money from Luminant that he should have received, and resigned from the Luminant study. Dr. Stega then sought treatment for the study’ s patients from the NYDH and Luminant requested that NYDH take over the study.

 

What’s next for SM-88?

A Phase 1b/2 trial for prostate cancer is enrolling patients. A trial for pancreatic cancer is next. There are ongoing investigator initiated trials (IIT) at Mount Sinai, Mayo Clinic, Medical College of Wisconsin, University of  Rochester and Albert Einstein College of Medicine.

What did I learn? 

Things are seldom as simple as they may appear.  People.com is a great source of celebrity dish but not necessarily a credible source of cancer treatment news.  I gained new appreciation for Dr. George Sledge’s “Maxims for Cancer Researchers.

“Quantity has a quality all its own,” asserts Dr. Sledge. “The scientific literature is mostly crud. This is true both in the lab and the clinic. Lack of reproducibility is endemic. One of the major reasons for this is the curse of small numbers: cell line experiments that use only one cell line (rather like treating a single patient and expecting to discover a universal truth), animal experiments with a few lonely mice, clinical trials with suspicious ‘descriptive’ statistics. Small numbers studies are particularly prone to overcalling results, and we, lemming-like, follow them over the cliff in our ever-recurring credulity.”

Last year, I heard a presentation where a new combination therapy was said to have an 89 percent response rate. Translated into English this meant that, in a preliminary, unaudited analysis, eight of nine patients had shown initial signs of response. The next time I heard the study presented (more patients, longer follow-up, external review of results) the response rate had dropped to 54 percent. Still respectable, but not the second coming of the Salk vaccine. Quantity has a quality all of its own.–Dr. George Sledge, Maxims for Cancer Researchers

 

 

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Confronting Cancer Quackery

I fucking hate pseudoscience

Cancer quackery (along with charlatanism surrounding HIV/AIDs) has to be one of the most noxious of all pseudoscience-based enterprises and, perhaps it’s just my line of work, but I can’t help but feel that it’s on the rise. The reliably high prevalence of cancer represents immensely fertile ground for scammers, and “alternative” treatments for it are sought by millions, supporting a steady cash-flow in the direction of fakes, phoneys, and otherwise ignorant followers of charismatic nasties. As well as fostering a generalised distrust in science and burning holes in wallets, cancer pseudoscience often steers patients away from their one and only shot at survival.

The Internet is abuzz with “natural remedies” and “holistic” measures against cancer, and a quick trawl through some of the websites spouting them reveals that the nature and extent of the errors (and lies) upon which they are based are as varied as they are pernicious. However…

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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 Change.org 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.

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Scenes from our 2012 Conference

 

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11 Reasons the New York Jets Should Support Metastatic Breast Cancer for the NFL’s Crucial Catch

Some of the most devastating cancers, such as pancreatic and ovarian, have no early detection--there are no tests that will help you "catch it early."

Some of the most devastating cancers, such as pancreatic and ovarian, have no early detection–there are no tests that will help you “catch it early.”

 

The NFL will expand its October awareness efforts in 2017.  According to Sports Illustrated’s Peter King, the initiative will still be called “A Crucial Catch,” but teams now have a say in the cause they’ll champion for about 18 percent of their schedule. “They can still choose breast cancer, or another detectable, screenable cancer such as prostate or colorectal cancer—or one to which a player or coach has a personal tie,” writes King. ” Teams can also support more than one cancer cause per season, and they can change their choice(s) from one season to the next.”

I think this is a sensible change–all cancers are deserving of our notice and support. I do think there may be some backlash on the “detectable and screenable” clause. Some of the most devastating cancers, such as pancreatic and ovarian, have no early detection–there are no tests that will help you “catch it early.”

As Sid Mukherjee noted in the Emperor of All Maladies,  the progress made in breast cancer vs. that of pancreatic cancer is pretty depressing. The prognosis for metastatic pancreatic cancer hasn’t changed more than a few months over the past 2,500 years.

I wish more people knew that. If only there was a was national platform for sharing such vital information.

And, as much as I appreciate the attention the NFL has brought to breast cancer, the “Crucial Catch” moniker makes no allowance for those whom early detection didn’t help. Most of the estimated 155,000 US people currently living with metastatic breast cancer were treated for early-stage breast cancer.

Despite the “Crucial Catch,” about 20 to 30 percent of these patients experienced a metastatic breast cancer recurrence. Many people are surprised to find out we don’t actually have a cure  for breast cancer. Until a person dies of something else, he or she can never be sure their cancer won’t come back–this can happen a few months or even many years later and we don’t know why.

Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life. MBC or Stage IV breast cancer means the cancer has spread beyond the breast (typically to bone, liver, lungs or brain or some combination therein) and is no longer curable. Treatment is life long–median survival is 2.5 to 3 years. Maybe that doesn’t make for witty sideline banter or an exciting halftime show, but people should know that while early detection is important and does help some people, it doesn’t help everyone and it offers no guarantees.

Many NFL stars have lost loved ones to metastatic breast cancer: Larry Fitzgerald, DeAngelo Williams and Brian Griese are just a few. In DeAngelo Williams’ case, he never knew until long after the fact that his mom had metastatic breast cancer. Many, many people have never heard the word “metastatic,” it’s a hospital word, not something we use in day-to-day conversation.

If only there were a national platform to help people understand breast cancer is not one disease as well as the difference between early and Stage IV breast cancer and the risk for metastatic recurrence.

Because breast cancer is detectable and screenable, it is eligible for the NFL’s Crucial Catch initiative. I’d like to suggest that the New York Jets embrace Metastatic Breast Cancer as its featured cause. (I am a board member for the Metastatic Breast Cancer Network and will be happy to assist! Send me my t-shirt and I will be there!)

Here are 11 reasons why Stage IV breast cancer is a natural pairing with the New York Jets:

  1. J-E-T-S Cheer is Easily Modified to M-E-T-S. Patients with metastatic breast cancer use “mets” for short. The Jets could save thousands of dollars in printing costs by simply changing the “J” to “M”.
  2.  Few Know Who We Are Either. Can you name a Jets player off the top of your head? Loyal fans probably can, but the rest of us will have to think hard. Now name a celebrity with metastatic breast cancer. Most people will think of people with early-stage disease: Sheryl Crowe, Melissa Etheridge and so on. These women had the curable form of the disease–our reality is a lot different. (Shannen Doherty hasn’t stated what stage cancer she has–some reports have indicated she has Stage 3 breast cancer. Stage 3 breast cancer would have a higher risk of recurrence, but this is not metastatic disease.) So Jets players–we know what it is like when everyone knows who Tom Brady or Dak Prescott is but have no clue who you are, let alone that you exist at all.
  3. We Didn’t See This Coming. Matt Forte, the former Chicago Bear, is a great athlete and an even better human being. Although he is well compensated, what did he ever do to deserve joining the hapless Jets? Same thing with Stage IV breast cancer–one week we were healthy people working, raising families, and yes, going to football games. And then WHAM! We found out we have an incurable disease–but we did nothing wrong! We did NOT bring this upon ourselves.
  4. Support for Metastatic Breast Cancer is Pretty Bad, Too. Tickets for the Jets-Colts Monday Night Football contest were going for $5 a pop. Funding for metastatic breast cancer is pretty anemic, too. MBC-focused research made up only 7% of the $15-billion invested in breast cancer research from 2000 to 2013 by government and nonprofit funders in North America and the United Kingdom.  Remember: No one dies from breast cancer that remains in the breast. Stage IV breast cancer is responsible for 90 percent of the morbidity and mortality from the disease, yet gets less than 7% of the billions in research funds. Are you kidding me? We feel your pain, Jets.
  5. We Can Help Them Fill Seats…Sort of. MetLife Stadium has a capacity of 82,566. These days it must be more than half empty. Note that every year, 40,000 US people die from metastatic breast cancer. As long as no one will be sitting in at least 40,000 seats for a Jets game, why not ask the estimated 155,000 US people currently living with the disease to consider sponsoring a seat for $5? For $5 they could put the name of a loved one they have lost–or even their own name–on a placard to be displayed on the seat.  I would totally do that. It’s a win-win for all!
  6. We Can Compare Notes on MRIs and Other Imaging Tests. When you have Stage IV breast cancer, your oncologist determines if your current treatment is working by sending you for scans, usually every 3 months. Typically this involves a bone, CT and PET scan; MRIs are also used. Scans are immensely anxiety provoking–and in the case of MRIs, potentially claustrophobia inducing. But when you have these things every 90 days, you pick up a few pro tips. We are happy to share our insights.
  7. We Rely on Our Team. There’s no “i” in team and no “i” in cancer, either. (Although if you really want to get technical, there is a “me” in metastatic breast cancer and also an “i”.) But just like the Jets, no matter how bad things get, we are counting on our team of family, friends, nurses, oncologists, specialists and support staff. Huddle up!
  8. We Know What It’s Like to Get Punched in the Face. Although we literally haven’t gotten socked in the jaw like Geno Smith, we know what is like to have an incredible series of ups and downs. One minute you are riding high with your future endlessly unfurling before you and the next you are knocked off your feet and dealing with ongoing uncertainties. And, at times, we’d like to punch a few people ourselves!
  9. There is No Off Season. In the modern NFL, players must train year-round. Similarly, when you have Stage IV breast cancer, treatment is for life. When you have metastatic breast cancer, Breast Cancer Awareness Month is every month.
  10. Not Much Has Changed for Us in the Past 20 Years Either. It’s actually been almost 40 years since the Jets won a Super Bowl. But the yearly number of deaths from breast cancer has remained essentially unchanged for the past 20 years. We’re finding more cancer, we’re just not curing more of it.
  11. We Are All Lottery Hopefuls. I am sure the Jets hope if  they stick around long enough, better coaches and players will materialize. That is also our great hope with Stage IV breast cancer–if only we can get more time from our current treatments, maybe some research break throughs will happen. Dr. Don Dizon call this P.R.O.: We try to be Pragmatic, Realistic and Optimistic. Hang in there, Jets!

–Katherine O’Brien, living with Stage IV breast cancer since 2009

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Eric P. Winer, MD, Offers Informative, Wide Ranging and Deeply Moving Reflection on 25 Years of Breast Cancer Developments at SABCS 2016

[Reblogged from here.]

eric-winer

 SABCS should probably just cancel the 2017 William L. McGuire lecture right now because Dr.  Eric P. Winer is a very tough act to follow.

 

Dana Farber’s Dr. Winer gave an eloquent and ultimately deeply personal overview of the shifting landscape of breast cancer treatment over the past 25 years at the 2016 San Antonio Breast Cancer Symposium (SABCS). Dr. Winer’s presentation, “The Long and Winding Road: Glancing Back But Moving Forward,” was this year’s William L. McGuire Memorial Lecture.

Dr. Winer received a standing ovation.This lecture was remarkable on many levels. Some people in the audience were moved to tears–including both MBCN President Shirley Mertz and me.

For those who might not know, Charles A. Coltman, Jr., MD and  William L. McGuire, MD first conducted what evolved into SABCS in 1977. McGuire died in 1999.

Dr. Winer recalled the early days of SABCS which had about 150 attendees vs. the current event which draws upwards of 7,000 clinicians from around the world, 150 journalists, hundreds of companies allied to the field and many patient advocates like Shirley and me.

Dr. Winer said that in 1999, breast cancer was essentially classified by stage–subtypes as we know them today (ER/PR+ HER2- etc.) had yet to be identified. People were generally offered extensive surgery. Treatments were even more limited int the metastatic setting–it was the era of bone marrow transplants and attendant severe toxicities. Patients were scared and often stigmatized because of their disease. Advocacy was in its infancy.

Over the past 25 years, surgeons are doing less. Late radiation toxicity has been reduced. Treatments for HER2 positive disease have been a game-changer. Most importantly, we now know breast cancer is a family of diseases–many different subtypes have been identified.

Dr. Winer identified three key challenges:

  • Therapeutic resistance
  • Over treatment and
  • Health equities.

Dr. Winer characterized the latter as a “major problem worldwide; the cause of countless unnecessary deaths.” Race, poverty, limited education, lack of insurance and less than optimum care all contribute to dismal outcomes. There are also age-related disparities…those under 30 and over 80 generally do worse, with people age 80 or older accounting for the highest breast cancer mortality.

After thanking all of his Dana Farber colleagues, Dr. Winer then shared his own story. He noted that he will be 60 years old tomorrow and until now, he had never spoken about having hemophilia.

As a child he was frequently hospitalized and, following the  wisdom of the day, forced to eat a daily helping of peanut butter which was then thought to help blood coagulation. Dr. Winer froze the peanut butter to mask its taste. His arm was frequently bandaged and he was often asked if had broken it.

At the time, someone born with hemophilia could expect to live to age 20.

But when Dr. Winer turned 13, factor products revolutionized hemophilia care because they could be stored at home, making treatment easily accessible. People with hemophilia could now self-infuse factor products, drastically reducing the need for hospital visits. Work, travel, and other activities were now carried out with greater ease. “I became a normal teen,” Dr. Winer recalled.

Inspired by one of the most famous people with hemophilia in history,  Tsarevich Alexei, son of Nicholas, the Tsar of Russia , Dr. Winer studied Russian history and learned the language.

In 1979, he started medical school. “You’re fine,” a fellow med student told him in 1980.

In 1983, there were three known cases of AIDS in hemophiliacs. Dr. Winer recalled thinking, “Damn, we’re all infected.”

From the late 1970s to the mid-1980s, about half of all people with hemophilia became infected with HIV after using contaminated blood products. An estimated 90% of those with severe hemophilia were infected with HIV.

Dr. Winer shared his HIV odyssey as it played out against personal milestones. In 1985 and 1986, he and his wife, Nancy, had their first two children, both boys. Their daughter was born in 1989, the same year he began experiencing night sweats and other symptoms.

“My dentist fired me,” Dr. Winer recalled. “I worried I wouldn’t be able to work. I worried my kids would be ostracized.”

Unlike Magic Johnson who could afford to retire, Dr. Winer needed and wanted to continue to work and he did, albeit with the challenge of ongoing treatments and all of the uncertainties that accompanied them. His disease included what Dr. Winer called “a few more hurdles.”

The hepatitis C virus (HCV) infection was also transmitted through contaminated factor products, pooled from the blood of hundreds of thousands of donors. Dr. Winer continued to work during his Hep C treatment. “What’s wrong with him?” was a frequent question during that time. In 2003, he dealt with portal hypertension and he needed a vascular shunt in 2008.

“For the past eight years, all has been well,” he reported.

From his own experience, Dr. Winer learned that having a serious medical condition:

  • Doesn’t always reset priorities.
  • Doesn’t impart a universal understanding of every other patient/disease.
  • Doesn’t make you a better person.

“Everyone has something,” Dr. Winer said. “Few people live [in a perfect world] with neat white houses surrounded by picket fences.”

He went on to offer attendees six takeaways:

  • Coping matters–doctors need to help patients cope.
  • People are more than their illnesses.
  • Stigma based on illness is devastating.
  • There are silver linings in all experiences.
  • We need to carefully consider treatment toxicities.
  • There is always hope as science marches forward.

Dr. Winer thanked his wife, his children and their significant others and the thousands of people he has cared for. “We are given this door to walk into people’s lives,” he said.

When pondering why he is still alive, Dr. Winer credited ongoing scientific advances and access to care. He also credited his parents, Rhoda and Richard Winer. “They told me some people are born with blue eyes, some with brown eyes and some with hemophilia, so get on with your life.”

I will never again eat a peanut butter sandwich without thinking of Dr. Eric P. Winer.

I can’t express how much this lecture inspired and moved me.  I wish Dr. Winer a very happy 60th birthday and thank him for sharing his amazing gifts with all of us and showing us how to get on with life.

 

—Katherine O’Brien

Dr Winer summarized his lecture here for the ASCO Post: https://vimeo.com/195039402

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Social Media and Metastatic Breast Cancer Grief: Some Thoughts from a Stage IV Patient

This entry is part of the 2016 Hear My Voice #Stage4Lifer campaign. Spread the word, read the blogs on LBBC.org and add your own contributions.

Whenever I come across a new metastatic breast cancer blogger I am simultaneously excited and apprehensive. I am glad when another voice joins our MBC online chorus but always fearful if the last post is a few months old: Is this person doing ok? Is he/she still alive?

I was diagnosed with metastatic breast cancer in 2009–most of the veteran MBC bloggers–the women who preceded and inspired me–have since died. Every once in a while, I will come across their blogs when Googling some breast cancer topic. Occasionally, I will follow a link to their sites—I always come away feeling sad–and nostalgic for better days. It’s  hard to go back and read the hopeful reports on a new treatment–knowing ultimately how things turned out.

ginny22

A video for my friend Ginny

Seven years ago, Facebook was still in its infancy–there were no closed groups. Twitter was only three years old and not in widespread use. If you wanted to connect with other Stage IV MBC patients online, you could go to  discussion board like BCMets.org, BreastCancer.org or Inspire.com. In the case of the latter two, people used screen names. This anonymity was helpful for confessing one’s deepest fears or concerns, but also unsettling. If you followed “LuvMyCatz,” for example, you would come to feel like you really knew her. But if  LuvMyCatz died, there wasn’t the same closure  you would have with an in-person friend–going to a wake or funeral, sending a condolence card and so on. There was also the very real possibility LuvMyCatz would stop posting you and you would never actually know if she had died or even her real name.

Losing non-social media friends is hard, too. For several years, I enjoyed some periods of stability. When your disease is fairly quiet–at least for the moment–what do you say to a friend who is actively dying?  For months and even years, we could commiserate on a similar level…my oncologist does things this away, I’ve got scans coming up, do you have any advice for these side effects, etc.

When people are dying, they have crossed into a new and scary territory. Your life is going on (at least for now) and theirs is not. I have never felt more helpless.

Fear and guilt are also pervasive. There is no denying it–what is happening to that person will eventually happen to me. Perhaps my final days will play out differently, but the ending is invariable and inevitable.  That person I laughed with, who had a lovely family, a rich array of non-cancer activities and interests and who got excellent care from top doctors, is now dying. And so will I.

These are thoughts I generally shove far from my mind. Like Scarlett O’Hara, I’ll think about it tomorrow. That’s the subject of another, yet to be written post…

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By Slyvan Kamens & Rabbi Jack Riemer

 

But what can we do to comfort ourselves and the family and friends when someone dies? That is a highly personal question–everyone must find their own way and do what is most comfortable and best for them.

I think it is important to tell people NOW (patients and non-patients alike) today that we love them. Why not send a text or card now, telling them so?  Or you could just make a phone call. Or let them know in person.

When someone is actively dying, they may want only a few visitors (or maybe only family). They might not be up talking on the phone. Don’t wait until someone is very ill to let them know you care–do it now, while it is easier for all. (See: “We Live on the Internet, We Die Alone.“)

For me, writing is cathartic. Writing about friends–and people who inspired me–helps me deal with my grief. I think it is important to remember people–our memories and positive thoughts are surely of comfort to the deceased person’s family and friends. But not all writing has to be public or even  shared. If you have lost a friend or loved one, consider writing that person a letter. It will help you come to grips with your feelings–and hopefully help you process your grief.

Barbara Karnes, author of the “Gone from My Sight” booklet, shares some coping tips and practical ideas here and here.

I’ve also made videos to remember those we’ve lost, like this one, this one and this one.

This year has been particular difficult for me…my friends  Ginny Knackmuhs, Adrian B. McClenney,  Jill Cohen, Sarita Joy Jordan, Jody Schoger, Holley Kitchen and far too many others have died.

I read about Randi Rosenberg, co-founder of the Young Survival Coalition, (1966-2010) in a CURE magazine article. Influential blogger Lisa Boncek Adams died in March 2015. Tami Boehmer, a blogger I attended several events with, died in November 2015.

It is hard to think of all the friends I have lost over the past seven years. Samantha Pritchett was a discussion board friend–one of the first people I knew after my own diagnosis to die from the disease. Gigi Robin was another BC.org friend. Lori Baur (1970-2011) was someone I knew from her Inspire posts.  Dana Robinson was a fellow patient introducer at the 2011 MBCN National Conference. Joani Gudeman was a good friend and fellow MBCN board member. Susan Davis was a former MBCN board member and a true inspiration. To this day, memories of MBCN’s Ellen Moskowitz  and Suzanne Hebert push me to do more. I often think of Kathy Coursey-Boes–her daughter, Addie, is about the same age I was when my own mom died from inflammatory MBC in 1983.

I also think alot about the bloggers who preceded me:Canadian blogger Daria Maluta (1961-2011) was among the first MBC blogs I read. Then there was Rachel Cheetham MoroRivkA “with a Capital ‘A’” Matitya, Donna “Dances with Pens” Peach, Jenny Williams, Susan Niebur, Bridget Spence, Jeanne SatherLisa Broberg Quintana aka Michigoose and so many others.

I hope they know how much they helped me–and other people.

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One final story: This is me with Leah Stein Leslie Besen who died a couple of years ago. Leah and I met online at BC.org and later  in person in Jerusalem when I was there for a business conference. It was wonderful to meet her–she was waiting for my friend and me outside of the designated restaurant as the snow(!) was falling. She told us where to get the sherut and where to go from there and must have known we were not strong on directions…

She was very tiny–not much taller than the rolled up umbrella she was carrying. I had never eaten in a kosher restaurant and she explained about the meat side and the dairy side. We talked about her making aliyah and how things had changed over the years–how getting washing machine was difficult back in the day. She was very proud of her family–she took home our leftovers to share with them. Little Leah helped so many people–may her memory be for a blessing.

Leah and all of my friends will live on in the cherished memories of all who loved them. Each created a unique legacy–via their words and actions–that can never be diminished or forgotten.

If you were Irish and grew up in 1970s, you probably had a few Clancy Brothers albums. My family did, and that is how I came to know this traditional song:

Of all the comrades that e’er I had
They’re sorry for my going away
And all the sweethearts that e’er I had
They’d wish me one more day to stay
But since it fell unto my lot
That I should rise and you should not
I gently rise and softly call
Good night and joy be to you all.

Note: If you are a patient living with metastatic breast cancer, please consider filling out this Life Review Letter. It is an easy-t0-fill out form that makes it easy to share your thoughts with your family.

Read more Stage4Lifer stories and full campaign details here.

 

Leah's beautiful hands. She wrote the name of the light rail stop in Hebrew so we would know where to get off: "Tachana Merkazit."

Leah wrote the name of the light rail stop in Hebrew so we would know where to get off: “Tachana Merkazit”

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Seven Years of Metastatic Breast Cancer: My Stage IV Story

HOW LONG HAVE YOU BEEN LIVING WITH MBC?  Seven years. I was diagnosed at age 43 in August 2009. I will be 51 at the end of 2016.

 

DID YOU HAVE A FAMILY HISTORY? Yes. My mom died from inflammatory metastatic breast cancer at age 53. Anyone with a family history should talk to their doctor to determine an appropriate screening schedule.

 

kobnueverymonthWHAT OTHER RISK FACTORS DID YOU HAVE? Well, the biggest one would be being a woman…followed by getting older… I am childless, meaning I have had a longer exposure to estrogen. Also, I am of Ashkenazi Jewish descent. About 10 percent of Ashkenazi Jewish women diagnosed with breast cancer in the U.S. have a BRCA1/2 mutation. I do not have either of these mutations, however.

Scientists believe that certain disorders became more common among Ashkenazi Jews because of at least two processes: the founder effect and genetic drift. (Read on for an explanation.)

 

IS YOUR CANCER HEREDITARY? No. Despite my family history, genetic testing showed I am NOT a carrier of the BRCA1 or BRCA2 mutations. Being diagnosed with cancer prior to age 40 can signify a hereditary connection, but as of 2016, the answer for me is “No.” People should know that for most cancers (breast are otherwise) are not hereditary—only about 10% fall into that category. Most cancer is considered “sporadic” meaning it just happens.

 

DID YOU HAVE EARLY STAGE BREAST CANCER THAT CAME BACK? No. I was metastatic from first diagnosis, aka a de novo presentation. This puts me in the minority–about 94% of those with Stage IV breast cancer were previously treated for early stage breast cancer. Given my mom’s history, our Ashkenazi Jewish background and other factors (not having children, etc.), I had a medium to high risk for developing breast cancer. I did not expect to be dealing with it in my 40s. We often think of breast cancer as an old lady’s disease–probably because the median age for breast cancer in the US is 61, but younger people (and men) can get it.

 

WHAT SUBTYPE IS YOUR CANCER? I have the most common subtype: ER/PR positive and HER2 negative. About 80% of people with breast cancer have this subtype. It is sometimes referred to as “estrogen-receptor positive disease” meaning that the cancer uses estrogen to grow. The other two common subtypes are generally referred to as HER2 positive and triple negative. Someone with HER2 positive breast cancer can used a “targeted” therapy; unfortunately with the triple negative subtype there is nothing to target and chemotherapy is generally the only treatment option available.

 

WHAT TREATMENTS HAVE YOU HAD? People are sometimes surprised to learn that although I have lived with Stage IV breast cancer, I haven’t had IV chemo…yet. Most people are familiar with early-stage breast cancer where you might have surgery, perhaps radiation and then, if needed, a limited course of chemotherapy.

Stage IV breast cancer means treatment for life. Once the cancer cells escape the breast and spreads to a distant organ, there is no way to remove all of it. The Metastatic Breast Cancer Alliance uses a dandelion analogy to explain this. If you can pull a yellow dandelion up, roots and all, you have eliminated that dandelion from your lawn. If the dandelion has gone to seed, it doesn’t matter if you dug up the entire plant—those seeds have escaped. You might not see them sprout right away, but sooner or later you will.

 

dandelion

Stage IV breast cancer is a marathon…not a sprint. Where possible, patients start with the least toxic option first. Not all patients will get the same mileage out of a given drug. It might work for months, maybe years (if you are very lucky) or not at all (if you’re unlucky). Eventually drug resistance sets in and a drug stops working. Patients must then go on to their next treatment—eventually most will run out of treatments.

Here are the drugs I have had to date: Tamoxifen (2009 to 2011); Femara (2012 to 2014); Faslodex (Jan 2015 to April 2015); Afinitor/Exemestane (May 2015 to August 2015). November 2015 to present: Xeldoa.  The last two drugs are oral chemo drugs. IV chemo is likely next, but hopefully not soon. Because my cancer is estrogren-driven, I had ovarian suppression shots from 2009 to May 2012 and eventually an oophorectomy. I also get a quarterly bone boosting infusion.

Surgery is not standard of care for someone with Stage IV disease but in some cases there is thought to be a benefit. I had a unilateral mastectomy followed by about a month of radiation in 2010.

kobnuwrigleyblgHOW OFTEN DO YOU SEE YOUR ONCOLOGIST? I see my oncologist monthly. If I were on IV chemo, I would see him more often. Every three to four months my oncologist sends me for CT/PET and bone scan. These test determine if my treatment is working—these tests make most MBC patients anxious—patients frequently refer to “Scansciety.” If the cancer stayed the same (nothing bigger or smaller) that means I am “stable” and that is a good thing. Having No Evidence of Disease (NED) is even better. Progression is the worst news a patients can get—it means their disease has spread and they must change treatments. Unfortunately, there is no guarantee how long one may remain stable or NED—in the majority of cases, eventually the disease does spread.

 

ANY LONGEVITY SECRETS? No. I am just “lucky.” I started out with a low-volume of bone-only disease. My disease has had a fairly slow tempo to date. I can’t take credit for those things–I was just fortunate my cancer responded to the drugs. I now have extensive bone mets  (again, I am glad to say they haven’t caused me pain). At the end of 2015, I learned I have liver mets. So far, I  have been fortunate to remain symptom-free and a good quality of life. I know this will change—so I try to live in the present. I don’t have superior doctors, more powerful drugs or a better attitude than any other patient. I just was fortunate at the cellular level. As oncologist George Sledge says, “Biology is gloriously messy.”

 

ANYTHING TO ADD? We are all statistics of one. My experience is just that–my experience.

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The Biggest Challenges Facing Metastatic Breast Cancer Research

Kudos to Julia Belluz, Brad Plumer, and Brian Resnick for their wonderful July 2016 Vox article, “The 7 Biggest Problems Facing Scientists According to 270 Scientists.” As one of my nephews would say, “Nailed it!”

The authors surveyed  270 scientists all over the world, including graduate students, senior professors, laboratory heads, and Fields Medalists. In a nutshell, they learned  that scientists’ success often isn’t measured by the quality of their questions or the rigor of their methods. It’s instead measured by how much grant money they win, the number of studies they publish, and how they spin their findings to appeal to the public.

Here are some of the seven points that really resonated with me, a woman living with Stage IV breast cancer who is relying on research to help me–or failing that–my family, friends and well, everyone. Please note that these points as I am relaying them are in reverse order of importance.

WHERE ARE THE CELEBRITY MOLECULAR BIOLOGISTS? Point No. 6  hit home for me: Science is Poorly Communicated to the Public. “If I could change one thing about science, I would change the way it is communicated to the public by scientists, by journalists, and by celebrities,” writes Clare Malone, a postdoctoral researcher in a cancer genetics lab at Brigham and Women’s Hospital.

Amen! The general public has no idea that breast cancer represents something that went wrong at the cellular level. It is not a punishment for eating too much sugar or too little kale. It is not God’s way of sending you a wake-up call. It means that something has gone wrong with some of your 30 trillion cells and they are growing out of control. The onset and progression of cancer is due to multiple dysregulated proteins and cellular pathways.

But according to musician and amateur molecular biologist Melissa Etheridge, “Cancer is just a symptom of our bodies being out of balance and the cure is to understand health. It’s to understand our bodies and our spirits—our souls—better. That’s the cure.”

 Melissa Etheridge was diagnosed with Stage 2 breast cancer in 2004. She had a lumpectomy, 15 lymph nodes removed and then  five rounds of chemotherapy and radiation. Apparently this is the basis of her expertise.

In her spare time, Etheridge dabbles in genetics, too.  In a 2015 she told AARP: “I have the BRCA2 gene but don’t encourage women to get tested. Genes can be turned on and off. I turned my gene on with my very poor diet.”

The article drew the ire of many, including a non-profit that advocates for those with hereditary breast and ovarian cancers. “Everyone is born with two copies of both the BRCA1 and BRCA2 genes, which play essential roles in preventing cancer,” wrote Sue Friedman, executive director and founder of FORCE. ” Individuals born with a change or mutation in one of these genes bear a higher lifetime risk of breast, ovarian, and other cancers than those without a mutation not because the gene is ‘turned on’ but because they lack a working copy of one of the genes involved in preventing cancer development.

Attention journalists–some celebrities are knowledgeable about their conditions–but please give some thought as to how these influential figures’ words and actions will be received. Angela Jolie, for example, seems well-informed about why her personal family history made a prophylactic mastectomy and oophorectomy a logical choice–for HER. However, please take the time to point out that MOST cancer is NOT hereditary–90 percent of ALL cancers  are considered sporadic, meaning they just happen. So in other words, the vast majority of us–in looks or genes–are not like Angela Jolie at all.

Another plea: Please remember those who won’t “kick cancer’s ass.” It’s not like we did something wrong or we didn’t try hard enough or we blew off doctors’ appointments. We are living with a chronic, progressive and ultimately fatal disease. Don’t treat us like losers or pretend we don’t exist. Think outside your pink ribbon expectations.  Breast cancer is second only to heart disease and lung cancer as the leading cause of death in women. Where are your lung cancer special sections? Pancreatic cancer is a devastating diagnosis–there is no early detection for this disease. Like ovarian cancer, it is a silent killer–where are those stories?

As someone living with the fatal form of breast cancer, I am so tired of self-appointed experts–celebrity and other wise–expounding upon a disease that they know little about. I am a member of United Airline’s MileagePlus program. I have been a passenger on many flights.  Amazingly, I have no insights on the science behind keeping a plane aloft, how to fly a plane or the latest pilot union grievances. Journalists: When interviewing a celebrity, please ask yourself, “What makes this person an expert? What is their understanding of basic human biology let alone the disease in question?”

MUST BE THE MONEY–the authors noted that US academic researchers need outside grants to pay for their salaries, assistants, and lab costs.  University funding is paltry–many faculty are expected to cover at least 75 percent of their salaries with grant money. Grants typically expire after three years–far too short a time to supply the kind of research needed for meaningful results in studying metastatic breast cancer. Research can take decades.

Our federal government is the largest source of cancer research funding and as Vox reports, “that pool of money has been plateauing for years, while young scientists enter the workforce at a faster rate than older scientists retire.” You can bash all the breast cancer non-profits all you want for funding more “awareness” than research. But where are the protests, the outrage over the federal government slashing research funding? The Moonshot is all well and good, but it can’t eradicate YEARS of federal penny-pinching and indifference when it comes to research. As Belluz, Plumer and Resnick observe:

Take the National Institutes of Health, a major funding source. Its budget rose at a fast clip through the 1990s, stalled in the 2000s, and then dipped with sequestration budget cuts in 2013. All the while, rising costs for conducting science meant that each NIH dollar purchased less and less. Last year, Congress approved the biggest NIH spending hike in a decade. But it won’t erase the shortfall.

The consequences are striking: In 2000, more than 30 percent of NIH grant applications got approved. Today, it’s closer to 17 percent. “It’s because of what’s happened in the last 12 years that young scientists in particular are feeling such a squeeze,” NIH Director Francis Collins said at the Milken Global Conference in May.

 James Watson was 25 years old when he co-discovered the double helix structure of DNA in 1953. Watson benefited greatly from the work and mentorship of older colleagues. Where are the James Watsons, Frances Cricks and Rosalind Franklins of 2016? Sadly, they are probably going into more lucrative fields–and they probably aren’t staying the US, either.

There is actually a non-partisan group dedicated to  “seeking the immediate restoration of funding for NIH followed by steady, predictable budget support in the future to enhance lifesaving research for patients around the world.” Medical research in the United States is in crisis according to ACT for NIH. “Adjusted for inflation, NIH receives nearly 19 percent less funding than it did in 2003. Because of this decrease in funding, NIH must reject research proposals that could lead to future discoveries of cures and treatments for cancer, Alzheimer’s, heart disease, stroke, diabetes, and other diseases. Our brightest young scientists are turning to other careers, and  other countries now threaten our global leadership in biomedical research.”

Again, where is the groundswell of outrage?

Global SpendingPUBLISH OR PERISH–Researchers are under enormous pressure to publish–unfortunately, the need to amass credentials can sometimes lead to the publication for the sake of publication–we end up with white-bread-and-mayonaisse studies that will ultimately help no one–except the authors’ careers. Metastatic breast cancer research creeps along at a tortoise-like pace–meanwhile these MBC researchers are being lapped by hares, eager to advance their careers. Sometimes researchers–perhaps even unconsciously–may create studies that are heavy on hype but slim on actual meaningful results. Says Vox:

The consequences are staggering. An estimated $200 billion — or the equivalent of 85 percent of global spending on research — is routinely wasted on poorly designed and redundant studies, according to meta-researchers who have analyzed inefficiencies in research. We know that as much as 30 percent of the most influential original medical research papers later turn out to be wrong or exaggerated.

The Vox article does not specifically address metastatic breast cancer research funding. But the Metastatic Breast Cancer Alliance (MBCA) has identified the following roadblocks to MBC research:

 Funding

  • MBC researc is  underfunded. MBC-focused research made up only 7% of the $15-billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. Specific scientific areas are understudied. The field of MBC research is relatively small. 
  • Overall cancer research is also underfunded (0.1% of the Federal budget.) Other areas receive more funding including the military, farm subsidies and education.

Matched Tissue Samples

  • To advance MBC research, better access to tissue is needed, including the primary tumor and interval blood samples collected and banked between the primary and development of the recurrent metastatic tumor.
  • MBC tissue from different populations needs to be studied (e.g., MBC in younger, premenopausal women vs. MBC in older women).

Model Systems

  • The previously available laboratory models for MBC research were discouraging but in 2013 and 2014, several laboratories have demonstrated interesting MBC models.
  • MBC models need to be validated and standardized across laboratories.

Academic-Initiated Clinical Trials

  • Academics have not focused enough on MBC (in basic research, clinical trials or cooperative groups), although focus is rapidly shifting to MBC as a priority
  • MBC research is complicated, costly and time-consuming (e.g., early breast cancer studies in animals can be two or three months; MBC animal studies can take up to 9 months to run a single set of animal experiments).
  • Lack of academic involvement has resulted in MBC trials being led by the pharmaceutical industry and business interests, including correlative science studies.

Epidemiology

  • We need to better understand the epidemiology of MBC. How many patients have a recurrence? How many of these represent a metastatic recurrence? What are their treatments and responses? How long do they survive? We don’t know because our national cancer registry (SEER) does not track metastatic breast cancer recurrence–we only have incidence, initial treatment and mortality data. Very few people present with MBC as I did (10% or less). Unfortunately, this isn’t the  first breast cancer rodeo for most people with a Stage IV diagnosis. But we don’t have recurrence statistics. You cannot manage what you do not measure.

 

I was diagnosed with MBC in 2009. Over that time, US cancer research funding

I was diagnosed with MBC in 2009. Over that time, US  cancer research funding dropped by about 20 percent. Come on! We’re counting on you, Congress! Give NIH the support it needs!

I am proud to be a board member for the Metastatic Breast Cancer Network (MBNC). We are a founding member of  the Metastatic Breast Cancer Alliance (MBCA). The 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 more than 40 of the leading cancer charities, advocacy groups and individuals and pharmaceutical industry partners represented. The Alliance is working to address all of the above questions. This work is hardly glamorous–there are many meetings, conference calls, committee work and countless hours spent writing and reviewing documents and other tasks. Most members of the Alliance are busy with their regular job duties–as someone living with the disease, I am beyond grateful for their efforts. As you can tell from the Vox article, we have our work cut out for us.  It’s not easy, but we are making a difference and will continue to do so!

 

 

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Do It For the Love Foundation: A Story About Me, Michael Franti and Bruce Springsteen

 

 

Thank you Michael and Sara Agah Franti and Do It for the Love Foundation!  Last night I saw Bruce Springsteen and the E Street Band–something I haven’t done in about 25 years and something I would likely not have done had you not provided me tickets. You did indeed inspire joy, hope and lasting celebratory memories. Thank you so much.

I am a Michael Franti & Spearhead fan. I think I first heard his songs on YouTube, when he sang with the PS 22 chorus in NYC. I have shared “I’m Alive” , “Life is Better With You”  and “Say Hey (I Love You)” with many friends–the joy and love shine through these performances. As Michael explained to his friends at PS 22, he grew up singing in church–his mother was the pianist, organist and choir director. He didn’t enjoy it (“the songs were really boring”) and often just mouthed the words. He started his own band in high school but his real enthusiasm, in those days, was playing basketball. Basketball brought him to the University of San Francisco where his dorm room was directly above the campus radio station and pretty much 24/7 bass lines thumping away. That inspired Michael to learn the bass and eventually start writing songs of his own.

In April  2013,  Steve Dezember, an ALS patient, contacted Franti to request tickets. During the show, Michael invited Steven and his wife, Hope, onstage. Although Steve was barely able to move his body, he asked Hope to lift him out of his wheelchair. Wrapped in each other’s arms, they danced on stage in front of 20,000 fellow music fans.

pKPW0qFR_400x400That experience prompted Michael and his wife, Sara Agah Franti, an ER nurse, to create the Do It for the Love Foundation. The foundation grants live concert music wishes to people living with life-threatening illnesses, children with severe challenges and wounded veterans. I heard about the group from two Stage IV metastatic breast cancer friends who had seen Bon Jovi and Paul McCartney respectively.

I was a little skeptical–what would I have to do? Would there be a lot of paper work? The application process was streamlined and took only a few minutes. I assumed it would take months to hear anything–if I heard anything at all. So I was SHOCKED when hours later, Joyce Han, outreach assistant, emailed me to ask what show I hoped to attend.

Michael Franti and Spearhead are playing the Pacific Northwest and then head to Europe. But Bruce Springsteen was coming to Chicago–but the concert was only a few weeks away. I assumed it was too late–but I thought I might as well ask. Amazingly, the answer was, yes, we should be able to get tickets for you. Just prior to the concert, Joyce sent me the ticket pick up information. I admit that even as I approached the Will Call window, I remained dubious. Would they really have tickets for me?

They did.

Great seats!

Great seats!

And the seats! Wow. No Everest-like climb to the United Center’s highest peaks. We were in the 10th row of the 100 section. The first time I saw Bruce was  at Soldier Field in 1985. I was three rows from the last row in the stadium…there were 69,800 people in front of me–and it was still a great show. In 2016, we were indoors at the United Center (“Thank God for air conditioning,” said Bruce) and I did not have to rely on the Jumbotron to see the band.

I don’t understand how a 66-year-old man can give a succession of concerts that go full throttle for 3.5 hours. Just watching him made me feel energized.

I was so pleased to share the experience with some of my family–how great that the people who have often accompanied me to appointments could join me for something so entertaining and fun. We will be talking about it for months to come–it was great.

I live with this disease every day (and every month, I see my oncologist.) This was just an awesome break in the routine.

Thanks again, Do It For the Love Foundation!

Learn more about the foundation here. 

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