Myeloma 2017 Main Takeaways For Patients

Myeloma 2017 Main Takeaways For Patients from Patient Empowerment Network on Vimeo.

PEN Board member, Jack Aiello, leads an expert panel discussion on new insights, evidence, and therapies in multiple myeloma that have come out of the Myeloma 2017 in Edinburgh, Scotland. The panel includes:

  • Keith Stewart, M.B.Ch.B. Chair, Myeloma 2017 Scientific Committee; Carlson and Nelson Endowed Director, Center for Individualized Medicine
  • Thomas Martin, MD, Associate Director of the Myeloma Institute, UCSF Medical Center
  • C. Ola Landgren, MD, PhD, Chief, Myeloma Service, Memorial Sloan Kettering Cancer Center

MPN Patient Cafe® October 2017 – Value in Communicating with Friends and Family

MPN Patient Cafe® – Value in Communicating with Family and Friends from Patient Empowerment Network on Vimeo.

In this session of the Patient Cafe®, a group of MPN patients share their experience in communicating with family, friends and others about their condition. Each person has a unique perspective on how they’ve relayed information to their employer, educated their family and friends or, in some cases, kept to themselves for a period of time.

Expanding Research and Treatment Options for Advanced Prostate Cancer

Expanding Research and Treatment Options for Advanced Prostate Cancer from Patient Empowerment Network on Vimeo.

An online audience of advanced prostate cancer patients and their caregivers joined us virtually for a recent webcast in association with Seattle Cancer Care Alliance to hear the latest treatment and research news, inspiring stories of people living well with advanced prostate cancer, tips for effective communication with a healthcare team and more.

Event Slides

Notable News

Immunotherapy is back in the headlines this month with nytimes.com reporting another treatment being approved by the FDA. This second therapy is called Yescarta and is made by Kite Pharma and uses the patients own cells to create a “living drug” that is administered to the patient through a one-time injection. The patients altered cells then battle the cancer and the results from the trial are remarkable. Of the 101 patients who received the treatment in the trial 54 percent had complete remissions and 28 percent had partial remissions. Six months later 80 percent of the patients were still alive. But, as with Kymriah, the other FDA-approved immunotherapy treatment, made by Novartis, the side-effects can be severe and sometimes life-threatening. In the trials leading to the approval of Yescarta two patients died as a result of the side effects.

Yescarta has been approved for adults who have an aggressive form of the blood cancer, non-Hodgkin’s lymphoma and have undergone two rounds of failed chemotherapy. The treatment is expensive at a cost of $373,000 partly because it must be manufactured individually for each patient. An estimated 3,500 people per year in the United States will be eligible for treatment with Yescarta. You can learn more here and you can review our past updates about immunotherapy treatments here and here.

The number of changes it takes to turn a healthy cell into cancer has been one of the most argued topics in cancer research, but as reported by bbc.com British scientists have put an end to the decades-long debate. It turns out that very few mutations, a handful or less, are responsible for whether a cell becomes cancerous or not. In fact, the researchers, who studied the DNA form 7,664 tumors to pinpoint the “driver mutations” discovered that it takes ten mutations to form colorectal cancer, four mutations for breast or liver cancer, and only one mutation to form thyroid or testicular cancer.

The researchers were able to identify which mutations were dictating the formation of cancer by using Charles Darwin’s theory of evolution and the forces of natural selection saying that the driver mutations would appear more often than those that do not make the cells cancerous. Their findings could lead to the development of more drugs that specifically target the driver mutations which would improve treatment for patients. You can find out more here.

Another sweet research breakthrough reported this month at usatoday.com comes out of Belgium where researchers have been working since 2008 to better understand the relationship between cancer and sugar which in turn helps to understand something called the Warburg Effect — where tumor cells rapidly breakdown glucose to form energy that fuels tumor growth. Researchers found that sugar, or glucose, overstimulated the proteins found mutated in human tumors that cause the cells to grow faster and that may explain how the Warburg Effect relates to tumor aggressiveness.

At this point, the research is not considered a medical breakthrough and does not indicate that eating a low-sugar diet could prevent a cancer diagnosis, but it does lay the groundwork for more research and provides a little food for thought. More details can be found here and remember to check back next month to see what has evolved in Notable News.

MPN Patient Cafe® October 2017 – Tips for Managing Life After Diagnosis

MPN Patient Cafe® – Taking Back Control – Tips for Managing Life After Diagnosis from Patient Empowerment Network on Vimeo.

A panel of MPN patients and care partners discuss taking back control and share their tips for managing their new normal after diagnosis.

Fact or Fiction: 10 Common Breast Cancer Myths Busted

October is Breast Cancer Awareness Month, and while many of us may think there is already plenty of awareness of breast cancer these days, it’s quite surprising how many myths exist alongside the facts.  Some breast cancer myths still continue despite a lack of evidence. A survey found that agreement with the phrase: “It seems like everything causes cancer” is on the increase. The danger is that when people believe this, confusion and misinformation about risk factors also increase. This can lead to unnecessary worry and can even hinder good prevention and treatment decisions.  So let’s untangle the facts from the fiction by busting ten of the most common myths which persist about breast cancer.

 

Myth #1: Finding a lump in your breast means you have breast cancer

Fact: Most breast lumps are caused by benign (noncancerous) changes, cysts, or other conditions.

Breast tissue is changing all the time because of fluctuating hormone levels, especially during times of menstruation and breastfeeding. It’s important to be aware of how your breasts normally look and feel, and know what changes to look for.

Take Action: While most breast lumps will not turn out to be cancer, lumps that feel harder or different from the rest of the breast (or the other breast), or change over time, should always be checked by your doctor.

 

Myth #2: Feeling pain in your breast is a symptom of breast cancer

Fact: Most breast cancers do not cause pain in the breast (although some do).

Many women experience breast pain or discomfort in the week leading up to their period. The pain usually goes away after menstruation.  Other breast conditions, such as mastitis (an infection of the tissue of the breast that occurs most frequently during breastfeeding), may cause a more sudden pain.

Take Action: If you have breast pain that is severe or persists and is not related to the menstrual cycle, you should be checked by your doctor.

 

Myth #3: Breast cancer is a hereditary disease

Fact: Only 5% to 10% of breast cancers are thought to be hereditary. The other 90% are largely due lifestyle and environmental factors. 

The risk in a person believing this myth is that they might think there is nothing they can do to prevent breast cancer if it is already in their family. Genetic testing can help you understand your inherited risk and allow you to make choices about your future care.
Some high-risk women also choose to have a prophylactic mastectomy to decrease their risk.

Take Action:  Cancer is a complex group of diseases with many possible causes, including lifestyle factors such as smoking, diet, and physical activity. Lower your risk of developing breast cancer by maintaining a healthy weight, exercising regularly, and limiting the amount of alcohol you drink.

 

Myth #4: Only women get breast cancer

Fact: While the incidence of breast cancer in women is significantly higher than in men, men can get breast cancer.

Many people don’t think of men as having breasts. In fact both men and women have breast tissue, although men have much smaller amounts than women. According to the National Breast Cancer Foundation, men carry a higher mortality than women do, primarily because awareness among men is less and they are less likely to assume a lump is breast cancer, which can cause a delay in seeking treatment.

Take Action:  Know the signs of male breast cancer. Symptoms include a hard lump underneath the nipple and areola and color change in the surrounding area.

 

Myth #5: Breast cancer only occurs in post-menopausal women

Fact: While it is true that the older a woman is, the higher her breast cancer risk becomes, breast cancer does occur in younger women.

Although breast cancer in young women is rare, more than 250,000 women living in the United States today were diagnosed with it under age 40[1]. In young women, breast cancer tends to be diagnosed in its later stages and be more aggressive. Young women also have a higher mortality rate and higher risk of metastatic recurrence (return of breast cancer in areas beyond the breast).

There is no effective breast cancer screening tool yet for women under 40, most of whom have dense breast tissue that prevents routine mammograms from being a useful screening tool.

Take Action:  Being breast aware is very important. Become familiar with how your  breasts normally look and feel and, if you notice a change, you should see your doctor as soon as possible.

 

Myth #6: Wearing an underwire bra causes breast cancer  

Fact: Claims that underwire bras cause breast cancer have been widely debunked as unscientific.

According to the myth, wearing your bra every night or for too long daily prevents your pores from being able to breathe. Sweat accumulates and toxins build up which are believed to cause breast cancer. Another version of this myth is that wearing a bra which is too tight or sleeping in your bra can cause breast cancer. The American Cancer Society (ACS) states “we do not know of any epidemiologic studies published in scientific journals that suggest bras directly contribute to breast cancer.”

 

Myth #7: Deodorants can cause breast cancer

Fact: There is no evidence to back the claims that deodorants and antiperspirants cause cancer.

People sometimes worry about whether chemicals in common products such as cosmetics or toiletries could cause cancer, but there is no good scientific evidence to show that these products affect the risk of cancer. According to Breastcancer.org, even the strongest antiperspirant doesn’t block all perspiration in the armpit. Most cancer-causing substances are removed by the kidneys and released through urine or processed by the liver. Toxins are cleared by lymph nodes and not by the sweat glands.

Take Action: If you still have concerns about the link between antiperspirants and breast cancer, see the NCI fact sheet on Antiperspirants/Deodorants and Breast Cancer for more information.

 

Myth #8: Breast cancer is a single disease

Fact: Breast cancer is not one disease, but a complex group of different types of tumours.

Until quite recently, breast cancer was thought of as one disease, so everybody got much the same treatment, which led to overtreatment for some patients.  We now know that at a molecular level tumors act and respond to treatments differently.  Researchers have to date classified breast cancer into 10 different subtypes.  Having a more detailed system of tumor categories can help tailor treatment to individual patients and predict women’s survival more accurately.

 

Myth #9:  Stress causes cancer

Fact:  The scientific evidence that stress causes cancer is not conclusive.

Despite studies which show weak evidence of an association between stressful events and a diagnosis of cancer, many people still hold the belief that stress is a factor in causing cancer. It’s unrealistic to think we can avoid stress completely. Everyone feels stressed at some point in their lives. But long periods of stress can cause mental health problems such as anxiety and depression and can contribute to physical health problems such as high blood pressure, heart disease, and ulcers. It makes sense then to get our stress levels under control.

Take Action: Adopt healthier coping mechanisms, such as learning stress-management techniques, taking the time to eat healthily and exercising more.

 

Myth #10:  Mammograms cause breast cancer

Fact: While mammograms do involve radiation exposure, the dose used is extremely low.

A mammogram (an x-ray of the breast) currently remains the gold standard for the early detection of breast cancer. Mammograms can detect lumps well before they can be felt, and the earlier that lumps are caught, the better one’s chances for survival. While it’s true that radiation is used in mammography, the amount is so small that any associated risks are tiny when compared to the benefits.

Take Action: According to the National Cancer Institute, the standard recommendation is an annual mammographic screening for women beginning at age 40. Base your decision on your physician’s recommendation and be sure to discuss any remaining questions or concerns you may have with your physician.

To wrap up, certain myths about breast cancer, though inaccurate, can nevertheless seem to make sense when we hear them repeated often enough.  While some risk factors for breast cancer are out of our control, knowing and understanding our risks will help us make the best choices possible for ourselves and our loved ones.

[1] Young Survival Coalition statistics on breast cancer in younger women.

 


For information on galactocele, please check out the blog What is a Galactocele, and What Can I Do About It? and 12 Breast Cancer Myths And Facts You Should Be Aware Of

What’s the Hope Today for Living With Small Cell Lung Cancer?

What’s the Hope Today for Living With Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

Can I live well with small cell lung cancer (SCLC)? Why does small cell lung cancer have fewer newer treatment options like NSCLC (targeted therapies, immunotherapy)? What is on the horizon for SCLC patients?

In this program, Jerry Schreiber, 75, of Michigan City, Indiana was diagnosed with small cell lung cancer (SCLC) in October 2016 by accident after being seen for sleep apnea. Jerry shares how he is doing today following surgery and chemo. Dr. Laura Chow of Seattle Cancer Care Alliance discusses the latest in the treatment of small cell lung cancer and shares the how SCLC is different from NSCLC, while Carly Ornstein of the American Lung Association shares what resources and tools are available to SCLC patients today.

Living Well With Multiple Myeloma – How to Maintain Emotional Equilibrium

How to Maintain Emotional Equilibrium?

Living Well With Myeloma: How to Maintain Emotional Equilibrium from Patient Empowerment Network on Vimeo.

How do you maintain emotional equilibrium when living with myeloma? Can meditation be a tool to reduce watch-and-wait stress? Can meditation be useful to a care partner? Lori Puente, of California, who serves as a care partner to her husband Dave Puente, a multiple myeloma patient, attributes meditation with helping her cope and maintain stability. Watch as Lori discusses why meditation is “vital” to making her an effective care partner. We will also hear from Danny Parker, who is living with myeloma, on how he uses meditation as a coping tool.

Medical Bills, EOBs, and You

Medical bills are confusing, and often frightening. Even if it’s for something simple, the numbers add up fast, and to sometimes alarming levels. Add the Explanation of Benefits (EOB) documents you get from your insurer for the same clinical visit or hospital stay, and you can find yourself wondering how much you owe whom, and for what, exactly?

“Not A Bill”

This will be printed on all EOBs, and is the only sure way to tell which is an actual medical bill, and which is an EOB. However, an EOB can be confusing – other than that clear “Not A Bill” printed somewhere on the form.

This is one of the EOBs I got during my own cancer treatment. It’s for my lumpectomy, but the only way I’d know that is the dates on the form. The singular lack of information on what the EOB is for is one of the distinguishing characteristics of these forms, so knowing what the services were, and what your plan’s coverage is for those services, are important details. The numbers are indeed scary, given the Provider Charges of $50,231.25, and the Amount Paid of $0.00. Someone unfamiliar with EOB-ese might have a panic attack before getting to the important phrase “there is no liability on your part for these services” in Remark(s) Explanation 3.

“Statement of Account”

Here’s the summary bill from the hospital that covers the same services (my surgery), but this might only add to the potential for confusion.

The bill has slightly more detail than the insurer’s EOB, but not that much. It mostly seems to be to a series of magic incantations that take the starting amount – New Charges or Adjustments, $53,911.00 – and bring that down to an Amount Due of $50.00. My insurer paid $5,430.02, and there were Adjustments of $48,430.98, which leaves $50.00. On the one hand, hallelujah; on the other hand, what’s the story with that $48,430.98 “adjustment”?

If I didn’t have insurance, would I be on the hook for that whole $53,911.00? Probably, but it’s hard to know exactly. This is where the “chaos behind a veil of secrecy” that is healthcare pricing is most visible: hospital charges.

I learned a lesson from this bill, by the way: always ask for an itemized bill, not a summary bill. Ask for that during the admission process (if it’s a hospital), or at the medical office or testing facility during check-in.

Staying ahead of the healthcare cost curve

Here are my tips for figuring out your medical bills, and your EOBs, to ensure you get what you pay for, and only pay for what you get:

  • ALWAYS ask for an itemized bill, don’t just take a summary bill (the mistake I made with the billing for my own cancer surgery).

  • Review that bill, line by line. Make sure that it doesn’t have anything on it that you did NOT receive. Use CMS’s CPT code look-up tool to help you break down the blizzard of numbers. [CPT codes are the five digit service codes used by all medical providers; they’re in the column labeled Svc Code in the bill example above.]
  • Have your insurer’s Summary of Benefits documentation handy while you review the bill(s). That will be available on your insurer’s website.
  • Do not pay a bill until you get the EOB associated with those billed services.
  • Line up the EOB, and the bill, to make sure the dollars and the codes are correct.
  • Challenge any billed items that are for services you didn’t receive.
  • If services you received are listed as not covered by your insurer on your EOB, challenge that with your insurer’s customer service crew.

Yes, it takes work. And it’s a little crazy that the American healthcare system expects people, particularly sick people, to manage this blizzard of paper with scary dollar figures on it. But the only way to make sure you don’t pay more for your medical care than you should is to be proactive. It’s what empowered patients do.

Astellas Press Release

Astellas and Seattle Genetics Initiate Pivotal Trial of Enfortumab Vedotin for Patients with Locally Advanced or Metastatic Urothelial Cancer

Solid Tumor Antibody-Drug Conjugate (ADC) Enfortumab Vedotin to be Evaluated as a Monotherapy in Patients Previously Treated with a Checkpoint Inhibitor

TOKYO and BOTHELL, Wash.Oct. 10, 2017 /PRNewswire/ — Astellas Pharma Inc. (TSE: 4503, President and CEO: Yoshihiko Hatanaka, “Astellas”) and Seattle Genetics Inc., (NASDAQ: SGEN) today announced dosing of the first patient in EV-201, a registrational phase 2 clinical trial of enfortumab vedotin for patients with locally advanced or metastatic urothelial cancer who have been previously treated with checkpoint inhibitor (CPI) therapy. The EV-201 study will assess the antitumor activity and safety of enfortumab vedotin to support potential registration under the U.S. Food and Drug Administration’s (FDA) accelerated approval regulations.

Astellas is a pharmaceutical company dedicated to improving the health of people around the world. (PRNewsFoto/Astellas Pharma Inc.)

“Locally advanced or metastatic urothelial cancers are often aggressive and treatment-resistant. Treatment options are limited for those many patients who do not respond to chemotherapy and checkpoint inhibitors, or CPIs. In addition, there are no FDA-approved therapies for patients who progress following CPI treatment,” said Jonathan Drachman, M.D., Chief Medical Officer and Executive Vice President, Research and Development at Seattle Genetics. “Initiation of this pivotal phase 2 trial of enfortumab vedotin is a significant advance toward our goal of providing a new treatment option for patients with locally advanced or metastatic urothelial cancer.”

The primary endpoint of the single-arm, open-label trial is confirmed objective response rate (ORR), per independent review. Secondary endpoints include assessments of overall survival, progression free-survival, safety and tolerability. The study will enroll approximately 120 patients at multiple centers globally, and enfortumab vedotin will be administered three of every four weeks for the duration of treatment.

“The initiation of the EV-201 clinical trial demonstrates our continued commitment to patients living with locally advanced or metastatic urothelial cancer,” said Steven Benner, M.D., Senior Vice President and Global Therapeutic Area Head, Oncology Development at Astellas. “Our decision to move forward with this registrational trial is based on the results of our ongoing Phase 1 study, and we look forward to future clinical development milestones for enfortumab vedotin.”

The companies also plan to initiate a combination trial of enfortumab vedotin with CPI therapy in late 2017.

For more information about the phase 2 pivotal trial, including enrolling centers, please visit www.clinicaltrials.gov.

About Urothelial Cancer
Urothelial cancer is most commonly found in the bladder (90 percent). According to the American Cancer Society, approximately 79,000 people in the U.S. will be diagnosed with bladder cancer during 2017 and almost 17,000 will die from the disease. Outcomes are poor for patients diagnosed with metastatic disease, with a five-year survival rate of five percent.

About Enfortumab Vedotin
Enfortumab vedotin is an investigational ADC composed of an anti-Nectin-4 monoclonal antibody attached to a microtubule-disrupting agent, MMAE, using Seattle Genetics’ proprietary, industry-leading linker technology. Enfortumab vedotin targets Nectin-4, a cell adhesion molecule identified as an ADC target by Agensys (an affiliate of Astellas), which is expressed on many solid tumors.

Nectin-4 is highly expressed in urothelial cancers, particularly in bladder cancer. Preclinical data demonstrate that enfortumab vedotin binds to Nectin-4 on cancer cells and releases the cell-killing agent into these target cells upon internalization.

About Astellas
Astellas Pharma Inc., based in Tokyo, Japan, is a company dedicated to improving the health of people around the world through the provision of innovative and reliable pharmaceutical products. We focus on Urology, Oncology, Immunology, Nephrology and Neuroscience as prioritized therapeutic areas while advancing new therapeutic areas and discovery research leveraging new technologies/modalities. We are also creating new value by combining internal capabilities and external expertise in the medical/healthcare business. Astellas is on the forefront of healthcare change to turn innovative science into value for patients. For more information, please visit our website at https://www.astellas.com/en.

About Seattle Genetics
Seattle Genetics is an innovative biotechnology company dedicated to improving the lives of people with cancer through novel antibody-based therapies. The company’s industry-leading antibody-drug conjugate (ADC) technology harnesses the targeting ability of antibodies to deliver cell-killing agents directly to cancer cells. Seattle Genetics commercializes ADCETRIS® (brentuximab vedotin) for the treatment of several types of CD30-expressing lymphomas. The company is also advancing a robust pipeline of novel therapies for solid tumors and blood-related cancers designed to address significant unmet medical needs and improve treatment outcomes for patients. More information can be found at www.seattlegenetics.com and follow @SeattleGenetics on Twitter.

About the Astellas and Seattle Genetics Collaboration
Astellas and Seattle Genetics entered into the ADC collaboration in January 2007 and expanded it in November 2009. Under the collaboration, the companies are co-developing and have options to globally co-commercialize enfortumab vedotin.

Seattle Genetics Forward Looking Statement
Certain of the statements made in this press release are forward looking, such as those, among others, relating to the possibility that EV-201 will generate data that would be sufficient to support potential registration of enfortumab vedotin under the U.S. Food and Drug Administration’s (FDA) accelerated approval regulations, therapeutic potential of enfortumab vedotin, its possible safety, efficacy, and therapeutic uses and anticipated development activities including future clinical trials and intended regulatory actions. Actual results or developments may differ materially from those projected or implied in these forward-looking statements. Factors that may cause such a difference include the inability to show sufficient activity in the clinical trials and risk of adverse events as enfortumab vedotin advance in clinical trials even after promising results in earlier clinical trials. In addition, as our drug candidates or those of our collaborators advance in clinical trials, adverse events and/or regulatory actions may occur which affect the future development of those drug candidates and possibly other compounds using similar technology. More information about the risks and uncertainties faced by Seattle Genetics is contained under the caption “Risk Factors” included in the company’s Quarterly Report on Form 10-Q for the quarter ended August 1, 2017 filed with the Securities and Exchange Commission. Seattle Genetics disclaims any intention or obligation to update or revise any forward-looking statements, whether as a result of new information, future events or otherwise.

Cautionary Notes
In this press release, statements made with respect to current plans, estimates, strategies and beliefs and other statements that are not historical facts are forward-looking statements about the future performance of Astellas. These statements are based on management’s current assumptions and beliefs in light of the information currently available to it and involve known and unknown risks and uncertainties. A number of factors could cause actual results to differ materially from those discussed in the forward-looking statements. Such factors include, but are not limited to: (i) changes in general economic conditions and in laws and regulations, relating to pharmaceutical markets, (ii) currency exchange rate fluctuations, (iii) delays in new product launches, (iv) the inability of Astellas to market existing and new products effectively, (v) the inability of Astellas to continue to effectively research and develop products accepted by customers in highly competitive markets, and (vi) infringements of Astellas’ intellectual property rights by third parties. Information about pharmaceutical products (including products currently in development) which is included in this press release is not intended to constitute an advertisement or medical advice.


SOURCE Astellas Pharma Inc.

For further information: Contacts for inquiries or additional information: Astellas Pharma Inc., Corporate Communications, TEL: +81-3-3244-3201 FAX: +81-3-5201-7473 or Seattle Genetics, Corporate Communications, +1-425-527-4188

Patient Profile: Dana Oakes

Dana Oakes

Breast Cancer

Her diagnosis came in October 2011 during a routine mammogram. She says that when the technician came in for more pictures she knew immediately she had cancer. A biopsy confirmed malignancy and without any “debate or deliberation” Dana Oakes opted for a double mastectomy. Her surgery was scheduled for the next month. “I didn’t have a lot of of fear,” she recalls. “I said let’s get it out and get rid of it.” Oakes wasn’t interested in letting cancer get the best of her. After all, she had only recently recovered from a decade-long, debilitating battle with Lyme disease.

“It totally disabled me for many years,” she says of the Lyme disease that forced her to spend up to 20 hours a day in bed and go from full-time to part-time employment. Lyme brought with it other ailments that included burning pain in her hips, pain in her joints, profound fatigue, and flu-like symptoms. She describes the treatment and recovery as intense and says that, in a lot of ways, she feels that her chemo and cancer treatment were easier.

“I feel like I sailed through,” she says of her cancer treatment which did not leave her bedridden as her Lyme disease had. She credits an oncology team who made it as easy as possible and her husband Don who utilized the Family Medical Leave Act so he could be by her side every step of the way. But, it wasn’t all smooth sailing for Oakes. “With every doctor visit my prognosis seemed to get worse,” she says. “I was 62 years old and I had a fifty fifty chance.” Her treatment was aggressive. A month after her surgery she began chemotherapy which continued through April of 2012. She began radiation two months later, but there were several complications along the way.

Within weeks of recovering from her initial surgery she had to have an emergency appendectomy and she learned that, due to her Lyme disease, she would not be a candidate for breast reconstruction. Then during chemotherapy she got phlebitis and had to have a port put in. She also had to skip a week of chemo because her white blood cell count was too low. In addition, a heart issue developed due to side effects from one of her medications and she developed neuropathy which caused a stinging feeling in her ankles and calves that she equates to being attacked by yellow jacket wasps.

Fortunately, her heart issue was resolved within a year and, although it seems to be permanent, her neuropathy is controlled by medication. Oakes says she doesn’t miss her breasts at all and found an added bonus in that her cancer treatment may have also tackled any residual Lyme disease. “I found the chemo came as close to finally knocking it out as anything else,” she says.

This year, Oakes has graduated to seeing her oncologist only once a year, she has had no recurrence, and she lives with no evidence of disease, or NED. “I prefer to not say I’m cancer free because we never know,” she says. “But I like NED. I like him a lot.”

Understanding Advancements in Treating Myeloma

Understanding Advancements in Treating Myeloma from Patient Empowerment Network on Vimeo.

Is the future getting brighter for patients living with multiple myeloma? What advances are on the horizon, and what population of patients will benefit? On Sunday, October 8, an online audience of myeloma patients and their caregivers joined virtually to learn about the evolving treatment landscape in the myeloma, including newer agents, breakthroughs for relapsed myeloma patients, and combination therapies that are making a big difference.

The panel featured Robert Orlowski, MD, PhD , Noopur Raje, MD , Tiffany Richards, MS, ANP, AOCNP , Karen Fore and Jay Lopiccolo

Changing the Lens: Bringing Medical Records to the Patient Bedside

Editor’s Note: This blog was originally featured here as a guest blog for The Beryl Institute.


A patient was recently discharged from an exceptional hospital after a 2-day stay. During those 2 days, he saw endless doctors, attendings, residents, fellows, interns, nurses, nurse practitioners, nursing students, TV and phone service staff, physical therapists, social workers, case managers, housekeeping staff, spiritual chaplains, food and beverage staff, transport staff and discharge planners. Forgive me if I’ve missed anyone. All of these hospital employees play an essential role in a patient’s care at the hospital. There was just one person missing: someone from the medical records department. It’s time to change the lens we are using to view the importance of medical records to patient success and health.

No one visited the patient to discuss the importance of having a copy of his medical records post-discharge and maintaining a personal medical history file. No one verified authorization for the release of medical records. No one asked what medical records the patient needed upon discharge. No one confirmed what doctors needed a copy of the patient’s medical records: like his primary care doctor, his cardiologist or his neurologist. There wasn’t a single person that walked through the revolving door of the patient’s room that mentioned anything that resembled “medical records”. As a private patient advocate, this is no surprise. I’ve accompanied clients to my fair share of hospitals, medical facilities and cancer centers. I’ve yet to see a medical records representative visit with a patient during their time at the hospital. Electronic Health Records (EHR) are not the answer as they weren’t designed with the patient as the priority. Patient portals, if a facility has them, aren’t effectively adopted or utilized and have many shortcomings.

Here’s what should be happening at hospitals. A medical records representative should visit patients in the hospital with a smart tablet. The representative should discuss a patient’s care goals and discuss care coordination with respect to medical records. Medical record authorizations should be pulled up on the smart tablet and patients should be able to electronically authorize releases from their bed. At minimum, the medical records representative should verify the contact information of doctors that should be receiving a copy of medical records for follow-up. All doctors who regularly treat the patient need to have a copy of the medical records for seamless communication, coordination of care, and patient success post-discharge. At discharge, patients should at least receive a copy of every test performed during their stay at the hospital. There is absolutely no reason any patient should be discharged without a basic copy of their records. None. Release authorizations and strategic planning of the use of records for patient success need to be done at the bedside while the patient is in the hospital.  Medical record acquisition needs to become an active part of the discharge process, not a hunt thereafter. Let’s stop this insanity of needing to walk to the medical records office, usually in the basement of a different building than where the patient’s room is, to fill out a form or print one online and mail or fax it.  We need to bring the medical records department to the patient’s room while they are in the hospital’s care: a simple change with potential for profound, patient-centric results.