3 Things To Know About Your Cardiac Health During Cancer Treatment

According to recent data from the American Cancer Society, 19 million new cancer cases were diagnosed in 2020 alone. However, times are changing, and cancer patients now have access to better treatment and thus an increased chance of survival. But sometimes the cancer treatment itself has detrimental effects on the body, especially the heart. This can predispose patients to heart diseases or worsen already existing symptoms. Furthermore, chemotherapy, radiation and immunotherapy can cause abnormally high blood pressure, arrhythmia, and in extreme cases, even heart failure. It is important, therefore, not to overlook the health of the heart, as it is vital to the chances of survival when undergoing treatment for cancer. The good news, however, is that the heart can be cared for through healthy life choices, and there’s a lot patients can do to protect themselves throughout their treatment.

How The Heart Is Involved

Chemotherapeutic agents in use during cancer treatment have been extensively studied for years and have some known side effects during the course of therapy. Drugs, such as Adriamycin, which is widely used as the first line of treatment for breast cancer, lymphoma, and leukemia, are known to have the highest risk of developing heart-related symptoms, with a 2% risk for developing heart failure. Two percent might not seem significant, but if combined with another chemo agent, Herceptin, which is used for HER2+ breast cancer patients, the lifelong risk for heart failure is now increased to 8-30%. In fact, adding stress to an already weakened cardiac system can lead to sudden cardiac arrest, which occurs when the heart stops beating suddenly, and is the leading cause of death in the US.

Becoming More At Risk Without Treatment

Although the side effects of some therapies are frightening, it is necessary to weigh up the pros and cons of undergoing chemotherapy. The cardiac problems are rarely present in those undergoing cancer treatment, but often enough that cardiac care and prevention should be focused on before the beginning of therapy. Over time, inflammation can lead to sudden irritation in the cardiac system, which can cause the formation of plaques and blood clots. This will also lead to triggers of a sudden heart attack.

Protecting the Heart During Cancer Therapy

Even with the advancements in medical innovations, treating cancer is not yet a precise science. Before chemotherapy can be authorized to begin by your oncologist, your medical history and results from various tests will be discussed by the medical team to pursue the most efficient treatment. Chemotherapeutic plans are specially tailored to each patient to ensure the best possible outcome and to not interfere with other conditions. During the course of treatment, regular check-ups to monitor the heart for potential conditions are vital so that problems can be found and addressed early on. Healthy lifestyles such as nutritious eating habits, daily exercise, and keeping blood pressure under control are additional, yet vital, ways to keep your heart healthy.

Detecting cardiac symptoms early is key in the treatment of heart problems. To protect your heart during and after treatment, pay attention to your entire body and maintain regular check-ups with your doctor. Not only will doing so give you peace of mind, but it will also pave the way for living a longer and healthier life.

What You Need to Know Before Choosing a Cancer Treatment

What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.

If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.

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Digitally Empowered™


Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.


Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.


Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.


All great points, Dr. Jones! We hope you can put this information to work for you. Visit to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 

This program is supported by Blueprint Medicines, and through generous donations from people like you.

September 2020 Notable News

There’s a lot to learn this month. Cancer researchers have been busy as bees developing innovative treatments, creating new diagnostic blood tests, and uncovering new information to protect patients. However, it is actual bees that just may save the day.

Prostate Cancer Awareness

Before we get to the bees, we’d be remiss if we didn’t acknowledge that September is prostate cancer awareness month. Prostate cancer is the second most common cancer in American men and while most men who get prostate cancer won’t die from it, it can be a serious disease. Fortunately, over the summer, the Food and Drug Administration (FDA) approved two drugs to treat patients whose prostate cancer has metastasized or stopped responding to treatment, says The drugs, olaparib and rucaparib, are targeted therapies taken as pills. The drugs work by blocking the activity of a protein known as PARP and have proven effective in treating advanced cases of prostate cancer and increasing survival rates. You can learn more about the drugs here and here.

Cancer Screenings

Another thing to be aware of this month is that not all cancer screenings are necessary, especially among older adults, reports When you reach a certain age, screenings are no longer recommended. For example, you may not need colorectal screenings after age 75, cervical cancer screenings after age 65, and breast cancer screenings after age 74. Once you have aged out of the recommended timelines, screenings can pose a risk of over-diagnosis, which is when asymptomatic cancer that would have otherwise gone unnoticed and not caused a problem is diagnosed and treated unnecessarily leading to a reduced quality of life with little to no benefit. Researchers found that 73 percent of women were over screened for breast cancer, 45 percent were over screened for cervical cancer and 59 percent of men and 56 percent of women were over screened for colorectal cancer. Older adults should talk to their doctors about whether cancer screenings are right for them. You can read more here.

Of course, when it comes to diagnosing some cancers, such as lung and pancreatic cancer, the more screening the better and researchers are finding new ways to make diagnosis easier. A blood test for lung cancer was developed by Resolution Bioscience and will be offered by LabCorp, according to The test searches for non-small cell lung cancer and is being studied in an ongoing trial. Learn more about the blood test here.

Cancer Testing and Treatment

Researchers are also using a blood test to check for pancreatic cancer and may have found a way to detect it early when it is treatable, reports Using biological information found in the bloodstream researchers can determine whether the pancreas is healthy or shows signs of cancer. Because symptoms for pancreatic cancer don’t often appear until the disease has progressed it is often detected late and when treatment is less effective. Find more information about this new promising testing here.

If all this testing does result in a cancer diagnosis, it’s encouraging to know that new, more effective treatments are being discovered all the time. Researchers have now found a way to make cancer cells self-destruct, reports They have developed a new approach that turns a nanoparticle into what they are calling a Trojan horse. The nanoparticle is coated with an amino acid that cancer cells need to survive and grow. Thanks to the coating, the nanoparticle can get into the cancer cells where it stimulates a reactive molecule that causes the cells to destroy themselves but doesn’t affect the healthy cells. The process has been successful in lab experiments and in reducing tumor growth in mice. Scientists are working to make the process more refined to target specific cancer types. Find out more here.

Honeybee Venom

Finally, here’s what all the buzz is about. It turns out that honeybee venom can be used to treat cancer, reports Melittin, a molecule found in the honeybee venom, not only puts the sting in a bee sting, but it also wipes out cancer. Scientists do not fully understand how it works, but they have found that melittin is toxic to tumors in melanoma, lung, ovarian, and pancreatic cancers. Researchers are also studying how melittin affects breast cancers and have found that melittin kills the cancers cells of two of the most aggressive and hard to treat breast cancers – triple negative breast cancer and HER2-enriched breast cancer. The melittin worked on the cancer cells quickly, within 60 minutes, and without harming normal cells. Interestingly, the venom from bumblebees, which does not contain melittin, did not kill the cancer cells. Learn more about how bee venom affects cancer here.

Notable News: December 2019

While 2019 is nearing its end, there are all kinds of new beginnings in cancer research. Scientists are finding new and exciting discoveries that could lead to fine-tuned cancer treatments specific to each person, each type of cancer, and each response the body has to treatment. Using tropical flowers, mitochondria, and an off switch for cells, researchers keep finding new paths to treatment for even the most difficult and deadly cancers. Of course, that doesn’t mean we need to forget about prevention; there continues to be new information about how our lifestyles could affect our cancer risk, right down to our hair color.

A trip to the hair salon might mean an increased cancer risk, reports A study by the National Institutes of Health shows that permanent hair dyes and chemical hair straighteners might put women at an increased risk for cancer. The study found that women who used permanent hair color were nine percent more likely to get breast cancer. Black women, though less likely to use hair dye, had the most notable risk. They showed a 45 percent higher risk of developing breast cancer. Women who used hair straighteners had an 18 percent higher risk of breast cancer. Frequency of use posed a problem, too. Hair products can contain more than 5,000 chemicals, including formaldehyde, which is a known carcinogen. This study’s findings aren’t enough to draw a definitive link between the hair products and breast cancer, and no warnings have been issued about using hair products, but the findings do indicate that more research needs to be done to determine whether or not there is a connection. Read more about this study here.

Wouldn’t it be great if you could just switch off a cell to prevent tumors from growing and spreading? It might be possible, reports Researchers have discovered what could be a new cancer immunotherapy treatment for patients who haven’t responded to other types of immunotherapy. The study, done on mice, shows that many tumors display the molecule MR1, which keeps the body from fighting the cancer cells. Researchers found that when they gave the mice an antibody that blocked the MR1 cell, cancer fighting cells could come in to slow cancer growth and prevent it from spreading. With this new information, doctors would be able to screen patients to see if they have the MR1 cell, and determine if they would respond to the potential new immunotherapy. Researchers now want to apply what they’ve learned to human tumors. You can learn more about the findings here.

Another treatment-related discovery is that there might be an alarm at the molecular level that serves as an alert when cancers have become resistant to treatment, reports Mitochondria, which are present in most cells, can sense DNA stress which can indicate when cancer cells have developed resistance to chemotherapy, researchers found. The findings could lead to new cancer treatments that would prevent chemotherapy resistance, making it more effective. See the details about this discovery here.

Also from, we’ve learned that a tropical flower might hold the answer to treating pancreatic cancer. The plant, Uvaria Grandiflora, grows in Malaysia, Indonesia, Thailand, and the Philippines, and its flower contains a chemical that researchers have used as a model to create three new molecules which they hope could treat pancreatic cancer. All three of the molecules have shown that they kill pancreatic cancer cells in a Petri dish, and while the potential drug trials are more than five years away, these molecules could become new drugs for treating pancreatic cancer that would be more effective and less toxic than current treatments. You can find more information here.

As you say goodbye to 2019, we hope you will continue to say hello to Patient Empowerment Network. We will continue to provide you the latest in cancer research news as we continue in our mission to empower patients, family members, and caregivers in innovative ways. We’re particularly proud of our digital sherpa™ program, which you can learn more about at Learn how the sherpas are used to enhance the experience of patients and nurses as told by Regina White, RN, MS, OCN at Moffitt Cancer Center in Tampa, Florida. Check it out here.

Happy, Healthy, New Year to all!

The Right Dose

This blog was originally published by Cancer Today by Kate Yandell here.

Researchers want to find out when cancer patients can benefit from receiving lower doses of drugs or radiation, shortening treatment or skipping certain treatments altogether.


OVER A SPAN OF 15 YEARS, ​Liza Bernstein was diagnosed with three separate primary, early-stage breast cancers. Even though she was treated by the same oncologist throughout, the treatments she received varied with each diagnosis.

​Bernstein, who lives in the Los Angeles area, was first diagnosed with hormone receptor-positive breast cancer in 1994, when she was 29 years old. She recalls that her doctors were pleased to be able to do a lumpectomy, only removing part of the breast, instead of a mastectomy as would once have been standard. However, her surgeon removed about 20 lymph nodes from her armpit, and she received both radiation and chemotherapy.

In the course of receiving her second diagnosis, a hormone receptor-positive cancer in her opposite breast, in 2005, Bernstein underwent a sentinel lymph node biopsy, a less invasive procedure that requires surgeons to remove only a few lymph nodes in areas where the cancer is most likely to have spread.

Bernstein was also able to get testing with a product called Oncotype DX, which measures gene expression in breast tumors and helps estimate the likelihood that chemotherapy will prevent an early-stage, hormone receptor-positive cancer from recurring. The test, released in 2004, helped Bernstein and her oncologist make the difficult decision to skip chemotherapy in 2005, due to little predicted benefit. Bernstein received a lumpectomy, radiation and the hormone therapy tamoxifen. Conversely, when she was diagnosed with another hormone receptor-positive cancer in 2009, genomic tumor testing helped them decide to include chemotherapy, along with a double mastectomy and tamoxifen, in her treatment.

Advances in cancer research can mean making patients’ treatment more onerous and complex. But some of the changes in Bernstein’s breast cancer treatment over the years reflect de-escalation—the process of decreasing the intensity or duration of a treatment, thus reducing side effects and cost, while maintaining the treatment’s effectiveness.

Today, researchers are investigating whether they can identify patients—using genomic tumor testing, imaging of the cancer or other methods—who can receive less intense treatment. Treatment de-escalation aims to spare patients the burden of unnecessary treatments and side effects.

“The key is we want to give people the right treatment that they need without treating them excessively, which just produces too much toxicity,” says Eric Winer, a medical oncologist and chief of the Division of Breast Oncology at the Dana-Farber Cancer Institute in Boston.

Treating the Right Patients

Treatment de-escalation has been successful primarily in cancers where the survival rate is high. “When you have a situation where mortality from a given malignancy is high, then it’s pretty hard to think about backing off [from treatment],” Winer explains.

The effects of treatment can last long after chemotherapy or radiation is completed. For example, 87% of people in the U.S. diagnosed with Hodgkin lymphoma, which until the 1960s was usually fatal, live five years or more. “The issue for this group of people, who are often diagnosed in their 20s and 30s, is that they have a long life ahead of them,” says Peter Johnson, a medical oncologist who specializes in lymphoma at University Hospital Southampton in England. The radiation and chemotherapy typically given for Hodgkin lymphoma can result in serious side effects, including heart disease, second cancers and infertility.

Over time, doctors have adopted techniques for delivering radiotherapy to Hodgkin lymphoma patients that increasingly spare normal tissues from damage, Johnson says. Most recently, researchers have learned that they can perform a form of imaging, called 18F-fluorodeoxyglucose PET, to determine early on whether a patient’s Hodgkin lymphoma is responding to chemotherapy. If the scan indicates a good response, the patient may be able to skip later radiation therapy or receive a less intensive chemotherapy regimen.

“In some ways, it’s a reflection of how successful modern oncology has been that we’re thinking about these things,” Johnson says of the topic of de-escalation.

The rise of genomic testing, among other factors, has contributed to a decline in chemotherapy use for patients with early-stage breast cancer whose disease is driven by hormones. With Oncotype DX and similar tests, patients with hormone receptor-positive, HER2-negative breast cancer can learn how likely they are to benefit from chemotherapy. Their score can help determine whether their drug treatment after surgery should include both chemotherapy and hormone therapy or whether just hormone therapy is enough.

Researchers are investigating de-escalation strategies for patients with early-stage HER2-positive breast cancers as well. These patients are often treated with HER2-targeted therapy and a multidrug chemotherapy regimen. Winer’s research shows that patients with small HER2-positive cancers that have not spread to the lymph nodes can safely use a de-escalated ​chemotherapy regimen that includes just one drug, paclitaxel, alongside targeted therapy.

Challenges of Stepping Back

Despite some successes in de-escalation, it can be easier to intensify treatment than to take treatment away. This is partly because it is difficult to prove that taking away treatment is not going to harm patients—a different statistical challenge than showing that a therapy is significantly better than standard care.

For example, in 2004, researchers discovered that patients with stage III colon cancer lived longer if oxaliplatin was added to their chemotherapy regimen. The additional chemotherapy drug can lead to peripheral neuropathy, and the effects are cumulative as therapy continues. An international consortium of researchers published a study in the New England Journal of Medicine​ on March 29, 2018, pooling the results of six randomized clinical trials that included 12,834 participants. The trials investigated the practice of shortening chemotherapy after surgery from six to three months for these patients.

“We thought with such a large number it would be very easy and we’d get a clear answer, [but] we haven’t got as clear an answer as we thought we would,” says Timothy Iveson, a medical oncologist at University Hospital Southampton who co-authored the study.

The study did not meet pre-specified statistical benchmarks to determine that a shorter period 
of chemotherapy was not worse than standard chemotherapy for the patients in the trial in general. However, the survival difference between patients using shorter versus longer chemotherapy (six months versus three months) was small, Iveson says, and the decrease in side effects with shorter chemotherapy was large. And for some patients, treatment for three months was sufficient. Cancer treatment guidelines now recommend the shorter chemotherapy regimen as an option for certain patients with low-risk stage III colon cancer.

New information about cancer subtypes can also spur de-escalation. But even when it’s clear that de-escalation is necessary, it can take time to settle on the right strategy, as shown by the experience of researchers trying to back off treatment for head and neck cancer caused by the human papillomavirus (HPV). “There’s been an epidemic of oropharyngeal cancers that are related to HPV,” explains Joshua Bauml, a medical oncologist at the Hospital of the University of Pennsylvania in Philadelphia. “These cancers have a much higher cure rate, and that’s wonderful, but the issue is that our treatment paradigm is still based upon older cancers with a different biology.”

Standard treatment for patients with advanced head and neck cancer—originally developed for patients with smoking- and alcohol-associated cancers—involves some combination of surgery, radiation and chemotherapy. But these treatments can cause troubling side effects, including difficulty swallowing, dry mouth, problems with speech and changes in taste.

One approach for reducing toxicity of chemotherapy for these patients was to replace the chemotherapy drug cisplatin with the targeted therapy Erbitux (cetuximab), in an attempt to spare patients the side effects that cisplatin can cause when combined with radiotherapy. However, recent clinical trial res​ults have shown that patients with HPV-positive oropharyngeal cancer treated with Erbitux have shorter survival than those treated with cisplatin and have similar rates of side effects, indicating that this is not a good de-escalation strategy.

Early trials of approaches to reduce doses of radiation ​or chemotherapy for patients with HPV-related oropharyngeal cancer have shown promise, Bauml says. However, he urges clinicians to wait for further data before adopting new protocols for HPV-related oropharyngeal cancer. “If a head and neck cancer metastasizes, it is incurable,” he says. “It’s really essential that when we move towards treatment de-escalation, this is done through robust clinical trials.”

Getting Targeted

The term de-escalation is used most often to describe efforts to reduce harms from old modes of therapy, including surgery, radiation and chemotherapy. But researchers are also working to understand the right doses of medication for patients being treated with newer targeted therapies and immunotherapies.

A study in the July 2018 issue of Cancer, for instance, showed that Sprycel (dasatinib), a type of targeted therapy called a tyrosine kinase inhibitor, is effective at a reduced dose in treating chronic myeloid leukemia (CML). The lower dose appears to cause fewer dangerous side effects, such as buildup of fluid near the lungs, and costs around half as much. Other tyrosine kinase inhibitors have also been shown to be effective in treating CML at reduced doses, says study co-author Hagop Kantarjian, an oncologist who specializes in leukemia at the University of Texas MD Anderson Cancer Center in Houston.

Traditional methods of determining doses for cancer drugs aren’t always ideal for dosing targeted therapies, Kantarjian explains. Clinical trials for chemotherapy ramp up doses in people until the highest dose with acceptable side effects is found, a measure known as maximum tolerated dose. Targeted therapies, in contrast, can be effective at doses much lower than the maximum tolerated dose. Researchers are still trying to find the best strategies for determining dosing of targeted therapies.

Researchers are also investigating whether they can reduce the time that patients are on targeted therapies and immunotherapies. For instance, “there are no clear, specific guidelines on exactly how long to treat patients with immune therapy in cancer,” says Michael Postow, a medical oncologist at Memorial Sloan Kettering Cancer Center in New York City who treats patients with melanoma.

Scientifically, it makes sense that patients who respond to immunotherapy drugs might be able to stop taking them at some point, says Janet Dancey, scientific director of the Canadian Cancer Trials Group and a medical oncologist at Queen’s University in Kingston, Ontario.

Most cancer drugs work by directly killing or inhibiting the growth of cancer cells. In contrast, immunotherapies work by stimulating the immune system to attack cancer. It’s possible that once the immune system has been activated, continued administration of the drugs isn’t necessary.

Dancey’s organization is currently enrolling patients for the STOP-GAP study, a randomized trial looking into whether melanoma patients who have responded to a class of immunotherapy drugs called PD-1 inhibitors can stop treatment or whether they would benefit from staying on treatment indefinitely.

There are multiple reasons to stop treatments, says Postow. “People would want to stop mostly to get their lives back to themselves, for flexibility in travel and work. … And I think the idea of being under treatment is still a reminder that there is something wrong with the patient.”

There are also financial implications: Checkpoint inhibitors have generally debuted with list prices of $150,000 per year or more. And treatment comes with other costs like time taken off from work, Postow says.

Currently, Postow works with his patients to make individual decisions on whether to stay on immunotherapy after all evidence of active cancer disappears or after two years of improvement on the treatment. He hopes further research will make choices easier for patients. “As you can imagine, there is a lot of emotional decision-making around this issue, too, which is reasonable in a setting where we don’t have strong science to specifically guide us,” he says.

A Lower Dose of 
Financial Toxicity

Researchers are​ looking into whether some drugs are just as effective when taken at a reduced​ dose.

​A Shared Decision

Whether patients are considering skipping chemo​therapy or stopping immunotherapy, having thoughtful discussions about benefits and risks of treatments is key. That includes helping patients understand side effects, says Iveson, who studied shortening chemotherapy for colon cancer patients. For instance, rather than telling patients they might experience peripheral neuropathy, doctors should explain this can mean not being able to button a shirt or feel one’s feet.

“The challenging part is that, for both doctors and patients, there’s a tendency to be risk averse,” Winer notes. People don’t like to feel they are leaving potential benefits of treatment on the table. Doctors sometimes underestimate side effects and overestimate treatment benefits, he says, and “nobody wants to be judged as having done something wrong by backing off if there’s a bad outcome.”

For Bernstein, the lengthy decision-making process that came with skipping chemotherapy after her second cancer diagnosis was difficult because there wasn’t a clear-cut answer of what to do, at least until she got the Oncotype DX test results. But she says she ultimately was glad to have had in-depth discussions with her doctor. Despite progress in treatment de-escalation, Bernstein hopes more can be done both to eliminate unnecessary treatment and to treat cancer more effectively.

“Over time there have been strategies that have come into play and have helped, in a sense, to do less harm, but by no means do they do no harm,” Bernstein says. “I want to make that clear.”​ 

Kate Yandell is the digital editor of Cancer Today.


Is Chemobrain Real? Coping With Cancer-Related Cognitive Changes

A familiar name on the tip of your tongue, keys misplaced, a train of thought derailed in the middle of a sentence. If what I’ve just described sounds familiar, you may be experiencing symptoms of “chemobrain” – a name for the cognitive (how you process and recall information) difficulties associated with cancer treatment.

Although one of the most frustrating side effects of chemotherapy, not long ago, the medical profession was skeptical when patients who had completed treatment complained of a kind of mental haze or fog. Today, despite some lingering skepticism, research studies confirm what patients have long reported – that chemobrain is a real issue for people living with and beyond cancer.

The first of these studies [1] which was published in 2011 was conducted at Stanford University and used functional MRI imaging (fMRI) to compare the brain images of healthy women and women with breast cancer. The study found that not only did brain activity differ, but that those patients who had undergone chemotherapy had additional specific differences and decreases in executive function – the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully.

Signs and Symptoms of Chemobrain

A more formal term – post-cancer cognitive impairment (PCCI) – is used by researchers to describe a group of symptoms, which include slow mental processing, difficulty concentrating, organizing, and multitasking. Things you could do easily before cancer are now more difficult.

Symptoms can also include:

  • memory loss – forgetting things that you normally remember
  • tiredness and mental fogginess
  • struggling to think of the right word for a familiar object
  • difficulty following the flow of a conversation
  • confusing dates and appointments
  • misplacing everyday objects like keys and glasses

These symptoms can be especially frustrating when you are at work or in social situations. “It can be difficult to explain to others what we are going through,” explains therapist Karin Sieger [2]. “I like to use the example of a computer. If our brain was a computer used to running 6 apps and multi-tasking for example on Facebook, Twitter, watching TV and doing WhatsApp at any given time, with chemo brain our brain may be able to use one app only, and even then only for a short period of time. It will also take a lot longer to re-charge.”

What Causes Chemobrain?

It’s still not clear how many people with cancer get chemobrain or which drugs cause it. People who had high doses of chemotherapy may report memory problems, but even those who had standard doses have also reported memory changes.

Cyclophosphamide, Adriamycin, 5-FU, and Taxol seem to be particular culprits, but there are others that can cause the condition.  Tamoxifen, and to a lesser degree, aromatase inhibitors may also have a negative effect on cognition.

Research also suggests that a combination of factors, including the stress and anxiety of a cancer diagnosis and side effects of treatment such as fatigue, anaemia, sleep disturbances or hormonal changes can also play a part.

Who Gets Chemobrain?

When it comes to answering the question of which patients get chemobrain, studies have reported a wide range of different figures, ranging from 17% to 60%. The condition can affect people with different types of cancer and at different times. It affects men and women of all ages, although people might be more likely to have the condition if they are older or already have problems with memory or anxiety and depression.

Can I Reduce The Symptoms Of Chemobrain?

There are several things that you can do to help you cope better with chemobrain.

Make sleep a priority

Research has found that not sleep deprivation can affect our ability to commit new things to memory and consolidate any new memories we create. Getting enough sleep is a state that optimizes the consolidation of newly acquired information in memory. [3]    Even a short nap can improve your memory recall.

Take regular exercise

Studies have shown that regular exercise can improve memory as physical activity will increase blood flow to your whole body, including your brain. [4]    There are many benefits to exercise. Not only does it help reduce the symptoms of fatigue (which exacerbates cognitive processing) exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.  Easing stress and elevating mood may also ease chemobrain symptoms.

Keep your mind active

Just as physical activity helps keep your body in shape, mentally stimulating activities help keep your brain in shape too. Doing crosswords, sudoku and puzzles will help to keep your mind exercised. You may also like to try computer pro­grams that are designed to improve memory and attention span.

Practice mindfulness meditation

Research has shown that practicing mindfulness can improve memory recall in just eight weeks. Meditation has also been shown to improve standardized test scores and working memory abilities after just two weeks. [5]

Eat more berries

More research is needed in this area, but some studies show that phytochemical-rich foods, such as blueberries, are effective at reversing age-related deficits in memory. [6] Blueberries are a major source of flavonoids, in particular anthocyanins and flavanols. Although the precise mechanisms by which these plant-derived molecules affect the brain are unknown, they have been shown to cross the blood brain barrier after dietary intake. It’s believed that they exert their effects on learning and memory by enhancing existing neuronal (brain cell) connections, improving cellular communications and stimulating neuronal regeneration.

Ten Tips to Help You Cope With Chemobrain

Below you’ll find a list of everyday self-help tips which will help restore your confidence at work and in social situations when you feel brain fog descend.

  1. Lists are your friend. Write daily lists about the errands you need to run, things you need to buy and where you have left important things.
  2. Carry a notebook with you to keep track of daily activities and things you want to remember. Make use of daily planners, wall planners, smart phones, and other organizers.
  3. Put sticky notes as reminders in places where you will easily see them.
  4. Say information you want to remember out loud five or six times to help fix it in your memory.
  5. Try linking a visual image with the information you want to remember.
  6. Leave a message on your answering machine or set an alert on your phone to remind yourself of something important.
  7. Get in the habit of keeping everyday items like your keys and cell phone in a regular place for easy retrieval, for example a basket or table by your front door.
  8. Avoid trying to do too many things at the same time. Concentrate on one task at a time and don’t multitask. Put your phone away, close your email applications and any unnecessary browser windows on your computer. Concentrate fully on the one task you need to complete.
  9. Plan ahead. List your 3 most important tasks to deal with the night before, so you can hit the ground running the next day.
  10. Do the most difficult tasks of the day first thing when you are most alert.  If a task is too big to complete in one day, divide it into smaller tasks to be spread out over several days.

When To Seek Further Support

For most patients, chemobrain improves within a year after completing chemotherapy, although around 10-20% of people may have long-term effects even ten years after treatment. However, these side effects should be stable. If you have tried self-help techniques but the symptoms are not improving, you should speak with your doctor who may refer you to a neuropsychologist.

Neuropsychologists are psychologists with special training that prepares them to help people experiencing trouble in areas such as attention, new learning, organization and memory. A neuropsychologist will do a complete evaluation and determine if there are any treatable problems such as depression, anxiety, and fatigue.  It’s important to make sure you’re receiving treatment for any depression, anxiety, or sleep problems. Make sure you also have had your thyroid, vitamin D and B12 levels checked.

Chemobrain is a frustrating side-effect of treatment and a reminder that cancer isn’t done with us when treatment ends. It’s important to know that there is help available. Don’t ever feel you are alone when it comes to dealing with the ongoing effects of cancer. Talk to your doctor and reach out to your online patient community for support and practical tips on coping with chemobrain.


[1] Kesler, S.R. et al. Prefrontal Cortex and Executive Function Impairments in Primary Breast Cancer, Arch Neurol. 2011;68(11):1447-1453

[2] Karin Sieger

[3] Born, J., Rasch, B., & Gais, S. (2006). Sleep to Remember. The Neuroscientist, 12(5), 410–424. 

[4] Erickson, K.I, et al. Exercise training increases size of hippocampus and improves memory Proceedings of the National Academy of Sciences Feb 2011, 108 (7) 3017-3022.

[5] Mrazek, M. D., Franklin, M. S., Phillips, D. T., Baird, B., & Schooler, J. W. (2013). Mindfulness Training Improves Working Memory Capacity and GRE Performance While Reducing Mind Wandering. Psychological Science, 24(5), 776–781.

[6] The Peninsula College of Medicine and Dentistry. “Getting Forgetful? Then Blueberries May Hold The Key.” ScienceDaily. 12 April 2008.



Facing Forward: How to Move On After Cancer Treatment

When you go through something as stressful, traumatizing, and life-altering as cancer, you may come out on the other end of the tunnel feeling like you were just put through the spin cycle. There’s no “normal” way to respond to a cancer diagnosis, treatment, or remission prognosis, and you should never force yourself into taking on one specific emotion or perspective. You may feel angry, sad, scared, hopeful, or joyous, and all are perfectly acceptable responses to have.

Regardless of how the experience left you feeling, it’s important to work at moving on and processing it in a healthy way. Here are a few ways to help you do it.

Measure Your Mental Health

You’ve spent the last several months or years caring for your body to the point of exhaustion. Now it’s your brain’s turn. Depression, anxiety, post-traumatic stress, and cancer fears are quite common among survivors. In fact, between 18 and 20 percent of adult cancer survivors report symptoms of anxiety[1], while almost 80 percent of survivors experience some level of fear of recurrence. It’s vital that cancer survivors and patients alike are constantly looking inward and taking daily measurements of mood and general well-being. If you experience any persistent, negative feelings, be sure to seek out advice from a licensed mental health professional.

Focus on Daily Self-Care

Because your daily life was thrown completely off track during treatment, it can be hard to settle back into a healthy routine when it’s all over. Implementing certain self-care practices into your day-to-day life can help you stay mindful and prevent you from slipping into prolonged states of anxiety or depression. It will help you immensely to pick up healthy self-care practices, such as yoga, meditation, or long evening baths. Integrating weekly or bi-weekly social time will also help quite a bit, especially if you’re spending time with people who share similar interests or experiences.

Work on Rebuilding Self-Confidence

Though we’re ever-grateful that they exist (and save thousands of lives each year), chemotherapy, surgery, and radiation take a massive toll on our bodies. They leave us looking and feeling burnt out and exhausted, often grinding the last little bit of self-confidence we have into a sad, lifeless pulp. Even if you’ve never been a particularly vain person, your life post-cancer is time to help you regain your self-worth at every turn, and it’s perfectly okay to spend some time making yourself feel beautiful both inside and out! Here are some great ways to do it:

Regrow a Full Head of Hair

If you lost your hair during chemotherapy, there are a few cutting-edge hair loss treatments to consider. Though they’ve only been cleared to treat hair loss due to androgenetic alopecia by the FDA, many people find that low-level laser therapy devices help hair to grow back [2] quicker and healthier after treatment. Luckily, while it takes a little bit of time, most cancer patients are able to fully grow back their hair.

Work on Getting Back to a Healthy Weight

Cancer patients know that the constant barrage of chemicals and harsh treatments can seriously mess with our weight. Weight loss is one of the most common symptoms of both cancer and treatment, with between 40 and 80 percent of patients reporting weight loss [3] and cachexia (wasting) from diagnosis to advanced treatment. Working with your doctor or a dietician will help you return to a healthy weight in a safe way. He or she will design a diet and, if needed, prescribe medication to help you manage your weight.

Treat Your Skin and Nails

Hair isn’t the only physical feature that takes a beating during the treatment process. Chemotherapy and radiation can leave skin red, dry, itchy, or discolored, and it tends to leave nails cracked, infected, or yellow. A full-blown spa day is in order after you’ve recovered from your final treatment. Make sure to also see a dermatologist, especially if you’ve seen any serious changes in your skin since you were diagnosed. 

Connect with Other Survivors

Building up a strong social network is vital to staying happy and positive post-cancer, and nobody will help you get there faster than fellow survivors. Like anything on this list, make sure you ease into it and wait until you’re fully ready. Having to recount your experience before you’ve fully processed it can worsen symptoms of post-traumatic stress, depression, and anxiety. But, after a period of time, it will help you feel stronger and more secure when you have a group of friends or family members to share your experience with. You can use the American Cancer Society’s resources database [4] to find specific support groups in your area.

Get Enough Exercise

Medical experts consistently say that exercise is among the most important components of a healthy life during and after cancer. One of the biggest reasons for this is that, though it sounds counterintuitive, getting physical can help reduce the ever-present cancer fatigue while also helping you get better sleep, reducing symptoms of depression and anxiety, and helping you build back muscle strength that may have deteriorated during treatment. Just be sure to follow all medical advice as you ease back into exercise, especially if you’ve recently had surgery.

Volunteer for a Research Foundation

If you’re experiencing any feelings of sadness, anger, or hopelessness, it can really help you to get involved in cancer-specific organizations that donate to research efforts. Finding a cure or at least more viable treatment options for this devastating disease is certainly on the horizon, but getting there takes a lot of money, resources, and effort. Getting involved can help you connect with other survivors and hopeful people, which will lead you into a deeper state of happiness and optimism.

Let Yourself Experience Loss, Pain, and Joy

Again, there’s no “correct” way to experience cancer, no matter if you’ve just been diagnosed or have just finished your final round of treatment. The most important thing you can do is to constantly take stock of your feelings, being careful not to suppress them, and do everything you can to stay healthy both mentally and physically every step of the way.






Tips on Finding a New Job or Changing Career after Cancer Treatment

In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration.  In the final part of this series, I’m turning my attention to finding a new job after cancer treatment has ended.

There are a number of reasons why you might be looking for a new job after cancer. Perhaps you crave a fresh start, somewhere where you’re not known as the co-worker with cancer.  Or perhaps you need more work flexibility – such as the option to work part-time –  but your current employer isn’t in a position to make the adjustments you need. Or maybe you want to change career, switching direction towards something more meaningful and fulfilling.

Whether you’re looking for a new job or considering a new career direction, this month’s article has plenty of practical advice to help you.

1. Get Clarity on Your Direction

A good place to start is by getting clear on your new goals, financial needs and current skills and abilities. Grab a pen and some paper and take some time thinking about your responses to the following questions.

  • What are my core skills and strengths? Am I using them to their fullest in my current (or previous) job? Which skills and interests from my previous jobs will transfer over to a new position or field?
  • What new insights or skills have I gained through cancer? Do I want to be able to use these in my job?
  • Have my career goals changed? Do I want to work in a similar job but with more work-life balance? Or do I want to try something new?
  • Do I have the required skills for a new career interest? Will I need to retrain? How will this impact me financially?
  • Do I have the stamina to take on something new? Do I need to consider the impact of any long term side-effects from treatment on my ability to work?

2. Update Your Resume

The next step is to get your resume in order.  If it’s been several years since you last applied for a job, you may need to take into account that resume writing has changed quite a bit in the past decade. For example, the chronologically based resume (listing job titles, companies and dates in chronological order), while still popular, is giving way to a more dynamic skills-based one.   This is good news if you want to work around a gap in your employment history.  For a skills-based resume, you will create a relevant summary of your skills, career accomplishments and career goals and position this directly below your name.  You should aim to provide an example of an area of accomplishment related to each specific skill.

Pro Tip: When it comes to including employment dates, don’t include months in the dates, only years. This helps narrow the work gaps.

3. Develop Your Network

Make a list of everyone you know who is currently working in your industry or the industry you’d like to be in. Take a strategic approach by setting achievable goals for the number of people you want to connect with every week. Reach out to them and tell them about your plans to find new work or change career direction. Ask them to keep you updated of any new job openings and leads. Hiring managers are more willing to consider you for an interview after a personal recommendation.

Pro Tip: When it comes to building your professional network there’s no better tool than LinkedIn. LinkedIn multiplies your existing personal and professional networks by making the connections of your connections available to you at the touch of a digital finger.

4. Optimize Your LinkedIn Profile

Your LinkedIn profile is the cornerstone of your professional brand online. While you may already have a profile on the platform, is it optimized for a job search?   LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform. Everything you do on LinkedIn begins with your profile. Yet many professionals still treat their LinkedIn profile as little more than a place to park their resume and promptly forget about it.

You won’t be effective at LinkedIn networking if your profile doesn’t entice people to get to know you. Here are some quick tips to optimize your profile (for a step-by-step guide with more detailed information, click here).

  • Make your first visual impression count by displaying a high-quality professional photo.
  • Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
  • Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
  • Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
  • Join industry relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
  • Become an active and engaged user. When you log into LinkedIn, notice each time who shows up in your home feed. Most likely you will see the same few people. These individuals are getting more visibility because they are more active. If you make the commitment to become more active in your network, you will increase your visibility
  • Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunch time.

Pro Tip: Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn.

5. Mind Your Digital Footprint

Employers are increasingly carrying out social media checks on prospective employees. Anticipate this by googling yourself to see what turns up.  Here is where a professional profile on LinkedIn can be enormously helpful to present the best impression. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.

While LinkedIn is an asset, other forms of social media may harm your search for a new job. Sharing personal information about your treatment through a blog, Instagram, Twitter or Facebook is publicly searchable by potential employers.  Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment.  But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.

Pro Tip: Take some proactive steps to protect your privacy online.  Set privacy settings on things like Facebook so that nothing can be seen by people who aren’t “friends” (including pages you are a fan of – an often forgotten detail). Delete what you can from your postings on Facebook and other media that talk about your cancer. Set up a Google Alert to monitor mentions for your name.

6. Handling the Job Interview

A job interview is stressful at the best of times, but when you’re anxious about handling the question of cancer, it’s doubly so. Sixty-one percent of cancer survivors looking for a job said they fear disclosing their cancer diagnosis will negatively affect their chances of getting hired.

Rehearsing what you plan on saying ahead of time greatly reduces any anxiety you may feel. The more prepared you are before the interview, the more relaxed and at ease you will appear during the interview. Draw up a list of potential questions and practice your answers.  Accentuate the positive. For now, put aside your worries about how to explain the gap in your resume and spend some time focusing on why you are the right person for the specific job that you are applying for. List at least ten great qualities and skills you have and ask friends and family to help you brainstorm more. Try to find a willing friend or family member who will role-play the interview with you.

Remember you don’t have to disclose your cancer history either on your application or during an interview. The Americans with Disabilities Act prohibits employers from asking job applicants about a disability (this includes cancer) before offering them the job.  However, you may decide you want to be upfront about a work-related absence. If this is the case, you can deal with it by briefly explaining you had some time off work for a health (or family) related reason, but that’s behind you and you’re now looking forward to re-joining the workforce. Keep it simple, stick to one sentence or two and don’t be tempted to digress. Then switch the direction of the questioning back to your skills and qualifications for the job.

Pro Tip: Do your research before going into an interview. By showing off your knowledge of both the company and the industry, you are conveying to the interviewer that you are still up-to-date even if you have been absent from work for a period of time.

7. Considering a Career Change

Cancer changes your outlook on life.  Alongside an increased awareness of the preciousness of time, you may also have decreased tolerance for spending time on meaningless tasks. Many cancer survivors, my own self included, have felt a calling for more meaningful work after their treatment has ended.    I’d like to finish this back-to-work series by sharing the stories of three such people who have used their cancer experience as a way to help others and forged new careers in the process.

Jennifer Elliott was a pre-kindergarten to elementary school age music teacher before being diagnosed with bilateral synchronous breast cancer in 2014. Since her diagnosis, her focus has shifted to patient advocacy.  “My advocacy began when I realized that my access to industry trained people, thanks to where I live and who my friends are, was impacting my care in a positive way,” said Jennifer.   “That made me angry, because we should all have equal access to quality care.  I’m now applying to graduate degree programs in public policy because, as I’m advocating for breast cancer survivors I’ve learned that all the things I’m advocating for are impacted or dictated by policy and if I want to have the broadest impact I need some policy skills and training.”

Terri Coutee was focused on a life-long dream of completing a Master’s program in teacher leadership when she received news of her second breast cancer diagnosis. “The diagnosis was the catalyst to evaluate my professional career,” explained Terri.  “I had to focus on my treatment and major surgery over a period of seven months. This gave me time to re-evaluate, research, and refocus. I learned less than 25% of women and men were not being given their options for breast reconstruction after mastectomy. As a life-long educator, I realized I could educate those affected by breast cancer and learn from my experience. A blog about my successful breast reconstruction experience led to opening a non-profit Foundation to educate a global audience through social media, attending medical conferences, and making as many personal connections as I could to assist others through their own journey. The need is endless because we haven’t found a cure for breast cancer, yet. Until we do, I will continue to educate and provide resources for the very best medical care for others faced with mastectomy.”

At the age of 51, Chris Lewis wasn’t looking for a career change. “I was working for myself and was at the peak of my earning power,” he said. “Then a poor prognosis of incurable blood cancer and my life was turned upside down. I have since had many years of complex treatment meaning I could not return to employment of any description. As my survivorship moved from months to years I needed a purpose. My body was in bad shape but I still had a business mind.”

Unhappy at the poor resources and help for people living with cancer, Chris took to the Internet to voice his displeasure, leading to him running his own successful website Chris’s Cancer Community.  “This led to me becoming a global expert speaker and writer”, said Chris. “I am self-taught in social media and an award winning writer. As a patient advocate I speak at many high profile conferences. Cancer has taken a lot from me, but has shown me a new way of life I would never have experienced. The big bonus is the incredible people I get to meet and talk to daily. It seems even at my age I have found a new career!”


Notable News – December 2018

Here we are on the cusp of another trip around the sun, and we have the opportunity to look forward to what the new year may bring. According to and, statistics found here and here, are encouraging when it comes to cancer survival rates. The number of cancer survivors in the United States is expected to reach 20.3 million by 2026. That’s good news for the 38.4 percent of men and women in the US that will receive a cancer diagnosis at some point in their lifetimes. Of course, surviving cancer can be costly. Expenditures for cancer care, which were $147.3 billion in 2017, are expected to increase in the coming years thanks to factors such as a population that is aging and new and costlier treatments which are implemented as standards of care. While cancer care is expensive, it seems to be effective. The overall cancer death rate has been steadily declining in the US since the 1990s. In fact, from 1991 to 2015, the overall cancer death rate fell 26 percent. According to, by 2020 the cancer death rates are expected to drop the most for prostate cancer, colorectal cancer, lung cancer, female breast cancer, oral cancers, cervical cancers, and melanoma. With the death rate falling and the survivor rate increasing it’s clear that, over the past several years, progress has been made to effectively prevent and treat the disease. Fortunately, it looks like 2019 will follow that trend.

There are two promising cancer treatment developments this month, reports The first one helps prevent the spread of cancer after surgery. A spray-on gel being developed could help stop the recurrence and spread of cancer tumors after surgery when it is applied to the surgery site. The gel is full of drugs that activate the immune system to prevent the return of the cancer. Testing done on mice has been promising. It prevented the recurrence of cancer at the surgery site and prevented tumors from forming in other areas of the body. You can find more details about the promising gel here.

The second development is an exciting combination of medications that may prevent tumor growth. A couple of years ago, researchers in Switzerland figured out that by combining metformin, a drug used to treat diabetes, with syrosingopine, a blood pressure drug, they could prevent cancer tumors from growing. The combination of the two drugs kills the cancer cells by cutting off their energy supply. You can learn more about how this dynamic drug duo works together to sock it to cancer here.

There’s also good news regarding breast cancer this month, reports This is really good news because it gives hope to women with one of the most aggressive forms of breast cancer. There aren’t many treatment options for triple negative breast cancer, but targeted antibody therapies might change that. Triple negative breast cancer does not respond to hormone treatment so patients have to be treated with surgery, chemotherapy, and radiation. The targeted antibody therapy would activate the patient’s immune system to fight the tumor. More about this exciting and developing treatment can be found here.

Of course, the best news of all comes when the cancer is no longer detectable, and that’s exactly what happened for a Texas girl this month, reports The 11 year old had a rare and inoperable brain tumor, and she went through weeks of radiation. The radiation can stabilize or shrink the tumor and is the only course of treatment, but there is no cure. Inexplicably, the girl’s scans revealed that the tumor was no longer visible. While doctors call this case extraordinary, they say the long-term prognosis has not changed, and the tumor will likely grow back. In the mean time, the family says they prayed for a miracle and got it. More about this remarkable story, and a video, can be found here.

As we ring in 2019, let’s hope for more encouraging research and remarkable stories, and a day when all cancers disappear.

Interview with NHL Expert Dr. Steven Rosen

Interview with Steven Rosen, MD; Provost and Chief Scientific Officer, City of Hope

From the 14th annual International Workshop on Non-Hodgkin Lymphoma (iwNHL), Dr. Steven Rosen was interviewed about the different types, biological treatment options, and the patient’s role in Non-Hodgkin Lymphoma. Watch the full videos below to hear all of Dr. Rosen’s insight.

What Are The Types of NHL? from Patient Empowerment Network on Vimeo.

Biologic Treatment Options For Lymphoma from Patient Empowerment Network on Vimeo.

What Can Patients Do For Themselves During Treatment? from Patient Empowerment Network on Vimeo.

Importance of A Healthy Lifestyle and Diet With Cancer from Patient Empowerment Network on Vimeo.

The New Version of “The Fantastic Voyage”

In 1966, a science fiction film was released about a team of scientists who shrank themselves into molecular sized particles in order to heal a colleague from withinAG his body. Crazy, no?

Well, since then, we’ve seen the development of nanotechnology, a new tool where disease fighting mechanisms are released into the body. Their size? About 100 to 10,000 times smaller than human cells. These smart little machines travel through a patient’s body to the site of a particular problem. Not surprisingly, a very big use of nanotechnology is in the diagnosis and treatment of cancer.

Nanotechnology and cancer detection and treatment is a match that, in the past, was only imaginable in science fiction. Cancer initially happens in formerly undetectable ways at a molecular level. Nanotechnology has the capacity to rapidly detect cancer-causing cells, also at the molecular level. Through the application of molecular contrast agents, nanotechnology can not only detect changes in cells potentially leading to cancer, but can also monitor treatment to ensure that a cancer patient is receiving the correct medicine. Understanding and treating cancer on such a profoundly targeted area of the body can also lead to greater development of individualized therapies.

At this point, most cancer patients receive some combination of surgery, radiation, and chemotherapy, all of which can have distressing side effects. The promise of nanotechnology is that the field of targeted treatment, already in process, can be accelerated even more. And as early detection is one significant tool in cancer treatment and cure, nanotechnology can certainly be an important tool in that arena.

How available is nanotechnology for the average cancer patient? Several new nanotechnology drugs have passed the clinical trial stage and are on the market, including Doxil® and Abraxane®. Doxil® has been approved in treatment of AIDS-related Kaposi’s sarcoma, breast cancer, ovarian cancer, and other solid tumors. Abraxane® is being used in the treatment of advanced breast cancer, advanced non-small lung cancer, and advanced pancreatic cancer. Many other nanotechnologies are in the pipeline as well.

Chalk one up for science fiction predicting real life inventions! I’m still waiting for the transporter myself.





Helping to Manage Side Effects in Lung Cancer Treatment

Interview with Susan Varghese, RN, MSN at MD Anderson Cancer Center

Andrew Schorr interviews Susan Varghese, a 10-year nurse practitioner veteran with lung cancer patients, about the side effects associated with treatment. She begins by explaining some of the common side effects, like the ones listed here:

  • Fatigue
  • Change in appetite
  • Nausea
  • Vomiting
  • Diarrhea
  • Constipation

Initially, she suggests managing your side effects with over the counter drugs, but if that does not work there are several new drugs available. These drugs can be administered before, during, and even after treatments. The main goal is to keep a healthy, nutritious diet and maintain your weight so you have the strength to fight your disease. And remember, communication with your medical team is key to getting the care you need. Watch the video below to hear all of Susan’s knowledge and advice.

Helping to Manage Side Effects in Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

The End of Trial and Error As a Drug Delivery Model?

As researchers discover that cancers can be specifically targeted with a particular drug, the question then arises – which medication works best for a unique individual with a particular cancer?  Researchers at the Fred Hutchinson Cancer Research Center and the company Presage Biosciences have created a device called CIVO™ to answer that very question.

In the past, oncologists have made their best guess as to which medication protocol would work on a particular cancer, based on data from animal models, clinical trials, and their medical expertise. In this scenario, only one drug can be tested at a time. Researchers know that there is considerable variation between how a drug affects a tumor in different individuals. The end result — a patient can be treated with no positive effect on treating the cancer, but they experience uncomfortable side effects of the medication nonetheless.

The CIVO™ device can change that model.

CIVOUsing up to eight tiny needles, a patient’s tumor is injected with multiple drugs that have been shown to have an impact on that particular cancer. The drug amounts are miniscule compared to what could be delivered to a patient for treatment purposes. The patient will in all likelihood not experience the painful side effects of a full dose of the medication. The test subjects also report little pain during the injection process.

In one to three days, doctors remove a piece of the tumor and examine it in the lab. They can then see which medication killed the cancer cells, slowed their growth or was ineffective. That piece of information can work wonders for doctors trying to determine the best drug protocols for their patients. And potentially patients will not have to suffer needlessly while undergoing a treatment that may not ultimately work well.

CIVO is has been used on animal subjects and is now part of a human study as well as a collaboration between Presage, the Seattle Cancer Care Alliance (SCCA) and the Fred Hutchinson Cancer Research Center, with funding support from the National Cancer Institute (NCI). Researchers are hopeful that this new technology will shine a brighter light on what drugs work best on which cancers in certain individuals. That will be welcome relief for patients who have just been diagnosed with cancer and are anxious about medication side effects.



Finding the Right Care for You

Telling the Full Story

I’m a bit miffed at the moment. I was just on the cancer treatment center site where I received my care and the opening page reads in bold, “Ranked No. 5 in U.S. for Cancer Care”. Seriously, ‘No. 5’? It made me pause and think, why on earth would anyone want to be treated for something as severe as cancer by an organization claiming they’re ‘No. 5’?

Having gone through the experience of cancer treatment and knowing what I now know, I wouldn’t begin to consider being treated by ‘No. 5’. Fortunately for me I wasn’t, I was treated by ‘No. 1’. I was treated by subject Center that’s advertising ‘No. 5’, yet treated by same as ‘No. 1’? Confused?  Don’t because what I have to share is important to anyone diagnosed with cancer.

Cancer is complicated. Individuals diagnosed with the same type and stage is often different in symptoms, characteristics, and multiple treatment options from one patient to the next. There is no such thing as one size fits all when it comes to treating cancer. Thus you need to be cured by people who are qualified, knowledgeable, and above all, experienced. There are many moving parts in a cancer diagnosis; underneath, there’s a ticking clock.

For the record, I fired ‘No. 5’ following my diagnosis. They may officially be more like ‘No. 500’ but to me it didn’t matter, I knew they weren’t ‘No. 1’. During my initial visits, I met several of the team and didn’t like what I heard. Spare the details but trust had I stayed the course, doubtful you’d be reading this post. Determining your provider is literally a life and death decision, trust me.

Finding ‘No. 1’ requires research, networking, and a bit of luck. All applied in my case and I was fortunate to meet my oncologist. In the initial interviews, I brought along extra ears because you don’t hear every word the doctors communicate. Following the initial meeting with ‘No. 1’, my friend said, “You don’t need look further, he’s your guy.” I didn’t need the affirmation…but it helped.

I’m confident in every rated cancer center in the country there’s a ‘No. 1’ for a specific disease. Conversely there’s also a ‘No. 5’. So placing an overall rating or ‘quality #’ on the Center for validation of an overall one size fits all treatment is misleading. It is equivalent to rating a restaurant. They’re given ‘star’ ratings. You pretty much know what to expect given number of stars. However, when it comes to the food, some dishes are better than others with multiple chefs.

Randy and Renato MartinsThe point is you need to find a team of professionals knowledgeable about the recipe and how to bake it. The best way I know to accomplish is interview several, listen with a minimum of four ears, and make sure you are comfortable with the answers. If not, move on until you do. This is at the core of being an empowered patient and taking an active role in your healthcare. Something that is being stressed more and more as we move to a value based healthcare system.

‘No. 1’ he told me I would be treated with, ‘Intent to cure’. This is physician speak to get your mind thinking along the lines of living opposed to the alternative. What matters is treatment protocol and how adjustments are made along the way. In many cases what begins as a straightforward pathway quickly becomes finer tuned.

I was deemed operable following my first round of chemo. While on the table and wide open, I became ‘inoperable’ due to undetected infected lymph nodes. While splayed open like a gutted fish, my team of doctors debated best strategy for moving forward. Do we remove the lung, leave it, take out a portion, how long recovery from each, what next, etc.? Throughout they’re calculating potential outcome staying true to their objective of, ‘Intent to cure’. This is all transpiring real time while the anesthesiologist drip line keeps on trickling.

Making adjustments as new developments present themselves as described is not the work of a ‘No. 5’. It’s clear and straightforward, ‘No. 1’. Living proof is the most valid testimonial I’m aware of.

Before you put a label and a ranking on any organizations service, make sure you’re telling the full story. Not just what some independent association attaches from a myriad of data points. There’s a lot more under the hood than stating you’re ‘No. 5’ and posting for the general public. Personally, my Center, and more importantly the people within who treated me, is ‘No. 1’. That’s the bigger Story and one you can live by.

Myeloma Highlights From #ASH14

(Editor’s note: Jack Aiello is a PEN board member and a myeloma patient who is extremely active in the myeloma patient advocacy world)

According to Jack Aiello (definitely not medically trained)

This is my 9th year attending ASH (American Society of Hematology), where over 26,000 attendees (most ever) from all over the world (hematologists/oncologists, lab researchers, oncology nurses, scientists & 300 pharma companies) presented latest research results via both oral presentations (1000) as well as posters (3000) on all blood cancers. This year there were 855 abstracts (>100 clinical) on Myeloma alone, many of which were selected for oral presentation.

Rather than attending talks on Biology, I typically focus on the Clinical Trials, which I’m able to understand and are more relevant near-term to patients. Even at that, there are overlapping MM oral sessions as well as 4’x6’ posters without reprints, so it’s always possible that I have not included something of interest to you or made a typo because I can’t read my own writing as detailed powerpoint slides are presented quickly. You might want to view the published abstracts at and various press releases. [Wherever relevant, I’ve listed Day- Abstract#-Lead Investigator after the trial results, e.g. {Sat-31-R. Vij} and clicking on the abstract number will take you to the actual abstract.]

There are other ways to learn more about results from this conference. The IMF and Patient Power were conducting video interviews of MM experts for postings on their site. There are scheduled webinars (MMRF 1/8/15, IMF 1/15/15) which you can listen to live or by replay. You’ll also find some patient blogs (including mine) as well as MM expert video interviews posted on the IMF website ( And all of us in the SF bay area should attend the LLS Blood Cancer Conference (which includes updates from ASH) Jan 24, 2014 in SF ( to register). Dr. Tom Martin of UCSF will do a great job presenting the latest information.

Presentations and posters of clinical trial results follow the same format: Background (including hypothesis), Study Objective, Design & Treatment schema, Patient Characteristics & Cohorts, Responses (include high-risk cytogenetics), Toxicity (hematological and non-hematological), Conclusion, and Next Step. Remember, the goal of Phase I (typically handful of patients) is to determine “Maximum Tolerated Dose”; Phase I/II and II (typically 25-75 pts) continues to measure dosage escalation and safety while looking at responses; and finally Phase III (several hundred patients) compares response rates between new and current treatments.

Treatment schedules are defined for stages of Induction, and optionally Transplant, Consolidation, and Maintenance with specified Randomization along the way; dosage amounts and scheduling are provided for each drug along with optimum number of treatment cycles (typically 28 days). Risk stratification correlates various techniques such cytogentics and FISH analysis (e.g. chromosome deletions and translocations) gene-expression profiling (GEP).


  • Blockbuster? While I didn’t see a blockbuster announcement this year, I saw many posters and oral presentations that focused on potential myeloma and bone marrow microenvironment markers as treatment targets for which drugs should be developed and may very well become future blockbusters.
  • Smoldering Multiple Myeloma (SMM) Recently, “ultra high-risk” SMM (plasma% > 60%, free light chain ratio > 100, or focal lesions > 1) has now been reclassified by the International Myeloma Working Group (IMWG) as full-blown MM…meaning that contrary to the previous “watch-and-wait” recommendation, this asymptomatic patient should now be treated as any MM pt. And rather than “watch and wait”, more studies are being done on “high-risk” SMM pts (M- spike >= 3g/dL and plasma% 10-60% but no CRAB damage) to determine if earlier treatment benefits them. Dr J. Mikhael dubbed this “SLiM”-CRAB…S=60, Li=light chain and M = MRI.
  • Monoclonal Antibodies This continues to be the most exciting next area beyond Proteasome Inhibitors (e.g. PI such as Velcade) and IMIDs (e.g. Revlimid) that will yield targeted drug therapies. Daratumumab, Elotuzumab, and SAR650984 are all making their way through trials.
  • So many options In general better responses and longer progressions-free survivals result in better overall survivals. The list of treatment options since last year’s ASH continues to grow now that we have Carfilzomib and Pomalidomide, which can be combined with other treatments and often work when their predecessor (e.g. Velcade & Revlimid respectively) stopped working.
  • Maintenance This is still a hot topic. Most agree that maintenance (a better name might be “continued treatment”) improves progression-free survival and some trials are showing overall survival benefit as well. Many docs believe that continuous maintenance till progression yields better results than maintenance for a fixed time period.
  • Clinical Trials There are clinical trials for every diagnosis phase… from high-risk SMM to MM, for newly diagnosed thru relapsed/refractory, both SCT-eligible and non-eligible and maintenance. Trials are so important because that’s how we advance possible treatments and new drugs. Perhaps you want to ask your MM doc if there’s a trial you should consider.
  • Minimum Residual Disease (MRD) For the first time, there were 9 oral presentations and posters on incorporating MRD techniques (flow cytometry or DNA sequencing) within trials providing a better diagnostic tool to determine whether a particular treatment has been successful.. In time, MRD may also help guide further treatment (e.g. perhaps to stop maintenance) as well as provide information about your prognosis (e.g. examine the make-up of a myeloma cell). One poster showed that MRD progression via Flow preceded clinical relapse by 8 mos. {Sun-3394M.Gambella}
  • Quality of Life (QOL) & Costs QOL and Adverse Events (AE) continues to be a strong focus with any trial and while I wasn’t able to attend it, there was a major oral presentation on drug costs (more below).Of course, there continues to be unanswered questions such as:
  • I’m SMM…should I consider treatment or watch & wait?
  • Best treatment for me as a newly diagnosed or R/R patient? What if I’m standard or high-risk[del 17, t(4;14), t(14;16) about 25% of pts]?
  • For transplant-eligible, do it now, later or never?
  • Length and type of maintenance?Yet, I’m very encouraged by the continued progress to understand everything about MM, determine new MM cell targets, and learn what treatments work best.


  1. At the IMF Symposium, several questions were asked of the attendees (1000 clinicians and others). After each MM expert presented their side of the story, here were answers (“don’t know or maybe” not listed): 1) Should treatment be given to high-risk SMM? Y-17%, N-77%. Note this does not include “ultra” and there was general agreement about doing clinical trials to answer this question; 2) Should maintenance be continuous? Y-58%, N-39% but higher level of “Yes” for high-risk MM; 3) Preferred Therapy for Relapsed/Refractory Pts? Car-Pom-dex (KRd)-56%, Car-dex or Pom-dex -24% or 2nd SCT-19%.
  2. “We lack data on the usage of MRD results but fortunately MRD is being incorporated in trials” S.V. Rajkumar (Mayo)
  3. I attended a meeting of the NCI Myeloma Steering committee meeting, which approves clinical trials dependent on NCI funding. Since trials are expensive and often difficult to accrue, one discussion was around the NCI MATCH trial which pairs molecular abnormalities with drugs targeting that abnormality and whether this might be an effect umbrella trial design for MM.
  4. “Velcade must be part of induction treatment for SCT.” At the end of 2014, preliminary randomized data favored early SCT plus novel agents vs novel agents alone. P. Moreau (France)
  5. “Early SCT feasibility is 90% but delayed SCT feasibility is 70%.” P. Moreau (France)
  6. “At some point the biology of a pt’s MM will dictate whether or not an SCT is the besttreatment.” DETERMINATION trial results will help answer this. P Richardson (Dana Farber)
  7. “The median survival for standard risk MM patients is approaching 10 years.” Mayo’s mSMART classification shows OS for Standard (60%), Intermediate (20%) and High-Risk (20%) pts as 8-10, 4-5, and 2-3 yrs respectively. J. Mikhael (Mayo)
  8. IMWG definitions: Relapse-disease recurrence of >25% in the absence of current therapy after the pt showed a response. Refractory- refers to a relapse if a patient is on therapy (or within 60 days of completing treatment). Primary refractory means a patient never achieve a response from treatment.
  9. Drs should ask 5 questions when treating a relapsed pt: 1.Do I need to treat the pt now? 2.Should I retreat with previous therapy? 3.Have I used the Big 5 (Thal, Rev, Pom, Vel, Cfz)? 4.Have I used add-on agents (e.g. Cytoxin, Doxil)? 5.Have I considered an individualized, risk-stratified treatment such as intermediate risk needing velcade-based and high-risk needing more intense combinations. J. Mikhael (Mayo)


10. This Spanish phase 3 trial was the first significant study that compared Rev-dex versus “watch & wait”, for SMM pts considered high risk (PC > 10% and M-protein > 3g/dL, or >95% aberrant Plasma Cells…abnormal expression of CD antigens, or abnormal FLCs). 119 pts have been followed a median of 5+ yrs and shown 1) progression to MM for 23% vs 85%; 2) For those that progressed to MM and started therapy, those alive 5 yrs later are 83% vs 58%; OS is 93% vs 67%. {Sun-3465M-V.Mateos} There are other HR SMM trials looking at Rev-only {Sagar Lonial} and Cfz-Rev-dex {Ola Landgren}.


11. This poster offered clinical factors that predict the progression of SMM into MM within 2 yrs by having followed 287 SMM pts, 52% having progressed to MM. Factors associated with significant progression where 1) FLC ratio > 30; 2) plasma% > 15%; 3) M-protein > 2.3 g/dL; 4) beta2 microglobulin > 2 mg/l. They concluded that the 2-yr progression risk was about 18%, 21%, 42% and 79% if 0, 1, 2, or 3 risk factors were present. {Sat-2071R.Hajek}


12. While I didn’t see a significant presentation or poster in this area, MM experts at the IMF’s “Make Sense of Treatment” discussion agreed that RVd should be used independent of risk status but the results of the ASPIRE trial (see below) suggest KRd is also a reasonable option.


13. I was not able to attend this presentation but auto-mini-allo (mostly MUD) was compared with tandem auto in newly diagnosed FISH-del13q MM in this German study that looked at 200 pts. At median follow-up of 49 mos, 2-yr PFS (calculated from day 1 of second SCT) was 59% versus 47% respectively although median OS has not yet been reach for either group. Those smaller number of pts with both del13p and del17p also tended towards favoring the auto-mini- allo but it’s still early. {Sat-43S.Knop}


14. This phase 1-2 study examined weekly (instead of twice/wk) Carfilzomib, Cytoxin and dex (wCCd) in 30 newly diagnosed elderly pts. For the 21 pts at the MTD Cfz of 70mg/m2 plus Cfz maintenance, >=nCR was 41% (47% for twice/wk) and >=VGPR was 91% (77% for twice/wk). Toxicity similar with 19% serious AE’s. This may turn out to be a very important trial for patients, considering the big difference in going to an infusion center once per week instead of two consecutive days as is currently the requirement for Carfilzomib.{Sun-175A.Palumbo}

15. A phase 3 trial compared MPT-T versus MPR-R for 637 newly dx’d pts. Both arms resulted in similar PFS (~20 mos), response rates, and OS (~54% @ 4yrs). {Sun-179S.Zweegman}

16. You might hear about RVD-lite, Rev 15 mg days 1-12, Vel 1.3 mg/m2 once/wk, dex either 40mg/wk for pts <= 75 or 20mg/wk for pts >75 for 33 pts resulted in 82% ORR and was well- tolerated. {Sun3454E.O’Donnell}


17. The Phase 3 ASPIRE trial compared Cfz-Rev-dex (KRd) versus Rd for 792 relapsed MM pts. The results were a longer median PFS of 9 mos (26.3 vs 17.6) and a trend to longer OS although median OS has not been reached in either group. ORR was 87% vs 67% and, impressively, CR rates of 31% vs 9%.. All neuropathy for both groups was about 17% and grade >=3 PN was infrequent (each about 3%). Also interesting the patient reported outcomes showed an improved QOL for the KRd arm (perhaps because of deeper responses). {Sun-79-K.Stewart}

18. The Phase 3b STRATUS trial examined Pom-dex for 604 R/R MM pts, nearly 80% refractory to both Velcade and Revlimid. Median PFS and OS were 4 mos and 11 mos respectively while ORR was 35% (7% >= VGPR)…all this being good numbers for this heavily pre-treated group of pts. Grade 3 neutropenia (low white count) of 42% was the highest AE but counts recovered quickly. {Sun80-M.Dimopoulos}

19. Pom-Cytoxin-dex was shown to be superior to previous Pom-dex study in a Phase 2 trial of 36 R/R pts, 100% Rev refractory, 75% Vel refractory and 40% Cfz refractory. Improvements shown in ORR (65% vs 35%), PFS (9.5 vs 4.4 mos) and median OS (not yet reached vs 16.8 mos). Adding Cytoxin to those on Pom-dex only showed minimum benefit. {Mon-303-R.Baz}

20. Pom-Vel-dex (PVd) results in a Phase 2 study of 42 R/R pts showed 85% ORR (including 45% >= VGPR) and median PFS of 10.7 mos (including 9.5 mos in high-risk pts). Pts were Rev- refractory and most had prior Vel and SCT’s. Grade 3+ AE’s (mostly hematological) seen in 83% of pts but this is typical for Pom-dex. {Mon-304M.Lacy}


21. While I was not able to attend this presentation, this retrospective analysis of 466 pts examined timing and duration of Rev maintenance (5-15 mg daily or every other day) after an SCT. Questions asked: 1) Did maintenance improve disease status, e.g. put pts in CR who had not achieved CR before maintenance? Ans: After 2 yrs, 37% improved response and 50% of those pt improvements were from non-CR to CR; 2) What are the effects of starting maintenance early (within 4 mos) versus late (after 4 mos)? Ans: No PFS or OS differences; and 3) Does continuous maintenance beyond 2-3 yrs improve PFS and OS? Ans: No difference in PFS but there was an OS improvement. {Sun-194-I.Mian}

22. A poster from the FIRST trial (Continuous Rd vs Rd18 vs MPT) of over 1600 newly diagnosed elderly pts examined maintenance and concluded that continuous Rd improved outcomes (PFS, OS) irrespective of responses achieved. {Sun-3458-N.Bahlis}


23. Ibrutinib is a BTK inhibitor expressed by MM cells as well as osteoclasts, which breaks down bones, and recently received FDA approval for CLL and Mantel Cell Lymphoma. These early results from this phase 2 trial for R/R MM pts demonstrated that Ibrutinib showed response activity (25% >= stable disease, 4 mos PFS) with and without dex but also showed about half the pts having grade >=3 hematological AE’s so further studies will be done on Ibrutinib. {Sat-31– R. Vij}

24. Panobinostat (Pan) is an HDAC inhibitor that recently was not approved by an FDA advisory committee (GI/diarrhea issues vs addtl 2.2mo PFS) but is still being tested in trials. A final determination by FDA regarding approval is still pending. A small (6 pts reported) phase 1 study of Pan (20 mg) + Cfz (+ minimal dex of 0-8mg/week) for R/R MM pts showed 46% ORR (inc 19% >= VGPR) but also some AE’s. {Sat-32-J. Kaufman}

25. Another Phase 1/1b Panobinostat trial for 31 pts paired it with RVd, except this time with Pan 10mg and for newly dx’d pts, resulting in 95% ORR and a promising depth of response with a nCR/CR for 50% of pts and no surprising toxicities. {Sat-33 -J. Shah}

26. Oprozomib is an oral PI from Onyx tested as a single agent in a Phase 1b/2 study for 87 pts. Cfz- refractory pts had an 18% ORR. Oprozomib, being given either 2 days per week for 2 weeks or days 1-5 for 2 weeks, has been reconfigured from powder in a capsule to a tablet to an extended- release tablet in order to improve efficacy and minimize AE’s. {Sat-34-R. Vij}

27. Ixazomib is an oral PI from Takeda (Millennium name is going away) and was tested in 50 newly dx’d pts in a Phase 2 trial. Ixazomib-Rev-dex was given as induction for 12 cycles followed by Ixazomib maintenance until progressionat 4mg on day 1, 8, and 15 each month. ORR was 90% (>= VGPR 59%) with PFS of 22 mos. Maintenance improved response in 48% of pts, with CR/nCR going from 24% to 62% with manageable AE’s. {Sun-82-S. Kumar}

28. SAR650984 (Anti CD-38 mAb from Sanofi) was tested in a Phase 1b trial with Rev-dex in R/R MM 31 pts @ SAR dosage 10mg/kg. SAR (given twice/week)-Rd resulted in 63% ORR for pts (94% refractory to Rev!). For those refractory to both Rev & Vel, 40% ORR. Some hematologic AE’s (common with Rev), some infusion site reaction during first 2 cycles. {Sun-83-T.Martin}

29. Daratumumab (Anti CD-38 mAb from Janssen) was tested in a Phase 2 trial with Rev-dex in R/R MM 30 pts with Dara dosage 16mg/kg (once/wk 8wks, then twice/mth 16 wks, then once/mth till progression). This achieved an ORR of 87% (7% CR, 43% VGPR) with a median time to CR of 5 mos. For pts not Rev-refractory, 75% >= VGPR and AE’s same as Rd. {Sun-84-T.Plesner}

30. Daratumumab was combined with 4 “baseline” regimens Vd, VTd, VMp and Pom-d (6 pts in each arm) and all newly diagnosed except Pom-d R/R. ORR was 100% in the first 3 arms and 50% in the Pom-d arm, all with very low AE’s. {Sun-176-P.Moreau}

31. Elotuzumab (Anti SLAMF7, formerly CS-1, mAb, expressed on 95% of MM cells but little on normal tissue) was combined with Rd in a Phase 2 trial of 73 R/R (but Rev-naïve) pts. At 10mg/kg dosage, Elo-Rd showed ORR 92% and PFS 32 mos with no dose-limiting toxicities. Elo is being tested in Phase 3 trials for R/R and NDMM pts. {Mon-302P.Richardson} In a poster, Elo-Rd was similarly effective for pts with renal insufficiency. {Sat-2119-J.Berdeja}

32. LGH447 (Pan-Pim Kinase inhibitor, daily MTD 500mg, oral from Novartis) was studied in a Phase 1 trial of R/R pts with doses 70-700mg. Single agent activity was 10.5% ORR (best VGPR) over all doses, some grade 3/4 AE’s (mostly hematologic). {Mon-301-M.Raab}

33. Other new drugs you might hear about are: Ricolinostat (ACY-1215), HDAC Inhibitor; Selinexor (KPT-330), anti-tumor suppressor; PRLX 93936, Ras pathway inhibitor; Cabozantinib (SL-401), tyrosine kinases inhibitor; Ulocuplumab (BMS-936564) Anti-CKCR4 antibody; Filanesib (ARRY-520), kinesin spindle protein (KSP) inhibitor; Indatuximab Ravtansine (BT062), antibody conjugate including anti CD-138; Ricolinostat (ACY-1215), HDAC6 inhibitor; and more.


34. On Saturday a lecture was presented called “The Rising Cost of Medical Care: Understanding the Problem and Exploring Solutions” which certainly includes the rising cost of drug. While I wasn’t able to attend, I heard the example being given about Gleevec (possibly the first targeted novel therapy), a daily tablet that results in curative control of Chronic Lymphocytic Leukemia. When it became available in 2001, the annual cost was $28K/yr. Now, with no difference in the drug formulation or packing, that annual cost has skyrocketed to $92K/yr. Apparently the phrase “financial toxicity” was frequently used during this meeting. And patients are not taking their medicine or even filling presricptions because of cost. Should docs introduce the concept of “cost-effectiveness” to the pt? Dr. Kantarjian from MD Anderson said that drug prices are now set not at a reasonable return on investment, but on “whatever the market will bear”. Clearly, the cost of medical innovation and the fair price of new medicines is a complex topic which requires urgent attention.

35. For Light Chain MM, Free Light Chain test via serum (blood) is more reliable than FLC test via urine due to the rapid clearance of the LC in urine. {Sun-180-J.Corre}

36. While I wasn’t able to attend this presentation, this abstract gives you some insights in understanding gene mutations where 150 MM cases were sequenced via a 77-gene mutation panel. After the first 30 cases, the most commonly mutated genes were KRAS (37%),
NRAS (21%), BRAF(13%), TP53, CDKN1B, DIS3 (each 11%), FAM46C, STAT3, and
IRF4 (each 8%). The MEK-ERK pathway was mutated in 61% of cases and in 3 cases more than one gene in this pathway (NRAS, KRAS, BRAF) was simultaneously mutated. {Sun-169– KM.Kortuem}

37. While I wasn’t able to attend this presentation, this abstract was another study on risk analysis and gene mutations from the MMRF CoMMpass trial (in which at least 2 of our SF Bay Area MM group participate). CoMMpass will study 1000 pts, of which over 650 have been accrued and 195 were reported on in this presentation. Looking at gene mutations, 44 distinct genes were mutated in at least 2% of patients. The most common mutations (>7 patients) occurred in KRAS, NRAS, IGLL5, DIS3, BRAF, ACTG1, EGR1, FAM46C, TRAF3, DUSP2, FGFR3, and PRR14L. As the study continues to mature, we expect it will provide unprecedented molecular characterization and correlating clinical datasets that will help define the factors of response to anti-myeloma agents and facilitate future clinical trial designs, thus serving as a stepping-stone toward personalized medicine for myeloma patients. {Mon-722-J.Keats}

38. Renal response was evaluated in a retrospective study of 150 R/R pts with moderate or severe Renal Insufficiency (RI) in this poster. After treatment with Rev and/or Vel based treatments, 15% showed renal improvement (compared with 38% ORR), although there was no difference between Rev or Vel efficacy. {Sat-2104-J.Rubia} Another poster for 1135 NDMM pts with RI showed 66% showed improvement and 51% had complete reversal. {Sun-3368-W.Gonsalves}

39. A study examined prevalence and predictors of delayed cardiovascular disease (e.g. heart failure, stroke) and concluded that MM pts have a two-fold increase in experience CVD. As such, it was recommended that we should consider having a cardiologist as part of our medical team. {Tue- 857-S.Armenian}

40. This study examined how access to advanced care might result in better Myeloma survival by categorizing 45,000 pts in A) 43% < 20 mi from SCT facility; B) 35% 20-70 mi; C) 18% 70-200 mi and D) 4% > 200 mi. Median Survival based on distances were A) 34 mos, B) 37, C) 31, and D) 30. Other impacts studied were household income, race ethnicity and education. {Tue-858– R.Innis-Shelton}

41. One of the posters I found intriguing investigated treatment outcomes for patients who have more than one monoclonal immunoglobulin (M-protein), such as IgG kappa + IgA lambda rather than only IgG kappa. I didn’t even know this was possible but in fact about 2% of MM patients have multiple M-proteins. How bout that? It turns out that this occurrence is NOT associated with adverse treatment or survival outcomes. {Sat-2038-T.Mark}

42. This comment is from my good friend Jim Omel, MD and MM pt, who attended a presentation “Cancer Genome Conundrum” in which Dr. T. Golub said there has been a 95% cost reduction in human gene expression profiling. GEP is a very reliable predictor of early treatment response and relapse. Further research is needed to connect tumor genotype to tumor vulnerabilities. Lastly he indicated the genome sequencing will become routine, but interpretation will remain vexing for some time.


For someone diagnosed with stage III MM 20 years ago with only 2 treatment options available (MP or VAD-SCT) and given 2-3 years expected survival, I’ve seen incredible progress since 2000. While there continue to be unanswered questions, we now have many more effective treatments for MM, providing patients with better opportunities to manage their disease.

GLOSSARY (according to Jack)

Drug Class/Category

IMID – Immunomodulary Drug PI – Proteasome Inhibitor
mAb – Monocloncal Antibody Drugs (other name)

C – Cytoxin (Cyclophosphamide) Cfz – Carfilzomib (Kyprolis)
D – Daratumumab
E – Elotuzumab

M – Melphalan
P – Prednisone
Pom – Pomalidomide (Pomalyst)
R – Revlimid (Lenalidomide)
S – SAR650984
T – Thalidomide
V- Velcade (Bortezomib)
Treatment Success Measurements EFS – Event-free Survival
ORR – Overall response (>=PR)
OS – Overall Survival
PD – Progressive Disease
PFS – Progression-free Survival
PFS2 – PFS + next-line treatment PFS TTP – Time to Progression
TTR – Time to Respond

Treatment Response

CR – Complete Response: No sign of MM (0 M-spike) nCR – Near CR (positive M-spike, may be same as VGPR) MR – Marginal Response: 0-50% reduction in MM
PR- Partial Response: 50% reduction in MM
SD – Stable Disease i.e. no response but also not worse sCR-Stringent CR: CR+ normal FLC & no clonal cells VGPR – 90% reduction in MM
MRD – Minimum Residual Disease typically by Flow Cytometry or DNA sequencing to provide more accurate measure of MM.

Side Effects

AE – Adverse Event (aka Side Effects)
DVT – Deep Vein Thrombosis (blood clots) MTD – Maximum Tolerated Dose
ONJ – Osteonecrosis of the Jaw
PE – Pulmonary Embolism
PN – Peripheral Neuropathy
QOL – Quality Of Life
VTE – Venous Thromboembolism (PE + DVT)

Tests/When to treat?

CRAB – High Calcium, Renal, Anemia, and Bone… CRABi – CRAB + “i” increased infections
FLC – Free Light Chain
SLiMCRAB – Includes Ultra High-Risk SMM

SCT – Auto stem cell transplant.

“d” and “D” – Typically both mean Low-dose Dex (40 mg/week) these days MGUS – Monoclonal Gammopathy of Undetermined Significance
Pt(s) – Patient(s)
R/R- Relapsed/Refractory Ref defined progressing while on Tx or within 60 days. SMM – Smoldering MM