PEN Blog Archives

Nourishing Your Body and Mind: Nutritional Advice For Cancer Survivors

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There are few things more confusing to those of us who have had a cancer diagnosis than dietary advice. From conflicting recommendations from well-meaning friends to advice in magazine articles and online blogs, we can easily become overwhelmed with mixed messages.

To bring more clarity to bear on the topic I spoke with registered dietitian Cathy Leman, who is also a survivor of ER/PR+ breast cancer. In this interview Cathy separates dietary fact from fiction and offers some evidence-based tips for eating a nutritionally balanced diet which nourishes body and mind.

Q: One of the most confusing things, particularly for patients who have hormonally driven cancer, is conflicting advice about consuming phytoestrogen foods (such as soy products). What is the latest scientific evidence on this often perplexing subject?

A: This is a topic where it’s critical to know the facts! There are four main classes of phytoestrogens, of which isoflavones, the phytoestrogen found in soy, is one. Within these classes there are analogs (relating to) and derivatives (derived from). It’s common to consider the term phytoestrogen as “one thing”, as well as view the impact of eating phytoestrogen foods to be the same for everyone.

Phytoestrogen means “plant estrogen” (phyto = plant). Plant estrogens are similar to, but not the same thing as the human estrogen we produce in our bodies, called “endogenous estrogen” (endogenous = produced from within). Research on phytoestrogens and hormone-receptor positive breast cancer is ongoing, yet current data generally supports the safety of eating phytoestrogen foods for the general population, women with benign breast disorders, those at risk, and even in survivors of breast cancer.

Scientific literature reports both benefits and risks, yet the unfavorable effects have been mainly suggested based on data from in vitro, animal or epidemiological studies. Clinical studies often report the absence of unfavorable effects.

Another consideration is that the metabolism of phytoestrogens is highly variable among individuals. Differences in gut microflora, use of antimicrobials, intestinal transit time and genetic variation all play a role.

Take home message: further studies are needed, we don’t yet have conclusive results, there are no recommendations to exclude phytoestrogen foods from the diet.

Q: We hear a lot of talk about adding nutritional supplements to our diet. Are these a good idea?

A: Food first! That’s my professional philosophy, and the science supports. There is room for supplementation, yet not just for the sake of supplementing. Diet is the star, supplements, as their name suggests, take the supportive role.

Q: Do you have any tips for cancer patients who are currently in treatment and may lack motivation to cook healthy meals because of taste changes, nausea or fatigue?

A: My expertise is in working with post-treatment survivors, so I always suggest cancer patients seek the guidance of an oncology dietitian for targeted advice to manage these side effects.

Q: Cancer doesn’t just affect our bodies, our emotional and mental health can also suffer too. What’s the role of diet in improving our overall well-being?

A: When we eat well, it helps us feel we’re doing what we can to be well, and it’s empowering to know you’re taking charge of your health. Also, when one improves their diet, other healthy habits tend to follow, such as getting regular physical activity, prioritizing sleep and managing stress. Also, our bodies and minds require certain nutrients for repair and to aid in transport and storage of the building blocks necessary for overall good health.

Q: For those of us diagnosed with breast cancer we run a real risk of treatment induced osteoporosis (loss of bone density). What advice can you offer us to minimize the impact of treatment on our bone health?

A: There’s much to consider with regard to osteoporosis risk. For example, dietary pattern, exercise type and frequency, calcium absorption rates, minerals and other compounds that impact absorption, and genetic risk factors (that’s not an exhaustive list!). I recommend working with a dietitian to asses individual risk and develop a plan to address any areas of deficiency.

Q: Finally Cathy, for readers who may feel overwhelmed by the prospect of overhauling our diet, what’s the one thing we can do right away that can start to move us in the right direction?

A: Abandon the idea of overhauling your diet. Instead, consider making small, incremental, sustainable habit changes over time.

About Cathy Leman

Cathy Leman helps survivors of hormone-positive breast cancer rebuild trust with food and their body, end food fear, confusion, and overwhelm, eat without stress and guilt, and gain peace of mind and confidence about nutrition, exercise and well-being, so they can rebuild their health after treatment.

Cathy is a registered dietitian, nutrition therapist and coach, personal trainer, speaker, and a survivor of hormone-positive breast cancer. Learn more Cathy and REBUILD, her private coaching program here: www.cathyleman.com

Empowered Patients Empower Patients: How to Take Charge of Your Diagnosis

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What comes to your mind when you think of the word “empowerment?” Do you think of a specific person, thing, or event? What about an “empowered” patient? Do you think of a patient or patient advocate who goes above and beyond and fights for their health care, or embodies themselves with a wealth of knowledge about a specific disease? At the Patient Empowerment Network (PEN), we believe that patients have power. They have the power to learn about and understand their diagnosis, find a healthcare team that understands their needs, values, and morals, and support other patients on their cancer journey – all to create better health outcomes. Are you looking to become an empowered patient? Here a few ways:

  • One of the most important things about your journey is that it is your own. No cancer diagnosis is alike, just like no patient is alike. Your story is unique, and the power of sharing your story is unmatched. Storytelling is what connects others and develops strong bonds. Share your story with your family and friends, post about it on social media, and connect with patient advocacy organizations (including PEN!) to share your story across the globe. 
  • Create your own advocacy blog: This article has how-tos and best tips. 
  • Participate in Tweet chats: Tweet chats are chats that occur on Twitter at different times/days using a hashtag. PEN has a tweet chat called #patientchat that occurs every other Friday. These chats are hosted by a variety of organizations around different topics. As a participant, you answer a series of questions prompted by the host. It can be a great environment to express your opinions and talk about your experience. You can find Tweet chats relevant to you by using Symplur’s Healthcare Hashtag Project, which lists hashtags specific to what you’re looking for. You can also see if specific organizations you’re following on Twitter host chats or start your own! 
  • Join a support group in-person or online. There are a number of different organizations that offer support groups (here are some of my favorites!) where you can share your story and hear other’s, ask questions, and relax knowing you’re in a judgement-free environment. 
  • Utilize PEN’s Digitally Empowered Program: This program consists of 10 modules with videos and resource guides to navigate all that technology has to offer including navigating healthcare resources, forming a support network, using social media, navigating your health with different devices and apps, and using telemedicine. 
  • Keep updated on the latest research about your diagnosis, and share what you find relevant to you with your healthcare team and/or on social media. This article explains how to read scientific papers. 
  • Utilize PEN’s online resources tailored to the cancer community, as well as specific cancers, that focus on what to do when you’re newly diagnosed, testing and treatment options, clinical trials, and accessing and affording healthcare. 

Hail to Kale: Spicy Sausage, Kale, and Goat Cheese Pizza

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Hail to Kale: Spicy Sausage, Kale, and Goat Cheese Pizza from Patient Empowerment Network on Vimeo.

Recipe: Spicy Sausage, Kale, and Goat Cheese Pizza

  • 1 lb. pizza dough
  • 4 tsp. extra virgin olive oil, plus more for drizzling
  • 2 large leaves Tuscan kale, ribs removed, leaves torn into 1-inch pieces
  • 1 clove garlic, minced
  • 2 tbsp. chicken broth
  • Kosher salt
  • 2 links spicy sausage, casings removed
  • 1 ripe tomato, seeded and coarsely chopped
  • 5 fresh basil leaves
  • 2 tbsp. crumbled goat cheese

History of Kale

Enjoying a resurgence in popularity in recent years, kale has some controversy between scientists about its exact origins. Kale is said to have originated in Asia Minor and Europe where it has been eaten for almost 4,000 years. But others claim that kale was grown in Europe, especially in Greek and Roman lands, over 2,000 years ago. Some claim that up until the Middle Ages, kale was the most popular vegetable that was eaten. No matter its origins, kale arrived in the United States in the 1600s.

Medical Properties of Kale

Kale boasts a standing as one of the most nutrient-dense vegetables around. Exceptionally high in vitamin K, vitamin A, and vitamin C, kale also supplies nutrients like manganese, potassium, copper, calcium, vitamin B6, and magnesium. Kale is a source of antioxidants that help fight cancer. And zeaxanthin and lutein along with vitamin A in kale help fight degeneration of eyesight and against the formation of cataracts. Kale contains the flavonoids kaempferol and quercetin that studies have shown to be helpful in lowering blood pressure, fighting inflammation, protecting the heart, combatting depression, and in fighting viruses and cancer. Studies have also shown that cholesterol can be lowered by substances in kale that bind to bile acids and then prevent their reabsorption by the body. With its high water content and low amount of calories, kale can be a helpful addition to aid in losing weight.

Surprising Facts About Kale

As a winter vegetable, kale grows well while withstanding cold temperatures and even frost. Encountering frost during its growing process is actually known to improve the flavor of kale. Farmers try to harvest kale after the first frost that converts some of the starches into sugars for better flavor. Previously known as pheasant’s cabbage, kale was used by Greeks in ancient times to sober up and to fight hangovers. As a member of the cruciferous vegetable family, kale is related to collard greens, Brussels sprouts, and cabbage.

Check out our Events Calendar so you don’t miss any of the upcoming Cook & Learn sessions

Power-Packed Pumpkin Hummus

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Power-Packed Pumpkin Hummus from Patient Empowerment Network on Vimeo.

Recipe: Delicious Pumpkin Hummus

  • 1 c. pumpkin purée
  • 1 (15-oz.) can chickpeas, drained and rinsed
  • 1/2 c. tahini
  • 1/4 c. apple cider vinegar
  • 2 tbsp. extra-virgin olive oil
  • 1 chipotle pepper in adobo sauce
  • 1/2 tsp. ground cinnamon, plus more for garnish
  • 1/2 tsp. paprika, plus more for garnish
  • Kosher salt
  • 1 tsp. toasted sesame seeds, for garnish
  • Pita chips, for serving

History of Pumpkin

Known in the U.S. for their uses as jack-o-lanterns and in pumpkin pies for holidays, domesticated pumpkin seeds were first found by archaeologists in the Oaxaca Highlands in Mexico. Though the original variety was different with a bitter flavor and smaller size, historians believe that pumpkins originated over 7,500 years ago in Central America. In North America, pumpkins were among some of the first crops grown for people to eat. The thick flesh of pumpkins was prized for its ease of storage during cold weather when other food sources were scarce. One of the earliest American recipes for pumpkin was for a side dish recipe in the early 1670s, and it later came into use in sweetened holiday dishes in the 1800s.

Medical Properties of Pumpkin

Pumpkin supplies vitamin A, vitamin C, potassium, and fiber that help support healthy blood pressure and healthy cholesterol levels. The liver can also be protected by eating pumpkin, and the fiber in pumpkin aids in health digestion and in maintaining a healthy weight. Vitamin A, vitamin C, and zinc consumed from pumpkin helps to boost the immune system against colds and other viruses. Antioxidants in pumpkin also fight against free radicals to help in aging healthily, and protein and zinc in pumpkin seeds help with recovery when consumed after a workout.

Surprising Facts About Pumpkin

Pumpkin helps protect the liver by removing harmful substances from the bloodstream. Along with their many health benefits, pumpkins can grow to become massive in size. A pumpkin that weighed in at 2,624.6 pounds was recorded in Belgium in 2016. Indigenous people of North America have grown pumpkins as a crop for thousands of years, even before corn and beans were grown as crops. Members of the gourd family, including pumpkins, watermelons, cucumbers, zucchinis, cantaloupes, and others, grow on all the continents of the world except for Antarctica.

Check out our Events Calendar so you don’t miss any of the upcoming Cook & Learn sessions

Patient Profile: Ben’s Diagnosis of Oral Cancer

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Ben has an amazing story. It’s a story of resilience, determination, hope, and perseverance. A story about gaining knowledge and actively participating in the treatment and care of his cancer. In short, this is the story of an Empowered Patient and how he fought for his own life.   

Ben is a 35-year-old single male from New Zealand. A highly intelligent, successful professional whose storybook perfect life came to a sudden jolt in October 2018 when he was diagnosed with a cancer of the tongue. He underwent the surgery to remove most of his tongue, along with a dissection of the left side of the neck. A pathology result revealed a squamous cell carcinoma of the tongue. It also showed that 2 lymph nodes in the left side of his neck were positive for cancer. Per standard treatment protocol, Ben was given radiation therapy after the surgery without a concurrent chemotherapy. There is a growing evidence in the literature that, in such cases where the cancer had spread to the regional lymph nodes, post-surgery chemotherapy given concurrently with radiation therapy reduces the chance of the local recurrence of the disease.  The obvious drawback being that, while this dual attack may be tougher on the cancer, it is also tougher on the patient.  It is my hope that, someday, this standard protocol may change. However, as of right now, it still is the standard of treatment to give just radiation following surgery as it happened in Ben’s case. Unfortunately, it did not work so well.  

Hardly six months after completing this treatment, he had a recurrence of cancer in the left side of his neck in the area of those positive lymph nodes six months ago.  So, his cancer had come back.  A second surgery was done to remove the cancerous lymph nodes followed by another radiation treatment.  His first radiation treatment was given to both sides of his neck as it should’ve been. This time it was limited to the left side of the neck. This time, he did receive a chemo drug but for 2 doses only.  

While he was recovering, Ben came across the story of Diana, as posted on PEN website. Ben happened to know Diana and thought that since Diana responded so well to Keytruda (Pembrolizumab), he would take Keytruda himself. He decided to pay for it out of his own pocket since it was not covered by the health plan. Keytruda is a wonderful medicine, but it’s not a magic pill or a cure-all and does not always work and did not in Ben’s case.  About 4 months after finishing the radiation treatment, poor Ben had another recurrence of the cancer, this time on the right side of the neck. Naturally, he was devastated because he thought that Keytruda had failed him.   

 By this time, Ben and I had been talking about what he should do if the cancer were to came back again. Based upon the information derived from the literature, we felt that he had to have a full dose of chemotherapy concurrent with radiation, either without the surgery or following a surgery. Ben decided that he would like to have that lymph node removed and so the third surgery was performed.   

Following the surgery, Ben underwent a concurrent administration of radiation and chemotherapy. He received Cisplatin, which is a very effective chemotherapy drug in the form of 6 weekly doses while also receiving radiation 5 days a week for 6 weeks. Treatments were completed around March of 2020. 

 It has been about 10 months since, as of February 2021 and, as far as we know, Ben is still cancer-free. For him, this is the longest remission so far. He feels healthy, strong & energetic and is working full-time and enjoying his life. The only problem is that he is so scared of finding another setback that he refuses to go for a follow-up scan, that was due long time ago. I continue to work with Ben to convince him to have the scan done because if the cancer comes back, the sooner we find it, the better we can attack it. I emphasize that another recurrence, while quite unsettling, will not be the end of the road for him and that newer & better treatment options are being discovered all the time.   

Ben had to deal with a whole lot of other medical problems during the past couple of years. Problems that resulted from his cancer and/or his cancer treatments. He developed a great deal of difficulty with swallowing and speech after his tongue surgery, as expected. 

Following his second surgery, Ben developed a paralysis of his left vocal cord. He could hardly speak beyond whispers. Our ability to produce voice is dependent upon the movement of the two vocal cords as they rhythmically move to midline to touch each other and then move apart.  When one vocal cord is paralyzed and cannot move to midline, a firm contact between the 2 cords cannot be established, thus an ineffective voice. 

Ben went to see an ear, nose, and throat doctor who injected a filler substance called Radiesse, into his paralyzed vocal cord. This is meant to thicken it so that the opposite & healthy vocal cord can make contact with the paralyzed one and produce sounds.   

That procedure was less than satisfactory for Ben. His doctor recommended a bigger procedure, a surgery, called Medialization of the Vocal Cord. This involves pushing the paralyzed vocal cord towards the midline by stuffing something behind it. The doctor explained to Ben that he was not sure if this surgical procedure would work any better than the temporary injection of a filler. Luckily, I was able to help Ben. I agreed with his doctor that this surgery may not give a satisfactory result.  I suggested that he should consider getting an additional surgical procedure, called Arytenoid Adduction.  I had been through something similar. The problem with Ben’s vocal cords was not just the paralysis of the left vocal cord, but that both vocal cords were situated at an angle. So, when the doctor fattened the paralyzed vocal cord, it still could not make a firm enough contact with the healthy cord. Arytenoid Adduction surgery straightens the angle of the vocal cords and, combined with the medialization procedure, restores the near normal voice. However, it seemed that Ben’s ENT doctor was not very familiar with this procedure 

So, while he was dealing with his other medical issues, Ben and I were working to find if there was a surgeon in New Zealand who would do the Arytenoid Adduction surgery. Finally, after Ben’s third surgery, when he seemed to be in remission, he decided to tackle the problem of his voice. He found the right surgeon and went for the surgery. It did not go well. 

A most unfortunate complication occurred while undergoing anesthesia and Ben stopped breathing. He had to be resuscitated and an opening was created in his trachea to enable him to breathe.  Obviously, the surgery was abandoned with the recommendation that it be attempted again after a few weeks or months. 

 Ben, being a very smart person, wondered if now would be the better time for the surgery while he still had the opening in his trachea to prevent a similar complication.  I wholeheartedly agreed with his reasoning and suggested that he present it to his doctors. So, he had the second surgery done within 10 days. There were no complications with his breathing this time because he already had an opening in his trachea. The surgery was successfully performed. The trachea opening was closed and Ben has a nice and clear voice now which he is very happy about.   

His bad luck did not stop though because somewhere along the way, he also developed a severe stomach issue called Gastric Dumping Syndrome due to a possible nerve damage during the neck surgery.   This condition causes nausea, bloated feeling, abdominal pain and diarrhea. Luckily, as it often happens in these cases, after some time, his stomach regained its function.   

As is often the case in cancer patients, Ben has suffered from periods of depression. He has handled it very well by seeking the professional help and taking antidepressant medicines. He has valiantly fought through all of his challenges with his intelligence, determination, knowledge, and persistence.  

I think that we all need to admire Ben’s tenacity and his never-ending hope. Recently, he has had genomic studies done on his cancer. Based on the result of those tests, we know that there are certain mutations of the cancer that can be targeted if and when it rears its’ ugly head again. We have options if needed. 

 So, this is the story of a truly empowered patient and how he has changed his prognosis and the course of his illness often as a result of his own initiative.  Not only by cooperating with his doctors, but becoming more knowledgeable about his illness and actively participating in his treatment decisions.  This activism as a patient has often led to a better treatment outcome.   

This is what Patient Empowerment Network is all about. Hope, determination and knowledge. Remember, the knowledge is your superpower.   

Disclaimer: Sajjad Iqbal, MD is a retired physician and rare cancer survivor who routinely supports, mentors and guides other patients through their perilous cancer journeys. Any opinions, suggestions, or advice provided is solely from Dr. Iqbal’s perspective as a well-informed and knowledgeable cancer patient, not as a physician. The patients must discuss their health with their own doctors and follow their advice.  

Advocacy Through Various Mediums with an MPN Patient and Caregiver

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Advocacy Through Various Mediums with an MPN Patient and Caregiver from Patient Empowerment Network on Vimeo.

What is patient advocacy and how can you advocate? MPN Network Managers Jeff and Summer discuss the various ways in which they advocate. In addition to volunteering with PEN, Jeff actively participates in a support group. Summer who is living with MPN has decided to advocate through her humor. Make sure to watch to see a snippet of her stand-up routine! 

“Our challenge to you is, as a patient find a way to give your knowledge of how you’re handling your disease to others and you too can become a strong patient advocate.” 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

Let’s Talk Mental Health #patientchat Highlights

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Last week we held an Empowered #patientchat discussion on “Let’s Talk Mental Health: How are you doing?”. The #patientchat community came together for a lively discussion and below are some highlights.

Top Tweets

Is anything worrying you at the moment?

Do you have tips for when someone is feeling overwhelmed or anxious?

“Be kind to yourself”

 

Full Transcript

How Does COVID-19 Create Sleep Issues for Cancer Patients?

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Are you having sleep problems during the COVID-19 pandemic? A recent Swiss study showed that people’s sleeping hours are more regular during the global crisis, but self-reported sleep quality has decreased, according to Science Daily. Besides that, some groups like cancer patients are more likely to experience sleep deprivation during such challenging times.

There are several factors that might affect the sleep quality of people diagnosed with cancer. They include the diagnosis, cancer treatments, medical bills, and an uncertain future. Stress and anxiety due to coronavirus disease can also cause a disruption of everyday schedules. Sleep disorders themselves can worsen cancer symptoms, which creates a vicious cycle.

Cancer Survivors and Sleep Disorders

Getting a good night’s sleep can already be tough for cancer patients. Studies show that over three-quarters of people with severe disease have sleeping problems, according to the Cancer Treatment Centers of America.

The good news is today’s scientists and physicians have a better understanding than in the past about how sleep works and how to improve sleep quality.

Sleep provides many health benefits for overall physical, mental, and emotional health. This is especially true for people battling severe diseases like cancer. For example, it can boost your body’s immune system, which makes it more effective at fighting off cancer cells.

On the other hand, lack of sleep can have the opposite effect. This can weaken the immune system and slow down recovery from sickness or injury. Serious sleeping disorders can also create an imbalance of the cell-impacting hormones cortisol (stress hormone), and melatonin (sleep hormone).

Sleep: Its Influence on People Living with Cancer (video)

Other Effects

Besides affecting cancer cells and tumors, poor sleep can also have other negative effects related to:

  • Obesity
  • Diabetes
  • Heart disease
  • Heart attack/stroke
  • Mental health
  • Sleep

One theory is that melatonin might be the root cause that affects these health conditions and episodes. However, more research is needed. The body normally produces more melatonin at night as it gets dark outdoors and the human body winds down for rest and repair.

COVID-19 and Sleep Problems

Fun Fact: The acronym COVID-19 stands for corona (CO), virus (VI), disease (D), and 2019 (19). There are various possible factors related to the global epidemic that might affect people’s sleep, even if they haven’t tested positive for respiratory disease:

Anxiety, Stress, and Depression

The ongoing COVID-19 outbreak has become a global financial crisis that could cost the United States alone $16 trillion, according to the Los Angeles Times.

Quarantines, layoffs/furloughs, and school closures have caused stressful situations for people, and it’s even worse for those with severe diseases like cancer.

Even indirect factors like COVID updates have created more stress and duress. This is why it’s important to avoid reading or watching daily news after 7 PM or so. Negative news can affect your psyche and make it tougher to doze off at bedtime. A better option is good news.

Disrupted Daily Doings

The “new normal” during the ongoing pandemic might affect the quality of sleep. More stay-at-home time can cause wholesale schedules in daily schedules. That, in turn, can result in a sedentary lifestyle of sitting down and fewer gym workouts. This can negatively affect sleep unlike the option to make the right selection of mattress.

Blue Light

Studies show that blue light from sources like computer monitors, mobile devices, and fluorescent light bulbs can disrupt people’s sleep patterns.

Besides that factor, people might have more screen time during quarantines and lockdowns as they use their PCs/Macs, tablets, and smartphones to get COVID updates

and interact with friends and family. This can increase the risk of tossing and turning due to insomnia.

COVID-19, Sleep, and Cancer: It’s Complicated

As noted, several factors can negatively affect the sleep quality of cancer patients. When you add factors like a worldwide pandemic to the mix, this situation becomes ultra-complex.

Coronavirus and Sleep

The ongoing COVID-19 crisis isn’t just about the contagious virus itself, which makes it a whole lot more serious than a sleepless night when counting sheep and a warm glass of milk doesn’t seem to work.

Here’s the problem. Your ability to fall asleep and stay asleep during a pandemic probably isn’t related to the respiratory condition itself. Instead, it’s the effects of everyday life that have been turned upside-down because of the virus.

The effects of a global pandemic can include different factors related to work, school, and home. People can also experience emotional problems like worry, anxiety, and depression. Besides affecting your sleep schedule, it can even negatively impact your general health. So it’s a double-whammy.

COVID-19: The Importance of Sleep (video)

Stress and Sleep

While taking steps like picking a comfortable mattress can help you sleep like a baby, stress can have the opposite effect. In fact, insomnia can affect your ability to fall asleep and stay asleep, according to the Cleveland Clinic.

Stress triggered by stress hormones like cortisol can affect various biological processes, including sleep. If you’ve already received a cancer diagnosis, then a viral pandemic can make the situation even worse.

Pandemics and Sleep

The current pandemic can increase stressors and create an uncertain future due to the disruption of everyday life. This is due to extraordinary changes to daily life, including social distancing, virtual work, and home-schooling.

More Sleep for Cancer Patients During COVID Quarantines

Cancer survivors can take some basic steps to get more shut-eye during the current quarantines/lockdowns:

Sleep-friendly Environment

Dark, quiet, and cool rooms can all help to help cancer patients get a good night’s sleep during a global pandemic. It’s important to create a sleep-inducing environment that can help you fall asleep, and then cycle through the five sleep stages multiple times. If you dream you’re probably in ‘deep sleep.”

There are various steps you can take:

  • Minimize artificial lighting with options like night lights and dimmer switches
  • Clear your mind of everything and focus on falling asleep
  • End all daily news consumption before 7 PM
  • Use heavy curtains and blinds to block outside light
  • Avoid heavy meals, exercise, and caffeine/alcohol close to bedtime
  • Ditch all thoughts about the current COVID-19 pandemic
  • Use aromatherapy through sprays, diffusers, and massages at bedtime
  • Delay dealing with personal problems until the next day
  • Eliminate loud sounds and use sleep aids like noise machines
  • Do meditation, yoga, or light exercise to prepare for bedtime
  • Use self-mantras to help you doze off when your mind races
  • Lower the thermostat to about 65°F (18°C) to promote quality sleep

Conclusion

Dealing with the year-long COVID-19 pandemic can be tough enough. The predicament becomes even tougher for cancer patients who must also handle disease-related issues like cancer diagnosis, symptoms, and treatments. That’s why it’s so important for survivors to take steps to stay calm, boost their immune system, and get a good night’s sleep. Sleeping well can help you fight the coronavirus while you battle cancer.

Helpful Oral Care Tips For Cancer Patients

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Around 80% of individuals undergoing myeloablative chemotherapy experience oral complications and conditions, according to professor in cancer and palliative care, Munikumar Ramasamy Venkatasalu. It is crucial for individuals with cancer and their caretakers to know how to sufficiently address conditions that may occur in all areas of health. In this case, it helps to know several helpful oral care tips to help patients maintain proper oral health.

Understand Common Oral Complications

Cancer patients often have a high risk of developing oral complications, as radiation therapy can cause direct damage and break down to salivary glands and oral tissue, according to the National Cancer Institute. Understanding some of the more common oral complications like fibrosis, tooth decay, and periodontitis can help you to spot any early symptoms so they can be nipped in the bud before they become exacerbated with time. Requesting a list of oral complications and their common symptoms from a dentist can help keep information fresh and easily accessible.

Schedule Veneer Cleaning Every Six Months

Veneers are often seen as a good option for cancer patients who have struggled with oral complications. However, just because a person has veneers, it does not mean that they are immune to cavities and gum disease. While veneers — especially porcelain ones — can last an average of 15 to 20 years, proper care and regular cleaning sessions can ensure they last longer. So for those with veneers, scheduling a cleaning session every six months is a must. A cleaning appointment also gives a dental professional an opportunity to give their client an update on the current state of their oral health.

Eat Bone-Building Foods

A good way to keep up a patient’s oral health and stave off any chemotherapy side effects is by ingesting more bone-building foods, according to Cancer.net. Eating more foods that increase the presence of Vitamin D and calcium help keep jaws and teeth strong. Some of the foods that help make bones strong are dairy products and cruciferous vegetables. Other good bone-building foods are nuts like almonds and pecans, as they are a good source of magnesium and phosphorus. Seeds like chia, pumpkin and flaxseed are also good sources of calcium, fiber and omega-3 fatty acids. So not only will a patient’s oral health improve, but other aspects of their health will be boosted as well.

Maintain Brushing And Flossing Every Day

Naturally, the best way to keep oral health up is by relying on good habits like brushing your teeth at least twice a day and flossing regularly. It is recommended that a patient’s toothbrush be soaked in warm water to help soften any bristles to avoid bruising gums that have become sensitive because of radiation therapy. Ask a dentist for special instructions on how to brush and floss to lower the risk of bleeding gums and infection.

Oral health is crucial to general health and overall quality of life. Therefore, cancer patients and their caregivers must be proactive in ensuring that good habits are maintained in order to keep away negative conditions. It is also recommended to keep in touch with the patient’s primary physician and dentist so that they may be able to catch any complications before they fully set in.

Expert Advice: How Can AML Testing Inform Your Treatment Choices?

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What tests should follow an AML diagnosis and why? Dr. Hetty Carraway, an AML specialist from Cleveland Clinic, outlines key testing for patients with AML, how the results impact treatment choices, and provides advice on advocating for yourself, stressing the importance of including a caregiver as part of the conversation.

Dr. Hetty Carraway is Director of the Leukemia Program at Cleveland Clinic. Dr. Carraway cares for patients with acute leukemia and bone marrow failure states. Learn more about Dr. Carraway, here: https://my.clevelandclinic.org/staff/18591-hetty-carraway

Transcript:

Katherine:    

Welcome to Empowered, a podcast by the Patient Empowerment Network. I’m your host, Katherine Banwell.

Today we’ll discuss how you can be proactive by insisting on better AML care and personalized treatment options. Joining me is Dr. Hetty Carraway.  Welcome. Would you please introduce yourself?

Dr. Carraway:   

Hi. My name is Dr. Hetty Carraway. I’m one of the physicians at the Cleveland Clinic. I work as the Director of the Leukemia Program, and I spend most of my time caring for patients with acute leukemia and bone marrow failure states.

Katherine:    

Thank you. Let’s start with the basics. What essential testing should AML patients undergo following a diagnosis?

Dr. Carraway:  

This is a pretty standard workup for patients that have this diagnosis of acute leukemia.

For most of our patients we always evaluate with a peripheral blood count including a complete blood count with differential, typically a comprehensive metabolic panel, and looking at a test called a uric acid, which looks at the cell turnover and the cellular debris in terms of the burden on the kidney. We often will get a bone marrow biopsy with aspirate for patients, and in the diagnosis of leukemia typically that’s already been done.

There are tests that are sent off of that aspirate called a test for chromosomes, whether it’s comprehensive cytogenetics or FISH, for fluorescence in situ hybridization. We’re often testing using a study called NGS or next generation sequencing looking for specific mutations of genes known to be important in the pathogenesis of leukemia.

Furthermore, we often get a test called flow cytometry from that aspirate looking at the markers on top of the leukemia cells that help us to identify the blast population. So, I would say those by and large are the tests in the bone marrow biopsy that we get, which are innumerable and detailed.

They often take some time to get back, so at the time of the diagnosis patients know that they have a diagnosis of leukemia, but those additional chromosome tests or mutation testing that can take up to two weeks if not longer to get back. And so, it’s important to follow up on that information later on and say, has that testing come back? If so, how does that change any of what the decisions are moving forward?

Katherine:  

Genetic testing can often be confused with molecular testing. What’s the difference between the two, and why should patients undergo the testing?

Dr. Carraway:           

The chromosome testing and the mutational testing help us to really classify the risk in terms of the leukemia itself, whether or not that leukemia is responsive to chemotherapy alone, or if it means that there’s a higher likelihood of that leukemia not being controlled with leukemia only.

In that setting, we often then move towards transplant for curative intent in addition to the chemotherapy. The reasons to get the information is to really help us better tailor the therapy for each individual patient. That information really does help us guide not only the upfront therapy for some patients but even the long-term therapy. It can be incredibly overwhelming to have too much information at the get-go, so in some senses it’s better to have these pieces as they unfold over time.

For other patients, they want to know what exactly the plan is going to be A to Z from day one. That is of course more challenging now that it just takes time to get this information. I think what they need to know is that we’re working hard to get that information.

As soon as we get it, we don’t hold back. We reveal and share that information and come together to say, this is what this data or information means, and these are some of the choices that we either recommend that you consider, and these are the risks and benefits to those considerations.

Katherine:    

Let’s look at something that is similar to what you’ve just been talking about. How do test results impact treatment and overall care?

Dr. Carraway:   

When you asked me how come chromosome or genetic information is different than mutational information, the chromosomes can help us to figure out where patients land in terms of prognosis. That information is different than the mutational testing. Both of those pieces can help us figure that out.

The mutational test, I will tell you, does help us figure out are there targets on the leukemia that allow us to use therapy that’s directed to that mutation. The key example I’ll give is a mutation in a gene called FLT3. That particular mutation has an agent now that is F.D.A. approved called Midostaurin, and so once we know that a leukemia harbors a FLT3 mutation we often add a drug called Midostaurin to the backbone therapy that is used for patients.

Now, that’s important, and now there are more and more genes that when mutated we have novel therapies that direct against that specific tag that’s on the leukemia and helps to improve eradication of the disease or control of the disease if you will.

That’s different than the genetic information when we’re looking at chromosomal changes that may allow us to say in the rare instances of  favorable cytogenetics like a translocation of chromosome 15 and 17 consistent with ATL, the treatment for that type of leukemia,  acute promyelocytic leukemia, is very different than what we do for the majority of other leukemias. The prognosis for that leukemia is also very different. It helps to tailor the regimens, and it helps to select specific therapy that may be helpful to each individual patient.

Katherine:    

Dr. Carraway, you just mentioned FLT3. Would you tell us about the common mutations in AML and how these may impact treatment options?

Dr. Carraway:   

There’s a multitude of mutations that we’re now following in patients. The way that we follow them is by doing this next generation sequencing test at the upfront time at diagnosis.

The reason why we’re doing that is because those mutations can regress with therapy, or they can progress where you gain additional mutations that happen as the disease progresses. Even if it’s responding to therapy or as it loses response to therapy and reemerges, it may reemerge with different mutations. As a result of that, it may change what therapy we select. Our ability at this point in being to recommend exactly at what time points we are checking the next generation sequencing we’re still learning right now as to what are the key times to do that testing.

In general, most institutions are doing that next generation sequencing at the time of diagnosis, and then also for some patients before they go to bone marrow transplant and even after bone marrow transplant.

For some of those patients that unfortunately relapse, we’re also making sure to retest the next generation sequencing mutation testing to see are there new mutations that have come about that weren’t there before?

Katherine:   

I understand there’s something called IDH.

Dr. Carraway:   

You were also asking about what other mutations besides FLT3 happen in patients with AML. FLT3 is one such mutation. NPM1 is another mutation that often it frequents patients that have AML. Those two mutations happen in about 30 percent of patients with AML. There are other mutations such as DNMT3A, ASXL1, and TET2 that we typically see in patients with MDS or even a pre-leukemia state called CHIP. For other patients, we have mutations that are targetable like IDH1 or IDH2.

Those two mutations happen in probably 10 percent to 15 percent of patients diagnosed with AML. Why are those important? They’re important because we have oral medications that are pills that patients can take. In the relapse setting for many patients after induction or intensive chemotherapy, they can use these oral therapies to try and control their leukemia. These are pretty exciting.

All of these oral therapies have been approved in the last two to three years in the space of leukemia, so it’s been a game-changer in terms of identifying these mutations and then identifying drugs that target those mutations. It’s really changed the landscape for patients with AML. It’s new information, and that’s why as patients you want to hear about this so you know what questions to ask and you know, can you tell me, am I a candidate for one of these oral medications that is now available for patients with AML?

Katherine:   

What advice do you have for patients when it comes to asking for appropriate testing and speaking up in their own care?

Dr. Carraway:   

This is so important. I think patients are leery to stir the pot or be difficult. I think coming from a place of inquiry, teach me about this, that, or the other thing, help me understand this, that, or the other thing – I would like you to show me why this decision or talk with me about why this decision versus another decision might be better for me compared to somebody else.

I can’t underscore the importance of advocating for yourself and asking questions about why am I getting this drug? What are the side effects to this drug? What is my prognosis? What is different about my case versus somebody else’s situation? How do I best prepare myself in getting ready for the therapy that I’m about to go through?

Those are all important questions that patients should ask. They should certainly have people, if possible in their family be advocates for them. I welcome that, and I think that that’s a really important part of going through this type of therapy for any patient. Your physician should welcome having your involvement in that. Don’t be shy about that. It’s your health, and any investment in that the most important people in that is inclusive of you and your caregivers. They should be a welcome part of the team.

Katherine:    

Dr. Carraway, thanks so much for joining us today.

Dr. Carraway:    

Thank you for the opportunity to be here.

Katherine:     

And thank you to our listeners for joining us for Empowered. Visit PowerfulPatients.org to access resources to help you be a proactive patient in your care decisions. I’m Katherine Banwell.

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

Waiting for the Other Shoe to Drop: Bruce Jackson

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Bruce Jackson is a multiple myeloma patient who recently found Patient Empowerment Network (PEN) as a resource for his cancer journey. This is the second of a two-part series in which he shares his story from diagnosis to living his life with cancer. Read the first part to his story here.

 “Don’t hide the disease, pull it out into the open so that others can get the chance to at least try to comprehend what you may be going through. The catharsis of being able to share has a value beyond measure.”

In my third weekly visit involving my new post-transplant treatment, I made another realization about this treatment journey: things can always get a little trickier. In this instance, I showed up, ready for week three, and soon after my blood draws, the nurse came in and said that we have a problem. My already low neutrophil count, of which the accepted minimum is a 1.0 value, was now down around 0.6, and my platelets, which have largely vacillated around 90 to 110, were now down to 53. My understanding is that 50 is kind of like no man’s land for platelets. When you are taking a drug cocktail involving new drugs, you don’t know what is responsible for the changes to your blood counts, so the decision was made to hold off on the Pomalyst. Now, doing that is all well and good, but for me, the obvious question is, what is my M protein level. It takes about three weeks to get those blood results back, and so, I haven’t seen any of those values since the start of my new regimen.

At this point, you can either worry, or you can test your trust in your healthcare provider. I prefer the latter, but I am also a bit of a control freak and relatively impatient, so I don’t care much for waiting on M protein results. Then, when I have the updated results, what is the next move? There is a lot of “waiting for the other shoe to drop” going on with cancer treatment. I wish I had a more clever way to describe this phenomenon, but the shoe-dropping concept grasps the matter pretty well.

Cancer was in my family with my mom. My mom went from breast cancer, to mastectomy, to five-year remission, to metastasis to lymph nodes, then bones, to demise over a total 12-year period that included chemo and radiation therapy. Her cancer happened back in the 1970s and 80s, and an incompetent doctor simply dismissed a small pea-sized lump as nothing to worry about. As you can imagine that little lump soon led to the need for a mastectomy, and I am convinced that the surgery, while keeping my mom allegedly cancer-free, in fact was allowing the cancer to stew and wait for a chance to reappear. Ironically, the doctor took the same approach with her own breast cancer, except she did nothing in terms of treatment, and she passed soon after getting an advanced diagnosis.

I share this information about my mom because no one should have to go through that kind of process. Self-education is important, but that doesn’t eliminate the need for an expert. I look at it this way: I sell construction chemicals and their proper use involves some very thorough understanding of application conditions as well as the performance properties of a specific material. I would perhaps be regarded as an expert in the construction chemicals realm. I do not expect my oncologist to know anything about construction chemicals, nor would she pretend that she did, but if she had a need for her house, she might take the time to learn, but she still isn’t going to be an expert.

Conversely, I take the time to try to learn about my disease and the treatment involved, but I will not become an expert on treatment any more than my oncologist will become with construction chemicals. All this said, I am not the expert, but I know enough to be able to problem solve, and I am in a position where my oncologist is less familiar with my regimen and what decisions were made that led to going from Velkade to Revlimid. In my case, a big part of it was due to neuropathic side effects which have now been largely addressed by a non-neuropathic drug called Olazapine, which was prescribed to help mitigate the hyper side effects from the DEX steroid. I make this point because there might remain some utility in Velkade as a chemo maintenance drug, especially in the face of the current situation with my new treatment. I know that you can go back to prior treatments, and the fact is that most of these treatments only have a two-year efficacy period anyway. Why not get two more years from Velkade if I can? I have shared the idea with my oncologist with the notion that we don’t just ignore this as an option. Maybe my idea has zero merit, but I still want it first considered and then eliminated accordingly if that is the case. It is important to be actively involved in this process.

During my first hospital visit, I was lying on a gurney, and they were telling me of possible side effects beyond the respiratory and digestive effects. Even in my lousy state I asked about the kind of side effects. When they said that I could have cardiovascular issues, including blood clots or DVTs, I asked how we would know whether I had any DVTs. They said I might feel cramps in my lower legs, and I responded with, “You mean like I feel right now?” The point is, just as I have to ask my customers what they have observed with a construction chemical product as I try to diagnose the issue, so, too, must a doctor diagnose your symptoms, and being non-participatory definitely does nothing to aid your cause.

Put on your thinking cap and ask questions. If you have a caregiver, have them ask questions as well. I use the expression to advocate for yourself. I said that a few weeks ago to my oncologist, and she said, “Well, you’re doing a very good job of that.” I did not say anything in response, but I was thinking, “Heck yeah! This is my life we are talking about!

I will share a story about coaching high school co-ed soccer in the Fall of 2019. It is typical for a parent or parents to coach these teams. My kids are grown, but I still coach, which probably had these kids confused a little. I explained that I had been an assistant coach with the club for several years, and I knew that because of my cancer, I might not be able to continue much longer, so I asked, as the fulfillment of a Bucket List item, to have my own team, and that wish was granted. I didn’t want any assistance, just me.

I told the kids that I had cancer and BOOM, I instantly had their attention. Call it momentary obligatory deference to something serious. I explained to them I had two choices. I could stay at home and feel sorry for myself, or I could come here and have them feel sorry for me. Fortunately, the kids had figured out that I was a bit of a wise guy, so when I said that they laughed, which was my objective. But more important, I wanted to penetrate their 15- and 16-year-old cerebral cortices far enough that they realized I was standing here in front of them making fun of my own incurable cancer. The rest of the story is that this team had lost every single match the year before under a different coach (who by the way, had much more knowledge about soccer than I did), and under me they won every single match that following year, including the Soccer 5 tournament.

Now, that claim is rife with caveats and disclaimers, but here is what I want you to take away from this story: you can do nothing, or you can do something. It doesn’t have to be coaching soccer; maybe it is simply advocating for yourself or advocating on behalf of someone else. I think that perhaps if you stop and ask yourself, “How can I make a contribution to the world around me,” after fair consideration, you will be amazed at what you might come up with as a list of options.

Even though multiple myeloma may be incurable, I can still make a contribution that can leave a lasting impression on the world around me. I have a number of people who tell me they are amazed that I am so strong in the face of my disease. I honestly doubt that is true, but what is true is that, regardless of how hard it may be, I can be transparent in my process, and in so doing have an impression on people who may not have experience with cancer. With my simple openness, I can try to shed the mystery and mystique about the disease. I think that is the most important takeaway. Don’t hide the disease, pull it out into the open so that others can get the chance to at least try to comprehend what you may be going through. The catharsis of being able to share has a value beyond measure.

Read more patient stories here.

Zesty Lemon Parmesan Brussels Sprouts

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Zesty Lemon Parmesan Brussels Sprouts from Patient Empowerment Network on Vimeo.

Recipe: Lemon Parmesan Brussels Sprouts

Ingredients:

  • 1 TBS olive oil
  • Salt and pepper
  • Juice of 2 lemons
  • 1/4 cup shaved Parmesan cheese
  • 2 to 3 cloves of garlic (minced or pressed)
  • 1TBS fresh thyme leaves
  • 1TBS fresh chopped parsley leaves
  • Pinch of red pepper flakes

Directions:

  1. Preheat oven to 400°F
  2. Toss Brussels sprouts in olive oil & sprinkle salt and pepper
  3. Transfer to a parchment lined baking sheet
  4. Place cut side facing down Bake for 30 minutes
  5. Toss half way through
  6. Serve warm spritzed with more lemon juice and top with parmesan cheese

History of Brussels Sprouts

Brussels sprouts, also known as Brussel sprouts, are named after the city in Belgium. Historians believe that they were first grown there in the 16th century and then were introduced to North America by French settlers in Louisiana in the 18th century. Though the flavor of Brussels sprouts is disliked by some – most likely due to a bitter flavor from overcooking – they have a nutty sweet flavor when roasted. With their resemblance to cabbages, Brussels sprouts are also referred to as mini cabbages and remain a favorite among top chefs like Jacques Pepin and many others.

Medical Properties of Brussels Sprouts

Brussels sprouts are rich in several important nutrients for the body including folate, vitamin C, vitamin K, and the carotenoids of beta-carotene, lutein, and zeaxanthin. They are also very good sources of manganese, vitamin B6, dietary fiber, choline, copper, vitamin B1, potassium, phosphorus, and omega-3 fatty acids. Brussels sprouts belong to the cruciferous vegetable family that includes broccoli, cauliflower, collard greens, kale, and cabbage. The processes of cooking and digestion break down to a phytochemical called isothiocyanate that researchers have discovered to have anti-cancer effects in fighting against DNA damage and against growth within tumor cells. Medical experts tout Brussels sprouts for their role in helping with bone and skin health, lowering cholesterol, balancing hormone levels, improving digestion, reducing oxidative stress, decreasing the risk of obesity and diabetes, protecting the heart, reducing inflammation, aiding the immune system, and increasing circulation. Though Brussels sprouts may help fight cancer, experts recommend limiting dietary intake to once a week and to rotate other vegetables into your diet as well.

Surprising Facts About Brussels Sprouts

Brussels sprouts are packed with vitamin C, and one serving of them delivers four times more than an orange. Researchers have found that Brussels sprouts contain Indole-3-carbinol that is a libido booster in men but can have the opposite effect in women. Shoppers can sometimes find Brussels sprouts at grocery stores and farmers markets attached to the stalks that they grow on. Keeping the sprouts on their stalks helps to retain moisture and to nourish the sprouts after harvesting.

Sources:
hsph.harvard.edu/nutritionsource/food-features/brussels-sprouts

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A New Phase: Bruce Jackson

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Bruce Jackson is a multiple myeloma patient who recently found Patient Empowerment Network (PEN) as a resource for his cancer journey. This is the first of a two-part series in which he shares his story from diagnosis to living his life with cancer.

“You can do nothing, or you can do something…maybe it is simply advocating for yourself or advocating on behalf of someone else.”

I guess I haven’t thought of my cancer experience as a story, and yet, that is exactly what it is: a story about a new phase in my life. I have multiple myeloma. More specifically, it is a t(4-14) translocation wherein the 4th and 14th chromosome pairs, instead of minding their own respective business, decided to share their genetic information, and that sharing process is at the basis of the disease. I don’t know if researchers yet know the cause of these translocations; some say that they result from a virus, but I know very little more than that. My 4-14 translocation is deemed a moderately aggressive cancer, but there are other much more aggressive translocations which are functionally a one-year death sentence.

I was diagnosed in May 2009. I was 53 at the time and am now 64. In my case, I was seeing my primary care physician (PCP) every six months for treatment of high cholesterol. She was treating me with a statin drug, and she insisted on doing blood work every six months. The blood work revealed an elevated total protein level, and my PCP suspected cancer, so she sent me to an oncologist who confirmed the diagnosis of smoldering myeloma.

I think there are a couple of points to be made here. One, because of the blood panels every six months, my cancer was caught early. Two, while a smoldering myeloma diagnosis may seem relatively benign, it is not. The question is, when does it morph into something else, into what does it morph, and what do you do in the meantime?

For me, this meant tracking the disease through occasional (every six months) to more frequent (every three months) blood tests to track my M protein value, which is a pretty highly correlated indicator of what is happening in the bone marrow. On a lesser frequency, I would have a bone marrow biopsy, just to see whether what was happening in my blood stream still continued to correlate with what was happening in my bone marrow. When my M protein value was around 0.8, I started to see an oncologist regarding what was initially diagnosed as monoclonal gammopathy of otherwise unspecified origin (MGUS). Then in October 2014, my oncologist was citing M protein values of 3.6, but with no other symptomatic phenomena to address, except that an MRI had shown some very small unidentifiable spots on a few of my ribs and on my sternum. The MRI report suggested that I have a re-do in six months, and that is what happened, except I was now in the hands of a myeloma specialist, and she suggested that we re-test using a CT Scan. The scan revealed growth in the spots, enough so that we were now using the term “lesions”, which was the tipping point to starting treatment.

I started my treatment program as a part of a Dana Farber Cancer Institute study, which required a prescribed regimen of Velkade (a subcutaneous injection), coupled with Revlimid (Thalidomide derivative and sister drug to Pomalyst), and Dexamethasone (a common oral steroid, which generates a synergistic effect that aids in combatting the cancer). In my first cycle, the treatment knocked my M protein value down to less than 1.0. However, in the second round, the treatment induced some unplanned side effects, all at the same time. I experienced blood clots in my lower legs, an obstruction in my digestive tract, pulmonary emboli in my lungs, a half-collapsed lung, a respiratory infection, and a massive headache. This earned me a 10-day stint in the hospital, a paranoid reaction to one of the drugs that I was given, and removal from the Dana Farber study.

Unfortunately, the respiratory infection would not go away, and only six weeks later, it was determined that I needed to have a procedure done, wherein the surgeon puts three holes through my rib cage and inside my pleural cavity with the goal of removing scar tissue from the surface of my right lung so that the medication could reach and eliminate the infection. The procedure earned me 12 more days in the hospital.

The good news is I made it through both events, and I am here to share about it!

It was determined that the Dana Farber dosage was too much for my system, so the solution was to cut the dosage back to about two thirds, and then administer more rounds. My rounds of chemo ultimately led to a stem cell transplant in September 2015. The stem cell transplant was a 21-day hospital stint (which is a typical duration), but as can happen, things didn’t automatically jump-start as expected. After my transplant, everything was jump-starting except my platelets. Fortunately, it seems there is always an alternate plan of attack, and the hematologists were able to prescribe a three-day dose of medication that on day three bumped my platelet count from two to four, and I was on my way. Plan B worked, and I’m glad we did not have to go to Plan C, because I don’t know if there was a Plan C. There were other hiccups along the way. I started having blood clots in my lower legs again, and developed pre-ventricular contractions (PVCs), which feel like a skipped beat, but are actually extra beats, and amount to an arrhythmia of the heart.

After my stem cell transplant, I was given a prognosis of four to eight years, and I was only in partial remission. Once sufficiently recuperated, I had to take Velkade as chemo maintenance. However, because of the subsequent neuropathy, and associated deep venous thrombosis (DVT) in my lower legs, the decision after about two years was to switch to Revlimid. However, the truth of the matter is, your M protein does not stop increasing with the chemo maintenance. It simply increases at a slower rate, and if the drug stops working, problems arise. In my case, the Revlimid worked for another two years, but then things started to happen in 2020.

When the medication stops working, the problems that arise are one of two things: either the rate at which the M protein increases starts to accelerate, or your immune system loses the ability to adequately recover during the seven-day rest period. Your neutrophil (white blood cells) count drops due to the chemo, but if the counts do not climb back up, that means you have to take more days to recover, lower the chemo dosage, or get a booster shot to bump your neutrophils. Any of these options would, of course, allow the cancer to progress at a faster rate. In my case, the neutrophils were dropping and my M protein was climbing, which in essence means the chemo drug was no longer effectively slowing the progression of the disease. It was time to switch to another treatment.

I was given the option to investigate my choices, but because of the myriad options available, that turned into a whole bunch of, “I don’t know”. I finally settled on Daratumumab, Pomalyst and Dexamethasone, with Dara being subcutaneously injected (like Velkade was). Pomalyst is an oral Thalidomide-based sister drug of Revlimid, and Dex is well, Dex. Given that I am only just starting a third post-transplant treatment, I think I am doing well, especially if you consider that I am mid-way through my 12th year post-diagnosis and I am more than five years post-transplant that had an original prognosis of four to eight years.

When you consider where I have been, five years is good so far. I have not had any bones break, my cancer was caught early thanks to a competent PCP, I have only a moderately aggressive translocation, which is much better than more highly aggressive versions, which could have buried me in short order. But what bothers me most, regardless of all the other things that have happened during this experience, is the uncertainty of it all. I feel like I am always waiting for the other shoe to drop.

Learn the rest of Bruce’s story in part two of the two-part series in which he shares his story from diagnosis to living his life with cancer.

Read more patient stories here.

Patient Profile: Sandy Peterson

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When she was diagnosed, Sandy Peterson had never heard of chronic lymphocytic leukemia (CLL), a type of blood and bone marrow cancer, so she got to work learning about it. “I really appreciate the organizations who do research, provide support, and make it easy to access,” says Sandy an avid user of the Patient Empowerment Network (PEN) website, powerfulpatients.org. She says she likes to be able to access the resources whenever she wants or needs to revisit something she learned or read. Sandy follows several other organizations specific to her disease, and says each organization offers something a little different that she can benefit from. “PEN stands out with the activity guides,” she says noting that she especially likes how the PEN-Powered Activity Guides are formatted: like a book, where she can flip the pages and not have to scroll through them. “It’s fun,” she says.

Sandy says she learns a lot from the pages about understanding cancer, but she says she also likes the inclusion of articles that focus on lifestyle. “What I have enjoyed most are the recipes,” she says. She appreciates that they aren’t wild and fancy and that they include ingredients that she usually has on hand or can easily pick up at her local grocery store. Sandy also likes the fitness and the coloring pages and says they provide a pleasant distraction. “I look forward to that activity guide,” she says.

Sandy also values the webinars PEN provides. “The webinars are just wonderful. You can look at them again and do it at your leisure. It’s wonderful, and I’ve learned so much,” says Sandy who says she has gotten familiar with a lot of the presenters in the webinars and she looks forward to them because she appreciates their method of explaining things. Sandy has found that the key to putting her mind at ease and escaping fear about her disease is to understand it, which she says isn’t always easy, especially in the beginning. “Everyone knows what they’re talking about, and you don’t have a clue,” she says. “It’s the alphabet soup of a cancer diagnosis. It’s intellectual overload.”

On top of the intellectual overload that comes with being diagnosed with cancer, Sandy was also recovering from major surgery. It was in February 2011 and Sandy was just shy of turning 70 when she had to have emergency brain surgery. It still makes her emotional to talk about it, and Sandy says she doesn’t remember anything about that weekend, but she does know when she came out of surgery and they told her she was going to be fine, they also told her she had cancer. “I was worried about recovering from the brain surgery and was told it could be years before CLL became a problem for me,” she says. She was assigned to an oncologist, got an overview of her disease, and didn’t think much more about it. She had no symptoms, so she says the word cancer didn’t seem scary. However, she does say she was frustrated that her oncologist kept changing. She started with a hematology oncologist, but after a couple staffing changes, she ended up with a breast cancer specialist. “I didn’t complain because you kind of take who they give you,” says Sandy, but she said it just didn’t feel quite right.

By this time, Sandy had fully recovered from her brain surgery, and she started to do some research about her CLL. She started by looking online for reputable websites. Her tip is to avoid .com websites. The .com stands for commercial, and Sandy says she didn’t want to get her information from anyone who was selling something. “You have to do a little bit of searching to find the resources, but there’s a lot out there to support people who have cancer,” she says.

It was through her involvement with online support communities that Sandy learned she needed to make some changes in her cancer care. She says she kept seeing CLL experts and other patients refer to having treatment teams. “I realized I needed a team,” she says. She had her primary care doctor, and the breast cancer specialist, but she wanted a CLL specialist on her team. She had to go out of state to find one, but she did. After ten years with CLL, Sandy continues to have no symptoms and remains in the watchful waiting phase. Her most recent blood test was in mid-October 2020, and her numbers were essentially the same as they were a year ago. “It’s not going away, but it’s not progressing,” she says. “I am very, very fortunate.”

While Sandy is asymptomatic now, she’s concerned about the eventual progression of CLL. She says she’s not to the point of worry yet, but she wants to be prepared. “If it begins to progress and give me trouble at any time, I want to plan for a less healthy me.” She thinks about the logistics and expense of managing house and lawn care and wants to simplify her life so that if the disease progresses, she has a plan in place for managing those things. “It doesn’t have to be depressing, and you can do it while you’re still in control of the situation,” she says. “We not only want to simplify things for our own benefit, but for those who are going to help us.”

Sandy says she also thinks about what will happen if she ever needs treatment. “I’ve heard horror stories about the costs of treatment, and I don’t know how people pay for it,” she says. She stays on top of the latest CLL treatments and pays attention to the laws being passed about covering medications, and she says she’s open to doing a clinical trial if she has the opportunity. “The treatment picture for CLL is constantly changing,” she says, adding that new treatments are emerging, and more clinical trials are opening up all the time. “It’s really exciting.”

In the meantime, Sandy continues to find enjoyment by accessing yoga or tai chi classes online, staying up to date about her disease, and finding support from her trusted online communities like PEN. “It’s a lot to learn, and it’s changing all the time. The understanding is growing, the treatments are improving, there’s always something new,” she says.

Read more patient stories here.

2020 PEN Annual Report

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Welcome to Patient Empowerment Network’s 2020 Annual Report! We are pleased to share Patient Empowerment Network’s 2020 Annual Report with you. Read through to learn about the progress of the organization and momentum we have gained toward the fulfillment of our mission, none of which would be possible without the support of our community.

 

2020 PEN Annual Report

2020 Highlights