Friday, October 9, 2015


From the inception of the No Surrender Breast Cancer Foundation, we have stressed the importance of early detection. Some people are very lucky and find their tumors while they can be removed and the rest of the body can be treated depending on the extent of the disease. Does that mean that all small tumors are not deadly? No.

My first breast cancer's pathology revealed it began as DCIS, meaning it was contained within the milk duct. But it broke through the duct and became invasive. Invasive triple negative breast cancer. Because of this I had to do chemotherapy and radiation. That was in 2001. Over the next few years I met some wonderful women through my foundation. One young woman became a dear friend. Her name was Ferne Dixon. Her picture is on the right of this blog and always will be in eternal memory. She had triple negative breast cancer, too. But she did not get screened early and because of this the tumor was found after it became quite invasive.

Like Ferne, young, black women are at a higher risk of developing triple negative breast cancer while they are in their 30s. If they wait to be screened until they are 40 - or now as the new guidelines suggest 50 -  it will be too late. I promised Ferne as she was dying of this horrible disease, that I would do everything in my power to spread the word about the importance of early screening so young women would have a chance to become old women and not die of a disease that could have been treated and possibly overcome.

Now, after an exhaustive study, the experts are stating that early detection does, indeed, prolong life.
They have proof. It can be found here.

What the study shows is that the smaller the tumor, the longer the survival. The more lymph nodes involved and the larger the tumor the long term survival is not as favorable.

With new targeted treatments and the effectiveness of hormonal medications, even women with a more advanced disease are living longer. This applies only to women who are responsive to endocrine therapy.

My second cancer was estrogen receptor positive and it was large and involved the lymph nodes. Reading the graph is frightening knowing my pathology. But I am glad I did a year of strong chemo and had extensive radiation and am taking Femara. At least I am fighting it. What about the women who haven't been screened so they do not know they have to fight?

As everyone knows, we are firmly anti-pink at No Surrender. Sometimes that message is misunderstood to mean that we are anti-early detection. That has never, ever been the case. Look at our program The Before Forty Initiative - here - and you will see how strongly we believe in screening.  This screening is not just mammograms, which can miss some tumors. We encourage fighting for ultrasounds and breast MRI's - particularly for young women with dense breast tissue.

If you do anything in this pink month, set the record straight. Opposing pink greed is not opposing being smart and taking care of yourself and the ones you love. If you would like to start a Before Forty Initiative Outreach in your area, please contact us. We travel everywhere we can find women who don't know of their risks. We have made a difference. Tumors have been found in young women. And every time I am thanked by them or their mom or grandmother, I think of Ferne. I know she is smiling and telling me, "Keep it up, girl."

Early Screening Article:

Before Forty Initiative:

Thursday, October 1, 2015

Nothing to Say

It's October. Oh holy hell. Not again.

Everyone is asking me to either say something or  participate in something pink. Why? When have I ever been pink?

I was first diagnosed in September - so I had to go through the first horrifying month of chemo in a sea of pink ribbons and happy faces. In the real world, I slept on the bathroom floor because I was so sick from treatment I had to.

Breast Cancer is a cancer just as real as any other. But for some reason, this particular cancer is downgraded and infantilized. The focus is on  "Saving the Boobies!" not saving the lives of the 250,000 women who are diagnosed each year with over  40,000 dying of the disease annually. No. It is easier to make it pretty in pink. Easier for whom?

In the past week I was asked if my foundation, "Gets a lot of donations because it is October?"  Uh, no. People are too tapped out from buying pink toilet paper and pink fuel filters and pink shoelaces and pink ... everything. As I was checking out at a local store today the cashier asked if I would like to "Give to breast cancer?" Give what? What more can I possibly give? I asked her which breast cancer? She said, "You know, the one that you give to." I bit my tongue and said, no.

Nevertheless, it is upon us. In its full pink glory. Everyone looks so happy. The idiotic glee celebrating rapidly duplicating cells that are attempting to claim your life. This misguided and dangerous joy is hurting the women who are afflicted with this cancer. It is devastating to the women who are dying from this cancer. How do you explain the giddy excitement of Pinktober to a child who lost their mom? I know a lot of kids who lost moms. Trust me. They aren't having as much fun as the pink zombies want you to believe they are.  But no matter, as long as one percent of your purchase price goes to "a breast cancer charity" you should feel really great about doing your bit for breast cancer.

I run a non-profit foundation for women trying to get through breast cancer and we have never exploited the month of October for fundraising purposes. Why? Because women have breast cancer twelve months a year. And we help women during every single one of them. Our care doesn't stop after Halloween.

I do not use profanity in my writing, I keep things clean and professional. But, sometimes, only someone who really gets it, can put things into perspective. I wish everyone took breast cancer as seriously as other cancers. Other cancers like the one that took Warren Zevon. He wrote this in response to his diagnosis and treatment. It's not pink. Neither is breast cancer. Cancer is cancer. And the next time someone asks you to wear a pink boa and act like a child, please remember that THIS is what having cancer feels like...

Friday, August 7, 2015

Use Caution With Supplements During Chemotherapy

We are advocates of a healthy, evidence-based CAM regimen. However, when undergoing chemotherapy, it is not advisable to supplement unless expressly permitted by your doctor. Of all the supplements out there, the only one that appears to be safe, and essential for the rest of our lives, is Vitamin D. All other "vitamins" can be detrimental to the effectiveness of your chemotherapy killing cancer cells.

To put it simply, vitamins and supplements are anti-oxidants, chemotherapy is an oxidant. By taking supplementation that fights oxidants- you are fighting the chemo.

One case in particular is fish oil. As this study from Clinical Oncology News reports, it decreases the effectiveness of your treatment. Please read and then go over all the extra supplements you are taking while you are enduring chemotherapy.

Supplements and Cancer Resistance:
A Word of Caution
By Maurie Markman
   There is considerable and understandable interest among cancer patients in a variety of strategies designed to optimize the quality of their lives during and after treatment. Patients and their families also are increasingly proactive in their search for approaches that may favorably affect clinically relevant outcomes. 
   For these reasons, a wide variety of supplement use is common in the cancer patient population. In fact, in my experience, it is now quite common for patients to bring information to their clinic visits that they, or their families, have discovered through their own Internet-based searches so that they can inquire whether the strategy or product highlighted in the material would be relevant in their management.
   The specific goals of supplement use vary but include the desire to prevent or alleviate cancer or treatment-related symptoms, enhance an individual’s nutritional status or general well-being, or favorably affect natural defense mechanisms.
   Unfortunately, there may be legitimate concerns associated with the use of particular supplements in this setting. It is important to note, the major issue here is not the lack of evidence-based data supporting the objective validity of claims that the supplement actually produces the desired favorable effect, but rather the potential that use of the product may cause harm.
   For example, it has been estimated that omega-3 fatty acids, delivered most commonly in the form of fish oil, may be used by as many as 20% of patients with cancer in the United States.1 Preclinical data have suggested that even low concentrations of certain fatty acids can result in resistance to chemotherapeutic agents.2 Furthermore, a recent study in normal volunteers showed that consumption of fish oil at doses that might be taken by patients with cancer resulted in plasma concentrations of these fatty acids that were in the range where preclinical studies had revealed the development of chemoresistance.3
   Thus, although these data do not prove that the intake of fish oil with cytotoxic chemotherapy seriously interferes with the clinical effectiveness of antineoplastic treatment, one must be concerned that this could happen. Of course, it would never be possible to know in patients with cancer whether their use of fish oil had anything to do with the development of chemotherapy resistance in their cancers. However, on the basis of these data, it would be prudent for oncologists to encourage patients who are self-administering fish oil while undergoing chemotherapy to discontinue this practice and resume use of the product—if they so desire—following the completion of the cytotoxic drug program.
1. Gupta D, Lis CG, Birdsall TC, et al. The use of dietary supplements in a community hospital comprehensive cancer center: implications for conventional cancer care. Support Care Cancer. 2005;13(11):912-919, PMID: 15856334.
2. Roodhart JM, Daenen LG, Stigter EC, et al. Mesenchymal stem cells induce resistance to chemotherapy through the release of platinum-induced fatty acids. Cancer Cell. 2011;20(3):370-383, PMID: 21907927. 
3. Daenen LG, Cirkel GA, Houthuijzen JM, et al. Increased plasma levels of chemoresistance-inducing fatty acid 16:4(n-3) after consumption of fish and fish oil. JAMA Oncol. 2015;1(3):350-358, PMID: 26181186.

Wednesday, June 24, 2015

The Mammography Debate

Our Chief of Research, Constantine Kaniklidis,  has just published two reports in "Current Oncology" presenting an evidence-based review of the mammography debate. We are so very fortunate to have Constantine as our partner, friend and guiding light.

Below we present two abstracts with links to the articles.

Both articles were just published in the Current Oncology journal, and available (hyperlink below) online at (I include the brief abstracts for each):
Through a glass darkly: the mammography debate
[Invited Editorial]

About the ongoing breast cancer screening mammography debate - less a controversy, because many points of consensus and convergence are present if not always apparent - we can make these points as prelude: that it is complex; that it is naïvely implausible to expect any decisive final resolution to the residual issues that will be convincing to the principle contending parties; and that behind it all, the devil is in the methodology. In this editorial we propose: (1) a greater focus on moving beyond the current borders of the mammography debate to secure superior screening technologies that will erode the central status currently occupied by conventional mammography; (2) making research advances that will minimize the harms, especially of overdiagnosis (overdetection); and (3) furthering research to provide validated markers for the discrimination of low-risk and indolent disease.

Beyond the mammography debate: a moderate perspective [Perspectives in Oncology Review]

After some decades of contention, one can almost despair and conclude that (paraphrasing) “the mammography debate you will have with you always.” Against that sentiment, in this review I argue, after reflecting on some of the major themes of this long-standing debate, that we must begin to move beyond the narrow borders of claim and counterclaim to seek consensus on what the balance of methodologically sound and critically appraised evidence demonstrates, and also to find overlooked underlying convergences; after acknowledging the reality of some residual and non-trivial harms from mammography, to promote effective strategies for harm mitigation; and to encourage deployment of new screening modalities that will render many of the issues and concerns in the debate obsolete.

To these ends, I provide a sketch of what this looking forward and beyond the current debate might look like, leveraging advantages from abbreviated breast magnetic resonance imaging technologies (such as the ultra fast and twist protocols) and from digital breast tomosynthesis—also known as three-dimensional mammography. I also locate the debate within the broader context of mammography in the real world as it plays out not for the disputants, but for the stakeholders themselves: the screening-eligible patients and the physicians in the front lines who are charged with enabling both the acts of screening and the facts of screening at their maximally objective and patient-accessible levels to facilitate informed decisions.

(Both as HTML (above) and as PDF. For convenience, I attached the PDF versions to this posting.) A third article of mine will be published in the August issue, and I will post that when available.



Constantine Kaniklidis
Research Director
No Surrender Breast Cancer Foundation (NSBCF)

Saturday, June 6, 2015

Controlling Pain in Breast Cancer Surgery

 The take-away:

Post operative pain in breast cancer surgery can be quite difficult for the patient particularly in the setting of sentinel node and axilla dissection. This scientific article shows ways to help control the pain.

It is most fortunate that acetaminophen is now available in an IV form because it can be given in the recovery room to enhance pain relief. Opioids are not always the answer or the best choice in controlling pain; their side effects often outweigh their benefits.

Localized (regional) pain relief with either a long acting numbing agent administered before the patient awakens from anesthesia and/or the insertion of a pain pump that delivers numbing action directly to the surgical site can “break the cycle” of pain before it begins for the patient. Thus, the patient feels better in recovery and is able to begin the healing process without pain being the main focus.

There is even some evidence that avoiding opioid use may improve survival, but there needs to be more studies to investigate this further.

Improving Patient Outcomes Through State-of-the-Art Pain Control in Breast Cancer Surgery
Jacob L. Hutchins, MD

Acute post surgical pain continues to be difficult to manage in patients who undergo breast cancer surgery. Poorly controlled pain can lead to poor patient satisfaction, increased length of stay, and increased risk of opioid adverse events, and may be a factor in the development of chronic pain. A multimodal analgesic regimen that consists of 2 or more non-opioid medications and is initiated in the preoperative phase and continued during the intraoperative and acute postoperative phases may provide the best patient outcomes. These nonopioid medications include, but are not limited to, local anesthetics, acetaminophen, nonsteroidal anti-inflammatory drugs, antiepileptics, alpha-2-adrenergic antagonists, N-methyl-D-aspartate antagonists, and glucocorticoids. This multimodal approach can be a stand-alone protocol or a part of a more comprehensive enhanced recovery after surgery (ERAS) protocol.

Postoperative pain control remains a common problem for patients undergoing breast cancer surgery. A recent survey showed that patients’ number one concern leading up to surgery is pain.

Uncontrolled, acute postoperative pain can lead to an increased surgical stress response. This then has an effect on endocrine, metabolic, inflammatory, and immune functions, which can further stress various organ systems. Appropriate pain control can lead to improved postoperative outcomes as well as decreased pulmonary and cardiac complications.

In addition, uncontrolled acute postoperative pain is associated with longer stays in the postanesthesia care unit, longer hospital stays, decreased patient satisfaction and quality of life, and increased costs. Furthermore, while multifactorial in nature, the incidence of chronic pain may be decreased by an aggressive multimodal approach in the acute postoperative setting. As many as 4% to 63% of patients suffer chronic pain after mastectomy, and as such, effective acute pain control remains paramount to patient recovery following breast cancer surgery.

The mainstay of perioperative pain control has been opioids. However, opioids are associated with significant risks and adverse effects (AEs) such as pruritus, constipation, nausea/vomiting, urinary retention, oversedation, and respiratory depression. A recent sentinel event alert by The Joint Commission expressed the need for safe use of opioids in the hospital setting. This alert identified those most at risk for respiratory depression, including patients with obstructive sleep apnea or those who are opioid-naïve or obese, which are common characteristics of patients undergoing breast cancer surgery. Furthermore, opioid abuse is an ever-increasing problem in the United States. A recent survey in 2010 showed that 5.1 million US citizens had used opioids illicitly within the past month. Finding ways to minimize opioids in the treatment of perioperative pain may not only decrease AEs, but also decrease the exposure and subsequent misuse of opioids in society.

A multimodal approach has been used for perioperative pain control in various surgical procedures. Multimodal analgesia is the use of more than 1 class of nonopioid medication to reduce pain and minimize the AEs of any 1 class of pain medication. These medications act via different mechanisms and produce a synergistic effect on acute pain control. A successful multimodal protocol requires coordination between all phases of care: preoperative, intraoperative, and postoperative. Furthermore, the surgical, anesthesia, and nursing teams must all work together to ensure that all aspects of the multimodal plan are followed.

The Table lists a sample multimodal approach for breast cancer surgery. A preoperative regimen could consist of an antiepileptic medication, such as gabapentin or pregabalin, acetaminophen, and regional anesthesia. Preemptive analgesia ensures that the medication given is active before and during surgery. This also may decrease afferent transmission of pain signals and decrease acute postoperative pain. Several studies have shown opioid reduction and decreased acute and chronic pain using preemptive antiepileptics such as gabapentin or pregabalin. Regional anesthesia for breast cancer surgery could be either paravertebral blocks, pec blocks, or a thoracic epidural injection.  These blocks can be either a single-shot block or a continuous infusion via catheter. Several studies have shown  decreased  postoperative  pain  when these regional techniques are used for breast surgery. If a transverse rectus abdominis muscle (TRAM) or deep inferior epigastric perforator (DIEP) flap is performed, the use of transversus abdominis plane block (TAP) has also been shown to decrease postoperative opioid use and pain scores.

Intraoperatively, pain control should consist of zero to minimal short-acting opioids and a redose of acetaminophen if adequate time has passed. If the patient didn’t receive preoperative regional anesthesia, then the surgeon should perform infiltration with local  anesthetics.  This  can  be  liposomal bupivacaine, bupivacaine, or ropivacaine, or placement of a continuous wound infiltration catheter. The local anesthetic of choice for infiltration should be the one that provides the longest duration of action in order to provide maximal patient benefit. Liposomal bupivacaine, given via single-shot infiltration, may provide more prolonged or extended analgesia postoperatively than standard local anesthetics.  Recent data have shown liposomal bupivacaine given via infiltration to be an effective adjunct for postoperative pain  control  in  breast  augmentation  and reduction.

In addition, continuous peripheral or wound catheters can provide several days of pain relief using a continuous infusion of local anesthetic.

The postoperative pain regimen should consist of scheduled acetaminophen, scheduled antiepileptics, scheduled nonsteroidal anti-inflammatory drugs as soon as allowed, and intermittent short-acting opioids. This postoperative regimen should be continued for up to 1 week after surgery. In addition, complementary therapies such as acupuncture, aromatherapy, and healing touch can be offered to the patient. If a continuous catheter is in place, the infusion should consist of, at minimum, a local anesthetic and should be used in the acute postoperative period.

In  addition  to  the  medications  listed  in  the  preceding paragraphs and the Table, several other classes of medications can  also  be  used  pending  patient  selection.  Intravenous lidocaine has been used to decrease acute postsurgical pain in many surgical populations.  N-methyl-D-aspartate (NMDA) antagonists such as ketamine and magnesium may play a role in  central  sensitization.  The alpha-2-adrenergic antagonists clonidine and dexmedetomidine have been used in multimodal approaches in other surgical procedures with success, as they primarily act at the substantia gelatinosa of the spinal cord. Finally, glucocorticoids such as dexamethasone have been used to minimize inflammation and postoperative pain.

A comprehensive multimodal pain regimen will provide the patient with the most complete pain control. It will minimize opioids,  which  not only will  minimize  opioid-related  AEs and  opioid misuse, but may decrease  cancer  recurrence. 
A  retrospective  study  by  Exadaktylos  et  al showed  that paravertebral anesthesia and analgesia  decreased  breast cancer recurrence rates. Prospective studies have shown that paravertebral anesthetics, as opposed to general anesthetic with opioids and inhalation anesthetics, resulted in increased natural killer cell cytotoxicity as well as increased apoptosis in estrogen receptor–negative breast cancer cells.

In conclusion, this review of a multimodal approach to acute postsurgical pain can provide a framework for managing patients’ pain after breast cancer surgery. This could be used alone or in combination with an enhanced recovery after surgery (ERAS) protocol to improve patients’ postsurgical outcomes. However, future prospective randomized studies are needed to determine the exact combinations and dosages of multimodal medications to provide the optimal benefit for patients.

Affiliation: Dr Hutchins is from the University of Minnesota Department of Anesthesiology.
Disclosure: Dr Hutchins is on the speaker’s bureau, is a consultant for, and has received research funding from Pacira Pharmaceuticals and is on the speaker’s bureau for Halyard Health.
Address correspondence to: Jacob Hutchins, MD, B515 Mayo Memorial Building, University of Minnesota, 420 Delaware St, Minneapolis, MN 55455. Phone: 612-624-9990; fax: 612-626-2363; email:
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- See more at:

Tuesday, June 2, 2015

Clinical Trial Provides Access to Targeted Drugs To Patients Who Have Exhausted Conventional Therapy

This is very exciting and long awaited news. I have seen too many people who have exhausted all their options, and who were physically eligible for a new, targeted treatment, only to be turned down because it has not been approved for metastatic use or they are excluded because of all their previous therapies. 

When you have  no more choices, access to potentially life extending drugs is your only hope. Finally, ASCO understands this and five pharmaceutical companies are on board. This is a major breakthrough for advanced disease patients. All solid tumor and blood cancer patients are included. I have had friends with advanced lung and breast cancer beg for compassionate access only to be denied because of red tape. This trial will change that. Bravo ASCO and thank you.

ASCO Launches First-ever Clinical Trial: Aims to Learn from Patients with Advanced Cancer Who Lack Standard Treatment Options Five Leading Pharmaceutical Companies Will Support Innovative Study, Contribute Drugs

CHICAGO – The American Society of Clinical Oncology (ASCO) today announced its first-ever clinical trial that will offer patients with advanced cancer access to molecularly-targeted cancer drugs and collect “real-world” data on clinical outcomes to help learn the best uses of these drugs outside of indications approved by the Food and Drug Administration (FDA). Plans for the Targeted Agent and Profiling Utilization Registry (TAPUR) study, including the participation of major pharmaceutical companies that will contribute free drugs, were released in a news briefing at the Society’s 2015 Annual Meeting in Chicago.

The ASCO-sponsored prospective, non-randomized clinical trial will collect information on the anti-tumor activity and toxicity of commercially available, targeted cancer drugs in a range of cancer types, including any advanced solid tumor, multiple myeloma, or non-Hodgkin lymphoma with a genomic variation known to be a drug target.

“Oncologists often use therapies approved for a specific cancer indication to treat people with other types of advanced cancer, but we very rarely learn from that experience to benefit other patients,” said ASCO President Peter Paul Yu, MD, FACP, FASCO. “TAPUR will document the real-world experience of patients who receive commercially available targeted anti-cancer drugs and will describe the effectiveness and side effects of a range of targeted agents available in this study.”
ASCO will organize the operational aspects of the study, including the participation of multiple collaborators that are central to TAPUR’s success. TAPUR will involve not only patients and physicians, but also ASCO oversight committees, pharmaceutical companies, technology firms, and community-based study sites—representing a uniquely innovative and inclusive approach to studying the use of molecularly-targeted cancer drugs.

“We are leveraging ASCO’s unique ability to bring together a diverse group of collaborators to undertake something that’s never been done before, all while simplifying access to multiple cancer treatments across many tumor types,” said ASCO Chief Medical Officer Richard L. Schilsky, MD, FASCO. “Perhaps even more importantly, TAPUR will involve community-based research programs, where the majority of cancer patients receive treatment and will provide education and support to community oncologists to help them interpret complex genomic tests.”

TAPUR Next Steps
In the coming months, an Institutional Review Board will review the study protocol and consent form.  In addition, ASCO has established three oversight committees—each of which will include patient representatives, clinical oncologists, statisticians, and genomics specialists:

    •    Steering Committee to oversee study operations, establish data sharing and publication policies, review plans to add or remove drugs from the study, and approve participation of clinical study sites;
    •    Molecular Tumor Board to review the proposed drug-target match and suggest therapies on or off the study;
    •    Data and Safety Monitoring Board to regularly review study results to ensure that severe or unexpected adverse events are carefully monitored, to determine when enrollment of study cohorts should expand or cease, and to determine when to release data and to which parties.

Patient Participation
TAPUR is designed to include a broader patient population than is typically enrolled in clinical trials. It will accept patients who have any advanced solid tumor, multiple myeloma, or B cell non-Hodgkin lymphoma and are no longer responding to standard anti-cancer treatment or for whom no acceptable treatment is available. Patients will be screened to determine if they are healthy enough to participate based on broad inclusion/exclusion criteria.

If and when a patient meets the defined trial criteria, his or her treating physician will select a drug from among those available in the TAPUR study protocol that targets the identified genomic variation in the patient’s tumor. If a relevant drug-target match is not described in the protocol, a physician may consult the Molecular Tumor Board which will review the clinical and genomic features of the case and suggest potential therapies on or off the study. All patients who receive treatment through TAPUR will be monitored for standard toxicity and efficacy outcomes including tumor response, progression-free and overall survival, as well as duration of treatment.

Patients participating in TAPUR will receive the anti-cancer drugs at no charge. It is expected that routine clinical care costs will be covered by the patient’s insurance plan.

Participating Organizations ASCO has invited a number of pharmaceutical companies to provide marketed, targeted drugs and additional resources to support the development of the new study’s infrastructure. At the time of this announcement, ASCO reported that the following companies have signed memoranda of understanding agreeing to participate in the TAPUR study:

    •    AstraZeneca
    •    Bristol-Myers Squibb
    •    Eli Lilly and Company
    •    Genentech
    •    Pfizer

“At least 13 drugs that target more than 15 unique genomic variants will be provided by these companies. We are extremely grateful for the generosity of these companies without whose support TAPUR would not be possible,” said ASCO President Dr. Yu. “We anticipate additional companies will sign on, and are extremely encouraged with the level of interest we have received so far.”
ASCO will launch the TAPUR study at clinical sites that comprise the Michigan Cancer Research Consortium, the Cancer Research Consortium of West Michigan, and the Carolinas Healthcare System—existing research networks that run research trials for the National Cancer Institute and industry—with the ultimate goal of expanding nationally.

Two technology companies will provide key support to manage, analyze, and interpret the study data: Syapse will provide its Syapse Precision Medicine Platform to automate the study workflow and the Molecular Tumor Board process, and capture structured data from participating practices. Illumina will provide its NextBio knowledge base platform to support and inform the case review by the Molecular Tumor Board, as well as to support analysis of the TAPUR data by the study team.
Finally, the Society will collaborate and share data with the Netherlands Center for Personalized Cancer Treatment, which is conducting a clinical trial using a study protocol very similar to TAPUR.
“We are very fortunate that this leading cancer center has the same focus as TAPUR,” said Dr. Schilsky. “Technological advancements will allow us to pool our information in a seamless fashion and give us the ability to learn from the experience of a larger group of patients.”
Patient Advocates to Play Key Role in TAPUR

Patient advocates will play a central role throughout the study, providing guidance and oversight support. Jane Perlmutter, PhD, a cancer survivor and nationally recognized patient advocate, is lending her expertise in trial development and will help coordinate patient advocate recruitment and training for the study.

“TAPUR has enormous potential to improve our understanding of the effectiveness of currently available therapies in treating cancers with genomic variations and to learn from patients who are treated with off-label drugs,” said Dr. Perlmutter. 

“I applaud ASCO for undertaking this important study and believe its findings will improve cancer care, especially for those with advanced cancer for whom traditional therapies are no longer working.”

For more information about TAPUR, please go to

Monday, June 1, 2015

New Drug Offers New Hope for HER2+ Metastatic Breast Cancer Patients

Promising clinical trial results presented at the American Society for Clinical Oncology (ASCO) Annual Meeting 2015 show activity of the investigational anti-cancer agent ONT-380 against HER2+ breast cancer, in one case specifically against brain metastases and in another case in overall survival of heavily pretreated HER2+ breast cancer patients.

"I am thrilled to have been able to offer this therapy to a patient in her early 40s. She didn't have any other great treatment options that we would have expected to have any meaningful impact, especially on her brain. Now she's been on the study over a year. The mets in her body are gone and the brain lesion has shrunk down to a little nubbin. She's living a normal life, fretting about the family business and how the kids are doing -- normal stuff," says Virginia Borges, MD, MMSc, director of the Breast Cancer Research Program and Young Women's Breast Cancer Translational Program at the University of Colorado Cancer Center and one of the study's authors.

Both sets of results being presented are from ongoing phase 1b clinical trials of ONT-380, one in combination with the drug TDM-1, and the other in combination with capecitabine and/or trastuzumab. Women on these studies include those whose disease had progressed after at least two previous rounds of therapy (sometimes including previous drugs used to target HER2).

In the first study of ONT-380 with TDM-1, all 8 evaluable patients experienced more than 50 percent reduction in primary brain tumor size.

"This drug has the potential to be the long-awaited, needed therapy that targets brain metastases in HER2+ brain cancer, and could even someday be used to prevent brain metastases in the first place," says Borges.

The second study presents overall response rates from a similar, ongoing phase 1b clinical trial of ONT-380 with capecitabine and/or trastuzumab. Of 8 heavily pretreated patients enrolled on the study, 4 showed partial response (reduction in tumor size of more than 30 percent), 2 achieved stable disease, and 2 progressed.

In about 25 percent of the 1-in-8 women who will develop breast cancer during their lifetimes, the HER2 gene creates an abnormal amount of HER2 protein, which acts as a "receptor" for human epidermal growth factor. The presence of more HER2 receptors allows a cell to trap more growth-promoting hormones, which tells the cell to grow in an out-of-control, cancerous way.

ONT-380, invented by Array Biopharma in Boulder, CO and now being developed by Oncothyreon in Seattle, WA, is a small molecule inhibitor of the HER2 growth factor receptor. The drug works by targeting the HER2 "tyrosine kinase" -- a link in the chain of communication that allows HER2 receptors to signal the growth of the cell. The fact that it is a small molecule means the drug is able to pass through the blood-brain barrier to act against brain metastases of the disease. HER2+ breast cancer is more likely to affect younger women and also more likely than other breast cancers to metastasize specifically to the brain.

"Usually we expect the results of a phase 1 clinical trial to give us data that we can use to guide the results of future treatments. This is a great case in which, for many of these patients, the results were immediate. There are women who are alive today because of this drug," Borges says.

University of Colorado Cancer Center. "ONT-380 has stage IV HER2+ breast cancer patient 'worrying about normal stuff again'." ScienceDaily. ScienceDaily, 29 May 2015. .

Wednesday, May 13, 2015

Sandra Lee Smart Self Advocacy

Television chef, Sandra Lee, has discovered she has breast cancer. It is apparently quite aggressive because her doctors have informed her she is a "ticking time bomb" and she will be undergoing a bilateral mastectomy this week. Ms. Lee is in her forties. She insisted on getting screened for breast cancer which is smart. She does not have a family history, but that didn't stop her. Perhaps she knew that eighty percent of breast cancers are found in people without a family history.

By finding her tumor early, she has the best chance of fighting it. She will have the cancerous tissue removed, receive the therapy necessary to eradicate the remaining cells, and if all goes well, she has an over ninety percent chance of beating the disease if it has not spread to her other organs.

This is all common sense. If we can find a disease early and treat it why would we ever take that for granted? It is a question for the United States Task Force, a government sanctioned group that insists that women should not have their first mammogram until after the age of 50. Where would that leave Ms. Lee? If she is a ticking time bomb now, what would become of her in a few years when she is "allowed" to obtain screening?

In today's NY Times, Ms. Lee is said,

“Without early detection on my side, I could be telling a very different story,” she said. “Or not be here to tell it at all.”

The Times went on to report on the task force's two sided view:

Regular mammograms for women in their 40s can be controversial. In April, the United States Preventive Services Task Force, a government panel, suggested that while mammograms are most beneficial for women over 50, mammograms for women in the 40s can “reduce their risk of dying from breast cancer.”

 And yet, they continue the most dangerous message of all:
Still the task force’s draft regulations also stated that women “undergoing regular screening mammography are at risk for the diagnosis and treatment of noninvasive and invasive breast cancer that would otherwise not have become a threat.”

 This is one of the most misinformed statements of the century. There is no such thing as a breast cancer that would "not become a threat." How do they know which cancer cells choose to divide and duplicate and take over a woman's body and kill her? Who are they to make this decision for women?

I was first diagnosed in my thirties. My original tumor was partially DCIS, meaning it was in situ, or "non-invasive" as the Task Force likes to call it. However, the tumor broke through the duct and became invasive, very invasive with a triple negative pathology. Where would I be now if I had waited 12 more years before my first mammogram? I would not have been here. My second breast cancer was in the lobes and rapidly spread to my lymph nodes. This was only five and half years after my first cancer. Two aggressive cancers, both under the age of the Task Force's permitted age for screening.

At the No Surrender Breast Cancer Foundation, we go a step further. We believe in baseline screening before the age of forty. Screening that saved my life in my thirties should be available to everyone. And women in high risk groups, particularly women of African American descent, need to be screened as early as possible because they are at the greatest risk of the finding the most aggressive forms of breast cancer while still in their thirties.

Ms. Lee's long time companion is New York Governor, Andrew Cuomo. In the same NY Times article, he said,

“She had always been diligent about her exams, and thank God she had been diligent about her exams,” the governor said, adding, “If she waited until she was 50, this would be a very different situation.”

Mr. Cuomo, as a fellow Long Islander and breast cancer survivor, after you are done helping the lovely Ms. Lee through her ordeal, please help the women of your state and then, hopefully, the nation. Eliminate the US Task Force's guidelines any way you can. Please, look into our Before Forty Initiative to help us spread the word of the risk young women face for aggressive breast cancers. The No Surrender Breast Cancer Foundation has been fighting hard for a long time. We could use your help.

Ms. Lee, we are here for you. We can help you through each step of your journey. And, personally, as someone who has been there, I am here to tell you that you can get through this and you will get your life back.

For more information about our foundation: No Surrender Breast Cancer Foundation:

Breast Cancer 101:

The Before Forty Initiative:

Monday, February 9, 2015

Special Programming Note

WNYC and NPR present

To Air Nationally on
NPR’s Morning Edition and
 All Things Considered
During the Weeks of 
February 9 and March 23

Nationally, one in two men and one in three women will be diagnosed with the disease, and almost every American family is touched by the disease in some way. In the past, a cancer diagnosis was often kept a family secret with a grim prognosis. Now, thanks to advances in treatment, many people are "living cancer" - whether we're being treated ourselves, or helping a family member or friend.
During the weeks of February 9 and March 23, WNYC, the premiere public radio producer and broadcaster, and NPR will present “LIVING CANCER, a 10-story series that will examine the shifting science and economics of cancer treatment and the impact on individuals and families. New drug protocols offer hope for many, while remaining just out of reach for others. Research scientists are working to discover the root causes of cancer, but the disease process is often too complicated for simple explanations. And as more people survive for years after a cancer diagnosis, what originally was a medical crisis can often be managed as part of an everyday routine.  The radio series will explore these complex realities of cancer today.
“LIVING CANCER” will air on the NPR programs Morning Edition and All Things Considered, heard on public radio stations across the country. All stories from the series will be available at and following their broadcast premiere. A preview video may be viewed here:  In addition, WNYC’s nationally-distributed program On the Media will devote an entire episode to the history of cancer and the media, premiering on Friday, March 27.
The schedule of “LIVING CANCER” stories is as follows:
Week of February 9 

Advances in Immune Therapy of Cancer
Morning Edition; Monday, February 9
One of the hottest areas of cancer research is in “immunotherapy,” which involves harnessing the immune system to attack tumors. After decades of frustration, researchers think they’ve finally figured out how to do this. A new generation of drugs essentially disables the ability of cancer cells to hide from the immune system. NPR health correspondent and editor Rob Stein reports that the treatments are showing promise for a wide range of cancers, including skin cancer, kidney cancer and lung cancer.

Fighting For The Latest Treatment
All Things Considered; Monday, February 9
Kathy Liu is desperately trying to find a cure for her 10-year-old son Joey, who was diagnosed last year with late-stage kidney cancer. She’s petitioning the FDA and three major drug companies to gain access to new immunotherapy drugs, treatment she believes is their only hope. The drug was approved in September, but that hasn’t meant she can get it yet. Amanda Aronczyk of WNYC reports that Kathy Liu needs to decide how far she’ll go with current treatments — that barely work and are very toxic — to keep Joey alive until the “miracle” drug becomes available for kids.

What’s The Prognosis?
Morning Edition; February 10
“Doctor, how long do I have to live?” That question, and the answer — an estimated amount of time that a patient might have left — can define what a patient will and won’t do with their remaining time. But how accurate is the prognosis, and where does the data come from? And how can doctors and patients make that important question, and answer, less fraught? WNYC’s Amanda Aronczyk reports.

Pregnant With Cancer
All Things Considered; Tuesday, February 10
Last year, when WNYC health editor Mary Harris was 35, she was diagnosed with breast cancer. In the process of preparing for treatment, she also found out that she was pregnant. This story traces her journey through pregnancy, chemo, birth and the early infancy of her daughter, Stella. We follow her through the wrenching decisions she and her husband had to make from deciding whether or not to terminate the pregnancy, to the risks of undergoing chemo in the third trimester. Pregnancy in cancer is rare — estimated at 1 in 3,000 cancer cases. But it is also estimated to be growing, because more and more women are getting cancer screenings that mean a diagnosis comes early; and more and more women are putting off childbearing to their 30s or later.

Environmental Exposures and Cancer
Morning Edition; Wednesday, February 11
From 1959 to 1967, 20,000 pregnant women in California enrolled in the Child Health and Development Study and agreed to provide blood samples throughout their pregnancy and beyond. Now, some of those children are getting cancers. Researcher Barbara Cohn is looking back at the samples from pregnancy to see if she can find evidence of chemical exposures in the womb. She is also sending her data on to the first NIH funded exposome research center at Emory University, where they will test those samples for evidence of thousands of chemicals — a process made possible only with new technology. WNYC’s Paige Cowett reports.

Week of March 23 (specific airdates and times forthcoming)

Where are we with the War on Cancer?
Medical researchers have made only modest progress treating the most common cancers since the war on cancer was declared in 1971. A fundamental reason is that scientists are still struggling to make sense of the underlying biology. One noted scientist says understanding has seemingly come full circle... from mind-boggling complexity, to seeming simplicity, and back again to complexity. NPR’s science correspondent Richard Harris explores whether cancer research is in fact lost in an intellectual thicket.

Chronic Cancer
As many people live longer with cancer, the disease has become a chronic condition that’s manageable, but filled with regular treatments and a persistent underlying uncertainty. Dixie Josephson was diagnosed with stage 4 metastatic ovarian cancer 14 years ago. WNYC’s Paige Cowett follows Dixie and her family through her latest round of treatments.

Exceptional Responders
In a clinical trial for the immunotherapy drug, Sunitinib, most patients with aggressive kidney cancer failed to respond. But a handful of patients responded remarkably well. The New York Genome Center is collaborating with Memorial Sloan Kettering to do comprehensive gene sequencing, with the hopes of figuring out what these “exceptional responders” have in common, and what we can learn from them about treating cancer. WNYC’s Amanda Aronczyk reports.

Paying for Cancer
Melinda Townsend-Breslin knows more than anyone would want to about paying for cancer. When her mother was diagnosed with pancreatic cancer in 2013, her parents thought they’d be fine; they had what they considered “Cadillac” care. But the costs still added up, leaving her father with a stunning $500,000 bill when her mother died just eight months later. Melinda knows better than anyone that this shouldn’t happen: she’s a patient advocate in Louisville, Kentucky. She was able to negotiate their bills down to $125,000. But the experience left her with so many questions: why did her parents invest in “cancer insurance” so many years back, when it barely helped at all? How could her mother survive for just eight months and still have so many bills? WNYC’s Amanda Aroncyzk reports.

Early Trials
Today, children diagnosed with ALL, a common form of leukemia, have an 80%-90% chance of surviving if detected early. It is one of the most dramatic reversals in the history of cancer treatment: only a few decades ago, the survival rate was closer to 4%. In the 1960s, Pat Patchell and James Eversull were kids diagnosed with leukemia and both were part of the first cohort of patients to be taken off treatment, because they were responding so well.  They are now middle-aged men, 62 and 52 years of age respectively, and WNYC’s Amanda Aroncyzk checks in to see how life turned out for them, and examines how those early trials sent the precedent for cancer treatment as we know it today.

For more information, visit

Saturday, January 10, 2015


Thirteen and half years ago I was told I would not see beyond two years because I had the most aggressive form of breast cancer and after surgery, chemotherapy and radiation, there was nothing I could do about protecting myself for the future.

I read up on what the latest research was. There was not much. Back then, it was called estrogen and progesterone negative breast cancer. Now it has a fancy name, Triple Negative Breast Cancer, which means the same thing: It does not have receptors that are fueled by estrogen or progesterone and it is does not carry the protein Her2Nue. All that means is that there are not drugs to block the estrogen and it does not benefit from the breakthrough drug Herceptin.

I found that exercise, a low fat diet, flax seeds and vitamin D were my only allies. I also found many other women who were diagnosed with the disease. Many of whom are no longer alive. The Before Forty Initiative was started to help young women, especially in certain populations, to get early screening as the only defense against the disease.

The following report is the most promising thing I have yet to find. Researchers at Cambridge University have identified the TNBC gene. This is huge. This has the potential to make an often unmanageable disease into one that can actually be prevented.

This is what HOPE looks like. We are moving forward, at long last.

Breast cancer breakthrough as Cambridge University finds gene behind killer disease
Cambridge University and the Wellcome Trust’s Sanger Institute have discovered the gene responsible for triple negative breast cancer 

The gene BCL11A is likely to be behind triple negative breast cancer

By Sarah Knapton, Science Editor

Scientists have identified the gene behind one of most aggressive forms of breast cancer in a breakthrough which could bring life-saving new treatments.

Triple-negative breast cancer is one of the most deadly forms of the disease and nearly one quarter of patients diagnosed will not survive for more than five years.

Now researchers at Cambridge University and the Wellcome Trust’s Sanger Institute have found that the BCL11A gene is overactive in eight out of ten patients.


The study opens the door for therapies which suppress the gene and for screening that would pick up the risk early when women still had time to opt for life-saving mastectomies.

“Our gene studies in human cells clearly marked BCL11A as a driver for triple-negative breast cancers,” says Dr Walid Khaled of the University of Cambridge.

“We also showed that adding an active human BCL11A gene to human or mouse breast cells in the lab drove them to behave as cancer cells.

“As important, when we reduced the activity of BCL11A in three samples of human triple- negative breast cancer cells, they lost some characteristics of cancer cells and became less tumorigenic when tested in mice.

“So by increasing BCL11A activity we increase cancer-like behaviour; by reducing it, we reduce cancer-like behaviour.”

Around 10,000 people a year are diagnosed with triple-negative breast cancer. The disease does not respond to traditional breast cancer drugs like Herceptin and is one of the most aggressive types.
Just 77 per cent of people with triple-negative breast cancer will survive for five years, compared with 93 per cent for other types of the disease.

For the new study, researchers looked that the genetic profile of tumours from 3,000 patients, specifically searching for genes which affect how stem cells and tissues develop.
Higher activity of the BCL11A gene was found in approximately eight out of ten patients and was associated with a more advanced grade of tumour.

To test the theory that the gene was promoting tumour growth, scientists genetically engineered mice to have inactive copies. None of the animals went on to develop tumours in the mammary gland, whereas all untreated animals developed tumours.

“This exciting result identifies a novel breast cancer gene in some of the more difficult-to-treat cases,” said Professor Carlos Caldas, Director of the Cambridge Breast Cancer Research Unit at the University of Cambridge.

“It builds on our work to develop a comprehensive molecular understanding of breast cancer that will inform clinical decisions and treatment choices.

“Finding a novel gene that is active in cancer should also help in the search for new treatments.”
The breakthrough was welcomed by charities who said it could lead to new targeted treatments.
Dr Emma Smith, senior science information officer at Cancer Research UK, said: “Figuring out the genes that play a role in triple negative breast cancer could lead to new ways to tackle the disease so this study is a promising step forward.

“The next steps will be finding out if the gene plays the same role in causing breast cancer in women, and whether drugs can be developed to target the faulty molecules.
“Triple negative breast cancer can be challenging to treat, so research into the biology of the disease is vital to help scientists come up with new treatments.”

Dr Christopher Runchel, Research Officer at Breakthrough Breast Cancer added: “Whilst this investigation and the discovery of a new gene driver for triple negative breast cancer was mostly confined to cell lines and mice, this work could prove promising in the search for new ways to treat this form of the disease in the future

“Triple negative breast cancer is particularly aggressive and does not respond to hormonal therapies such as tamoxifen, or targeted drugs like Herceptin. That’s why the hunt for effective treatments is so important and Breakthrough Breast Cancer have long supported research like this.”
The research was published in the journal Nature Communications.

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