Medical Emergencies and the Single Girl

or How I Use Medical Identification Jewelry to Keep in Touch

When my mother suffered a hemorraghic stroke in August 2008, we could not find her living will for two days. Now my mom had watched her own father die a lingering death, his body tied to a hospital bed by tubes, IV’s and a catheter while he hung in a tenuous coma for over a month. Mom had sat by my grandfather’s hospital bed the entire time, watching her father fade as the medical staff moved constantly in and out of the room to tweak the dials delivering the medication that kept him in delicate balance between life and death.

As soon as my grandfather died, my mother made sure she had a living will, or advance directive, in place to make sure the same thing never happened to her. The thought of being trapped in a coma for the rest of her living days scared her so much, in fact, that she purchased a copy of the book Final Exit, and kept it close at hand so she could feel she had control over how she would die.

So not being able to find my mother’s living will, while she lay in a hospital bed, her brain destroyed by the hemorrhage, her body tied to tubes in the same way her father’s body had been, scared the heck out of me. Finally, we found the document, and my brother, my mother’s health Power of Attorney, flew in from Florida, and we sadly helped my mother die. According to her wishes.

I would not recommend the experience of helping a loved one die. It is a horribly sad experience. But I knew this was what my mother wanted in that situation. And I know it is what I want for myself if faced with the same thing. So I also have a living will.

The question became though, what if like my mom, I collapsed suddenly? I live alone, far away from family. What if I were to fall in the middle of the street, only strangers nearby to help? How would they know who to call? And what if my loved ones could not find my living will?

At the time I was friends with a woman who wore a medical alert bracelet. I began to look at wearing one myself. I discovered that medical alert identification companies often offer a service that links your medical ID to a living will/advance directive filed with their service. They’ll also keep a list of your emergency contacts, your doctors, and a list of current medications.

Morbid it may be, but I was thrilled. I paid the $35 a year membership to the MedicAlert Foundation, and got my own little medical identification bracelet. The humorous part of the membership was when a representative called me asking what medical condition I wanted engraved on the bracelet. “Well,” I said, “I have high cholesterol.” We both laughed. The sad thing was that only three years later, I would truly qualify for a medical identification bracelet with Stage IV breast cancer, a medical port, and blood thinners. I feel honored.

But the most important thing is that when I wear my medical identification bracelet, it gives me a feeling of safety and assurance. I know that if I were to suddenly lose consciousness, hopefully an unlikely event, medical personnel will be able to quickly find my emergency contacts, talk to my doctor, find my living will, and receive an up-to-date list of all my medications and conditions. I know that more than 95% of medical personnel check for medical ID jewelry. And with current medical information, hospital staff will be able to make better decisions in my care. What more can a single girl need?

Here’s the complication. I am a stylish gal. I wouldn’t be caught comatose wearing the dreary stainless steel drab of a typical medical identification bracelet. You know that I found sources for fabulous yet practical medical ID jewelry. Of course I did. The wonderful things is that all a good piece of medical alert jewelry needs to work as planned is a the Caduceus symbol, the phone number for the organization with my records, and my medical alert ID number. Stylish and safe. A single girl’s dream.

Where can you find this stylish jewelry? Well, let me tell you about a few sources. There are many other sources out there, so keep in mind that this is only a start.

Another great source of medical identification jewelry is the site Etsy.com, which is sort of like eBay for artists. There are many beautifully crafted and affordable pieces available through this site. Just search for “medical alert” or “medical identification”.

So get shopping, gang. Buy that beautiful piece of jewelry. Send in that medical information, contacts, and advance directive for easy retrieval. And then relax, enjoy, and go live your life. We’ll be here when you need us.

Susan, The Uppity Cancer Patient

Note from Kathi: this image links to a page where you can get the design on a teeshirt; the proceeds benefit METAvivor. And you can link to Susan’s blog at The Uppity Cancer Patient.

For further information about living wills and your individual state’s requirements, you can visit this link at the U.S. Living Will Registry. Information about advance directives, including the Power of Attorney for Healthcare, can be found here at NOLO.com.

Share

Prevention…Underfunded or Overfunded?

What are those pie charts really telling us?

I was recently asked to comment upon a flier of unknown origin that was making the rounds on Facebook. On it were three pink circles, each with one lonely cut-out sequentially labeled 1.1% (DoD), 17.3% (Komen) and 27% (NIH). Written across the top in bold letters was: “How much breast cancer research money is spent on prevention? Way less than you’d think.” Whether the originator truly believes this or whether he or she is simply taking advantage of the fact that the pie charts can be misleading, I do not know. What I do know is that it’s time to set the record straight.

Pie Charts and the Common Scientific Outline

A few years ago I became curious as to why all pie charts had the same research categories so I did a little online sleuthing and soon stumbled across the International Cancer Research Partnership (ICRP). The ICRP was established in 2000 to help coordinate and compare research portfolios of various organizations. Contained within the ICRP is a Common Scientific Outline (CSO). The outline organizes research by breaking it down into seven research categories — the same ones you see on most research pie charts: biology, etiology, prevention, treatment, early detection, survivorship and scientific model systems.

If you go to the CSO link above, you will find not only these seven categories, but 37 sub-categories and more than 100 examples of the type of research that would fit into each sub-category. Virtually all research done today both in the US and overseas falls within these seven major categories and 37 sub-categories. Here’s how prevention fits in.

Pie Charts and Prevention (Category 3: Prevention)

The prevention wedge on the research pie charts falls into CSO category 3, appropriately labeled “prevention”. Research in this category is defined as: “Research to look at identifying interventions which reduce cancer risk by reducing exposure to cancer risks and increasing protective factors. Interventions may target lifestyle or may involve drugs or vaccines.” The sub-categories are:

  • Interventions to Prevent Cancer: Personal Behaviors That Affect Cancer Risk
  • Nutritional Science in Cancer Prevention
  • Chemoprevention
  • Vaccines
  • Complementary and Alternative Prevention Approaches

But this isn’t all.

Pie Charts and Prevention (Category 2: Etiology)

Many environmental factors also play a role in the development of breast cancer — smoking, radon exposure, viruses, free radicals, genes and more. CSO category 2, “etiology,” is defined as research “to identify the causes or origins of cancer – genetic, environmental, and lifestyle, and the interactions between these factors. Etiology sub-categories are:

  • Exogenous Factors in the Origin and Cause of Cancer
  • Endogenous Factors in the Origin and Cause of Cancer
  • Interactions of Genes and/or Genetic Polymorphisms with Exogenous and/or Endogenous Factors
  • Resources and Infrastructure Related to Etiology

Thus we see that prevention is not only the wedge labeled prevention but also the vast majority of the etiology pie wedge. And there’s more.

Pie Charts and Prevention (Biology)

Category 1, biology, is defined as the study of “how cancer starts and progresses as well as normal biology relevant to these processes.” A significant portion of research in this category also feeds prevention because to prevent cancer, you must first assess the normal biology and determine what triggers the change that starts the cancer process. Biology’s sub-categories are:

  • Normal Functioning
  • Cancer Initiation: Alterations in Chromosomes
  • Cancer Initiation: Oncogenes and Tumor Suppressor Genes
  • Cancer Progression and Metastasis
  • Resources and Infrastructure

Before going to the next category, I would draw your attention to the word “metastasis” in the fourth bullet above. This is the only mention of stage IV disease in a major or sub-category. More on this below under Pie Charts and the Missing Piece – Metastasis.

Pie Charts and Prevention (Scientific Model Systems)

Category seven is scientific model systems, defined as the development of new animal models, cell cultures and computer simulations and their application to other studies across the spectrum of cancer research. These models are needed for all areas of research, including prevention and thus a portion of category seven is also prevention.

Indeed, when it comes right down to it, every aspect of research will contribute to prevention since understanding what is different between any tumor cell and a normal cell adds information that could be used for prevention of the tumor in the first place. But even without these more general-use subcategories, prevention directly receives the lion’s share of all breast cancer research done today.

Pie Charts and the Missing Piece – Metastasis

As to metastasis? Initially metastasis wasn’t even mentioned in the CSO except for one entry “long term morbidity.” That incredibly unfortunate term remains today and is listed under category six “Cancer Control, Survivorship, and Outcomes Research,” sub-category “Patient Care and Survivorship Issues.”

A very few years ago under category one, biology, “metastasis” was finally added to the CSO, appearing as one part of the sub-category “Cancer Progression and Metastasis” with the caveat “optional.” Recently the word “optional” was removed; however, numerous problems remain.

  1. Metastasis, which takes the lives of roughly one-third of cancer patients, does not have its own category in the CSO.
  2. Metastasis does not even have its own sub-category, but rather a shared sub-category.
  3. The examples of metastasis research make it clear that research to prevent or predict metastasis, which is very different than research to stop and/or reduce a metastasis that has already occurred, qualifies as metastasis research. Thus research to study the already metastasized cancer in an effort to determine ways to end death for the stage IV patient or even significantly extend his or her life can be completely ignored but still allow the organization to claim it gives a percentage of research to “metastasis.”

Personally, I’d love to see breast cancer prevented. But that hasn’t happened. And even if it happens, it won’t happen for a very long time because breast cancer is not a single problem, it is multiple problems. Breast cancer won’t be stopped by one vaccine or one solution; it will take many vaccines and many solutions and perhaps even then won’t succeed. In the meantime, people are continuing to be diagnosed with breast cancer at increasing rates. And at least 30% of those are continuing to metastasize and 97-98% of those are continuing to die. The metastatic breast cancer death rate has not changed in decades and it won’t change until the research funding issue is resolved.

Remember, no cure has been found for HIV. No cure has been found for diabetes. No cure has been found for many diseases. But smart, compassionate people had the insight to realize there were various ways to stop death. They didn’t insist on prevention; they insisted on life. And they made it happen. Now HIV, diabetes and other serious conditions are not a death sentence. Those living with these disease have long, productive lives. Prevention is not underfunded; it is overfunded. So let’s start talking about proportionate research so that everyone has a chance at life.

~ CJ (Dian) Corneliussen-James

Share

A Message from METAvivor’s New President

Recently, Dian “CJ” Corneliussen-James, co-founder of METAvivor.org, stepped down as President. We will continue to benefit from her passion and commitment as she serves in her new role as Director of Advocacy. We are pleased and fortunate that Kelly Lange stepped up to become our new President. Here is a message from Kelly to all our friends and supporters.

I am honored and humbled to accept the position of President of METAvivor Research and Support. As I look back on the founding of our organization, I am amazed at what has been accomplished by CJ, Avis, and their co-founders. These women were appalled at the lack of support and funding for metastatic breast cancer, and decided to do something about it. It took two years to establish the organization and raise enough money to award the first research grant. That first $55,000 was difficult; the yard sales, raffles, and concerts were time consuming and sometimes disappointing. But our founders (and their families) persevered, in spite of dealing with their own MBC.

Because of the hard work of our founders and early members, I find myself at the helm of a vital national organization. I have heard from many of you that our work to fund MBC research is critically important. As you and your supporters spread awareness of the MBC/BC research funding discrepancy, donations to our research fund have significantly increased. In 2011 we awarded two grants totaling $75,000 grants, and in 2012 we were able to increase that to three grants totaling $125,000. I am thrilled to announce that we anticipate awarding grants totaling at least $250,000 in 2013!

As I look forward to an exciting year, I am saddened that two of our co-founders, and many of our early members, are no longer with us to see the remarkable success that CJ and her team have achieved. METAvivor will continue our work to advocate that 30% of BC research dollars be dedicated to MBC research. We will continue to work hard to ensure that 100% of all donations to METAvivor will go directly to our research fund. We have secured sponsor funding for our minimal operating expenses, as well as for two of our three annual fundraisers. We are planning for the growth of our organization in the coming years, and will be launching a new awareness campaign in the coming months.

I am very grateful for this opportunity. Every time I lose a friend to MBC I reaffirm my commitment to this ending this horrible disease. I pledge to you that I will do my very best to lead METAvivor towards that goal.

~ Kelly Lange


You may contact Kelly at kelly@metavivor.org.

Share

Treatment for Brain Mets: A METAvivor Research Grant

Donations = Metastatic Breast Cancer Research: This is the third in a series of six reports on the research grants METAvivor has thus far awarded.

Grant awarded to Rahul Jandial, MD, PhD for his research on a potential new medication to fight brain metastases.

2012 Grant Recipient: Rahul Jandial, MD, PhD, is a neurosurgeon and researcher at City of Hope Comprehensive Cancer Treatment Center in California.

Research Project: The goal of this research is to determine the efficacy of a novel drug therapy for HER2+ and Triple Negative (TN) breast cancers that have metastasized to the brain and to establish its potential for use in clinical trials.

Setting the Scene: Metastases comprise the most common cause of malignant disease in the brain, and are diagnosed in up to 200,000 patients per year in the U.S. alone. Primary tumors of the brain (glioma) occur in only 10,000 patients, yet receive nearly the entire focus of research funding and attention for “brain tumors.” Meanwhile, new treatments have evolved that can help slow down the progression of metastatic breast cancer in the bones and in other body tissues. The combined implications of this reality have given rise to a disturbing irony. Because some people are living longer with MBC in these other locations, metastases to the brain, which can take longer to manifest than mets in other tissues, have more time to develop, and are increasingly a first site of relapse in certain types of breast cancer.

Trastuzumab (Herceptin), introduced over 10 years ago, has been found to be an effective treatment for women with HER2+ breast cancer. However, soon after its widespread use, a population was discovered for whom the development and progression of brain metastases became a significant cause of morbidity and mortality. Contrary to past experience, the diagnosis of brain metastases occurs in this group often despite effective systemic disease control. Improving the treatment of brain metastases for women with HER2+ and Triple Negative breast cancers remains drastically under-researched, and any enterprise aimed at responding to this expanding clinical need will be significant.

Background and Objectives: Current treatment options for brain mets are limited to radiation and surgery. Research into chemotherapeutic treatments for brain metastases has been hampered by several obstacles. In the first place, research has largely relied on using long standing breast-brain cell lines that have been cultured in the lab for years, and therefore do not reflect the activity of brain metastases in current patients. Fresh brain mets specimens, obtained during surgery for patients with active disease, would therefore be better for accurate study. Second, because the brain itself blocks access to molecules and drugs via the blood-brain-barrier [BBB], getting new drugs into the brain is a challenge. Third, even if new treatments can be shown to cross this barrier, they may hurt healthy brain cells along with tumor cells.

To overcome these obstacles, Dr. Jandial is obtaining fresh surgical specimens from patients with breast-to-brain cancer who have been treated by City of Hope’s neurosurgical department. These cells are being used to determine the effective concentrations of a novel drug, called GloX1, which can cross the blood-brain-barrier and disrupt a metabolic pathway that is active in the cancer cells but not in the normal brain cells. This disruption can destroy the cancer cells by causing an accumulation of toxic metabolites, while sparing the normal cells.

The development of GloX1 arose from the recognition that many tumors rely predominantly on a metabolic process called glycolysis. Glycolysis is the process by which the body breaks down glucose to produce energy, some of it in the form of ATP, an energy-containing molecule. In normal cells, glycolysis accounts for about 10% of ATP production, but in tumors which depend on glycolysis, the percentage of ATP production can be in excess of 50%. However, a consequence of this enhanced glycolysis in cancer cells is that glucose can decompose directly to yield atomic magnesium, or Mg. The interaction of Mg with proteins, lipids and DNA forms advanced glycation end products which, if not repaired or eliminated, induce programmed cell death, called apoptosis. To protect themselves against this excess Mg, glycolytic tumors that include breast-to-brain metastases [BBMs] overexpress two detoxifying enzymes that are crucial to eliminating Mg. These enzymes, known as GLO1 & GLO2, are involved in the process that converts Mg to D-lactate and prevents the process of tumor cell death from occurring.

It has been found that, without the first one, GLO1, brain tumor cells cannot scavenge for Mg atoms and cannot thereby stop them from forming the end products that induce tumor cell death. Therefore, inhibition of GLO1 is predicted to prevent this detoxification of Mg, significantly increasing the level of these end products and prompting increased tumor cell death. Furthermore, GLO1 can be targeted with the potent and selective inhibitor, bromobenzylglutathione-dicyclopentyl-ester (GloX1), which can permeate the blood-brain-barrier (BBB). Therefore, the study hypothesis is that GloX1 could selectively target breast-to-brain metastatic tumor cells without being toxic to normal brain cells.

The second part of this research will be to determine the efficacy of GloX1 for inhibiting the growth of new breast-to-brain cancer cells. This will be done by transferring the cells into mouse brains and monitoring the presence or absence of D-lactate. Establishing the efficacy of GloX1 could lead to further clinical trials.

Pre-application research: Dr. Jandial’s preliminary research demonstrated that brain metastases do employ the above metabolic adaptations for survival. Because GLO1 converts Mg into lactate, the clinical evidence for GLO1-mediated survival can be found by examining lactate levels in tumors. Elevated lactate levels are often found in tumors, and correlate with poor patient prognosis, decreased disease-free or metastasis-free survival, and shorter overall survival in a variety of cancers. The production of lactate can be non-invasively quantified by identifying its proton metabolite using Magnetic Resonance Spectroscopy (MR SPECT). Prior research demonstrated further proof of active metabolic pathways using Positron Emission Tomography (PET), which showed increased fludeoxyglucose (FDG) uptake in brain metastases relative to normal brain tissue. This body of empirical evidence suggests that GLO1-mediated detoxification is active in brain metastases, and that inhibiting it by inhibiting GLO1 is a valid therapeutic strategy.

Why This Is Important: Amplification of the HER2 oncogene occurs in 25% of primary breast carcinomas and is associated with decreased survival due to breast-to-brain metastasis. In one study, 50% of patients who had breast cancer with systemic, metastatic HER2 disease were either responding to chemotherapy or had stable systemic disease at the time that brain metastasis was diagnosed, and 50% of these patients died as a result of tumor progression. Dr. Jandial’s study is aimed at addressing this, and could lead to the development of a chemotherapeutic agent that can reduce brain mets without harming healthy brain tissue.

In addition, this research could have therapeutic implications for the management of brain metastasis overall, by exploiting the unique metabolic adaptations on which neoplastic cells depend. There is also the potential for the rapid use of these strategies in the clinical setting, because the study is exploring a neuro-oncologic application for a compound that is deliverable to the brain, and could work in a conjunction with brain radiation, the current standard of care. Furthermore, it may benefit investigators of other solid organ tumors which also utilize adaptive mechanisms for toxic metabolite detoxification, thereby contributing widely to the field of oncology.

We look forward to reporting on Dr. Jandial’s progress.


Videos: Dr. Joanne Mortimer, who is one of Dr. Jandial’s colleagues at City of Hope, discussed his research on brain mets in this interview at the 34th Annual San Antonia Breast Cancer Symposium.

Dr. Jandial also serves as a regular contributor to KTLA-TV on a variety of health and science topics. You can see some of his KTLA reports and interviews here.

Share