PEN Blog Archives

Myeloma Treatment Decisions: Insist on Essential Testing

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In this podcast, myeloma expert Dr. Amrita Krishnan explains the essential testing that should follow a diagnosis, how the results could impact myeloma therapy, and discusses new and emerging treatments.

Dr. Amrita Krishnan is Director of the Judy and Bernard Briskin Center for Multiple Myeloma Research at City of Hope in Duarte, CA. Learn more about Dr. Krishnan: https://www.cityofhope.org/people/krishnan-amrita.

Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Patient Profile: Liz Sarris

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Patient Profile

Liz Sarris

Liz Sarris knows the world of healthcare pretty well. Not only has she had a 40-year career as a nurse, but she’s also had a host of chronic illnesses, which means lots and lots of doctor appointments. As if that weren’t enough, Liz has also been diagnosed with cancer three times – with three different and unrelated cancers! “I’m being watched closely from many angles,” she says. “But the great news is I live to tell the story.”

Her cancer story began in 1988. Her primary care doctor found some unexplained blood in her urine and, unable to dismiss it, referred Liz to a urologist. A scope of her bladder revealed a tumor that was about the size of a pea. Fortunately, it was non-invasive, had not invaded the bladder lining, and was removed. No treatment was required, but she did have to be monitored regularly. For the first two years she was checked every three months, then every six months for the next several years. After that she graduated to annual checkups that continue to this day.

Fast forward to 2014 when she was diagnosed with chronic lymphocytic leukemia (CLL). This time, Liz was seeing an endocrinologist for a thyroid issue when the doctor noticed some abnormalities in her blood work. Further testing led to her CLL diagnosis, which, so far, hasn’t required any medications or treatments other than quarterly check ins. “It is a watchful waiting situation,” she explains.

Then in 2017 things took a turn. Liz’s gastroenterologist, who she sees regularly for two chronic gastrointestinal issues, said that there was a spot on her scans that needed to be checked out. It was a spot they had been watching, but now it was starting to change. The spot turned out to be a neuroendocrine tumor of her pancreas. It was a slow growing tumor and not aggressive, but it was malignant and had to be removed, and there was a chance that it was a lot worse than the doctor thought it was. It meant major surgery that was not at all routine, and because her tumor was in the middle of her pancreas, it was possible that she might lose part of her pancreas and her spleen. Liz wanted the best possible outcome from the surgery, which meant keeping as much of her pancreas as possible, so she started to search for a surgeon. “I wanted to see the right people who were specific to this type of cancer and who do neuroendocrine tumors every day,” she says. “If he’s going to poke around my pancreas, I want to know he’s doing 10, 12, 15 of these surgeries a month.”

First, Liz narrowed her search geographically. She lives in an area that is relatively close to several high-quality medical facilities, and she knew that she didn’t want to be too far away from her family and support system after such a big surgery. Then she started asking questions and doing research. “Because I had engaged myself with good local physicians, I reached out to them for referrals,” she says. She asked her doctors who they would send their wives to and who they themselves would go to. Then she started calling surgeons and made appointments to interview three of them. When she had it narrowed to the surgeon she felt best about, she visited him a second time. “I don’t know if it’s the nurse in me or just who I am,” says Liz about her research process. She says that the doctor she chose made her feel confident, and his approach was more hopeful because he was willing to perform the surgery using a rare technique that meant he would remove the tumor from the center and then reconnect the two sides of her pancreas. Her doctor was upfront with her about all the possible risks and made sure she knew that his plan could change if the surgery revealed a different situation than they were expecting. “Do whatever you have to do to give me the best chance at a healthy life,” she told him and added that she hired him to do the job he would do for his mother, his sister, or his daughter and that she didn’t want to see him again in five years.

Her eight-hour surgery was a success. The tumor was removed, and her pancreas was put back together in what Liz describes as a “creative way.” After her surgery she didn’t require any treatment other than regular monitoring, and so far, all her scans have been good. She credits her successful outcomes in part to having a supportive family, good insurance, and good doctors, but she didn’t have good doctors by accident. She’s very proactive in her own healthcare. “I had the recipe for a good situation, but that doesn’t mean I didn’t have to do the research,” she says.

Her background as a nurse helped her know what questions to ask, but she wants others to know they can ask the same questions and can be just as informed. “You can navigate your care more than you think you can,” she says. “You really have to utilize your resources.” Liz says resources like the Patient Empowerment Network, where patients have access to free online tools such as a checklist of questions to ask the doctor, are great for cancer patients. “There needs to be more empowering,” she says. “Much of what I’ve done my entire career is try to empower patients.” She says that being empowered means being educated, identifying your expectations, and asking questions. “We are willing to ask questions of our auto mechanics about our car’s maintenance and repair, but not of our doctors about our own bodies,” she says.

These days Liz is adjusting her expectations for her own life. In March, Covid-19 interrupted the career she’s been so passionate about when her oncologist told her it wasn’t safe for her to continue to work during the pandemic. “This is not how I anticipated retiring,” she says. With her unique perspective as experienced patient and medical professional, she has a lot of knowledge to share, so now Liz is exploring how she can continue to help other patients learn more about how to navigate the healthcare system and take charge of their own care plans. She’s empowered to empower others.

Read more patient stories here.

Meet a Recent Graduate of Our New Course, Digitally Empowered®

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We’d like for you to meet Andrea Caldwell, a recent graduate of our Digitally Empowered® course and digital sherpa® program, conducted in partnership with the Cancer Support Community.

Andrea is already using her newly-gained digital literacy skills to access online healthcare resources. And not just for herself, but to support her Mom’s cancer journey, too. She was kind enough to share the details of her experience in the following video:

Andrea Caldwell Testimonial | I Hope That Other People Join In from Patient Empowerment Network on Vimeo.

Andrea enthusiastically encourages others to participate in these free programs:

“I recently had an emergency situation during which time I wasn’t able to use my cell phone. Thanks to the training I received from PEN’s virtual digital sherpa® program, I was able to use my computer to communicate, which I never would have thought to do before. Thanks to this technology training program, I’m now reconnected to the world.”

If you know an older cancer patient who needs a technology skills boost, tell them about Digitally Empowered®, our free and easy-to-complete course that develops the skills necessary to harness online health resources, including telehealth. 

These and all of our programs are made possible thanks to the generosity of Patient Empowerment Network donors and volunteers like you.

Digital Advocacy and Health Equity for CLL Patients

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Telemedicine or telehealth – remote access to healthcare – has become widely used after the arrival of the coronavirus pandemic, especially by cancer patients. But the rise in telemedicine has also brought challenges to the vulnerable populations of Americans over age 65 and to low-income Americans who have struggles getting online. 

Among patients who are over age 65, only 55 percent to 60 percent of them have broadband access from home or own a smartphone. These patients also have challenges with completing information online, with only 60 percent who have the ability to send an email, to complete a form, and to locate a website. Among low-income patients, only 53 percent are digitally literate, and they also have lower rates of Internet use, broadband access, and smartphone ownership compared to other patient groups. 

Empowering Vulnerable Communities

As an avenue toward reducing inequities, the Patient Empowerment Network (PEN) is working to foster change toward achieving equitable healthcare for all. In order to provide practical usage of telemedicine tools, PEN created the TelemEDucation Empowerment Resource Center for chronic lymphocytic leukemia (CLL) patients and their loved ones. Another resource, the digital sherpa™ program, helps cancer patients and their families become more tech-savvy by learning to use technology to their advantage during their cancer journey and beyond.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to CLL patients:

How to Optimize a Telemedicine Visit

Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits:

  • If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time so that you aren’t rushed when your appointment time arrives.
  • Just like in-person doctor visits, your doctor or care provider may run a few minutes late.
  • Try your best to remain flexible and to be patient.
  • Try to write down your questions before your appointment to keep on track about things you want to learn during your visit.
  • Remain focused on the main purpose of your visit as much as possible. Polite small talk is fine but keep it to a minimum so that you can get the most out of your visit. 

CLL Patients Who Benefit the Most From Telemedicine

Not every CLL patient will be a good fit for telemedicine visit. Things to keep as top of mind for telemedicine visits:

  • CLL patients who are on active surveillance from their care providers are a natural fit for telemedicine. They can get periodic blood tests from a local laboratory, and the results can be sent electronically for their CLL specialist to evaluate.
  • Patients with high-risk genetic features or rapidly progressing CLL are not the ideal patient for care via telemedicine.

In the time of the coronavirus pandemic, remote monitoring has become part of standard healthcare terms. Some things for CLL patients to know:

  • Though it may be a new healthcare method for many patients, monitoring has actually been used for decades in the care of CLL patients and others with suppressed immune systems.
  • Remote monitoring is used to reduce the risk of infection to those with reduced immune system function, such as those with cancer and CLL.
  • Remote monitoring is a completely safe medical practice for CLL care when a patient’s blood work is monitored on a regular basis. Always ask your doctor if you’re unsure if you’re a candidate for remote monitoring or if you have questions about the frequency of your blood tests.

How Telemedicine Can Improve CLL Care

Now that even more CLL patients have become accustomed to using telemedicine care tools, CLL experts are looking to the future. Looking ahead:

  • Telemedicine can help CLL patients who live in very remote areas to gain access to clinical trials that weren’t accessible to them in the past.
  • CLL therapies will continue to improve for patients as a higher percentage of CLL patients participate in clinical trials.
  • The improvements in remote monitoring will bring more tools for CLL patients to do routine things like sending their heart rate and other things to their care provider in real time. 

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

  • HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
  • Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
  • Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
  • VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools are gaining both in usage and numbers, CLL patients can feel hopeful about improved care and treatment toward the future. As a step in that direction, take advantage of the resources below and continue to visit the TelemEDucation Empowerment Resource Center for informative content about CLL and telemedicine.

Resources for Telemedicine and CLL

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Telemedicine Challenges and Opportunities for CLL Patients

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

What Subset of CLL Patients Should Utilize Telemedicine?

Will Telemedicine Be Part of Routine Management for CLL?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

What CLL Population Will Benefit Most From Telemedicine?

Remote Monitoring

TelemEDicine ToolBox Visit Checklist

TelemEDicine ToolBox Glossary

 

Will Telemedicine Give More CLL Patients Access to Clinical Trials?

Will Telemedicine Activate More Remote Monitoring for CLL?

Will Telemedicine Improve My Quality of Life with CLL?

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

What CLL Symptoms Can Be Monitored via Telemedicine?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

digital sherpa™ program

Bright Hope on the Horizon – Part Three

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See the beginning of Sajjad’s story in Part One and Part Two

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

We all are familiar with the miracle of modern antibiotics. Most infections, even the serious and life-threatening kind, can usually be cured by the proper use of antibiotics. But antibiotics cannot work without help from the patient’s immune system. 

Every day, literally hundreds of times a day, various bacteria and viruses invade our bodies. Yet, we are not constantly sick. Why? Because our immune system is always on guard, ready to fight and destroy every potential enemy. The invaders are promptly killed and the threat is eliminated without us ever becoming aware of it. 

It is only when the bacteria manage to establish a beachhead that we show signs of illness. Even then, the immune system plays a critical role in helping the antibiotics conquer the infection. Antibiotics simply cannot work if the immune system is diseased and unable to help, as in HIV. That is precisely why in HIV even a minor infection can threaten the patient’s life despite the use of antibiotics. Our immune system is the most powerful, sophisticated, efficient, and elite fighting army one can imagine.

So, why does it not fight the cancer and kill it off? For decades, medical scientists have struggled with precisely this question. Why was the immune system actually ignoring the horrid invasion? Why was it sitting quietly by while the cancer invaded and destroyed one vital organ after another until it killed the patient?

It has been only in the last few years that we have realized what was happening.

Cancer is wily and cunning. That, of course, is not a surprise. But researchers have begun to understand that cancer cells actually make themselves invisible to the immune system. We still do not have a complete understanding as to how, but we have learned a few things. 

This we do know: The immune system fights off various invasions through a system of checkpoints. Say, for example, you have strep throat. When the germs first invade, an alarm is triggered which serves to mobilize the body’s immune forces. They attack the strep germs and kill them off. Soon, the immune forces reach a checkpoint where they must stop to receive fresh orders. If the threat persists, the order will be to continue the attack. On the other hand, if the threat has been eliminated, that information will be conveyed to the immune forces, thereby shutting them down. Obviously, we do not want our army to keep firing after the enemy is dead. It will only cause harm to the civilians. Similarly, our immune system must not go on unchecked in order to prevent damage to the normal and healthy tissues. 

So, our immune response is a pattern of repeated starts and stops regulated by a series of checkpoints. 

Scientists have learned that cancer has the ability to trigger checkpoints or manipulate the checkpoint signals. As soon as the immune forces attack the cancer, it initiates a checkpoint signal to terminate that immune response. Cancer has a way of making the checkpoint say—to continue the analogy—”No problems here. The threat is gone. All clear now.” 

So far, we only know about a couple of different ways this is accomplished. But it is very likely that the wily cancer has many other ways to fool the immune system. Our knowledge is still growing by the day.

Once scientists understood that mechanism, they began to develop medicines that neutralized the false checkpoint signals created by the cancer, thus allowing the immune system to continue to attack and kill the cancer cells. These drugs are called checkpoint blockade therapies.

In clinical trials, these medicines have produced a 66 percent success rate against an extremely deadly cancer, malignant melanoma. This is an astonishing success, and we may even improve upon that success as we learn to use different drug combinations and newer and better drugs are developed. Each day brings the dawn of a new hope.  One of the newer checkpoint blockade drugs, Pembrolizumab (Keytruda) has consistently shown encouraging results in a variety of, hitherto untreatable, cancers. 

Another prong in the battle that has brought jaw-dropping positive results is something called adoptive T-cell transfer. This is the stuff of science fiction. And the exciting results it is producing have turned cancer research on its ears.

Using T-cells to kill cancer will put medicine on the cusp of being able to say we have found a cure for cancer. Adoptive T-cell transfer therapy is the most promising technique we have to finally attain the Holy Grail of cancer medicine—to be able to utter those three magical words to the patient: “You are cured!” 

T-cells are our immune system’s killer cells. Think of them in a way as an elite commando force that can seek out and destroy the enemy. The challenge is this: because of mechanisms we are still trying to fully understand, cancer cells camouflage themselves from T-cells. So, how do you make the T-cells “see” this enemy called cancer? If they can see it, they will attack it and destroy it. 

The Best of 2020

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As 2021 begins, we would like to take a moment to highlight a few of our most popular posts from 2020 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2020 one for the books, even during a trying year. Your efforts to Patient Empowerment Network are greatly appreciated!

January

Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

Stage IIB Hodgkin Lymphoma patient, Lindsay, shares her cancer journey from searching for a diagnosis to adjusting to her new mantle of ‘cancer survivor’.

10 Body Signals Warning Health Problems

We should always be aware of what our body is trying to tell us. Here are ten ways our body is signaling that we should be more concerned with our health.

February

How Can You Best Support A Friend With Cancer?

What happens when someone close to you has been diagnosed with cancer? Here are some tips and advice to be the most helpful to cancer patients.

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

Patients need to be aware of the side effects of immunotherapy and vigilant in addressing them with their doctor as they can signal complications.

March

Practicing Self Care In The Time of Coronavirus – How To Mind Your Mental Health And Well-Being During Covid-19

While this is naturally a worrying time, there are many things we can do to mind our mental health and boost our immunity and well-being at this time. In this blog, you will find tips to help you navigate your way through this time of global crisis.

Health Fraud Scam – Be Aware and Careful

This blog explains what healthcare fraud is and provides tips to help you avoid falling victim to these scams.

April

Cutting Through the Panic in a Pandemic

A list of trusted sources to help you cut through all the information that is being share online about the coronavirus pandemic.

Fact or Fiction: Finding Scientific Publications Infographic

This infographic from our PEN Powered Activity Guide shares her tips for finding and understanding scientific publications.

May

Cancer, COVID, and Change

Cissy White gets used to her new normal dealing with having ovarian cancer during a pandemic, and the challenges and benefits that presents.

Diversity in Clinical Trials Benefits Everyone

It is critical that minority groups are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone.

June

Social Determinants of Hope

Casey Quinlan explains that everyone’s social determinants of health have been impacted by COVID19, but she is seeing strong signals of hope.

Music as Medicine: The Healing Power of Music

For cancer patients, music can be a powerful therapeutic tool in coping with a cancer diagnosis and treatment. Here is a list of some crowd favorites.

July

Dealing with a Cancer Diagnosis During COVID-19

There’s never a good time for a cancer diagnosis, especially during a global pandemic. Here are some recommendations from cancer treatment experts.

Quotation Inspiration: 10 Quotes to Inspire, Motivate and Uplift Cancer Patients

A list of 10 quotes and messages of hope and inspiration from patients that can bring you that much needed boost in your day.

August

Turning Your Home Into a Sanctuary

These days we are spending more time at home, so you need to feel like your happy place. Turn your home in a sanctuary in 5 simple steps.

Oncology Social Worker Checklist

Oncology Social Worker, Sara Goldberger, MSSW, LCSW-R, shares her checklist for resiliency during the time of a global pandemic.

September

The Nitty Gritty on Care Partnering

Casey Quinlan provides a short checklist that can be used in any patient-with-a-bedside-care-partner situation.

Are Cancer Survivors More Susceptible To Respiratory Illnesses When Air Quality Is Poor?

A recent study published examines the connection between air pollution and respiratory health among cancer survivors.

October

Patient Empowerment Revisited

In this Part 2, we’ll look at the role of peer to empowerment and explore whether the term “empowerment” is even the right term to use.

The Power of Journaling During Cancer Treatment

This article is meant to help cancer patients understand just how much journaling can help them emotionally and physically during their treatments.

November

The Caregiver Impact: A Vital Part of Healthcare

Network Managers, Carly Flumer and Sherea Cary, team up to discuss the importance caregivers and some quick tips for caregivers.

5 Ways a Patient Portal Can Improve Your Health Care Experience

This blog shares 5 helpful tips for utilizing your patient portal to the fullest.

December

“Wait, There’s a Good Cancer?”

Carly Flumer shares her thyroid cancer diagnosis story and what it’s like being told you have the “good” cancer.

Chronic Myeloid Leukemia (CML) Patient Profile

A patient story from a chronic myeloid or myelogenous leukemia (CML), an uncommon cancer of the bone marrow, patient.

Essential First Aid Tips For Cancer Caregivers

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First aid is an essential skill — however, 70% of Americans feel unprepared for a cardiac emergency because they either don’t know how to administer CPR or their training has significantly lapsed. It’s important for caregivers of cancer patients to be trained in first aid, so they’re fully-prepared and ready to act in emergency situations. This includes knowing how to administer CPR, looking out for the common signs of infection, and helping patients manage the emotional symptoms of cancer.

Administering CPR

Chemotherapy damages healthy cells in the body, including cells in and near the heart. As a result, cardiac toxicity and conditions like arrhythmias (abnormal heart rhythms), congestive heart failure, cardiomyopathy (the heart struggling to send blood around the body), angina (chest pain), and myocarditis (inflammation of the muscular layer of the heart wall) can occur. In these situations, a cancer patient may need CPR, which, if unsuccessful, may need to be followed up with an AED (automated external defibrillator). An AED can help restart the patient’s heart and re-establish the natural rhythm of the heartbeat. First aid training is essential for anyone caring for cancer patients as it covers how to administer CPR correctly. Caregivers should also inform themselves of the patient’s resuscitation wishes in advance.

Preventing infection

Cancer and cancer treatment weakens the immune system, which in turn increases a patient’s risk of infection. Additionally, cancer patients can have a low white blood cell count (neutropenia), which further weakens the body’s ability to fight infection. Symptoms of infection to look out for in cancer patients can include: fever, sore throat, shortness of breath, belly pain, and chills potentially followed by sweating. In this case, caregivers should check the patient’s temperature with a thermometer, keep the patient hydrated, and help them take their medication on schedule. If the patient has a high or low temperature, can’t take fluids, or simply doesn’t seem “right,” take them to the emergency room and let the staff know they’re in treatment for cancer.

Emotional first aid

One third of all cancer patients experience high levels of mental or emotional distress that meets the strict diagnostic criteria for mental disorders, including depression or anxiety. As such, emotional first aid becomes an important part of caring for cancer patients and their emotional health. In particular, anxiety can result in shortness of breath, hyperventilation, and chest pain. It’s therefore essential to learn deep breathing techniques to help affected patients stay as calm and pain-free as possible. Alternatively, depression can manifest symptoms like low mood, irritability, insomnia, excess sleepiness, and suicidal thoughts. Be sure to familiarize yourself with the signs and symptoms of depression and begin an open dialogue with the affected individual to provide them with support and treatment if necessary.

First aid knowledge and skills are an essential part of caring for people with cancer. It’s important caregivers have the right first aid training, knowledge, and skills to help patients in emergency situations.

Bright Hope on the Horizon – Part Two

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Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

Click Here to Read Part 1

(Dec 2020)

I would like to think—hope in fact—that no future cancer patients will have to fight the way I did to get certain treatments, that doctors today could help them prevent that. Oncologists now universally accept this novel concept that each patient’s cancer is different and must be treated differently. Treatment needs to be based, not on it’s  location, but on the unique pattern of gene mutations it exhibits. This understanding has led to the development and increasing usage of a test called Genome Typing. In the simplest explanation, genes are microscopic particles (nucleotides) located on the chromosomes of a cell. The genes instruct the cell to behave in a certain way and perform certain functions. Cancer alters, mutates, a gene to send a different signal to the cell so it  performs, not its normal function, but a function suitable for the cancer’s growth. This pattern of Genetic Mutations is unique to each cancer. Discovering and, possibly, attacking these mutations is called Targeted Therapy. Let’s assume that one patient’s parotid cancer shows the same gene mutations as the other patient’s breast cancer. Therefore, both these cancers need to be treated with the same medicine. The location of the cancer is totally irrelevant.

The problem is that federal agencies and the health insurers are still stuck in the past. My cancer, the salivary duct carcinoma of the parotid is practically a twin of the ductal carcinoma of the breast. It stands to reason that a drug that worked against one is likely to work against the other too. Because breast cancer is very common and parotid cancer is exceedingly rare, it is far, far easier for researchers and drug companies to test a new drug against breast cancer than against parotid cancer. Therefore, they can present convincing data to the FDA to show that a particular new drug works against breast cancer and thus get the approval for its use in breast cancer treatment. Unfortunately, parotid cancer patients, due to their small numbers, are left out in the cold. There are plenty of drugs that are FDA approved for use for breast cancer but none for parotid cancer. This allows the health insurers to refuse payment for most new drugs for patients like me. It becomes an uphill battle, often futile, to fight. I am blessed to have had the wherewithal I did, but not everyone survives the fight.

The simple logic is that if a drug blocks Her2 and successfully treats Her2-positive breast cancer, its use should be approved for any cancer anywhere that is Her2 positive. Unfortunately, this simple logic is lost on many in the hierarchy.  Lately, there have been some encouraging signs that the FDA is moving in this direction. Insurers are still slow to respond but ultimately they will.  Tomorrow is looking better and brighter.

I think of the whole thing in this way: The evolution of cancer treatment is similar to the evolution of how we used telephones. Years ago, in the 1940s and 1950s, we had neighbors sharing the same line, first the crank-up type and then old rotary phones—party lines they were called. It would not be unusual to pick up the phone and learn that your next-door neighbor was already talking on it. You would have to wait—and hope that your neighbor would not blather on for another hour before you could make your call.

Later, we began to see home phones—one house, one line. But still, everyone in the house was on the same line. If you picked it up to make a call, you might hear your brother talking to his girlfriend. You couldn’t get on until he hung up.

Today we have cell phones and the days of the house phone are almost over; the concept of a party line is simply laughable. 

Cells phones of today are highly personalized and sophisticated communication tools. They are configured exactly to specific users’ specifications: their own phone number; the exact amount of memory they need; the number and kinds of apps they want installed; their contact list; their choice of songs, photos, videos, and documents; and even their very personal and confidential data. It is a highly personalized gadget now.

So is cancer treatment.

And that wonderful news is why if there were a better time to have cancer, to have a doctor drop the bad news on you, it is today—right now.

Why is this happening?

On one front, medical science continues to make extraordinary strides. Each new kernel of knowledge accelerates and expands what was previously known—one new discovery leads to five more. Targeted therapy is one example—but a very good one.

On a second front, doctors have begun to expand their knowledge about how to marshal the body’s own defenses, its own immune system, to attack cancer.

Former President Jimmy Carter astounded the world in December 2015 when he announced he was cancer free. Only months before, he had said it was unlikely he would survive the late-stage malignant melanoma that had spread to his brain.

He might have astonished the general public, but medical insiders were not as surprised. Mr. Carter was the beneficiary of a new wonder drug, Nivolumab, and the relatively new concept of immunotherapy for cancer—checkpoint blockade.

Patient Advocates Turned Award-Winning Network Managers

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The Patient Empowerment Network (PEN) is rolling out the red carpet to congratulate and celebrate two of our dedicated and passionate Network Managers, who are being recognized as outstanding patient advocates. Their enthusiasm for helping other patients navigate their cancer journeys exemplifies PEN’s mission of ensuring all patients have the resources they need to access the best possible healthcare and achieve the best possible health outcomes. We are proud of our growing team of Network Managers and grateful for their engagement in the PEN community.

Summer Golden, recognized for her advocacy through the PEN Network Manager program, has been named a Voice of MPN 2020 MPN Hero. The MPN Hero award is given to those who have demonstrated a strong commitment to making a difference in the lives of people with myeloproliferative neoplasms (MPNs). Summer, who lives with myelofibrosis (MF), understands the MPN journey and has helped thousands of patients through the Network Manager Program. She, and her husband, Jeff Bushnell, who became her care partner when she was diagnosed, reach out to patients in the MPN community through e-newsletters, program development, and support groups. Summer makes connections with others through compassion and humor. Yes, humor. She says, “Everyone deals with this diagnosis differently, so whether it’s through education, support, or in my case, comedy, it’s important to face your disease head on and know you are more than a diagnosis.”

Jeff/Summer 2020 MPN Hero Red Carpet Debut from Patient Empowerment Network on Vimeo.

 Dr. Gerri Smoluk was a PEN Acute Myeloid Leukemia (AML) Network Manager and was recently named a finalist for the Reuters Patient Champion Award in the Patient Advocate category. Gerri was a drug development scientist and patient advocate who was diagnosed with AML in 2016. She made it her mission to help patients ask the right questions of their care teams. She used her knowledge to help patients learn about medications for and the latest information about their disease. Using her science background, Gerri developed tangible resources to help other AML patients. She felt she had an advantage and made it her mission to use that advantage to help empower others to make better decisions. Gerri passed away July 27, 2020. Her legacy lives on inspiring other Network Managers to help more patients become empowered.

Gerri Smoluk – PEN AML Network Manager from Patient Empowerment Network on Vimeo.

 The PEN Network Manager program is a volunteer group of patient empowerment ambassadors from around the country. Designed to further enhance health literacy, the program was launched in March 2020 and has grown exponentially. The volunteers engage with PEN’s network of cancer patients and families with the goal of providing support and navigation on their path to empowerment. Find out how you can get involved here.

#patientchat Highlights: A Year in Review: Looking back on 2020 and Ahead to 2021

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Last week we hosted a “A Year in Review: Looking back on 2020 and Ahead to 2021” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

No regrets

“Spread the love”

How can we empower others?

Full Transcript

Bright Hope on the Horizon – Part One

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Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Dec 2020)

Let’s be realistic. There is never a good time to have cancer.

Even today, caution and years of fighting to beat the odds against surviving this insidious enemy have made it an almost certainty that no doctor will ever promise that the cancer will never return. 

You will learn, in the good times, to say, “I’m cancer-free,” or “My cancer is in remission.” And you will hope the remission is permanent, but you will keep that to yourself. 

You will not dare say, “I’m cured. It’s gone. I beat it. It will never return.” 

I learned those rules as a physician and got personally reacquainted during my own struggle, so in due course, I learned to play by them. But the more years I survived and the more knowledge I gained, the more I got calls from friends and friends of friends of friends. 

“How did you do it?” they asked. “What should I do?” 

Very few people have been lucky enough to escape being touched in some way by cancer. They have a friend or a brother or a mother who died, they have an uncle who is in serious condition, or they know the nice woman down the street who was just diagnosed.

I’m happy to be where I am today—a survivor for many years. I’m gratified that people come to me for answers about what to do. 

Now, today, this is what I can tell them.

Medical science is advancing at a break-neck speed. New and exciting discoveries are being made each & every day. We now have a broad and ever-expanding range of targeted therapies. Then there is this whole new field of immunotherapy that has improved the prognosis for so many cancer patients.

Today, we can look back on how we treated cancer as recently as the 1990s and equate it with the Dark Ages—a time when very little was really understood. By comparison to what we know today, treatments thought to be cutting edge in the 1970s and 1980s seem downright primitive. 

In the 1960s and 1970s, for example, doctors treated cancer in a one-size-fits-all manner. There were only a handful of cancer killing chemotherapy drugs that were used to treat every form of cancer in a “one size fits all” thinking—and, of course, with horrible & debilitating side effects. More often than not, a cancer diagnosis was a death sentence.

In the 1980s, things began to change a bit. Doctors would treat breast cancer differently than say, lung cancer, which would be treated differently than kidney or bone cancer.

But that was missing the point as well.

Over time, doctors began to realize that it didn’t matter where the cancer began. They saw that each cancer had its own particular histology and its own unique behavior. 

My cancer is a classic example. It started in the parotid gland but, under the microscope, looked just like the ductal carcinoma of the breast. The fact that it originated from the parotid gland, not the breast, is rather irrelevant. It is basically the same cancer and should be treated the same way. And later, when it spread to the lungs or the bones, it was still the same parotid cancer, not a lung cancer or a bone cancer. It just happened to relocate there. 

My cancer had a life of its own. It was unique. It did not matter where it started from or where it migrated.

Once doctors began to see that, researchers were at the dawn of the new concept of targeted therapies. Each cancer was unique to each patient. The treatment should be individualized, targeted, against that particular cancer based on its unique characteristics, behavior, and vulnerabilities. One size does not fit all.

Click Here to Read Part Two

“Wait, There’s a Good Cancer?”

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When the Luck of the Draw Leads to the Short End of the Stick

Cancer is one of the most feared diseases. Everyone is affected by it in some way, but no one really imagines getting it themselves. So imagine hearing that you got the “good” cancer, a commonly used term for thyroid cancer. That can’t be right. Cancer is cancer…isn’t it? But who are we, as patients, to question what our doctors tell us? They’re the ones who went to medical school and have years of training. But maybe thyroid cancer isn’t that bad?

That’s what I thought when I was told that my cancer was the “good” one by more than one doctor. In fact, one doctor told me that thyroid cancer was “the cancer to have if you had to get it.” I didn’t have any symptoms at the time, so I took these words, spoken to me by medical professionals, as truth. Unfortunately, I learned that there was no such thing as a “good” cancer once I began treatment.

While thyroid cancer is slow-growing, does have a very good prognosis, and can be easily treatable, no cancer is the same. For example, I had the papillary variant of thyroid cancer, a common diagnosis amongst most thyroid cancer patients. I underwent surgery to remove half of the thyroid with the tumor, but my treatment didn’t end there. It was discovered in the pathology report that I had metastasis that was not shown on the original ultrasound that showed the tumor in my thyroid. As a result, I had to undergo a second surgery for the removal of the remaining half of my thyroid. Additionally, I was told by my surgeon that, because of the metastasis, he didn’t know if cancer could be elsewhere in my body, and I would need to undergo oral radiation therapy. “Wasn’t this the ‘good’ cancer?” I thought over and over.

Furthermore, what doctors don’t explain, at least very well in my case, is what not having a thyroid is going to be like. I wasn’t aware of what a thyroid was nor its functions when I was told that it was harboring a tumor. Nor did I know until I had to be placed on a supplement, or rather a replacement, for my lack of thyroid. I learned quickly that the thyroid essentially interacts with every other system in the body through controlling metabolism, heart rate, temperature, energy level, etc. My body slowly adjusted to this new medication with a prescribed dose that was initially “simply a guess” based on my age, weight, and overall health. From there, my healthcare team and I adjust the dose based on how my body responds. If I think about this, especially as a woman, my body goes through many changes as I age, and I’m sure many of them are affected by a properly-functioning thyroid, which I no longer have. I’m not saying that I’m not eternally grateful for their actually being a supplement I can take to, quite literally, live, on a daily basis. What I am saying is that the stigma and the choice of words and phrases surrounding this cancer, perpetuated by medical professionals needs to stop. At the very least, they need to recognize thyroid cancer as a cancer, a diagnosis that inevitably impacts the life, good or bad, of every patient who has this terrible disease well into survivorship.

If you’re a thyroid cancer patient, whether newly-diagnosed, in treatment, no evidence of disease (NED), or anywhere in between, educate and advocate for yourselves. Find doctors who take the time to understand your wants and needs as an individual human being. Never think that your cancer is “less than,” because it matters.

How Can Myeloma Patients Advocate for the Best Care?

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How Can Myeloma Patients Advocate for the Best Care? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg shares advice for myeloma patients on why it’s important to speak up about symptoms and side effects, how to become a better partner in their care, and the role of a second opinion.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Myeloma Treatment Decisions: What’s Right for You Resource Guide

 What Should You Know About Myeloma Treatment Options?

What Should You Know About Myeloma Treatment Options?

Transcript:

Katherine:                  

What is some key advice that you give patients when they’re considering their treatment options?

Dr. Forsberg:             

Well, I think one important one is to always feel comfortable communicating with your provider. I think that there no by the book questions, list of questions, that’re the right questions to ask. I think the more important thing is trying to establish a good working relationship with your treatment team. Myeloma is much more of a marathon than it is a sprint. So, getting comfortable with your team, getting comfortable with a relationship and a partnership that can be often many years in duration, are really critical steps.

So, I think laying that foundation, feeling comfortable asking questions, trying to understand why. Understand how and what are tools to monitor what the myeloma will be and what indicates success or a need for something else. Those would all be critical pieces that I would encourage patients to feel empowered to be part of.

Katherine:                  

Patients can sometimes feel like they’re bothering their healthcare team with the comments and the questions. So, why is it important for patients to speak up when it comes to their symptoms and side effects?

Dr. Forsberg:             

Well, I think feeling comfortable being vocal about what’s going on is one of the key issues to navigating myeloma successfully. Being aware of issues, even if they may seem minor or insignificant, they may be an indicator for something that is emerging in terms of a treatment related side effect that we wanna be aware of. There are treatment side effects that we are willing to work through. But it can be very broad in terms of the spectrum of how we maneuver through different side effects.

And additionally, we always want to be aware of any issues that may be going on that could be a sign for what’s happening with the myeloma. So, trying to be vocal. Not only to understand what’s going on, what our treatments are, how successful are we at any given point in time, where things stand. But also, to make sure that you are putting things on your provider’s radar are key. So, lots of folks want to be good and compliant patients and we certainly appreciate that hope. But being assertive in terms of issues that may be coming up or questions that you may have, can really make for a much more successful long-term relationship in terms of how we manage the myeloma.

Katherine:                  

Well, do you have suggestions on how a patient could feel more confident in speaking up and becoming a partner in their care?

Dr. Forsberg:             

Well, certainly using tools like, if you found your way to this material, I think is a great first step.

Becoming a little bit more versed in the myeloma, in the language of the myeloma, what these tests that we use are. What their results might be. Using a number of great patient specific organizations are great first steps. So, being proactive about learning, to some degree about the myeloma. And then feeling comfortable asking that first questions. Once you begin the process of unlocking the myeloma and demystifying what it is and what these tests mean and where we stand, then that can really build on itself and allow folks to feel more in control of their myeloma and their myeloma journey.

Katherine:                  

And if a patient isn’t feeling confident with their treatment plan or their care, do you recommend that they seek a second opinion or consult a specialist?

Dr. Forsberg:             

Well, I never think it’s a bad idea to think about a second opinion or seeing a myeloma specialist. Even if you feel very comfortable with your treatment plan. Myeloma’s a unique disease and our approaches for it may be somewhat different, person to person.

And your needs as a myeloma patient my change and they may change somewhat abruptly. So, having seen someone who specializes in myeloma as part of your care team, and usually it is a care team. And there’s different models we sometimes work with in terms of both local or primary oncologists, as well as more specialized academic oncologists. We’re used to working through all sorts of models to provide the best possible care for patients. So, I never think it’s a bad idea to ask about that. Because having that more robust team is usually mostly benefit without adding a lot of headache. 

What Is the Patient’s Role in Myeloma Treatment Decisions?

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What Is the Patient’s Role in Myeloma Treatment Decisions? from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Peter Forsberg shares his perspective on how patients fit into the shared decision-making process and their role in helping move treatment forward in a timely manner.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

Download Program Resource Guide

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources:

What Is the Patient’s Role in Myeloma Treatment Decisions?

What Is the Patient’s Role in Myeloma Treatment Decisions?

How Targeted Therapy Works to Treat Myeloma

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities Is Key

Transcript:

Katherine:                        

What do you feel is the patient’s role in the decision, and how does shared decision making come into play?

Dr. Forsberg:             

So, I think it’s always a really important piece of the puzzle to be a part of the decision-making process. Myeloma can be a challenging disease to understand. There are some pretty significant nuances in terms of what our treatment options are and what our goals may be.

So, I think having a patient who is involved in that process, who is actively asking questions. Engaging their provider if something doesn’t make sense. If our goal is not clear. Trying to make sure that you ask that. As oncologists, a lot of what we do involves communication and trying to help bridge gaps between our understanding of diseases and treatments and what patients see and feel and understand.

So, I think it’s really a critical piece of it for patients to ask questions, to engage. Now, I will say that one of the important things is often when the myeloma is newly diagnosed, we do need to move into treatment in a relatively timely manner. So, engaging with that process, being ready to move forward is our key component.

 

Chronic Myeloid Leukemia (CML) Patient Profile

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You would never know that the subject of this Patient Profile is living with cancer, and that’s exactly the way he likes it. Very few people know this patient’s story, even though he’s been living with chronic myeloid or myelogenous leukemia (CML), an uncommon cancer of the bone marrow, for almost 8 years. He is the very definition of an empowered patient. He’s informed, involved, and utilizes the resources available to him. If cancer were a bull, he definitely would have taken it by the horns. He prefers to remain anonymous, but he believes so strongly in being an empowered patient, that he agreed to share his story to encourage others to take control of their own cancer care.

It was March 2013, when he went in for an MRI on an unsatisfactory hip replacement, that his cancer journey began. When the report came back it said that there was a bone marrow infiltration with a high probability of malignancy. “The word malignancy stuck out to me,” he says. He had no symptoms at the time, but he couldn’t ignore the report and knew he needed to take immediate action.

His first step was to confirm that he did indeed have cancer. Coincidentally, he was pretty well connected with a prominent oncologist who diagnosed him with CML, told him it was easily treatable, and referred him to another doctor for treatment.

Not being the kind of guy to accept his fate without thoroughly gathering information, he decided to get a second opinion, and was able to do so through another connection he had. The second doctor confirmed the diagnosis and the doctor referral.

Satisfied that he was in the best possible hands for his specific cancer, he began treatment taking one of the four tyrosine kinase inhibitor (TKI) medications commonly used to treat CML. Unfortunately, he started having intolerable side effects so, in August 2014, his doctor switched him to another TKI. While taking the new medication, he says his liver enzymes went through the roof and he was becoming concerned that he was running out of treatment options. However, once again, he was able to use his connections to get dosage instructions directly from the drug manufacturer, and with a simple shift in dosing, his problem was fixed. His liver enzymes returned to normal and he’s been living well ever since. “If I had to get a bad disease,” he says, “I got the right kind.”

His proactive nature toward his health was essential to the positive outcome he’s living with today. In addition, his connections to high-quality doctors gave him an advantage. He is grateful for that, but he’s also acutely aware that not everyone has the same advantages, and that’s why he appreciates the value of Patient Empowerment Network (PEN). He came across the free programs and resources available on the PEN website while doing his own research about CML. He believes that anyone who is sick should use whatever resources are available to get all the information they can. “The Patient Empowerment Network is a source of information and potential support,” he says. “I’ve told my friends and doctors about PEN because I want to help other people. To fail to do so would be a shame.”

He feels a sincere and urgent duty to pay forward his good fortune and credits that sensibility to his parents and his Jewish heritage. Describing himself as only moderately observant from a religious standpoint, he says he was raised to subscribe to the philosophy that there are only two kinds of Jews. “You either need charity or you give it,” he explains. In his life, he’s been fortunate financially, and so he feels compelled to give. “It’s just who I am, I thank my parents,” he says.

His charitable giving is also motivated by personal loss. His first wife died from an aggressive form of breast cancer, and he later lost a very close friend to myelodysplastic syndromes (MDS) and acute myeloid leukemia (AML), which he refers to as a death sentence. The pain of that loss continues to be palpable and has driven him to set up a foundation, named after his friend, at a leading cancer center that does cutting edge research on MDS, a group of rare and underdiagnosed bone marrow disorders.

Now at 76, with his CML in remission, he’s vibrant and busy and has no intention of slowing down. He continues to stay up to date on CML research because he believes it’s important to be informed about his disease. He serves in a one-on-one mentor program for cancer patients, and he also takes evening courses learning about topics such as the United States Constitution and the Federalist Papers. “I’m lucky,” he says. “With CML I will die with it, not from it.”